Just a quick post to say that, if I weren't feeling like warmed over death from a lovely little fever today, I'd write more about our looooooong day.
Back to SCCA tomorrow, and I will have even more to tell after that. Tomorrow we meet with the doc who will answer the meaty questions we have (today was a meeting with a nurse, nutritionist, physician's assistant, as well as a blood draw that made me want to bang my head against the wall--but more on that later). Anyway, the nitty gritty will start tomorrow.
As for whether Zoe's cold will delay the start of the transplant, we have yet to learn. They aspirated her nose and will see what sort of nasties are in there.
How bizarre, Jeff's fart machine just went off on it's own accord--and no one pressed the button to activate it. My tired giggles are echoing through my aching, congested and feverish head.
What a surreal day.
Tuesday, December 30, 2008
Sunday, December 28, 2008
After the Storm
The Seattle Snowpocalypse has finally subsided and the streets are dissolving into a slushy slurry of snow-mixed mud. It's amazing how the city can almost completely shut down with the tiniest bit of snow, let alone after the dumping we've gotten in the last couple weeks. We hadn't planned on taking time off for the holidays, but we were forced to--only a handful of clients wanted to try their hand at driving through snow to our house.
Our big excitement lately that Jeff didn't mention in the previous post was some swelling in Zoe's scalp that appeared all of the sudden over the spot in her skull where she had had the most trauma during the surgery. The quarter-sized bump caught my eye 3 weeks ago over her right ear. A call to Cunningham had Jeff taking her in the next day for a viewing and CT scan. The verdict was that they weren't acutely worried, but that we should keep our eye on it.
It doubled in size over the next week and a half. More conversations with the team had them surmising that she had likely "sprung a leak" of cerebral spinal fluid at that location, but that, since her mood was not altered, since there was no accompanying fever, no red inflammation, there was really nothing to be done. It existed in an enclosed system--and, opening her up for any patchwork would only serve to push off the BMT.
Even though the doctors' and nurses' words on the subject were pragmatic, we couldn't help but watch our minds wrestle with this new worry. A leak! Ack! To help us feel better about it neurosurgery scheduled us for another check-up for what was this last Friday the 26th. Somewhere in the middle of the night of Sunday the 21st, Zoe's swelling deflated by 80%. In the morning it was the smallest hint of a bump. The check up on Friday was basically a "yep, probably a small leak--and nope, nothing to interfere with the scheduled BMT."
Phew! And....now she's sick.
It seems like we've already traversed this path. Our efforts to keep her cloistered haven't prevented what seems inevitable in cold and flu season. In fact, we've all got the crud. Of the three of us, Zoe seems the most chipper. Tomorrow at our first SCCA appointment we'll find out what effect this latest development has on her BMT start date.
We are learning to laugh. Well, at least chuckle -- if a little mirthlessly -- at the ongoing bumps in the road. One thing after another. Our minds swing on a jungle-gym of worry, from one rung to the next--all with no real purpose other than to give us the illusion of having any control at all in this mind bogglingly immense experience. We've been telling ourselves to get used to it, that it will likely be a constant stream of perils of varying degrees.
How can it not be? A risky treatment for a fatal disorder. It's all about life and death and becoming accustomed to walking the line between the two. Some days we walk more gracefully than others.
Christmas was a very mellow day for us. Our Postal Service Champions got hit pretty hard by this terrible weather we had. We got a call a couple days before Christmas from the post office saying that, due to the craziness of trying to deal with the snow, no time had been had for shopping for us; they would do it after the holiday rush and thaw.
Carol, our carrier that's been subbing for Robin, showed up on our doorstep later that day with a couple gifts for Zoe and a grocery bag of drinks and sweets. She just wanted to be sure that we had a few goodies for Christmas! Again--the kindness and care being sent our way astounds and humbles me. She had been stuck in a ditch for 4 1/2 hours the day before, the snow was still bad the day we saw her, and yet she stuck her neck out to help make our Christmas special.
Holiday spirit on our doorstep, incarnate.
Of the two presents delivered, one contained a couple of blankets made especially for Zoe by the wife of one of the postal workers. Designed with a blind baby in mind, they were soft and fuzzy on one side and silky smooth on the other. One was large enough to cover her in bed, the other, small enough for her to hold and hug. So sweet!
Tomorrow, finally, are the first of three, maybe four preparation appointments with Seattle Cancer Care Alliance. Funny how that name now rolls off the tongue without the angst and trauma it initially produced in me when we first realized we had to work with them. So much fear of the "Mythic Bone Marrow Transplant"--but it's the only thing that can cure her. And, as her abdomen swells before our eyes from an ever-enlarging spleen trying to do the work of her diminishing bone marrow, we are anxious to get started. And, we are grateful that there is even hope of a cure.
So, folks, let's get 'er done!
Our big excitement lately that Jeff didn't mention in the previous post was some swelling in Zoe's scalp that appeared all of the sudden over the spot in her skull where she had had the most trauma during the surgery. The quarter-sized bump caught my eye 3 weeks ago over her right ear. A call to Cunningham had Jeff taking her in the next day for a viewing and CT scan. The verdict was that they weren't acutely worried, but that we should keep our eye on it.
It doubled in size over the next week and a half. More conversations with the team had them surmising that she had likely "sprung a leak" of cerebral spinal fluid at that location, but that, since her mood was not altered, since there was no accompanying fever, no red inflammation, there was really nothing to be done. It existed in an enclosed system--and, opening her up for any patchwork would only serve to push off the BMT.
Even though the doctors' and nurses' words on the subject were pragmatic, we couldn't help but watch our minds wrestle with this new worry. A leak! Ack! To help us feel better about it neurosurgery scheduled us for another check-up for what was this last Friday the 26th. Somewhere in the middle of the night of Sunday the 21st, Zoe's swelling deflated by 80%. In the morning it was the smallest hint of a bump. The check up on Friday was basically a "yep, probably a small leak--and nope, nothing to interfere with the scheduled BMT."
Phew! And....now she's sick.
It seems like we've already traversed this path. Our efforts to keep her cloistered haven't prevented what seems inevitable in cold and flu season. In fact, we've all got the crud. Of the three of us, Zoe seems the most chipper. Tomorrow at our first SCCA appointment we'll find out what effect this latest development has on her BMT start date.
We are learning to laugh. Well, at least chuckle -- if a little mirthlessly -- at the ongoing bumps in the road. One thing after another. Our minds swing on a jungle-gym of worry, from one rung to the next--all with no real purpose other than to give us the illusion of having any control at all in this mind bogglingly immense experience. We've been telling ourselves to get used to it, that it will likely be a constant stream of perils of varying degrees.
How can it not be? A risky treatment for a fatal disorder. It's all about life and death and becoming accustomed to walking the line between the two. Some days we walk more gracefully than others.
Christmas was a very mellow day for us. Our Postal Service Champions got hit pretty hard by this terrible weather we had. We got a call a couple days before Christmas from the post office saying that, due to the craziness of trying to deal with the snow, no time had been had for shopping for us; they would do it after the holiday rush and thaw.
Carol, our carrier that's been subbing for Robin, showed up on our doorstep later that day with a couple gifts for Zoe and a grocery bag of drinks and sweets. She just wanted to be sure that we had a few goodies for Christmas! Again--the kindness and care being sent our way astounds and humbles me. She had been stuck in a ditch for 4 1/2 hours the day before, the snow was still bad the day we saw her, and yet she stuck her neck out to help make our Christmas special.
Holiday spirit on our doorstep, incarnate.
Of the two presents delivered, one contained a couple of blankets made especially for Zoe by the wife of one of the postal workers. Designed with a blind baby in mind, they were soft and fuzzy on one side and silky smooth on the other. One was large enough to cover her in bed, the other, small enough for her to hold and hug. So sweet!
Tomorrow, finally, are the first of three, maybe four preparation appointments with Seattle Cancer Care Alliance. Funny how that name now rolls off the tongue without the angst and trauma it initially produced in me when we first realized we had to work with them. So much fear of the "Mythic Bone Marrow Transplant"--but it's the only thing that can cure her. And, as her abdomen swells before our eyes from an ever-enlarging spleen trying to do the work of her diminishing bone marrow, we are anxious to get started. And, we are grateful that there is even hope of a cure.
So, folks, let's get 'er done!
Monday, December 22, 2008
Weather outside is frightful
Last night I measured the snowfall in our back yard at 10 1/2 inches.
No more snow today as the temperature finally went above freezing.
The car is shoveled out in anticipation of driving to the SCCA on Tuesday morning for our appointments. What I think of as "The beginning".
Phone rings this afternoon: it's the SCCA telling us that the appointments have to move. They say that with the weather messing up staffing, Christmas break this week, and the fact the Zoe will not need a lot of work up, next week will work for them better.
Ughh!!!
So "The beginning" will start on Tuesday 12/30. With follow-up appointments the next day.
This delay will not effect the dates for transplant and "conditioning".
Meanwhile Zoe continues to grow and heal from the surgery. She delights us each day, and night too!! Still not more than 3-4 hours of sleep at a time. Sometimes less.
Check the "Watch Zoe on YouTube" link and watch the newest video called "Zoe's Eyelashes".
More details as they come.
Friday, December 12, 2008
Welcome to Holland
Last Friday our friend Jon hosted a "FUNdraiser" for us organized through the Lostsahelpinghands website. He called it "Stand and Deliver." The idea was that attendees would stand up and perform anything they would like, while the rest of the room threw money into a hat in appreciation. Cookies and wine were served. It was an altogether civilized busking experience.
Some people sang, others played the piano, one hula-hooped for five minutes (while wagers on how long he could last grew), and two people turned the reading of tame books into racy experiences.
Who knew that a classic Dick and Jane book, and a description of a woodpecker's tongue in a naturalist encyclopedia could be so....so naughty?
Also shared was a piece called "Welcome to Holland." Read aloud by our friend Susanne, she had acquired it while in school to become a physical therapist. It created a tear-fest, so I just had to share it with you here.
---------------------------------------------------------------------------------------------------------
I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
--------------------------------------------------------------------------------------------------------------
Dang it. Still makes me bawl.
Some people sang, others played the piano, one hula-hooped for five minutes (while wagers on how long he could last grew), and two people turned the reading of tame books into racy experiences.
Who knew that a classic Dick and Jane book, and a description of a woodpecker's tongue in a naturalist encyclopedia could be so....so naughty?
Also shared was a piece called "Welcome to Holland." Read aloud by our friend Susanne, she had acquired it while in school to become a physical therapist. It created a tear-fest, so I just had to share it with you here.
---------------------------------------------------------------------------------------------------------
"Welcome to Holland"
by Emily Perl Kingsley
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
--------------------------------------------------------------------------------------------------------------
Dang it. Still makes me bawl.
Monday, December 8, 2008
News
SCCA called today with the latest update on Zoe's transplant.
So, we are to go to SCCA for her first pre-transplant appointments on December 23rd and 24th. If we were from out of the area they would have pushed those first two appointments to after Christmas since people don't like traveling around then. The 23rd she will undergo many evaluation procedures--EKG, scans, etc., etc. The 24th we will meet with her doctor to go through the planning process. Likely there will be a 3rd, as of yet un-scheduled meeting prior to what they are currently projecting as the beginning of her "conditioning", the chemotherapy regimen, on January 11th or 12th.
They say it will be eight days of chemo for her, a day of rest, then the bone marrow transplant on the tenth day--January 20th or 21st. The chemo and transplant dates are tentative--more firm ones will reveal themselves as the process gets hammered down.
It's a mighty ball that they are starting to roll--I have to remember this when I get impatient that they aren't moving fast enough. There are many things to coordinate--not the least is the donor's schedule. As it's past the holidays, I'm hoping that mid-January might be seen by her as a perfect time for a sore hip.
----------------------
Zoe continues to do fabulously. It seems like the surgery has loosened her brain up enough for her to have a personality explosion of sorts. She's the same as she used to be, but, for those of you who grew up reading Homer Price by Robert McCloskey, it's as though she's been sprinkled with a liberal dose of "Ever-So-Much-More-So." She's quite a character who helpfully makes us laugh every day.
She seems to have a lot more energy as well. Especially in the night from about 10pm to 5am. I am learning to accept bags under my eyes as a permanent feature.
------------------------
For those of you who haven't checked the You Tube link in awhile, I forgot to mention that I recently posted three clips of Zoe in the hospital after her surgery.
Peace!
So, we are to go to SCCA for her first pre-transplant appointments on December 23rd and 24th. If we were from out of the area they would have pushed those first two appointments to after Christmas since people don't like traveling around then. The 23rd she will undergo many evaluation procedures--EKG, scans, etc., etc. The 24th we will meet with her doctor to go through the planning process. Likely there will be a 3rd, as of yet un-scheduled meeting prior to what they are currently projecting as the beginning of her "conditioning", the chemotherapy regimen, on January 11th or 12th.
They say it will be eight days of chemo for her, a day of rest, then the bone marrow transplant on the tenth day--January 20th or 21st. The chemo and transplant dates are tentative--more firm ones will reveal themselves as the process gets hammered down.
It's a mighty ball that they are starting to roll--I have to remember this when I get impatient that they aren't moving fast enough. There are many things to coordinate--not the least is the donor's schedule. As it's past the holidays, I'm hoping that mid-January might be seen by her as a perfect time for a sore hip.
----------------------
Zoe continues to do fabulously. It seems like the surgery has loosened her brain up enough for her to have a personality explosion of sorts. She's the same as she used to be, but, for those of you who grew up reading Homer Price by Robert McCloskey, it's as though she's been sprinkled with a liberal dose of "Ever-So-Much-More-So." She's quite a character who helpfully makes us laugh every day.
She seems to have a lot more energy as well. Especially in the night from about 10pm to 5am. I am learning to accept bags under my eyes as a permanent feature.
------------------------
For those of you who haven't checked the You Tube link in awhile, I forgot to mention that I recently posted three clips of Zoe in the hospital after her surgery.
Peace!
Tuesday, December 2, 2008
Knights in Mail
Sorry for the silence in the last week--I took a break from posting.
We have had two hospital visits since I last wrote, one on Monday, November 24th, and one this last Monday the 1st. The blood draws on both of those days showed a continued downward trend in her WBC's and C reactive protein. The downward push on both of those numbers are an assurance that she does not have a hidden infection. Phew! and double that.
She had a CT scan on the 24th that showed her head swelling was pretty well resolved. The only note of concern was how her ventricles looked a little large. The neurosurgery nurse noted that it could be due to the brain not being able to drain the fluid in those spaces. We were told to beware of signs of extreme irritability in Zoe, coupled with vomiting. Greeeeaaaaaaat.
But, as of a week later, she was still fine, and our visit with Cunningham this Monday put that worry to rest. He shook his head dismissively about it being an issue. He said he's seen the ventricles expand in size many times in a child after surgery such as Zoe's. And, upon viewing her lab numbers, he was able allay any lingering concerns about her having osteomyelitis. Both worries were put to rest by the fact that she is doing so well: her animation and good spirits would not be so evident were she harboring infection or suffering from an inability to drain her brain (so to speak).
Both Cunningham's and Hopper's assessment of her yesterday led them both to recommend that her BMT be put into motion. They felt that she would be fine to start 3 weeks from now. The thought makes me a little queasy with nervousness. It needs to happen ASAP, that is clear. But, what could cure her could also kill her, so it's a strange event to welcome.
Whether SCCA will be ready for her to start in 3 weeks is another issue. They need to lock in her donor. As I hope I mentioned before, Zoe does have a donor lined up. What we know is that she is a woman in her late 30's who lives in the US. She does have the right to say that her schedule doesn't allow for a certain start date. Three weeks from now is Christmas, so it would be understandable if she didn't want to undergo surgery at that time. But, it would be such a gift for Zoe should she be up for it.
Thank goodness for the kindness of strangers.
And, on that subject, we were told of the most amazing blessing that is coming our way courtesy of the local post office: this Christmas we are to be adopted by them. !!!!
Carol, the mail carrier, came to tell us this astonishing news today. See, we had struck up a friendship with our usual carrier Robin well over a year ago. When Zoe came he brought her origami art, and he and Jeff swapped origami know-how. He was always interested in what the latest Zoe developments were, and was very concerned when things for her started to take a scary turn. Then, we stopped seeing him--Carol had taken over his route. Inquiries revealed that Robin had messed himself up pretty badly in a running accident--he has been laid out on medical leave for awhile now.
Why this is important to tell you is that Carol said that it was Robin who recommended us as the family to adopt this year for Christmas. She said that originally they had wanted to adopt Robin, but that he was adamant that we needed it more than he. His reasoning was that he had a goodly amount of sick leave stockpiled and that his wife was still gainfully employed. Our being self employed and without sick leave convinced him we needed it more.
So Robin, bless him or drat him (for being too doggedly altruistic in his laid-up state), has won out and convinced his co-workers that we are the ones to be adopted. What that means is that they want us to give them a wish list of things we need, or even a few goodies we want, so they can put them under our tree for Christmas. And we weren't even going to do Christmas this year!
I've cried so many times today. The blessings we are graced with amid our darkest times are truly awe inspiring. Mail carriers! Our blue-clad knights in shining armor. You never know where a champion will come from.
We have had two hospital visits since I last wrote, one on Monday, November 24th, and one this last Monday the 1st. The blood draws on both of those days showed a continued downward trend in her WBC's and C reactive protein. The downward push on both of those numbers are an assurance that she does not have a hidden infection. Phew! and double that.
She had a CT scan on the 24th that showed her head swelling was pretty well resolved. The only note of concern was how her ventricles looked a little large. The neurosurgery nurse noted that it could be due to the brain not being able to drain the fluid in those spaces. We were told to beware of signs of extreme irritability in Zoe, coupled with vomiting. Greeeeaaaaaaat.
But, as of a week later, she was still fine, and our visit with Cunningham this Monday put that worry to rest. He shook his head dismissively about it being an issue. He said he's seen the ventricles expand in size many times in a child after surgery such as Zoe's. And, upon viewing her lab numbers, he was able allay any lingering concerns about her having osteomyelitis. Both worries were put to rest by the fact that she is doing so well: her animation and good spirits would not be so evident were she harboring infection or suffering from an inability to drain her brain (so to speak).
Both Cunningham's and Hopper's assessment of her yesterday led them both to recommend that her BMT be put into motion. They felt that she would be fine to start 3 weeks from now. The thought makes me a little queasy with nervousness. It needs to happen ASAP, that is clear. But, what could cure her could also kill her, so it's a strange event to welcome.
Whether SCCA will be ready for her to start in 3 weeks is another issue. They need to lock in her donor. As I hope I mentioned before, Zoe does have a donor lined up. What we know is that she is a woman in her late 30's who lives in the US. She does have the right to say that her schedule doesn't allow for a certain start date. Three weeks from now is Christmas, so it would be understandable if she didn't want to undergo surgery at that time. But, it would be such a gift for Zoe should she be up for it.
Thank goodness for the kindness of strangers.
And, on that subject, we were told of the most amazing blessing that is coming our way courtesy of the local post office: this Christmas we are to be adopted by them. !!!!
Carol, the mail carrier, came to tell us this astonishing news today. See, we had struck up a friendship with our usual carrier Robin well over a year ago. When Zoe came he brought her origami art, and he and Jeff swapped origami know-how. He was always interested in what the latest Zoe developments were, and was very concerned when things for her started to take a scary turn. Then, we stopped seeing him--Carol had taken over his route. Inquiries revealed that Robin had messed himself up pretty badly in a running accident--he has been laid out on medical leave for awhile now.
Why this is important to tell you is that Carol said that it was Robin who recommended us as the family to adopt this year for Christmas. She said that originally they had wanted to adopt Robin, but that he was adamant that we needed it more than he. His reasoning was that he had a goodly amount of sick leave stockpiled and that his wife was still gainfully employed. Our being self employed and without sick leave convinced him we needed it more.
So Robin, bless him or drat him (for being too doggedly altruistic in his laid-up state), has won out and convinced his co-workers that we are the ones to be adopted. What that means is that they want us to give them a wish list of things we need, or even a few goodies we want, so they can put them under our tree for Christmas. And we weren't even going to do Christmas this year!
I've cried so many times today. The blessings we are graced with amid our darkest times are truly awe inspiring. Mail carriers! Our blue-clad knights in shining armor. You never know where a champion will come from.
Sunday, November 23, 2008
Pictures of the Process
I am posting the least disturbing of the pics that we took, but even so, beware that some of these may be a bit intense to look at.
Right before we handed her off to the anesthesiologist.
The first glimpse we got of her after the surgery. They often kept her uncovered during recovery as she was running a low grade fever.
So many machines for one little baby.
As the days progressed, so did her swelling. This was about day three after the surgery.
In the PICU
Tired Mama.
Tired Dada.
Back at home with a smile. Her head is still swollen.
Today, head is looking like all swelling is gone.
Before surgery.
After surgery.
Before the surgery.
After surgery.
Right before we handed her off to the anesthesiologist.
The first glimpse we got of her after the surgery. They often kept her uncovered during recovery as she was running a low grade fever.
So many machines for one little baby.
As the days progressed, so did her swelling. This was about day three after the surgery.In the PICU
Tired Mama.
Tired Dada.
Back at home with a smile. Her head is still swollen.
Today, head is looking like all swelling is gone.
Before surgery.
After surgery.
Before the surgery.
After surgery.
Friday, November 21, 2008
Home
We did officially arrive home on Wednesday. They originally wanted us to stay until 8pm so that they could give us the training session in injecting the blood thinner then. As we weren't interested in sitting around for the entire day just to get a lesson that night, they allowed us to go home on a "pass" and return that night for the lesson and then official discharge.
Our bed felt amazing that night. Zoe must have thought so too as she was determined not to sleep in hers. She's on a jag where she's mostly awake between 1 and about 5 AM. Well, can't say that this pattern is new. We seem to revisit it often. I think her natural rhythms would have her sleep all day and up all night if we allowed it.
Yesterday's blood draw saw her WBC's go up a little bit, but the word is that they are not jumping on it. Since she's mostly holding steady, her other numbers are good, and she still shows no visible or detectable signs of infection, they have to assume she's doing okay. It still stresses us out to have this be a point of mystery with her. It's not out of the question that she could have an infection somewhere in her.
Meanwhile, we took her to her naturopathic pediatrician today to get her set up with some supportive and immune balancing supplements. Grapefruit seed extract is going to be a challenge though. It's only a drop for a dose, but it is foul tasting. She complained for about an hour after we gave that nasty stuff to her.
We are still trying to catch up on sleep and sanity. Jeff volunteered to be the one to inject Zoe, and he hates doing it to her (can't blame him). Zoe is doing better every day. She "talks" a lot--even when being fed. When she wakes up, the way we know she's up is that she starts to babble. Always puts a big grin on our faces. The girl has got quite a spark.
Our bed felt amazing that night. Zoe must have thought so too as she was determined not to sleep in hers. She's on a jag where she's mostly awake between 1 and about 5 AM. Well, can't say that this pattern is new. We seem to revisit it often. I think her natural rhythms would have her sleep all day and up all night if we allowed it.
Yesterday's blood draw saw her WBC's go up a little bit, but the word is that they are not jumping on it. Since she's mostly holding steady, her other numbers are good, and she still shows no visible or detectable signs of infection, they have to assume she's doing okay. It still stresses us out to have this be a point of mystery with her. It's not out of the question that she could have an infection somewhere in her.
Meanwhile, we took her to her naturopathic pediatrician today to get her set up with some supportive and immune balancing supplements. Grapefruit seed extract is going to be a challenge though. It's only a drop for a dose, but it is foul tasting. She complained for about an hour after we gave that nasty stuff to her.
We are still trying to catch up on sleep and sanity. Jeff volunteered to be the one to inject Zoe, and he hates doing it to her (can't blame him). Zoe is doing better every day. She "talks" a lot--even when being fed. When she wakes up, the way we know she's up is that she starts to babble. Always puts a big grin on our faces. The girl has got quite a spark.
Wednesday, November 19, 2008
Going Home
Today's labs were a qualified improvement. The WBC's were down not as much as they were wanting to see, but down a titch, nonetheless. The absolute bands were down slightly as well. The C Reactive protein was down even more--the indicator of a lessening of overall inflammation.
Again, the numbers are not diving as much as they would like, but the fact that they are down a bit (and certainly not UP) makes everyone hopeful.
So, they are sending us home. Halleluiah.
The checking out process does take its time. We are awaiting the training session on giving Zoe the blood thinner injections (twice a day for the next several weeks). We have to return again tomorrow for yet another blood draw in the afternoon to check that the blood thinner levels are appropriate.
As long as we get to go back home, I don't care how many trips back we have to make.
For all my worry and fear, I hope that I've made it clear that we find Seattle Children's a true blessing in our backyard. The people here are amazing and concerned and accessible. The hospital itself does a great job of creating a cheerful and colorful environment. In a perfect world, adult hospitals would do the same thing. Traveling between floors is much more fun in Rocket Elevators!
Again, the numbers are not diving as much as they would like, but the fact that they are down a bit (and certainly not UP) makes everyone hopeful.
So, they are sending us home. Halleluiah.
The checking out process does take its time. We are awaiting the training session on giving Zoe the blood thinner injections (twice a day for the next several weeks). We have to return again tomorrow for yet another blood draw in the afternoon to check that the blood thinner levels are appropriate.
As long as we get to go back home, I don't care how many trips back we have to make.
For all my worry and fear, I hope that I've made it clear that we find Seattle Children's a true blessing in our backyard. The people here are amazing and concerned and accessible. The hospital itself does a great job of creating a cheerful and colorful environment. In a perfect world, adult hospitals would do the same thing. Traveling between floors is much more fun in Rocket Elevators!
Tuesday, November 18, 2008
Fingers Crossed
Zoe's labs this morning fortunately showed a lower WBC count. I was skeptical at first when I heard that they were lower as we had seen them dip before, only to have them climb the next day. But, according to one of the docs we talked to about it this morning, as her other numbers are down as well (the absolute bands, for those of you who know what they refer to), she is hopeful that this is a sign of things getting progressively better, not worse.
Tomorrow we will know more, and hopefully they will be good things. The big issue is still whether she may have a bacteriological infection that all of the labs and diagnostics used thus far have not been able to catch.
Again, osteomyelitis is the big concern. While not usual, it can present without any accompanying fever or other symptoms. The screening (scintigram) test that is normally used to diagnose it would not work on her in her post surgery state. The cut-up and traumatized bone would definitely flag her in the screen--so it wouldn't be possible to discern a false positive from a true positive result.
Dr. Hopper, the plastic surgeon wanted her to be started on antibiotics for treatment of possible osteomyelitis in his concern about her numbers. Fortunately he is not the one to make the call, and the doctors who are are much more cautious about moving forward with such an approach.
Treatment for osteomyelitis involves at least six weeks, if not more, of antibiotics. Without knowing if she actually has osteomyelitis, let alone what bacteria would be causing it, prescribing the appropriate antibiotic would be a shot in the dark. Treatment would delay the start of her BMT, and could possibly affect the course of her BMT in that she would be starting the transplant with a possible resistance already developed against an antibiotic which may be needed to help her survive the transplant process.
So, the team assembled to make the decision about where we go from here is very aware of and concerned about all of this. We are all fervently hoping that her lab numbers from tomorrow morning's blood draw continue to show a downward trend. They have temporarily stopped her blood thinner shots in case they need to do a lumbar puncture to get a cerebral spinal fluid sample for testing tomorrow if the labs come back elevated. Testing the CSF would only tell us if there is infection in the CSF, not if there is a bone infection.
So, again, pray for lower WBC's--as well as no osteomyelitis!!
We are in a new room due to the pity that the nursing staff have taken on us. We had been in a double room and managed to have three of the four nights we spent there to ourselves. The night we had a young 4 year old room mate and her mother was hellish. It is quite enough trying to manage our own trauma and sleep deprivation, without having a front row seat to another family's pain as well.
Monday night we got word that we would be due for another room mate--this one 6 months old, and when the parents brought him in, screaming. I was ready to join him. A week and a half in the hospital, barely enough sleep each night, and now this? Argh! My sense of self preservation was definitely trumping my capacity for empathy. Our good nurse begged her charge nurse to put us in a single occupancy room, and lucky for us we got moved.
We are now in Giraffe 3007 if anyone needs to know.
The CT scan yesterday actually showed that her head does NOT appear to be leaking CSF into her scalp on the right side. Visually, it looked like her head was growing, but the CSF showed it was not. Phew!
Also, someone mentioned today that they were given the impression by my description of the surgery that it was not successful. Sorry if I have given anyone else that impression. Her head is well put back together, there were some tears and patches made to the dura, and the optic nerve decompression was not attempted as it was ruled too risky based on what they found. CT scans have shown that the main goal of vaulting and reshaping her cranium was successful.
And, if the numbers come back the way we want to see them tomorrow, the surgery will have succeeded with flying colors.
Aside from all the uncertainty about what is percolating inside of our girl, the way she is acting is more and more like the Zoe we know and love. She smiles frequently, kicks, talks and cries like her old self when she's not getting what she wants. She's skinnier than she was, so I'm feeding her as often as she wants to eat.
We just have to work on this new biting jag she's on.
Tomorrow we will know more, and hopefully they will be good things. The big issue is still whether she may have a bacteriological infection that all of the labs and diagnostics used thus far have not been able to catch.
Again, osteomyelitis is the big concern. While not usual, it can present without any accompanying fever or other symptoms. The screening (scintigram) test that is normally used to diagnose it would not work on her in her post surgery state. The cut-up and traumatized bone would definitely flag her in the screen--so it wouldn't be possible to discern a false positive from a true positive result.
Dr. Hopper, the plastic surgeon wanted her to be started on antibiotics for treatment of possible osteomyelitis in his concern about her numbers. Fortunately he is not the one to make the call, and the doctors who are are much more cautious about moving forward with such an approach.
Treatment for osteomyelitis involves at least six weeks, if not more, of antibiotics. Without knowing if she actually has osteomyelitis, let alone what bacteria would be causing it, prescribing the appropriate antibiotic would be a shot in the dark. Treatment would delay the start of her BMT, and could possibly affect the course of her BMT in that she would be starting the transplant with a possible resistance already developed against an antibiotic which may be needed to help her survive the transplant process.
So, the team assembled to make the decision about where we go from here is very aware of and concerned about all of this. We are all fervently hoping that her lab numbers from tomorrow morning's blood draw continue to show a downward trend. They have temporarily stopped her blood thinner shots in case they need to do a lumbar puncture to get a cerebral spinal fluid sample for testing tomorrow if the labs come back elevated. Testing the CSF would only tell us if there is infection in the CSF, not if there is a bone infection.
So, again, pray for lower WBC's--as well as no osteomyelitis!!
We are in a new room due to the pity that the nursing staff have taken on us. We had been in a double room and managed to have three of the four nights we spent there to ourselves. The night we had a young 4 year old room mate and her mother was hellish. It is quite enough trying to manage our own trauma and sleep deprivation, without having a front row seat to another family's pain as well.
Monday night we got word that we would be due for another room mate--this one 6 months old, and when the parents brought him in, screaming. I was ready to join him. A week and a half in the hospital, barely enough sleep each night, and now this? Argh! My sense of self preservation was definitely trumping my capacity for empathy. Our good nurse begged her charge nurse to put us in a single occupancy room, and lucky for us we got moved.
We are now in Giraffe 3007 if anyone needs to know.
The CT scan yesterday actually showed that her head does NOT appear to be leaking CSF into her scalp on the right side. Visually, it looked like her head was growing, but the CSF showed it was not. Phew!
Also, someone mentioned today that they were given the impression by my description of the surgery that it was not successful. Sorry if I have given anyone else that impression. Her head is well put back together, there were some tears and patches made to the dura, and the optic nerve decompression was not attempted as it was ruled too risky based on what they found. CT scans have shown that the main goal of vaulting and reshaping her cranium was successful.
And, if the numbers come back the way we want to see them tomorrow, the surgery will have succeeded with flying colors.
Aside from all the uncertainty about what is percolating inside of our girl, the way she is acting is more and more like the Zoe we know and love. She smiles frequently, kicks, talks and cries like her old self when she's not getting what she wants. She's skinnier than she was, so I'm feeding her as often as she wants to eat.
We just have to work on this new biting jag she's on.
Monday, November 17, 2008
Security Leak
Well, I keep hoping that I can write and tell you all that we're home, but, we're still at Seattle Children's.
Zoe's WBC count was back up again this morning. Infectious Diseases will be coming to talk to us today to see what, if anything, they can come up with. I called her naturopathic pediatrician today to read the lab reports to her. She said that the numbers make her look like she's got some sort of bacteriological infection going on. I'm sure this is not news to the team here, but I wanted to see if the naturopathic perspective would yield something that the allopathic had overlooked.
Nope. Still a mystery why Zoe is spiking the WBC's.
Also, the swelling on the right side of Zoe's head has grown since they patched up her leak at the base of her spine. The cerebral spinal fluid is obviously under pressure and is wanting to shoot out somewhere, so now it's collecting under her scalp where there must be a hole in the dura. As disturbing as this sounds, it's something that they were expecting could happen. Jeff had the conversation with the Neurosurgery ARNP about this while I was at breakfast. As far as he could understand, if she didn't have the issue of the elevated WBC's, we would be home by now, despite the swelling in her head. He isn't certain that's the message she gave him, but that was his impression. The CT scan she had this AM will tell them more about the size of the leak.
Zoe is more alert today--yesterday she was very lethargic due to the regular doses of percoset she required for her pain. Today she's smiling and doing a little more of the vocalizations we are used to.
Jeff and I are stretched, but getting unfortunately used to it. The strange bright spot I think of whenever we are told that we will have to spend yet another night here is that I will get to have another serving of bacon in the morning. The food here is terrible, but we have gotten into a pretty good breakfast groove here. And, the bacon is AMAZING. I think I've had over forty slices since I've been here. The funny thing is, I am not historically a bacon fan. But, this experience is stretching us in many ways...
Zoe's WBC count was back up again this morning. Infectious Diseases will be coming to talk to us today to see what, if anything, they can come up with. I called her naturopathic pediatrician today to read the lab reports to her. She said that the numbers make her look like she's got some sort of bacteriological infection going on. I'm sure this is not news to the team here, but I wanted to see if the naturopathic perspective would yield something that the allopathic had overlooked.
Nope. Still a mystery why Zoe is spiking the WBC's.
Also, the swelling on the right side of Zoe's head has grown since they patched up her leak at the base of her spine. The cerebral spinal fluid is obviously under pressure and is wanting to shoot out somewhere, so now it's collecting under her scalp where there must be a hole in the dura. As disturbing as this sounds, it's something that they were expecting could happen. Jeff had the conversation with the Neurosurgery ARNP about this while I was at breakfast. As far as he could understand, if she didn't have the issue of the elevated WBC's, we would be home by now, despite the swelling in her head. He isn't certain that's the message she gave him, but that was his impression. The CT scan she had this AM will tell them more about the size of the leak.
Zoe is more alert today--yesterday she was very lethargic due to the regular doses of percoset she required for her pain. Today she's smiling and doing a little more of the vocalizations we are used to.
Jeff and I are stretched, but getting unfortunately used to it. The strange bright spot I think of whenever we are told that we will have to spend yet another night here is that I will get to have another serving of bacon in the morning. The food here is terrible, but we have gotten into a pretty good breakfast groove here. And, the bacon is AMAZING. I think I've had over forty slices since I've been here. The funny thing is, I am not historically a bacon fan. But, this experience is stretching us in many ways...
Sunday, November 16, 2008
Doing Better
WBC counts are down today--still high, but the fact that they're starting to trend down is a relief.
Still no signs of infection anywhere. The Infectious Diseases department, upon hearing what has been going on with her, said that they felt everything being done was adequate and that they had nothing to add.
We discovered today that her lumbar drain puncture site was weeping cerebral spinal fluid (CSF), which may account for why we had such a horrible night last night. Zoe was in a lot of pain, crying a high pitched cry which only stopped when she nursed. When she nursed she would bite me a lot--which is not like her. They finally gave her some stronger stuff than tylenol (oxycodone) and she (and we) finally slept at about 5am.
Turns out, the leaking CSF may have been giving her a wicked headache. The pressure change from a leak in a pressure regulated system could have very conceivably caused the pain. They put a stitch in the puncture site this morning, as well as some super glue (!). Should take care of it.
Poor little Z is starting to look like a baby pin cushion.
We are groggy today, but not so worried. I'm feeling good about how she's doing.
Still no signs of infection anywhere. The Infectious Diseases department, upon hearing what has been going on with her, said that they felt everything being done was adequate and that they had nothing to add.
We discovered today that her lumbar drain puncture site was weeping cerebral spinal fluid (CSF), which may account for why we had such a horrible night last night. Zoe was in a lot of pain, crying a high pitched cry which only stopped when she nursed. When she nursed she would bite me a lot--which is not like her. They finally gave her some stronger stuff than tylenol (oxycodone) and she (and we) finally slept at about 5am.
Turns out, the leaking CSF may have been giving her a wicked headache. The pressure change from a leak in a pressure regulated system could have very conceivably caused the pain. They put a stitch in the puncture site this morning, as well as some super glue (!). Should take care of it.
Poor little Z is starting to look like a baby pin cushion.
We are groggy today, but not so worried. I'm feeling good about how she's doing.
Saturday, November 15, 2008
Hanging Tight
We are in the hospital for at least a couple days more.
They are concerned about Zoe's elevated WBC count. Test results are all looking fine so far, but they want to run more diagnostics.
Zoe is starting to act like a baby in pain, but I think that has more to do with finally shaking much of the lingering sedation effects than an indication of developing infection. Conceivably, she's acting like a baby coming down with a cold--prior to cold symptoms appearing. We'll probably know more tomorrow.
Stay tuned.
They are concerned about Zoe's elevated WBC count. Test results are all looking fine so far, but they want to run more diagnostics.
Zoe is starting to act like a baby in pain, but I think that has more to do with finally shaking much of the lingering sedation effects than an indication of developing infection. Conceivably, she's acting like a baby coming down with a cold--prior to cold symptoms appearing. We'll probably know more tomorrow.
Stay tuned.
We Wait
I can see a beautiful blue sky above autumnal colors from the hospital window where we wait, still, for answers about what's going on with our girl.
Her WBC levels were even higher today.
The CT scans she had this morning, one with contrast and one without, showed that her brain and surgery sites are doing fine. No problems have arisen from the use of blood thinners.
But, what is up with the elevated WBC's??
One of the cranio-facial team docs had read that osteomyelitis does happen more frequently in osteopetrotic children. The Infectious Diseases department will be swinging by to talk to us to see if they can figure out the cause of her high WBC count. If they can't, and she still doesn't seem to be coming down with a cold, they will scan for signs of osetomyelitis. Treatment for such a diagnosis would involve weeks of antibiotics.
Let's hope it's just a cold--or--her body's reaction to her nasty diaper rash that she has had raging for the last several days.
On the flip side of this new worrisome development, Zoe continues to do great. She's actually cried and screamed a lot today--and that is really a good sign that she's snapping out of her stupor. She's kicking more and using her arms and hands more.
Another night in the hospital, maybe more.
Her WBC levels were even higher today.
The CT scans she had this morning, one with contrast and one without, showed that her brain and surgery sites are doing fine. No problems have arisen from the use of blood thinners.
But, what is up with the elevated WBC's??
One of the cranio-facial team docs had read that osteomyelitis does happen more frequently in osteopetrotic children. The Infectious Diseases department will be swinging by to talk to us to see if they can figure out the cause of her high WBC count. If they can't, and she still doesn't seem to be coming down with a cold, they will scan for signs of osetomyelitis. Treatment for such a diagnosis would involve weeks of antibiotics.
Let's hope it's just a cold--or--her body's reaction to her nasty diaper rash that she has had raging for the last several days.
On the flip side of this new worrisome development, Zoe continues to do great. She's actually cried and screamed a lot today--and that is really a good sign that she's snapping out of her stupor. She's kicking more and using her arms and hands more.
Another night in the hospital, maybe more.
Friday, November 14, 2008
Not Home Yet
Well, we were so close to going home today--we thought we were going to be discharged at any moment for hours today. But, blood draws today noted that Zoe's white blood cell count was elevated. She doesn't show symptoms of infection, which elevated WBC counts can point to. They (and we) are hoping that the high levels are due either to a reaction to all of the blood she received, or an oncoming cold that would be easily brought on by too long on the ventilator.
Tomorrow they will check to see where her WBC levels are at. Hopefully, they will be lower than today.
Also, the neurosurgeon does want her to have a couple shots of a lower strength blood thinner to start to treat her clot. He said that he has seen how a blood clot in a baby's leg has led to the leg being lost. (uh, yikes!) She got a shot tonight, and will have one tomorrow morning. Then she will go for yet another CT scan to see whether the blood thinner dose has had any negative effects on her surgical sites.
Zoe is more and more herself--however slowly that is going. Today she rediscovered her hands to suck on. Never was a loud slurpy sound so musical. Go Zoe!
Another night in the hospital. Boy, do I miss my bed!
Tomorrow they will check to see where her WBC levels are at. Hopefully, they will be lower than today.
Also, the neurosurgeon does want her to have a couple shots of a lower strength blood thinner to start to treat her clot. He said that he has seen how a blood clot in a baby's leg has led to the leg being lost. (uh, yikes!) She got a shot tonight, and will have one tomorrow morning. Then she will go for yet another CT scan to see whether the blood thinner dose has had any negative effects on her surgical sites.
Zoe is more and more herself--however slowly that is going. Today she rediscovered her hands to suck on. Never was a loud slurpy sound so musical. Go Zoe!
Another night in the hospital. Boy, do I miss my bed!
Out of PICU
Sorry for the absence of an update yesterday--we both had hit a wall and just couldn't muster the energy to log on. Zoe is still doing better and better. We were released out of the PICU yesterday evening and are now, finally, on the surgical recovery floor. Next stop, home.
As you read, two days ago Zoe was finally extubated in the morning. While it was a great thing to finally have happen, it was a very long day for us. She wasn't allowed to nurse until she showed signs of returning to her "normal" self. She was sluggish and out of it all day. If they really made us wait until she was her normal self, we'd still be waiting now. A doc finally agreed that she was at least alert enough to nurse. It took her about a minute to remember her nursing technique--and then she was her voracious little self.
She continues to be alert, but still is not really herself. She lies in the bed, or in my arms, in a dopey state. She acts more like a newborn in her "not quite all there"ness. She is very floppy when we pick her up--she acts as though her arms are too heavy for her to move.
In our growing concern about this (is she brain damaged???) we asked the neurosurgical and plastics teams whether this was normal. They assured us that it was. The drugs she was given while being on the ventilator for a week leave the body slowly. They said to expect that it could take two or three weeks for her to get back to her recognizeable self.
They are still very happy with her progress. The latest CT scan yesterday showed that her brain was still holding steady. There is some fluid retention on the right temporal side, but on the outside of the skull. The area of hypodensity is unchanged.
The main concern for now is that she developed quite a large blood clot in the lateral iliac vein in her left groin area where they had placed the central line. They can't put her on blood thinners yet to deal with it as she is still too recently a surgery patient. The word is that it's not an acute danger to her, that her body will deal with it by redirecting blood to the capillaries around it and working to absorb the clot on its own. We are waiting to see a hemotologist to see what they want to do on an intervention level.
In our new hospital room (Giraffe 3010) we have a bathroom that we are allowed to use (we had to take a hike down the hall in the PICU and then pass through security to return to the room everytime we needed to relieve ourselves), we can eat in the room (couldn't in PICU), and we can have our cell phones on. Nicer to be less controlled, but ultimately we just want to go home!
While it was told to us that going home today might be a possibility, with how methodical they are around here, I won't be surprised if we have to spend another night.
As you read, two days ago Zoe was finally extubated in the morning. While it was a great thing to finally have happen, it was a very long day for us. She wasn't allowed to nurse until she showed signs of returning to her "normal" self. She was sluggish and out of it all day. If they really made us wait until she was her normal self, we'd still be waiting now. A doc finally agreed that she was at least alert enough to nurse. It took her about a minute to remember her nursing technique--and then she was her voracious little self.
She continues to be alert, but still is not really herself. She lies in the bed, or in my arms, in a dopey state. She acts more like a newborn in her "not quite all there"ness. She is very floppy when we pick her up--she acts as though her arms are too heavy for her to move.
In our growing concern about this (is she brain damaged???) we asked the neurosurgical and plastics teams whether this was normal. They assured us that it was. The drugs she was given while being on the ventilator for a week leave the body slowly. They said to expect that it could take two or three weeks for her to get back to her recognizeable self.
They are still very happy with her progress. The latest CT scan yesterday showed that her brain was still holding steady. There is some fluid retention on the right temporal side, but on the outside of the skull. The area of hypodensity is unchanged.
The main concern for now is that she developed quite a large blood clot in the lateral iliac vein in her left groin area where they had placed the central line. They can't put her on blood thinners yet to deal with it as she is still too recently a surgery patient. The word is that it's not an acute danger to her, that her body will deal with it by redirecting blood to the capillaries around it and working to absorb the clot on its own. We are waiting to see a hemotologist to see what they want to do on an intervention level.
In our new hospital room (Giraffe 3010) we have a bathroom that we are allowed to use (we had to take a hike down the hall in the PICU and then pass through security to return to the room everytime we needed to relieve ourselves), we can eat in the room (couldn't in PICU), and we can have our cell phones on. Nicer to be less controlled, but ultimately we just want to go home!
While it was told to us that going home today might be a possibility, with how methodical they are around here, I won't be surprised if we have to spend another night.
Wednesday, November 12, 2008
A SLOOOWW DAY
At around 7:30 PM tonight it became official, one week in the PICU, and counting. Who would of thunk it?
This morning a little after 8:00 AM they pulled out the ventilator tube. A few coughs and suctions and she was breathing fine.
The word was once she shows signs of "normal" activity, they would let her breast feed. Well, that took all day. Lots of talking, singing, touching and worry.
At a little after 7 PM she was alert enough to get the OK to feed, and feed she did!! That's the Zoe I know!!
I am sure Kellie will follow with the details if she can recall them from her sleep deprived over stressed brain.
Off to bed I go, knowing Zoe's belly is full of goodness.
This morning a little after 8:00 AM they pulled out the ventilator tube. A few coughs and suctions and she was breathing fine.
The word was once she shows signs of "normal" activity, they would let her breast feed. Well, that took all day. Lots of talking, singing, touching and worry.
At a little after 7 PM she was alert enough to get the OK to feed, and feed she did!! That's the Zoe I know!!
I am sure Kellie will follow with the details if she can recall them from her sleep deprived over stressed brain.
Off to bed I go, knowing Zoe's belly is full of goodness.
Tuesday, November 11, 2008
Surrender
She is still not extubated.
They had her down to only a little bit of morphine early today. But, as she continued to sleep like one more heavily drugged they stopped it all together to encourage her to wake up. She did so here and there and acted like our sweet little Zoe, but they were looking for a state of wakefulness that would have her really stuggling and fighting to get the tube out. Her state was more of one who was happy and relaxed, content to feel whatever was under her wiggling fingers and toes, not one who was irritated with her situation.
Perhaps our little ZEN girl is too Buddha-like in her temperament.
Now she dozes in the evening, leaving us to think that it may be yet another day before the little girls decides to truly join the waking world. She's forcing us to slow down to her schedule. Her little body is doing a fine job of healing her, so we have to trust that it knows what it's doing.
And, just to be clear--she really is doing great. Everyone assures us of that. Who knows? She may be extubated in the night. I will be sleeping here again this night in that event so that Mama can hold her immediately!
I'm doing better tonight--my dear friend Risa came to give me a Thai massage in small conference room here, and I was reminded that I do, in fact, have a body below this agitated head of mine.
They had her down to only a little bit of morphine early today. But, as she continued to sleep like one more heavily drugged they stopped it all together to encourage her to wake up. She did so here and there and acted like our sweet little Zoe, but they were looking for a state of wakefulness that would have her really stuggling and fighting to get the tube out. Her state was more of one who was happy and relaxed, content to feel whatever was under her wiggling fingers and toes, not one who was irritated with her situation.
Perhaps our little ZEN girl is too Buddha-like in her temperament.
Now she dozes in the evening, leaving us to think that it may be yet another day before the little girls decides to truly join the waking world. She's forcing us to slow down to her schedule. Her little body is doing a fine job of healing her, so we have to trust that it knows what it's doing.
And, just to be clear--she really is doing great. Everyone assures us of that. Who knows? She may be extubated in the night. I will be sleeping here again this night in that event so that Mama can hold her immediately!
I'm doing better tonight--my dear friend Risa came to give me a Thai massage in small conference room here, and I was reminded that I do, in fact, have a body below this agitated head of mine.
--------------------
Incidentally, in case you didn't notice, there have been a couple of recent posts done by other people. Jeff wrote the last entry, and our friend Jon has been added as a contributer to the blog so that he can coordinate help for us (the "posted by" at the bottom of each entry indicates the author). So many of you have been so wonderful in asking how you can help, and now we finally are getting to a place where there will be direction in that. In case you missed his post, scroll back to the entry entitled "Lots of Helping Hands" to get the scoop.
Thank you, dears!
Monday, November 10, 2008
Almost there
It is a little before 10pm and I've just got back home to sleep in our bed. Zoe is doing well. After ten hours of breathing on her own the ventilator has been set back to help her breathe. I could see the ease run through her small body as she went into a deeper sleep. She twitches her arms and legs and then follows that with some small movements of her toes and fingers. All very familiar movements that tell me our little girl is coming back to us.
The waiting is excruciating, exhausting and a must.
The staff at the PICU are amazing. I just surrender to there skills. For the first time in months I can relax just a little inside when I walk away from her knowing that she is in very skilled hands.
They really do care about her and want to do know harm. All the doctors, nurses and respiratory folks want to make sure that every step we take forward be a success. Her body will tell us when we take the next step. All is looking good in a post major cranial surgery four plus days in an ICU kinda way.
So we wait.
The waiting is excruciating, exhausting and a must.
The staff at the PICU are amazing. I just surrender to there skills. For the first time in months I can relax just a little inside when I walk away from her knowing that she is in very skilled hands.
They really do care about her and want to do know harm. All the doctors, nurses and respiratory folks want to make sure that every step we take forward be a success. Her body will tell us when we take the next step. All is looking good in a post major cranial surgery four plus days in an ICU kinda way.
So we wait.
Big Sigh
No extubation today so far, and probably not until tomorrow. No extubation means no allowing her to come out of sedation completely. She is mostly doing well, but they are concerned about how hard she is working to breathe on her own. She breathes rapidly and shallow, and her chest is working very vigorously with each breath.
She has still been spiking fevers, so they are going to run another blood culture on her. Her breathing is starting to sound ragged and liquidy. People are on ventilators for a long time run an increased risk of complications and infection from the liquid that collects and cannot be expelled by customary coughing and throat clearing.
The issue is that if she doesn't do well off the ventilator, they don't really have the option of putting her on a C-PAP machine to help her breathe as it requires that she wear a tight strap around her head to keep it on. Neurosurgery nixed that idea because it would put too much pressure on her tender skull and brain.
Without the option of a C-PAP machine then, if she were to fail breathing on her own, they would have to intubate her again. They can't be guaranteed that it will go as smoothly as a couple nights ago when they had to intubate her after she extubated herself. Again, the longer one is on a ventilator, the more complications can arise.
They want to wait until it is pretty clear that she will succeed with extubation and breathing on her own before they proceed.
They aren't acutely worried at the present. But, I'm not so sanguine. I'm impatient and stretched and cranky and have an ever growing hair trigger that Jeff steps on more and more often (unfortunately for him). My mind wants to latch onto anything it can worry about.
Somebody take me out back and shoot me.
She has still been spiking fevers, so they are going to run another blood culture on her. Her breathing is starting to sound ragged and liquidy. People are on ventilators for a long time run an increased risk of complications and infection from the liquid that collects and cannot be expelled by customary coughing and throat clearing.
The issue is that if she doesn't do well off the ventilator, they don't really have the option of putting her on a C-PAP machine to help her breathe as it requires that she wear a tight strap around her head to keep it on. Neurosurgery nixed that idea because it would put too much pressure on her tender skull and brain.
Without the option of a C-PAP machine then, if she were to fail breathing on her own, they would have to intubate her again. They can't be guaranteed that it will go as smoothly as a couple nights ago when they had to intubate her after she extubated herself. Again, the longer one is on a ventilator, the more complications can arise.
They want to wait until it is pretty clear that she will succeed with extubation and breathing on her own before they proceed.
They aren't acutely worried at the present. But, I'm not so sanguine. I'm impatient and stretched and cranky and have an ever growing hair trigger that Jeff steps on more and more often (unfortunately for him). My mind wants to latch onto anything it can worry about.
Somebody take me out back and shoot me.
Lots of Helping Hands
Hi, I'm writing to help with a website called "Lots of Helping Hands." The design of the site is to coordinate basic domestic needs for Jeff and Kellie. So that they don't have to think about going grocery shopping, eating healthfully, cleaning house, etc... They are walking on an extreme tight rope thru the most intense terrain and need to keep their focus on each step they take with Zoe and each other...NOT on coordinating a phone tree and their domestic needs, and especially not on taking care of us when we want to help them take care of themselves.
So...this is how I remember it: Go to this link - in fact you may want to bookmark it - www.lotsahelpinghands.com/c/608401/ - you'll see a sign in page that offers "already a member" and "interested in becoming a member." Under the "interested" part is a "contact a coordinator" option. Click on it. Now you are on a page where you can e-mail a coordinator. Click on "select a recipient" and pick me - jon howe - fill-in the rest and click "send." I will then register your e-mail address with the site. I think you will receive an e-mail saying the site will now recognize you as a member. Again, click on the link, now, when you click on "interested in becoming a member" the site should recognize you, follow the thread to create your own password, click on "sign-in" and you should be looking at a new page. Before going too far, click on "learn more about the system." That may save a lot of questions and confusion.
Okay, on the left, click on the calendar tab. When Jeff and Kellie get a better idea of what we can do for them (the calendar is empty now), start signing up for delivering a meal (or, for those of us who are out of town or can't cook that day, calling a restaurant that delivers - I will try to post some phone numbers of restaurants or services where you can order or contribute to an J&K's account), cleaning house, etc... Note, in the upper right hand corner of the first page is a "sign out" tab and a "tell a friend" tab. "Tell a friend" gives you a way to expand the "helping hands" community for J, K & Z, and to include anyone who might be feeling left out - again J,K & Z can't afford to worry about peoples' feelings right now. So please don't feel left out (which you hopefully won't if you are reading this).
This system runs pretty smoothly once we get over the first bumps and get used to it. It makes life easier instead of harder. So please bear with it at first. Now...I just need to get together with J & K and post their needs on it. You won't find much there right now. Until then, thank you for your love and witnessing of J, K & Z. I doubt we can know how sustaining and worthwhile our love is in even the smallest gestures, for them AND for us. Namaste'.
Sunday, November 9, 2008
Sunday
Last night was uneventful--phew! I think I slept more last night than I have the three nights prior. I'm getting used to the beeps and buzzes in the PICU, strangely enough.
Zoe continues to do well under sedation. Her face is starting to look a little less swollen; I can just see some inklings of cheek contour.
Her CT scan this morning showed her brain unchanged. She still had the same place of hypodensity in the right frontal region, but, as it did not look any worse, neurosurgery was pleased.
Today her scalp drain was pulled out and they have started to wean her off of morphine. They have also adjusted the ventilator so that she is required to do more of her own breathing.
The plan is that they will take her in for another CT scan tomorrow morning to determined if it is safe to extubate her and bring her out of sedation.
Boy, do we hope so! It's been too long of a time not being able to hold our baby.
Zoe continues to do well under sedation. Her face is starting to look a little less swollen; I can just see some inklings of cheek contour.
Her CT scan this morning showed her brain unchanged. She still had the same place of hypodensity in the right frontal region, but, as it did not look any worse, neurosurgery was pleased.
Today her scalp drain was pulled out and they have started to wean her off of morphine. They have also adjusted the ventilator so that she is required to do more of her own breathing.
The plan is that they will take her in for another CT scan tomorrow morning to determined if it is safe to extubate her and bring her out of sedation.
Boy, do we hope so! It's been too long of a time not being able to hold our baby.
Saturday, November 8, 2008
Saturday (I think)
I arrived back at Seattle Children's this morning at 6:30am. The word was that Zoe had done great---until she somehow knocked her breathing tube out at 4am when the nurse had her back turned for a couple minutes. Her oxygen levels dipped, but, as it turned out, there was an anesthesiologist and respiratory therapist right outside the door.
They descended on her immediately and had everything back in shape in a matter of minutes.
Zoe wasn't born in the year of the very lucky Golden Boar for nothing.
After that little excitement, they put restraints on her arms so it wouldn't happen again. She is definitely in the care of a great team.
The good news discovered within this event was that Zoe's passageway was not swollen or inflamed. The anesthesiologist could replace the breathing tube with one of the same size without any problem. It was this very experience that would have created a bad issue had they proceeded a month ago when she was coming down with a cold. Had they not been able to replace the tube she would have needed an emergency tracheotomy.
Now, I got it.
Other than that, she continues to do well. She spiked a low grade fever last night and then again today, but they said it was to be expected. Blood cultures last night said she was still infection free; they will run some more cultures tonight.
Tomorrow they plan to do another CT scan. We hear that it will be more likely that they will wait until Monday to bring her out of sedation. The truth of the matter is that they will have more staff on hand come Monday to handle anything that may come up once they take her breathing tube out and bring her out of sedation. While I am impatient for Zoe to wake up, I am glad that they are vigilant about risk minimization.
Jeff had a couple of good conversations last night with other parents. One was the father of an young teenager whose heart stopped in PE class; the other was the mother of an eleven year old who has had just a very difficult journey with an extreme cleft palate. He has had 12 surgeries so far in his life and the last one did not go well. He is in the next bed over from Zoe, also in a sedated state for at least three days to give fragile damaged mouth blood vessel a chance to heal.
He said that it was good to talk to other parents--and it seemed good for them as well.
We are all in the trenches here.
Jeff goes home tonight; I stay the night with Zoe.
I really, really hope it is a boring night.
They descended on her immediately and had everything back in shape in a matter of minutes.
Zoe wasn't born in the year of the very lucky Golden Boar for nothing.
After that little excitement, they put restraints on her arms so it wouldn't happen again. She is definitely in the care of a great team.
The good news discovered within this event was that Zoe's passageway was not swollen or inflamed. The anesthesiologist could replace the breathing tube with one of the same size without any problem. It was this very experience that would have created a bad issue had they proceeded a month ago when she was coming down with a cold. Had they not been able to replace the tube she would have needed an emergency tracheotomy.
Now, I got it.
Other than that, she continues to do well. She spiked a low grade fever last night and then again today, but they said it was to be expected. Blood cultures last night said she was still infection free; they will run some more cultures tonight.
Tomorrow they plan to do another CT scan. We hear that it will be more likely that they will wait until Monday to bring her out of sedation. The truth of the matter is that they will have more staff on hand come Monday to handle anything that may come up once they take her breathing tube out and bring her out of sedation. While I am impatient for Zoe to wake up, I am glad that they are vigilant about risk minimization.
Jeff had a couple of good conversations last night with other parents. One was the father of an young teenager whose heart stopped in PE class; the other was the mother of an eleven year old who has had just a very difficult journey with an extreme cleft palate. He has had 12 surgeries so far in his life and the last one did not go well. He is in the next bed over from Zoe, also in a sedated state for at least three days to give fragile damaged mouth blood vessel a chance to heal.
He said that it was good to talk to other parents--and it seemed good for them as well.
We are all in the trenches here.
Jeff goes home tonight; I stay the night with Zoe.
I really, really hope it is a boring night.
Friday, November 7, 2008
Friday, late
Zoe is still stable.
The next CT scan will be Sunday, if things continue to progress well. They are noticing an area of possible injury in her right temporal area, but the neurosurgeon said that it is not surprising given the traumatic experience she had in surgery. Frankly, he had expected to see more injury sites.
He continues to be pleased with Zoe's progress, but, he says we are not out of the woods yet. He still plans to keep her sedated until Sunday, possibly Monday.
Zoe comes close to waking at times. When she does she thrashes, moves her head back and forth, kicks her legs, and brings her right hand to her face to rub her nose or eyes.
Morphine makes people itch.
When she thrashes they give her a bolus of medicine to calm her back down. I do talk to her, but I notice that often my voice and Jeff's voice can cause her to thrash more. As though she is trying to reach us somehow. We spend time with our hands on her and have soft music playing.
Her head is swelling up--she looks like a kid from the Peanuts strip.
I'm home for the night--Jeff is staying tonight in the PICU with her. My stay there last night was not restful--as you might imagine. So, hot shower for me and off to bed.
The next CT scan will be Sunday, if things continue to progress well. They are noticing an area of possible injury in her right temporal area, but the neurosurgeon said that it is not surprising given the traumatic experience she had in surgery. Frankly, he had expected to see more injury sites.
He continues to be pleased with Zoe's progress, but, he says we are not out of the woods yet. He still plans to keep her sedated until Sunday, possibly Monday.
Zoe comes close to waking at times. When she does she thrashes, moves her head back and forth, kicks her legs, and brings her right hand to her face to rub her nose or eyes.
Morphine makes people itch.
When she thrashes they give her a bolus of medicine to calm her back down. I do talk to her, but I notice that often my voice and Jeff's voice can cause her to thrash more. As though she is trying to reach us somehow. We spend time with our hands on her and have soft music playing.
Her head is swelling up--she looks like a kid from the Peanuts strip.
I'm home for the night--Jeff is staying tonight in the PICU with her. My stay there last night was not restful--as you might imagine. So, hot shower for me and off to bed.
Friday, mid
Zoe is doing so great.
The follow up CT scan she had this late morning showed a brain and skull behaving very well, with the swelling that they would expect to see after such an intensive surgery. She has no blood pooling, no sign of stroke.
Her swelling is minimal so far--our nurse is very impressed at how well she is looking.
Zoe means Life.
We alternate widely between being calm, feeling agitated and beyond exhausted, welling up at unexpected love directed our way, laughing too hard at silly jokes, and just numbing out and staring into space.
It's a very altered state we find ourselves in.
And, it is so awe-filled to see the depths of Life Force that Zoe exhibits. This little girl is amazing. And she picked us. Wow, we are so blessed by her.
Zoe means Life!
Whatever the outcome.
The follow up CT scan she had this late morning showed a brain and skull behaving very well, with the swelling that they would expect to see after such an intensive surgery. She has no blood pooling, no sign of stroke.
Her swelling is minimal so far--our nurse is very impressed at how well she is looking.
Zoe means Life.
We alternate widely between being calm, feeling agitated and beyond exhausted, welling up at unexpected love directed our way, laughing too hard at silly jokes, and just numbing out and staring into space.
It's a very altered state we find ourselves in.
And, it is so awe-filled to see the depths of Life Force that Zoe exhibits. This little girl is amazing. And she picked us. Wow, we are so blessed by her.
Zoe means Life!
Whatever the outcome.
Thursday, November 6, 2008
Contact Info
So, as I mentioned in the last post, we will be in PICU for at least three days, if not longer.
We are not allowed to have our cell phones on while in PICU, so, for those of you who need to get ahold of us you must call the Pediatric Intensive Care Unit front desk:
206-987-2040
Tell them you would like to speak with Zoe Newton's parents, and they will find out if we are available and then transfer the call to us.
For those who are bringing us food, please come to the Giraffe entrance as described previously, and ask at the information desk how to get to the PICU front desk. It's on the 4th floor not too far away from the Giraffe entrance. Once at the PICU desk, you can have them tell us to come meet you.
-----------------
Zoe's head looks so different, it is remarkable. Her CT scans are fascinating--her bones look like they are pieced together like a messy puzzle. We were told to anticipate this--like it would look as though she was pieced together with spit and glue.
She's not swollen yet--that will come. The word is still that the neurosurgeon wants her to be sedated for at least three days.
We feel cautiously optimistic.
We are not allowed to have our cell phones on while in PICU, so, for those of you who need to get ahold of us you must call the Pediatric Intensive Care Unit front desk:
206-987-2040
Tell them you would like to speak with Zoe Newton's parents, and they will find out if we are available and then transfer the call to us.
For those who are bringing us food, please come to the Giraffe entrance as described previously, and ask at the information desk how to get to the PICU front desk. It's on the 4th floor not too far away from the Giraffe entrance. Once at the PICU desk, you can have them tell us to come meet you.
-----------------
Zoe's head looks so different, it is remarkable. Her CT scans are fascinating--her bones look like they are pieced together like a messy puzzle. We were told to anticipate this--like it would look as though she was pieced together with spit and glue.
She's not swollen yet--that will come. The word is still that the neurosurgeon wants her to be sedated for at least three days.
We feel cautiously optimistic.
hooray
Zoe is stable. She is in the PICU. Her CT scan was clear. By the time Dr. Hopper closed up her skull her brain was soft and pulsating as it should be doing--not hard and angry as it was when they first opened her up.
Hopper's face looked so happy and relieved when he came into talk to us--it was good medicine for us. We had been paged for him to come talk to us; we didn't know what to expect. I was preparing myself for anything. The sight of his face put years back on my life.
It's not even close to being over--she still has 3 days of sedation to go through, and then after that, who knows? Her risk of infection is higher than the usual craniosynostosis surgery patient. Her osteopetrotic bones may not heal as they should.
But.
We shall cross those bridges as we come to them.
Hopper's face looked so happy and relieved when he came into talk to us--it was good medicine for us. We had been paged for him to come talk to us; we didn't know what to expect. I was preparing myself for anything. The sight of his face put years back on my life.
It's not even close to being over--she still has 3 days of sedation to go through, and then after that, who knows? Her risk of infection is higher than the usual craniosynostosis surgery patient. Her osteopetrotic bones may not heal as they should.
But.
We shall cross those bridges as we come to them.
Not Great News
We just met with the neurosurgeon, Dr. Avellino. He said Zoe is "okay", but it's not going as well as they would like.
Her bone is extremely soft and mushy; the dural wrapping around the brain is interwoven with the skull bone. Every time they drilled through the bone they hit brain matter. What is supposed to happen in a healthy construction is that they would drill through bone and be able to separate the bone from the dura while leaving the dura in tact.
Dura is supposed to be strong and resilient; Zoe's dura is more like an 80 year old's. It is not strong and easily tears apart.
Her brain was under a huge amount of pressure. That combined with the surgery trauma, makes it extremely "angry" right now, said Avellino. He wants to leave her in a medical induced coma for at least 3 days to help her brain heal.
We will be in PICU for at least that long, if not longer.
Nothing about the surgery has gone the way they would have liked--she's required so much blood product that they have brought in a cardiac specialist in the event she has a cardiac arrest from all the product (a distinct possibility). The pressure in her cranial system caused the lumbar drain to squirt and leak. They will not be doing the optic nerve decompression as it posses too much risk in her situation.
It is possible that she could have a stroke--the CT scan after the surgery will tell them if this is a real concern.
She has bone encroaching in her sinus vein in the brain. This is not good.
I am in shock while writing this. Avellino says we should hope for the best, but be prepared for some very rough stuff.
He said that Dr. Hopper should be finished in another hour, and then she goes for the CT scan, and then we will be able to see her.
What I know is that I had a wonderful evening with my girl last night. I'm holding that vital girl in my heart.
Please help us with that.
Her bone is extremely soft and mushy; the dural wrapping around the brain is interwoven with the skull bone. Every time they drilled through the bone they hit brain matter. What is supposed to happen in a healthy construction is that they would drill through bone and be able to separate the bone from the dura while leaving the dura in tact.
Dura is supposed to be strong and resilient; Zoe's dura is more like an 80 year old's. It is not strong and easily tears apart.
Her brain was under a huge amount of pressure. That combined with the surgery trauma, makes it extremely "angry" right now, said Avellino. He wants to leave her in a medical induced coma for at least 3 days to help her brain heal.
We will be in PICU for at least that long, if not longer.
Nothing about the surgery has gone the way they would have liked--she's required so much blood product that they have brought in a cardiac specialist in the event she has a cardiac arrest from all the product (a distinct possibility). The pressure in her cranial system caused the lumbar drain to squirt and leak. They will not be doing the optic nerve decompression as it posses too much risk in her situation.
It is possible that she could have a stroke--the CT scan after the surgery will tell them if this is a real concern.
She has bone encroaching in her sinus vein in the brain. This is not good.
I am in shock while writing this. Avellino says we should hope for the best, but be prepared for some very rough stuff.
He said that Dr. Hopper should be finished in another hour, and then she goes for the CT scan, and then we will be able to see her.
What I know is that I had a wonderful evening with my girl last night. I'm holding that vital girl in my heart.
Please help us with that.
So Far, So Good
At 11am we got our first page from the OR nurse: they started the actual operation procedure at 10am and have been going at a good clip since then (so to speak).
We got to tour the Pediatric Intensive Care Unit (PICU) and took a look into the room that she will be in. Pretty nice! We are so lucky to have this hospital in our backyard.
We are well cared for--some dear friends have stopped in with food and coffee. Jeff and I have received accupuncture for the stress as well. So great to know alternative care practitioners!
Will write more as I know the updates.
Tawanda!
We got to tour the Pediatric Intensive Care Unit (PICU) and took a look into the room that she will be in. Pretty nice! We are so lucky to have this hospital in our backyard.
We are well cared for--some dear friends have stopped in with food and coffee. Jeff and I have received accupuncture for the stress as well. So great to know alternative care practitioners!
Will write more as I know the updates.
Tawanda!
At the Hospital
It's a little after 9 am, we are waiting for our first page to let us know that things have started. We are nervous and tense. Met all the Docs and Nurses this morning after our 6:45 AM check in. Seems like a great group of folks, all very caring. Things feel calmer than last time. Keep us in your thoughts and prayers. We will update as things move forward.
Zendada
Zendada
Wednesday, November 5, 2008
We Are A Go
The results from the blood work came back today--although her WBC count is slightly elevated, her numbers are within "normal" range. Her surgery will go on tomorrow as planned.
Halleluiah.
Her platelets are lower than they were a month ago. Platelets are what help the blood to coagulate; osteopetrotic babies typically have less than normal amounts. To accommodate this, Zoe will be loaded up with platelets before they start to work on her.
We don't have an exact time for surgery yet, but we are pretty certain that we will need to be there early in the morning.
As before, I will try to put regular updates in the blog here.
Thanks for your continued love and support. This is turning out to be quite the roller coaster ride, and I've never been much of a fan of roller coasters. I am grateful that you are all here to hold our hands through this.
Halleluiah.
Her platelets are lower than they were a month ago. Platelets are what help the blood to coagulate; osteopetrotic babies typically have less than normal amounts. To accommodate this, Zoe will be loaded up with platelets before they start to work on her.
We don't have an exact time for surgery yet, but we are pretty certain that we will need to be there early in the morning.
As before, I will try to put regular updates in the blog here.
Thanks for your continued love and support. This is turning out to be quite the roller coaster ride, and I've never been much of a fan of roller coasters. I am grateful that you are all here to hold our hands through this.
Tuesday, November 4, 2008
New day.
Sinuses seem mostly clear. I just read that I can squirt breastmilk into her ears and nose to help fight infection. Crazy how powerful the stuff is!
We go to Seattle Children's in a few hours to get a blood draw and a physical from the neuro-surgery nurse. The blood test will show us if she's indeed fighting anything.
All those opposed to viruses, cry NAY!
------------------------------------
I just got off the phone with a BMT nurse at the Aflac Cancer Center and Blood Disorder Service of Children's Healthcare of Atlanta . I had found out about them through a woman who had posted on a blog entry I stumbled across while combing the internet for information about breastfeeding during a pediatric BMT.
The commenter had noted that the BMT team at AFLAC enthusiastically supported her continuing to breastfeed her baby. I wrote her directly and got the contact information for the team she worked with.
The chat I just had with the nurse confirmed their policy of endorsing breastfeeding during BMT procedures. They believe it to be optimal nutrition for the baby, and even put the breastmilk in the NG tube (that runs through the nose down into the stomach) when or if the baby can't nurse directly due to mouth pain from the chemo. They haven't experienced any complications resulting from nursing.
It's crazy to me that there have been no studies done on this subject. Any of you who knows medical researchers, tell them to get on it! There is work to be done!
ZENmama out!
We go to Seattle Children's in a few hours to get a blood draw and a physical from the neuro-surgery nurse. The blood test will show us if she's indeed fighting anything.
All those opposed to viruses, cry NAY!
------------------------------------
I just got off the phone with a BMT nurse at the Aflac Cancer Center and Blood Disorder Service of Children's Healthcare of Atlanta . I had found out about them through a woman who had posted on a blog entry I stumbled across while combing the internet for information about breastfeeding during a pediatric BMT.
The commenter had noted that the BMT team at AFLAC enthusiastically supported her continuing to breastfeed her baby. I wrote her directly and got the contact information for the team she worked with.
The chat I just had with the nurse confirmed their policy of endorsing breastfeeding during BMT procedures. They believe it to be optimal nutrition for the baby, and even put the breastmilk in the NG tube (that runs through the nose down into the stomach) when or if the baby can't nurse directly due to mouth pain from the chemo. They haven't experienced any complications resulting from nursing.
It's crazy to me that there have been no studies done on this subject. Any of you who knows medical researchers, tell them to get on it! There is work to be done!
ZENmama out!
Monday, November 3, 2008
Help.
This morning Zoe woke up with post nasal drip. It could be nothing; it could be the onset of a cold.
If ever we needed some good vibes our way, now would be the time.
All manner of prayer, positive visualizations, circles cast, healing vibes, anti-infective thoughts are needed for her now.
Just know for her and for us that she is not only well, but thriving. See her recovering nicely this Thursday night from a surgery that was successful and expedient.
Thank you.
--------------------------------
Today we went to Seattle Children's for her first day of pre-op appointments. The clear plastic rain guard was a very effective bubble. Never have I been so aware of how public places, especially a children's hospital, are crawling with viruses this time of year. We washed and gelled our hands so many times they began to smart.
The appointments went along without incident; it was our unscheduled meeting with Dr. Cunningham that provided a point of interest.
Among the issues I brought up with him was the little exchange I have been having with Dr. Manley regarding the breastfeeding vs. weaning issue. While initially he was cautious about my wanting to go against Manley's wishes on the matter, he got that I was very serious about my position--and understood that it was not merely based on an emotional whim not to wean her yet.
He said that in matters such as these it would be best for a peer of Manley's, such as himself, to talk to him on the subject. Cunningham said that he would do some investigating into the matter himself, wanted to read the copies of the emails I sent Manley, and would do his best to get some different opinions on the matter. He assured me that his approach would not be to merely look for proof to back Manley up, but rather to investigate to entire issue.
He said that, ultimately, the decision would be ours. There would be no cutting her off from treatment if we were to go against Manley's wishes.
I really appreciate Dr. Cunningham--I always feel like he really listens and understands. I broke down into tears while I was vehemently stating all the factors that backed up my point of view. He wasn't dismissive of me as merely an emotional mother. He, in fact, said that he had mentioned us to a few different people (without disclosing any names) when discussing parents undergoing an astronomically stressful situation. We have very good reason to be distraught.
His position with me on the whole breastfeeding topic was that I shouldn't have to carry the burden of thinking that I needed to research all of this myself--that he would be happy to look into it for me, and find some answers. (Very kind--and, I'm still not relinquishing the reins on this one.)
He was astute and emotionally present enough to observe, gently, that my focusing on this was probably a way for me to --
I know, I know--I said--Feel like I have a modicum of control in a bigger, scary picture where I have none!
Not to discount the importance of the breastfeeding issue. But, it is a very easy channel through which I can shove all of my need to DO. SOMETHING. PROACTIVE.
-------------
Zoe is asleep behind me. Her breathing is sometimes calm, sometimes labored. As she is a stomach sleeper it's difficult to know whether the stuffiness is due to sinuses naturally clogged by gravity from her position and how much is due to this phantom cold we are fearing.
I am being taught, over and over again, the lesson that worry accomplishes nothing.
I thrash about in my fear, but when I'm finally calm again and return to the place of stillness, of surrender, of knowing that this is all so much bigger than I, it's the closest I come to touching God in all this mess.
If ever we needed some good vibes our way, now would be the time.
All manner of prayer, positive visualizations, circles cast, healing vibes, anti-infective thoughts are needed for her now.
Just know for her and for us that she is not only well, but thriving. See her recovering nicely this Thursday night from a surgery that was successful and expedient.
Thank you.
--------------------------------
Today we went to Seattle Children's for her first day of pre-op appointments. The clear plastic rain guard was a very effective bubble. Never have I been so aware of how public places, especially a children's hospital, are crawling with viruses this time of year. We washed and gelled our hands so many times they began to smart.
The appointments went along without incident; it was our unscheduled meeting with Dr. Cunningham that provided a point of interest.
Among the issues I brought up with him was the little exchange I have been having with Dr. Manley regarding the breastfeeding vs. weaning issue. While initially he was cautious about my wanting to go against Manley's wishes on the matter, he got that I was very serious about my position--and understood that it was not merely based on an emotional whim not to wean her yet.
He said that in matters such as these it would be best for a peer of Manley's, such as himself, to talk to him on the subject. Cunningham said that he would do some investigating into the matter himself, wanted to read the copies of the emails I sent Manley, and would do his best to get some different opinions on the matter. He assured me that his approach would not be to merely look for proof to back Manley up, but rather to investigate to entire issue.
He said that, ultimately, the decision would be ours. There would be no cutting her off from treatment if we were to go against Manley's wishes.
I really appreciate Dr. Cunningham--I always feel like he really listens and understands. I broke down into tears while I was vehemently stating all the factors that backed up my point of view. He wasn't dismissive of me as merely an emotional mother. He, in fact, said that he had mentioned us to a few different people (without disclosing any names) when discussing parents undergoing an astronomically stressful situation. We have very good reason to be distraught.
His position with me on the whole breastfeeding topic was that I shouldn't have to carry the burden of thinking that I needed to research all of this myself--that he would be happy to look into it for me, and find some answers. (Very kind--and, I'm still not relinquishing the reins on this one.)
He was astute and emotionally present enough to observe, gently, that my focusing on this was probably a way for me to --
I know, I know--I said--Feel like I have a modicum of control in a bigger, scary picture where I have none!
Not to discount the importance of the breastfeeding issue. But, it is a very easy channel through which I can shove all of my need to DO. SOMETHING. PROACTIVE.
-------------
Zoe is asleep behind me. Her breathing is sometimes calm, sometimes labored. As she is a stomach sleeper it's difficult to know whether the stuffiness is due to sinuses naturally clogged by gravity from her position and how much is due to this phantom cold we are fearing.
I am being taught, over and over again, the lesson that worry accomplishes nothing.
I thrash about in my fear, but when I'm finally calm again and return to the place of stillness, of surrender, of knowing that this is all so much bigger than I, it's the closest I come to touching God in all this mess.
Sunday, November 2, 2008
Milking, Part 2
Email received yesterday from Dr. Manley in regards to nursing during Zoe's BMT:
"Hi Kellie,
Sorry for the delayed response, I have been looking into the matter a little bit, and I should have passed that along sooner. We have allowed mothers to feed their infants undergoing BMT irradiated breast milk, which eliminates the risk of transmitting maternal lymphocytes to an immunosuppressed host, which is the real risk. The problem is the availability of that 'irradiator' for this purpose, and I'm trying to find out more.
Thanks for your very good questions. How is Zoe doing? When is her surgery rescheduled for?
Thomas"
My response to Dr. Manley:
"Hi, Dr. Manley,
Thanks for getting back to me. I am not interested in feeding her irradiated breast milk-- I want to nurse her from the source.
My understanding, again, is that there is no documented proof that maternal lymphocyte transmission to the immunosuppressed baby is actually a danger during a BMT. I am uncovering case after case of babies who were nursed while undergoing bone and stem cell transplants without incident.
I had an email exchange with one such woman who directly breastfed her son during the entirety of his BMT. Apparently she was even a carrier for CMV (cytomegalovirus), as they found out later, and this did not affect him at all. (Controversial, I know.) She writes:
'One more thing is that I am positive for CMV which I did not find out until after his transplant when I donated blood. Many people are positive for CMV. CMV is very dangerous for a BMT patient. Nothing was transmitted to David. I did have a bad cold during transplant and still, nothing was transmitted to David through my breastmilk. The doctors at Stanford agreed that breastfeeding helped David in many ways.' (emphasis mine)
GVHD (graft versus host disease) for her son has been limited to chronic skin GVHD--but no digestive tract signs of it at all. His donor was an unrelated 6/6 match.
I found another woman who breastfed her baby during the entirety of his BMT process, again, no complications. In both cases neither baby needed TPN (total parenteral nutrition--fed via tube) as neither one lost any weight on a breastmilk diet during the procedure. The first child was two at the time, the second, was four months old (which predates the 6 month point at which the 'leaky gut' effect of the baby's digestive tract stops). I don't know whether he has GVHD issues, but I could find out. I do know that he is 14 months post BMT and apparently doing very well.
Both of the BMT teams for these different babies encouraged the mothers to breastfeed--Stanford for the first, Atlanta Children's for the second.
Did you manage to talk to the immunologist I told you about? Again, as I understood it, his argument was that IF maternal lymphocytes managed to somehow colonize the baby from the breast milk, the immunosuppressants should be able to take care of them.
Again, as I wrote you before, he stated that:
'There are reasons to believe that breastfeeding would be beneficial (during a BMT) because
of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.'
Here's a link to an article about breastmilk preventing rotavirus and gastroentiritis, infection risks as I understand it, during BMT's:
http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=443262&pageindex=1
It is not my intention to be a pain or disrespectful of your vast knowledge in your field, but I am sticking to my guns that I need for you to prove to me that breastfeeding her would be detrimental to the process, or even greatly risky, before I agree to weaning her.
I hope that if I decide to nurse her, despite your wishes, that it will not be a 'deal breaker' with you. You must know that the last thing I want to do is endanger my child. Everything I am reading and coming across on the subject, however, is telling me that breastfeeding her through the BMT will be greatly beneficial for her.
Zoe is doing fabulous. No one can accuse her of 'failing to thrive', as it seems most babies with osteopetrosis seem to suffer from. Her surgery is rescheduled for this coming Thursday. We have been keeping her in a bubble to avoid another virus.
Thanks for your time and consideration,
Kellie"
****************
You know, it's not much fun to go toe to toe with a doc--especially one who holds my daughter's life in his hands. I just have to trust that breastfeeding her will be a good thing. I don't believe I am being naive.
But, it still is scary to outright oppose a doctor.
Tomorrow we have pre-op appointments for Zoe. We're planning to put her clear plastic rain shield over her pram so that NO ONE breathes on her in that hospital. She is going to have that surgery on Thursday--and it will be a success, by God!
-------------------------------------
Two things:
Note the added links to the right of the current post; there are informational websites listed about our situation. (I'm finally ready to research)
And, who is borrowing season one of "Six Feet Under" from us?? I honestly can't remember! I don't need you to return it right away, but I just want to know who has it--thanks!
"Hi Kellie,
Sorry for the delayed response, I have been looking into the matter a little bit, and I should have passed that along sooner. We have allowed mothers to feed their infants undergoing BMT irradiated breast milk, which eliminates the risk of transmitting maternal lymphocytes to an immunosuppressed host, which is the real risk. The problem is the availability of that 'irradiator' for this purpose, and I'm trying to find out more.
Thanks for your very good questions. How is Zoe doing? When is her surgery rescheduled for?
Thomas"
My response to Dr. Manley:
"Hi, Dr. Manley,
Thanks for getting back to me. I am not interested in feeding her irradiated breast milk-- I want to nurse her from the source.
My understanding, again, is that there is no documented proof that maternal lymphocyte transmission to the immunosuppressed baby is actually a danger during a BMT. I am uncovering case after case of babies who were nursed while undergoing bone and stem cell transplants without incident.
I had an email exchange with one such woman who directly breastfed her son during the entirety of his BMT. Apparently she was even a carrier for CMV (cytomegalovirus), as they found out later, and this did not affect him at all. (Controversial, I know.) She writes:
'One more thing is that I am positive for CMV which I did not find out until after his transplant when I donated blood. Many people are positive for CMV. CMV is very dangerous for a BMT patient. Nothing was transmitted to David. I did have a bad cold during transplant and still, nothing was transmitted to David through my breastmilk. The doctors at Stanford agreed that breastfeeding helped David in many ways.' (emphasis mine)
GVHD (graft versus host disease) for her son has been limited to chronic skin GVHD--but no digestive tract signs of it at all. His donor was an unrelated 6/6 match.
I found another woman who breastfed her baby during the entirety of his BMT process, again, no complications. In both cases neither baby needed TPN (total parenteral nutrition--fed via tube) as neither one lost any weight on a breastmilk diet during the procedure. The first child was two at the time, the second, was four months old (which predates the 6 month point at which the 'leaky gut' effect of the baby's digestive tract stops). I don't know whether he has GVHD issues, but I could find out. I do know that he is 14 months post BMT and apparently doing very well.
Both of the BMT teams for these different babies encouraged the mothers to breastfeed--Stanford for the first, Atlanta Children's for the second.
Did you manage to talk to the immunologist I told you about? Again, as I understood it, his argument was that IF maternal lymphocytes managed to somehow colonize the baby from the breast milk, the immunosuppressants should be able to take care of them.
Again, as I wrote you before, he stated that:
'There are reasons to believe that breastfeeding would be beneficial (during a BMT) because
of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.'
Here's a link to an article about breastmilk preventing rotavirus and gastroentiritis, infection risks as I understand it, during BMT's:
http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=443262&pageindex=1
It is not my intention to be a pain or disrespectful of your vast knowledge in your field, but I am sticking to my guns that I need for you to prove to me that breastfeeding her would be detrimental to the process, or even greatly risky, before I agree to weaning her.
I hope that if I decide to nurse her, despite your wishes, that it will not be a 'deal breaker' with you. You must know that the last thing I want to do is endanger my child. Everything I am reading and coming across on the subject, however, is telling me that breastfeeding her through the BMT will be greatly beneficial for her.
Zoe is doing fabulous. No one can accuse her of 'failing to thrive', as it seems most babies with osteopetrosis seem to suffer from. Her surgery is rescheduled for this coming Thursday. We have been keeping her in a bubble to avoid another virus.
Thanks for your time and consideration,
Kellie"
****************
You know, it's not much fun to go toe to toe with a doc--especially one who holds my daughter's life in his hands. I just have to trust that breastfeeding her will be a good thing. I don't believe I am being naive.
But, it still is scary to outright oppose a doctor.
Tomorrow we have pre-op appointments for Zoe. We're planning to put her clear plastic rain shield over her pram so that NO ONE breathes on her in that hospital. She is going to have that surgery on Thursday--and it will be a success, by God!
-------------------------------------
Two things:
Note the added links to the right of the current post; there are informational websites listed about our situation. (I'm finally ready to research)
And, who is borrowing season one of "Six Feet Under" from us?? I honestly can't remember! I don't need you to return it right away, but I just want to know who has it--thanks!
Thursday, October 23, 2008
Milking, The Issue
Two weeks down, two to go until the rescheduled surgery date: November 6th.
It goes both too slowly and too quickly.
All around us people are coming down with colds. We wash and sanitize our hands constantly; we don't let sick people (or people who've been around sick people) come near us.
We are the Family in the Bubble.
--------------------------------------------
I have come across the most astounding thing--courtesy of our good friend Amy Wells, ND who was at a lactation management class all last week.
Apparently, there is no scientific proof, no clinical evidence supporting the mandate that Zoe must not breastfeed during and immediately after her bone marrow transplant.
Amy forwarded me an email thread dating back to 2001 discussing this very fact.
People involved in this thread included two lactation specialists, and an MD in at the University of Texas Medical Branch named Armond Goldman who is an immunologist specializing in the study of breastmilk. (!)
His email in the thread said the following (the highlights are mine):
"Thank you for your inquiry. No controlled studies have been conducted concerning breastfeeding and stem cell transplantation. Because of the lack of information, I have never addressed this issue in any of my writings.
There are theoretical reasons to avoid breastfeeding in such a circumstance if the child has to be immunosuppressed to prepare for the transplantation. The reason stems from cross-fostering experiments conducted by Beer and Billingham some 30 years ago in highly inbred experimental animals. They showed in such animals that ingested T cells from milk colonized the cross fostered infant animals and caused a wasting disease. It is unclear whether maternal T cell engraftment occurs in immunodeficient human infants as a result of breastfeeding. The reason for the uncertainty is that most maternal T cell engraftment occurs during the intrauterine period as a result of T cells colonizing the fetus via the placental.
There are reasons to believe that breastfeeding would be beneficial because of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.
It is difficult to make a recommendation when you do not have all of the medical information about the patient. In general, I would encourage such mothers to continue to breastfeed. I would also be obliged to perdiodically make sure that the blood T cells in such children were hers and not her mother's.
I wish I could be of more assistance, but there is little information to provide a more substantial recommendation. If you have any other question, email me or call me.
Dr. Goldman"
I dialed the phone number listed at the end of the email. The woman on the other end of the line explained that yes, Dr. Goldman was still reachable at this number, but they were in the midst of chaos and displacement due to the recent hurricane in Galveston--did I want his cell phone number? Well, sure!
He answered his phone directly. A very pleasant older man with a relaxed Texan drawl. In the next 45 minutes he told me that nothing had changed between 2001 when he wrote the original email and now; there was still no documented proof that breastfeeding was a danger to the transplantation process. But, there was no documented proof that it wasn't either.
Not something that is easy to study through a systematic scientific study, he said.
However, in his years of studying breastmilk, he asserted, nothing has led him to believe that it would be harmful in a situation such as Zoe's. When asked, he said that he would be happy to talk to our oncologist, Dr. Thomas Manley, about this very subject.
Two days after my conversation with Dr. Goldman, I found myself on the phone having an interesting chat with a mother, Beth, who breastfed her baby daughter through a liver transplantation process. Told that her daughter's liver could not process the fat in breastmilk, she did have to supplement with formula (which was less fatty) before and during the transplant process. But, once in recovery, and given larger portions of breastmilk, her baby had what doctors agreed was an astounding recovery.
Beth is convinced that this was due to the healing powers of breastmilk. She told me that the main transplant doctor involved agreed with her assessment.
I have written a long email to Dr. Manley asking him to provide me with the evidence that supports the assertion that breastfeeding Zoe through her bone marrow transplant would be harmful for her.
I don't know if it's irrational hope, or mother's intuition, but I am convinced that nursing her through it will help her fight life threatening infection (a very real and dangerous concern in this process).
It's been a few days, I haven't heard back from him.
Meanwhile, I am continuing to sleuth down other instances where babies have been nursed during transplantation. I have a line on a lactation specialist in Texas who claims that she's observed both stem and bone marrow transplants done in the presence of nursing--without harmful side effects. I am waiting to hear back from her as well.
I'll let you know what turns up.
It goes both too slowly and too quickly.
All around us people are coming down with colds. We wash and sanitize our hands constantly; we don't let sick people (or people who've been around sick people) come near us.
We are the Family in the Bubble.
--------------------------------------------
I have come across the most astounding thing--courtesy of our good friend Amy Wells, ND who was at a lactation management class all last week.
Apparently, there is no scientific proof, no clinical evidence supporting the mandate that Zoe must not breastfeed during and immediately after her bone marrow transplant.
Amy forwarded me an email thread dating back to 2001 discussing this very fact.
People involved in this thread included two lactation specialists, and an MD in at the University of Texas Medical Branch named Armond Goldman who is an immunologist specializing in the study of breastmilk. (!)
His email in the thread said the following (the highlights are mine):
"Thank you for your inquiry. No controlled studies have been conducted concerning breastfeeding and stem cell transplantation. Because of the lack of information, I have never addressed this issue in any of my writings.
There are theoretical reasons to avoid breastfeeding in such a circumstance if the child has to be immunosuppressed to prepare for the transplantation. The reason stems from cross-fostering experiments conducted by Beer and Billingham some 30 years ago in highly inbred experimental animals. They showed in such animals that ingested T cells from milk colonized the cross fostered infant animals and caused a wasting disease. It is unclear whether maternal T cell engraftment occurs in immunodeficient human infants as a result of breastfeeding. The reason for the uncertainty is that most maternal T cell engraftment occurs during the intrauterine period as a result of T cells colonizing the fetus via the placental.
There are reasons to believe that breastfeeding would be beneficial because of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.
It is difficult to make a recommendation when you do not have all of the medical information about the patient. In general, I would encourage such mothers to continue to breastfeed. I would also be obliged to perdiodically make sure that the blood T cells in such children were hers and not her mother's.
I wish I could be of more assistance, but there is little information to provide a more substantial recommendation. If you have any other question, email me or call me.
Dr. Goldman"
I dialed the phone number listed at the end of the email. The woman on the other end of the line explained that yes, Dr. Goldman was still reachable at this number, but they were in the midst of chaos and displacement due to the recent hurricane in Galveston--did I want his cell phone number? Well, sure!
He answered his phone directly. A very pleasant older man with a relaxed Texan drawl. In the next 45 minutes he told me that nothing had changed between 2001 when he wrote the original email and now; there was still no documented proof that breastfeeding was a danger to the transplantation process. But, there was no documented proof that it wasn't either.
Not something that is easy to study through a systematic scientific study, he said.
However, in his years of studying breastmilk, he asserted, nothing has led him to believe that it would be harmful in a situation such as Zoe's. When asked, he said that he would be happy to talk to our oncologist, Dr. Thomas Manley, about this very subject.
Two days after my conversation with Dr. Goldman, I found myself on the phone having an interesting chat with a mother, Beth, who breastfed her baby daughter through a liver transplantation process. Told that her daughter's liver could not process the fat in breastmilk, she did have to supplement with formula (which was less fatty) before and during the transplant process. But, once in recovery, and given larger portions of breastmilk, her baby had what doctors agreed was an astounding recovery.
Beth is convinced that this was due to the healing powers of breastmilk. She told me that the main transplant doctor involved agreed with her assessment.
I have written a long email to Dr. Manley asking him to provide me with the evidence that supports the assertion that breastfeeding Zoe through her bone marrow transplant would be harmful for her.
I don't know if it's irrational hope, or mother's intuition, but I am convinced that nursing her through it will help her fight life threatening infection (a very real and dangerous concern in this process).
It's been a few days, I haven't heard back from him.
Meanwhile, I am continuing to sleuth down other instances where babies have been nursed during transplantation. I have a line on a lactation specialist in Texas who claims that she's observed both stem and bone marrow transplants done in the presence of nursing--without harmful side effects. I am waiting to hear back from her as well.
I'll let you know what turns up.
Sunday, October 12, 2008
Incidentally...
Zoe did come down with a cold late Friday night--the standard mucous-y and miserable baby experience. She ran a fever today which broke early this evening, and was back to her happy talkative self tonight. Zoe did a good job of talking loudly over Hillary during the Scranton rally.
I dunno, but I think politics seemed to rile her up.
I was thinking about the timing of this cold she contracted. If there is any truth in the old saw about colds being "three days coming, three days here, three days going", and the cold really didn't get here until late Friday, I believe the pre-op appointment on Wednesday (or Monday, for that matter) may have been the culprit.
We spent hours there on those days. We sat on chairs and touched the arm rests. We ate in the lunch room and touched tables and chairs that others had been sitting on directly prior. We did not gel our hands or wash them every single time we went between touching some surface, and touching Zoe.
For all our fastidiousness up until her surgery (as friends who were not allowed to touch her at social settings can attest), we were not fastidious enough.
Won't make that mistake again.
We are doing okay, we're hunkered down--happy that, on the bright side of this experience, we get another month with our baby as we know her.
It seems like we're somewhat suspended in time--other babies her age have long been sitting up on their own, rolling over, and now even crawling. Zoe still does none of those things. She is very much like a precocious 4 month old: huggable, cuddleable and helpless like a small baby, and so alert and interactive on a social level.
She is her own unique little human.
I dunno, but I think politics seemed to rile her up.
I was thinking about the timing of this cold she contracted. If there is any truth in the old saw about colds being "three days coming, three days here, three days going", and the cold really didn't get here until late Friday, I believe the pre-op appointment on Wednesday (or Monday, for that matter) may have been the culprit.
We spent hours there on those days. We sat on chairs and touched the arm rests. We ate in the lunch room and touched tables and chairs that others had been sitting on directly prior. We did not gel our hands or wash them every single time we went between touching some surface, and touching Zoe.
For all our fastidiousness up until her surgery (as friends who were not allowed to touch her at social settings can attest), we were not fastidious enough.
Won't make that mistake again.
We are doing okay, we're hunkered down--happy that, on the bright side of this experience, we get another month with our baby as we know her.
It seems like we're somewhat suspended in time--other babies her age have long been sitting up on their own, rolling over, and now even crawling. Zoe still does none of those things. She is very much like a precocious 4 month old: huggable, cuddleable and helpless like a small baby, and so alert and interactive on a social level.
She is her own unique little human.
Friday, October 10, 2008
Yesterday's Breakdown
The sun was shining in Seattle today; things seem a little less dark after a good night's sleep.
As noted in Amy's post, Zoe's surgery was canceled due to the fact that she was coming down with a cold. The absolutely disheartening thing about this was that it wasn't really identified as a true issue until Zoe was prepped and on the operating table.
They knew going in that her white blood cell count was high from the blood test taken the day before. But, as she showed no signs of symptoms, and numbers indicating infection were low, they decided to proceed.
According to the anesthesiologist, when we met with her after they canceled everything, it was the breathing tube difficulties that ultimately decided the issue. After inserting the tube, she noticed that it was difficult to manually "breathe" for Zoe. Her lungs felt "stiff", she said. This stiffness is usually due to one of two things: the tube being too small, or the patient being sick and having inflammation. She tried putting a larger diameter tube in--and still Zoe's chest felt stiff.
The concern was that the swelling present in the passageway would not allow them to remove the tube in a timely manner after the surgery. Apparently, if the tube is not removed within 24 hours of being placed in, the likelihood of infection, including pneumonia, is very high.
We also talked with the plastic surgeon and neurosurgeon after they emerged from the canceled procedure (actually, before we met with the anesthesiologist). They noted that another point of concern was Zoe's level of bleeding.
Zoe bled profusely at her IV site and at the base of her spine where the neurosurgeon had performed a lumbar puncture for the purpose creating a pressure release for her cerebral spinal fluid during the operation. They said that the amount of bleeding was concerning and not normal. They had blood samples sent to hematology for analysis.
Oh God. What else is wrong with her? Are there more ghosts to reveal?
Both of our hearts were gasping on the floor beneath us.
In my own head I was screaming--what about her bone marrow transplant?! We need her healed from the surgery so that she can proceed with life saving treatment--and surgery is postponed for another month...!!!?
But, as of such, they all concurred that it was not in her best interest to go forward yesterday--a call to Cunningham and to Dr. Manley at Seattle Cancer Care Alliance had them agreeing as well. According to the anesthesiologist, all the doctors involved in the OR got out their calendars and settled on a good day to reschedule for.
Talking to Cunningham later, he said that a November 6th reschedule is very expeditious. I'll have to trust him on that.
We were told that they needed time to get Zoe released from surgery prep; we would see her in a room in about an hour. We would need to spend the night so they could observe her. The tube in her throat had "stirred things up" and now, they said, she sounded a bit rough in her breathing.
Cunningham visited us for a bit about 30minutes later. He had gotten out of a meeting and headed straight for us. He was able to assuage our fears saying that it was unlikely another ghost in Zoe's closet was waiting to be revealed. He also said that a month delay was not a tremendous thing to be worried about as far as the BMT goes.
Zoe's issue has been progressing all her life, he said, and another month was not likely to be the make or break point. He said, too, that her hematocrit levels (red blood cell count) were actually up a bit since the last time they looked, so she was holding steady as far as blood production and storage was going.
If Zoe's having surgery that day was seen as a life or death issue, they would have progressed with it. Cunningham said they have ways of dealing with infection and colds, if need really be, and, if it came down to it, they would definitely proceed in the future if overall protocol demanded it (as far as needing to get the BMT process started).
An hour later had us waiting in a hospital room for Zoe. Zoe came in on a big bed with a crazy haircut--a shaved strip from ear to ear. We could see remnants of the jagged line they had drawn where they had planned to cut the scalp.
The next few hours were simply spent feeding and holding her. She was groggy, but doing great.
During that time we were visited by the hematologist, who came to give us the results of the blood panel. She took a very long time getting to the point (so hard not to scream: Just tell me what's wrong!!!), but the bottom line was, she really couldn't explain what was the reason for Zoe's profuse bleeding. None of the extensive tests revealed anything that would say. She asked Jeff and I if we had a family history of blood or bleeding issues. We told her, not that we knew of.
Please, if you are family and you know differently, let us know. It could be a missing link.
She left us with the remark that she would be doing more looking into Zoe's case. Hopefully, Cunningham's opinion that there are no more ghosts to be found will hold true...
As we were down the hall from the SCCA portion of the hospital where the BMT's are performed, Jeff and I left Zoe sleeping under the watchful eyes of Cinny and Jack and did a little reconnaissance. We only got to peek at the entrance of the unit as signs plastered everywhere reminded us not to spread germs (we had been holding a possibly sick Zoe), but a helpful childcare specialist from the unit came back to our room with us to tell us about some of what to expect when we return for the BMT.
More on that in a later post.
Zoe's continued great progress got us home last night. Thankfully we didn't have to spend the night; the "double bed" for the parents looked suspiciously like a single.
We all got some great sleep last night--thanks to the one benefit I can see regarding Zoe's unnecessary anesthesia.
She seemed pretty fine today. It's hard to know if her raspy voice is due to a cold, or to irritation from the different breathing tubes shoved down her throat. Currently she's asleep and breathing fine. I wonder if she is really coming down with something.
What does it mean if she doesn't? Will it have been canceled for nothing?
-------------------------------------
On another bent--great, great news came today from SCCA.
Preliminarily, there have been found two, possibly three "ten out of ten" bone marrow matches for Zoe.
Ten out of ten is the best possible match for an unrelated donor.
Much more needs to be done in the way of verifying and locking in a donor--but this early news is phenomenal.
Many have asked if she has the type of osteopetrosis that can be treated with a BMT--I guess I wasn't as clear about that as I should have been in earlier posts.
Ultimately, it's not absolutely certain. This was to be expected, according to Dr. Manley at SCCA. Osteopetrosis is so rare that they don't have all of the gene mutations identified. One of the two mutations present in Zoe is not recognized.
According to Dr. Cunningham, whose area of expertise includes molecular biology, his educated guess is that she has a type that responds to BMT's. Even so, and even with a "10 out of 10" match in bone marrow, her prognosis is still 50/50 as far as being healed.
The ultimate glass half empty/half full scenario in terms of how we sit with this.
This is so big, and I feel so small and stiff and unequal to the challenge.
All I can do is surrender, over and over again.
As noted in Amy's post, Zoe's surgery was canceled due to the fact that she was coming down with a cold. The absolutely disheartening thing about this was that it wasn't really identified as a true issue until Zoe was prepped and on the operating table.
They knew going in that her white blood cell count was high from the blood test taken the day before. But, as she showed no signs of symptoms, and numbers indicating infection were low, they decided to proceed.
According to the anesthesiologist, when we met with her after they canceled everything, it was the breathing tube difficulties that ultimately decided the issue. After inserting the tube, she noticed that it was difficult to manually "breathe" for Zoe. Her lungs felt "stiff", she said. This stiffness is usually due to one of two things: the tube being too small, or the patient being sick and having inflammation. She tried putting a larger diameter tube in--and still Zoe's chest felt stiff.
The concern was that the swelling present in the passageway would not allow them to remove the tube in a timely manner after the surgery. Apparently, if the tube is not removed within 24 hours of being placed in, the likelihood of infection, including pneumonia, is very high.
We also talked with the plastic surgeon and neurosurgeon after they emerged from the canceled procedure (actually, before we met with the anesthesiologist). They noted that another point of concern was Zoe's level of bleeding.
Zoe bled profusely at her IV site and at the base of her spine where the neurosurgeon had performed a lumbar puncture for the purpose creating a pressure release for her cerebral spinal fluid during the operation. They said that the amount of bleeding was concerning and not normal. They had blood samples sent to hematology for analysis.
Oh God. What else is wrong with her? Are there more ghosts to reveal?
Both of our hearts were gasping on the floor beneath us.
In my own head I was screaming--what about her bone marrow transplant?! We need her healed from the surgery so that she can proceed with life saving treatment--and surgery is postponed for another month...!!!?
But, as of such, they all concurred that it was not in her best interest to go forward yesterday--a call to Cunningham and to Dr. Manley at Seattle Cancer Care Alliance had them agreeing as well. According to the anesthesiologist, all the doctors involved in the OR got out their calendars and settled on a good day to reschedule for.
Talking to Cunningham later, he said that a November 6th reschedule is very expeditious. I'll have to trust him on that.
We were told that they needed time to get Zoe released from surgery prep; we would see her in a room in about an hour. We would need to spend the night so they could observe her. The tube in her throat had "stirred things up" and now, they said, she sounded a bit rough in her breathing.
Cunningham visited us for a bit about 30minutes later. He had gotten out of a meeting and headed straight for us. He was able to assuage our fears saying that it was unlikely another ghost in Zoe's closet was waiting to be revealed. He also said that a month delay was not a tremendous thing to be worried about as far as the BMT goes.
Zoe's issue has been progressing all her life, he said, and another month was not likely to be the make or break point. He said, too, that her hematocrit levels (red blood cell count) were actually up a bit since the last time they looked, so she was holding steady as far as blood production and storage was going.
If Zoe's having surgery that day was seen as a life or death issue, they would have progressed with it. Cunningham said they have ways of dealing with infection and colds, if need really be, and, if it came down to it, they would definitely proceed in the future if overall protocol demanded it (as far as needing to get the BMT process started).
An hour later had us waiting in a hospital room for Zoe. Zoe came in on a big bed with a crazy haircut--a shaved strip from ear to ear. We could see remnants of the jagged line they had drawn where they had planned to cut the scalp.
The next few hours were simply spent feeding and holding her. She was groggy, but doing great.During that time we were visited by the hematologist, who came to give us the results of the blood panel. She took a very long time getting to the point (so hard not to scream: Just tell me what's wrong!!!), but the bottom line was, she really couldn't explain what was the reason for Zoe's profuse bleeding. None of the extensive tests revealed anything that would say. She asked Jeff and I if we had a family history of blood or bleeding issues. We told her, not that we knew of.
Please, if you are family and you know differently, let us know. It could be a missing link.
She left us with the remark that she would be doing more looking into Zoe's case. Hopefully, Cunningham's opinion that there are no more ghosts to be found will hold true...
As we were down the hall from the SCCA portion of the hospital where the BMT's are performed, Jeff and I left Zoe sleeping under the watchful eyes of Cinny and Jack and did a little reconnaissance. We only got to peek at the entrance of the unit as signs plastered everywhere reminded us not to spread germs (we had been holding a possibly sick Zoe), but a helpful childcare specialist from the unit came back to our room with us to tell us about some of what to expect when we return for the BMT.
More on that in a later post.
Zoe's continued great progress got us home last night. Thankfully we didn't have to spend the night; the "double bed" for the parents looked suspiciously like a single.
We all got some great sleep last night--thanks to the one benefit I can see regarding Zoe's unnecessary anesthesia.
She seemed pretty fine today. It's hard to know if her raspy voice is due to a cold, or to irritation from the different breathing tubes shoved down her throat. Currently she's asleep and breathing fine. I wonder if she is really coming down with something.
What does it mean if she doesn't? Will it have been canceled for nothing?
-------------------------------------
On another bent--great, great news came today from SCCA.
Preliminarily, there have been found two, possibly three "ten out of ten" bone marrow matches for Zoe.
Ten out of ten is the best possible match for an unrelated donor.
Much more needs to be done in the way of verifying and locking in a donor--but this early news is phenomenal.
Many have asked if she has the type of osteopetrosis that can be treated with a BMT--I guess I wasn't as clear about that as I should have been in earlier posts.
Ultimately, it's not absolutely certain. This was to be expected, according to Dr. Manley at SCCA. Osteopetrosis is so rare that they don't have all of the gene mutations identified. One of the two mutations present in Zoe is not recognized.
According to Dr. Cunningham, whose area of expertise includes molecular biology, his educated guess is that she has a type that responds to BMT's. Even so, and even with a "10 out of 10" match in bone marrow, her prognosis is still 50/50 as far as being healed.
The ultimate glass half empty/half full scenario in terms of how we sit with this.
This is so big, and I feel so small and stiff and unequal to the challenge.
All I can do is surrender, over and over again.
Thursday, October 9, 2008
Ugh
Too wrought to write.
We are home; Zoe's asleep.
No sign of a cold yet.
However, she does have a wicked case of what sounds like smoker's voice after having a tube shoved down her throat.
Off to bed.
Will fill in the blanks tomorrow.
We are home; Zoe's asleep.
No sign of a cold yet.
However, she does have a wicked case of what sounds like smoker's voice after having a tube shoved down her throat.
Off to bed.
Will fill in the blanks tomorrow.
Zoe's Surgery has been Canceled
We all showed up at 6:45am to get Zoe into surgery.
The blood work from yesterday showed that she has an elevated WBC (white blood cell) count. There was a concern that she may be just starting a cold, but she had no symptoms to date.
The general consensus was it would just make recovery all the more uncomfortable, as she would have a cold showing up just about then.
But when the anesthesiologist got Zoe under sedation the breathing tube would not insert into her trachea due to constant spasming and marked inflammation. They tried dialating her trachea, but it did not work. There was also concern of creating further complications such as pneumonia, so the surgery has been rescheduled for Nov 6, 2008.
They are giving 3 weeks minimum for Zoe's lungs to recover from her upcoming cold and they also had to bump other kids off the queue to get her in that soon.
Jeff and Kellie will update the blog as soon as they can. They will most likely be leaving the hospital tomorrow. Zoe is staying in the hospital tonight for observation.
Note to the PEPS group: please no food delivery to the hospital.
Thanks,
Amy S Wells, ND, LMP
The blood work from yesterday showed that she has an elevated WBC (white blood cell) count. There was a concern that she may be just starting a cold, but she had no symptoms to date.
The general consensus was it would just make recovery all the more uncomfortable, as she would have a cold showing up just about then.
But when the anesthesiologist got Zoe under sedation the breathing tube would not insert into her trachea due to constant spasming and marked inflammation. They tried dialating her trachea, but it did not work. There was also concern of creating further complications such as pneumonia, so the surgery has been rescheduled for Nov 6, 2008.
They are giving 3 weeks minimum for Zoe's lungs to recover from her upcoming cold and they also had to bump other kids off the queue to get her in that soon.
Jeff and Kellie will update the blog as soon as they can. They will most likely be leaving the hospital tomorrow. Zoe is staying in the hospital tonight for observation.
Note to the PEPS group: please no food delivery to the hospital.
Thanks,
Amy S Wells, ND, LMP
Here we go
We leave in 15 minutes for the hospital.
Zoe is sleeping soundly (after spending much of the night awake).
Okay, Little Angel--a big day ahead...
Thanks so much for all your calls and emails of support.
News to come as the day unfolds.
Zoe is sleeping soundly (after spending much of the night awake).
Okay, Little Angel--a big day ahead...
Thanks so much for all your calls and emails of support.
News to come as the day unfolds.
Wednesday, October 8, 2008
Today's appointments
Today, another round of pre-operative meetings--this time with Neurosurgery and Anesthesia.
The neurosurgery ARNP met with us at 10am--and walked us through some of what is to go on tomorrow. What we know:
Check in at 6:45am
Surgery is considered "Day 0". The swelling will steadily increase until about Day 4, when it begins to recede. The drain will be taken out generally on Day 2. Day 1 is when post op patients for this surgery leave ICU. For Zoe this should be Friday afternoon, if all goes well.
Only one of us (me) will be able to stay with Zoe overnight in the ICU; both of us will be able to stay with her once she is released to regular hospital care.
They expect her to be in the hospital for 5-6 days. They want to see that her swelling is receded enough for her to be able to open her eyes as well as tolerating food and liquids.
We got the tour--the joint is pretty well stocked. Yay Seattle Children's.
Yay us.
On the agenda for tomorrow:
For Zoe--
For Jeff and Kellie
Off to finish packing--write to you tomorrow...
The neurosurgery ARNP met with us at 10am--and walked us through some of what is to go on tomorrow. What we know:
Check in at 6:45am
- Pre-exam will happen then where they will make certain that she didn't develop a cold overnight
- They will sedate her, put the IV in her for meds, give her a bladder catheter, cover her with warm blankets and shave the strip of her head ear to ear where the incision will be (apparently they will give us a little baggy with that hair in it)
- Her procedure will start at 7:30am
- Surgery duration has been scheduled for 8.5 hours
- A nurse will page us every one to two hours with updates
- Once the surgery is completed the surgeons with come meet with us, meanwhile Zoe will be taken for a CAT scan and then settled in the ICU where we will then be able to see her--probably around 5pm. She will have a drain coming out of her head. (I've seen pictures of other babies post op--it's not pretty)
Surgery is considered "Day 0". The swelling will steadily increase until about Day 4, when it begins to recede. The drain will be taken out generally on Day 2. Day 1 is when post op patients for this surgery leave ICU. For Zoe this should be Friday afternoon, if all goes well.
Only one of us (me) will be able to stay with Zoe overnight in the ICU; both of us will be able to stay with her once she is released to regular hospital care.
They expect her to be in the hospital for 5-6 days. They want to see that her swelling is receded enough for her to be able to open her eyes as well as tolerating food and liquids.
We got the tour--the joint is pretty well stocked. Yay Seattle Children's.
Yay us.
On the agenda for tomorrow:
For Zoe--
For Jeff and Kellie
- sitting
- waiting
- hoping
- praying
- Jeff: crossword puzzle
- Kellie: blogging throughout the day
Off to finish packing--write to you tomorrow...
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