Today Dr. Manley said that it seemed reasonable to aim for Zoe being discharged a week from this coming Monday. Wow!
She is almost completely off all her IV medications. In a few days she will be weaned off of her morphine drip and will be able to be unhooked from her IV for several hours at a time. Provided that she continues to do well, they will actually have us leave the hospital with her for 4 hours at a time the few days leading up to her discharge so that we can experience little stints of having her back in the real world.
I'm liking the idea of practice time.
I have a prayer/good vibes request for my oldest brother Dave's wife Colleen. She's been battling breast cancer for almost three years, almost had it licked, and just this week got some very bad news about its spread. Zoe is doing so much better, so please use the powerful force of all the prayers and thoughts you've been sending her way, and beam them to my sister-in-law Colleen Marie Newton. She needs all the help she can get.
I know from experience that you all can work miracles.
Thank you.
Saturday, February 28, 2009
Friday, February 27, 2009
Day +37
We had our first official meeting with the transition nurse today. The magnitude of how much work Zoe will be for the next few months is finally hitting me.
Zoe will be discharged with an immune system that is not even as strong as a newborn's. It will be up to us to monitor her for fevers and other signs of infection, give her medications, take her to multiple clinic visits a week, keep her out of germs' way, and maintain a sense of normalcy for her and for us (ideally).
We are definitely up for the challenge--and it's just something new to wrap my brain around. I've been so focused on pacing myself through this current, acute, hospital internment that this glimpse of the road ahead seems a little daunting.
It's a cross-country run when I've only been training for the short, mad dash.
A volunteer came today to play with Zoe while Jeff was off at work. I got to take a walk to the nearby nature preserve under a warm sun and brilliant blue sky. No eagles today--but I did see seven turtles sunning themselves on floating logs, their little heads all pointing the same way.
North. Home.
Coincidence?
Zoe will be discharged with an immune system that is not even as strong as a newborn's. It will be up to us to monitor her for fevers and other signs of infection, give her medications, take her to multiple clinic visits a week, keep her out of germs' way, and maintain a sense of normalcy for her and for us (ideally).
We are definitely up for the challenge--and it's just something new to wrap my brain around. I've been so focused on pacing myself through this current, acute, hospital internment that this glimpse of the road ahead seems a little daunting.
It's a cross-country run when I've only been training for the short, mad dash.
A volunteer came today to play with Zoe while Jeff was off at work. I got to take a walk to the nearby nature preserve under a warm sun and brilliant blue sky. No eagles today--but I did see seven turtles sunning themselves on floating logs, their little heads all pointing the same way.
North. Home.
Coincidence?
Thursday, February 26, 2009
Day +36
Out of isolation---and into transition!
Today's rounding of the team included a woman introduced to us as the "transition nurse" that will help us with the process of transitioning from the hospital to home. The team says that if Zoe continues to do as well as she is doing, we will be home in the next couple weeks.
So great!
Dr. Manley just beamed this morning when he saw Zoe. He is so thrilled with her progress and the robust vitality that is exuding from her. He said that it's patients like Zoe that make him really love his job.
As I wrote a friend the other day, I am daring to hope--and that terrifies me!
Today's rounding of the team included a woman introduced to us as the "transition nurse" that will help us with the process of transitioning from the hospital to home. The team says that if Zoe continues to do as well as she is doing, we will be home in the next couple weeks.
So great!
Dr. Manley just beamed this morning when he saw Zoe. He is so thrilled with her progress and the robust vitality that is exuding from her. He said that it's patients like Zoe that make him really love his job.
As I wrote a friend the other day, I am daring to hope--and that terrifies me!
Wednesday, February 25, 2009
Day +35
I was wrong. The nasal wash results didn't come back this morning; they're still pending. So, still on isolation.
Zoe's day was packed with entertainment. This morning she had a lovely visit from a folk singer named Betty Bender who sang and played her guitar, three volunteers came to play with her at different times, she was visited by the music therapist David, and two different occupational therapists came to work with her--one for swallowing with bottle feeds, the other for tummy time. She ate it all up.
I think this girl might go through a little center-of-attention withdrawal once she checks out of here. Well, no doubt we all will for that matter!
I got to escape with a girlfriend for lunch at a nearby sushi place, and do a little birthday shopping for my main man. His birthday is next Tuesday, March 3rd--and will be his second in a row spent at Seattle Children's hospital. Last year's birthday marked the first of many diagnostic procedures (her first MRI) and the beginning of six months of endless searching in our quest to figure out what was wrong with Zoe.
I'm holding out the vision that Jeff's NEXT birthday (and a milestone year for that matter) will be a rocking celebration on many levels and held nowhere close to Seattle Children's!
Zoe's day was packed with entertainment. This morning she had a lovely visit from a folk singer named Betty Bender who sang and played her guitar, three volunteers came to play with her at different times, she was visited by the music therapist David, and two different occupational therapists came to work with her--one for swallowing with bottle feeds, the other for tummy time. She ate it all up.
I think this girl might go through a little center-of-attention withdrawal once she checks out of here. Well, no doubt we all will for that matter!
I got to escape with a girlfriend for lunch at a nearby sushi place, and do a little birthday shopping for my main man. His birthday is next Tuesday, March 3rd--and will be his second in a row spent at Seattle Children's hospital. Last year's birthday marked the first of many diagnostic procedures (her first MRI) and the beginning of six months of endless searching in our quest to figure out what was wrong with Zoe.
I'm holding out the vision that Jeff's NEXT birthday (and a milestone year for that matter) will be a rocking celebration on many levels and held nowhere close to Seattle Children's!
Tuesday, February 24, 2009
Day +34
Zoe's great--and they've put us back on isolation as her nose is runny.
Not a huge deal. Isolation means that we can't hang out in the public places on the unit, we can't put leftovers in the fridge, and that everyone who comes into our room has to gown and glove up and wear a mask. They reinstated isolation until the results of today's nasal wash comes back tomorrow morning. They don't want to risk her having a bug that other compromised kids could catch.
At least we know they're fastidious.
We'll see tomorrow, but Jeff and I are guessing the runny nose is in reaction to the formula they started her on yesterday through her NG tube. Just 8 ml an hour, but it's enough to get her gut used to food again. As we've never really given her cow milk based food, we're thinking it might be a reaction to the dairy.
I am really starting to think that Zoe is reaching a level of vitality she didn't even have prior to this current hospital stay. It's as though the new bone marrow is infusing her with energy she had previously lacked. I can't wait to see what she's like when her numbers are fully back to normal!
I've had to shake my head at myself today. Today's nurse was new to us: a young gal too eager to please and altogether too quick to apologize for any little thing that didn't merit an apology. It just irritated me. The more she apologized, the more irritated and curt I became--which in turn caused her to apologize more.
Poor girl. While it's great working with kids, I'm sure it's the over-stretched parents the staff here could probably do without sometimes.
Hey, I try, but some days...
Not a huge deal. Isolation means that we can't hang out in the public places on the unit, we can't put leftovers in the fridge, and that everyone who comes into our room has to gown and glove up and wear a mask. They reinstated isolation until the results of today's nasal wash comes back tomorrow morning. They don't want to risk her having a bug that other compromised kids could catch.
At least we know they're fastidious.
We'll see tomorrow, but Jeff and I are guessing the runny nose is in reaction to the formula they started her on yesterday through her NG tube. Just 8 ml an hour, but it's enough to get her gut used to food again. As we've never really given her cow milk based food, we're thinking it might be a reaction to the dairy.
I am really starting to think that Zoe is reaching a level of vitality she didn't even have prior to this current hospital stay. It's as though the new bone marrow is infusing her with energy she had previously lacked. I can't wait to see what she's like when her numbers are fully back to normal!
I've had to shake my head at myself today. Today's nurse was new to us: a young gal too eager to please and altogether too quick to apologize for any little thing that didn't merit an apology. It just irritated me. The more she apologized, the more irritated and curt I became--which in turn caused her to apologize more.
Poor girl. While it's great working with kids, I'm sure it's the over-stretched parents the staff here could probably do without sometimes.
Hey, I try, but some days...
Monday, February 23, 2009
Day +33
Just more of the same good news. Feels nice to be a bit boring!
They have started to gradually taper her off the prednisone, decrease her morphine dose everyday, and have begun to pump a little formula into her stomach to get Zoe's digestion back on line.
A friend asked me via email today "Now what? Will she now begin to grow and dissolve bones? Will she grow relatively normally? Are there more procedures coming up? What are the upcoming questions to watch for?"
All very good questions that I don't really have answers for.
That's the problem with having a very rare disorder: there aren't many road maps to follow.
Certainly there are documented examples of children on the other side of osteopetrosis, and when we are sufficiently out of the current mire of Zoe's stem cell transplant and survival (still not a given, but oh-so-much more hopeful), we will definitely research more about what to expect next.
I remember hastily glancing through an osteopetrosis website months ago, not wanting to stay on long enough to read horror stories, but did explore it enough to see that there were no osteopetrosis specialists listed in Seattle.
The transplant team has mentioned many times the last osteopetrosis patient to come through their unit, and has indicated they would be open to asking his parents if they would be willing to talk to us when we are ready. Their boy is 4 years post transplant and, from bits of information dropped, he's an active boy, was transplanted in time to avoid vision loss, and is still dealing with chronic skin GVHD 4 years later. If that contact could be made it would likely give us an idea of practitioners who could best help us.
As far as what we know we can expect in the near future, Zoe will still need to avoid people with colds and flu, and public gathering spaces for a year after her transplant. If we can't avoid taking her with us to some place public, the directive is to go at non-peak times.
For months after she is discharged from Seattle Children's, she will have twice or more weekly clinic appointments for medicine and blood product infusions. I don't know how long those visits will stretch out--I'm sure it's up to how well she does post transplant.
With her head looking as deformed as it is, Zoe will likely need another cranial surgery in another couple years. Hopefully her bones and dura-mater will be significantly healthier by then and less like an 80 year-old's, as the neurosurgeon described.
Hopefully her bones will remodel, hopefully she will begin to grow normally, get the normal strength of a child her age, and experience all the biological things that a child with osteoclasts normally experiences.
But, we don't really know. Whoever said that life is a grand mystery wasn't joking.
They have started to gradually taper her off the prednisone, decrease her morphine dose everyday, and have begun to pump a little formula into her stomach to get Zoe's digestion back on line.
A friend asked me via email today "Now what? Will she now begin to grow and dissolve bones? Will she grow relatively normally? Are there more procedures coming up? What are the upcoming questions to watch for?"
All very good questions that I don't really have answers for.
That's the problem with having a very rare disorder: there aren't many road maps to follow.
Certainly there are documented examples of children on the other side of osteopetrosis, and when we are sufficiently out of the current mire of Zoe's stem cell transplant and survival (still not a given, but oh-so-much more hopeful), we will definitely research more about what to expect next.
I remember hastily glancing through an osteopetrosis website months ago, not wanting to stay on long enough to read horror stories, but did explore it enough to see that there were no osteopetrosis specialists listed in Seattle.
The transplant team has mentioned many times the last osteopetrosis patient to come through their unit, and has indicated they would be open to asking his parents if they would be willing to talk to us when we are ready. Their boy is 4 years post transplant and, from bits of information dropped, he's an active boy, was transplanted in time to avoid vision loss, and is still dealing with chronic skin GVHD 4 years later. If that contact could be made it would likely give us an idea of practitioners who could best help us.
As far as what we know we can expect in the near future, Zoe will still need to avoid people with colds and flu, and public gathering spaces for a year after her transplant. If we can't avoid taking her with us to some place public, the directive is to go at non-peak times.
For months after she is discharged from Seattle Children's, she will have twice or more weekly clinic appointments for medicine and blood product infusions. I don't know how long those visits will stretch out--I'm sure it's up to how well she does post transplant.
With her head looking as deformed as it is, Zoe will likely need another cranial surgery in another couple years. Hopefully her bones and dura-mater will be significantly healthier by then and less like an 80 year-old's, as the neurosurgeon described.
Hopefully her bones will remodel, hopefully she will begin to grow normally, get the normal strength of a child her age, and experience all the biological things that a child with osteoclasts normally experiences.
But, we don't really know. Whoever said that life is a grand mystery wasn't joking.
Sunday, February 22, 2009
Day +32
Dr. Manley showed up and was all smiles and admiration for how well Zoe is doing compared to the last time he saw her. Tomorrow they will start to wean her off the prednisone and see whether the GVH rash for which it was prescribed will stay away.
Today our favorite nurse shooed Jeff and I away for a couple hours outside the hospital. For the first time in six weeks (well, much longer than that if we include the weeks leading up to admission)--a date! We drove to a cafe where Jeff's nephew has a photo art show hung (fabulous work, Isaac!). Friends who live a couple blocks away came and ate with us--it was so great to experience some carefree normalcy. And, Zoe was lovely and charming for the nurse while we were gone.
Zoe continues to get more and more active, expressive and opinionated. I'm amazed at how fast her strength is returning--I'm thinking she might just learn how to sit up on her own by the time we leave here. Small accomplishment for a 13.5 month old, but a HUGE leap in ability for this little girl!
Manley said that next on the agenda for Zoe is the process of transitioning her out of here. It will take awhile, but it's the first time the words have been said. Yay!
Of course, it ain't over 'til it's over, but I'll take it.
Today our favorite nurse shooed Jeff and I away for a couple hours outside the hospital. For the first time in six weeks (well, much longer than that if we include the weeks leading up to admission)--a date! We drove to a cafe where Jeff's nephew has a photo art show hung (fabulous work, Isaac!). Friends who live a couple blocks away came and ate with us--it was so great to experience some carefree normalcy. And, Zoe was lovely and charming for the nurse while we were gone.
Zoe continues to get more and more active, expressive and opinionated. I'm amazed at how fast her strength is returning--I'm thinking she might just learn how to sit up on her own by the time we leave here. Small accomplishment for a 13.5 month old, but a HUGE leap in ability for this little girl!
Manley said that next on the agenda for Zoe is the process of transitioning her out of here. It will take awhile, but it's the first time the words have been said. Yay!
Of course, it ain't over 'til it's over, but I'll take it.
Saturday, February 21, 2009
Day +31
Minor stuff to tell, really.
Zoe is still on methylprednisone for the skin GVH--and it just ratchets her mood all over the place. I think the steroid spikes are wearing on her; she is often inconsolably whiny (totally understandable) and we are doing our best to distract her.
Today was the last day of the current attending doctor's rotation. Tomorrow we see Manley again and will have him for the next two weeks. We certainly have our preferred doctors as far as personalities go, but we really feel that the right attending doctors have been present at the perfect times in terms of their adroitness at handling each challenge Zoe has presented.
And, it will be fun to have Manley back.
Thank you all for your enthusiasm at our attaining engraftment. What a most excellent cheering squad you all make! My ears are still delightedly ringing from the collective shout of joy.
WOOT!
Zoe is still on methylprednisone for the skin GVH--and it just ratchets her mood all over the place. I think the steroid spikes are wearing on her; she is often inconsolably whiny (totally understandable) and we are doing our best to distract her.
Today was the last day of the current attending doctor's rotation. Tomorrow we see Manley again and will have him for the next two weeks. We certainly have our preferred doctors as far as personalities go, but we really feel that the right attending doctors have been present at the perfect times in terms of their adroitness at handling each challenge Zoe has presented.
And, it will be fun to have Manley back.
Thank you all for your enthusiasm at our attaining engraftment. What a most excellent cheering squad you all make! My ears are still delightedly ringing from the collective shout of joy.
WOOT!
Friday, February 20, 2009
Day +30: OFFICIALLY ENGRAFTED!!!
Well, actually it is official as of Day +29, but they didn't know for certain until this morning.
Engrafted! Ta-dah! What a lovely thing to be able to say.
And, her chimerism report came back--all donor cells in Zoe! More great news!
And--even more, fabulous news--we are no longer in "isolation." So, we now have refrigerator privileges, can hang out in common spaces in the unit, and nurses no longer have to gown and mask up when they come into the room.
It's a tremendous burden off everyone's back. And after six weeks. Phew! Long time.
Zoe had a nasal-gastric tube inserted today under sedation. As her platelets have been holding steady around the 50+ mark, they decided it was a good time to place it. The NG tube allows more medication to be taken orally without the need for Zoe to try to swallow it all.
One of the medications they want to start giving Zoe orally is the antiviral medication acyclovir as there is currently a nation-wide shortage that has finally resulted in no IV version of the product to be had. The only option now is the oral variety.
Talking to a PA who has been working on this unit since 1992, she told us that she has never seen this sort of thing happen before. The shortage means that there are children just now starting their chemo regimen who will not be able to have acylovir at all at the point when their mucositis gets bad enough to not be able to take meds orally. It's a critical drug that helps to fight infection while immune systems are offline. I feel bad for those kids--and am so grateful that Zoe got through the most dangerous part of her process while the drug could still be had.
No one seems to know why there is a shortage. I would really hate to hear it has anything to do with profits or politics.
But, back to the good news! Engraftment! Such a pleasant, altogether different song to sing than the ominous one ripping through my head last Sunday...
Engrafted! Ta-dah! What a lovely thing to be able to say.
And, her chimerism report came back--all donor cells in Zoe! More great news!
And--even more, fabulous news--we are no longer in "isolation." So, we now have refrigerator privileges, can hang out in common spaces in the unit, and nurses no longer have to gown and mask up when they come into the room.
It's a tremendous burden off everyone's back. And after six weeks. Phew! Long time.
Zoe had a nasal-gastric tube inserted today under sedation. As her platelets have been holding steady around the 50+ mark, they decided it was a good time to place it. The NG tube allows more medication to be taken orally without the need for Zoe to try to swallow it all.
One of the medications they want to start giving Zoe orally is the antiviral medication acyclovir as there is currently a nation-wide shortage that has finally resulted in no IV version of the product to be had. The only option now is the oral variety.
Talking to a PA who has been working on this unit since 1992, she told us that she has never seen this sort of thing happen before. The shortage means that there are children just now starting their chemo regimen who will not be able to have acylovir at all at the point when their mucositis gets bad enough to not be able to take meds orally. It's a critical drug that helps to fight infection while immune systems are offline. I feel bad for those kids--and am so grateful that Zoe got through the most dangerous part of her process while the drug could still be had.
No one seems to know why there is a shortage. I would really hate to hear it has anything to do with profits or politics.
But, back to the good news! Engraftment! Such a pleasant, altogether different song to sing than the ominous one ripping through my head last Sunday...
Thursday, February 19, 2009
Day +29: Almost There
Today the neutrophil count was over 1200 at 36 hours post the final dose (half dose really) of growth factor. At rounds this morning the doc said that if her numbers continue to trend upward in tomorrow's lab reports, then they will consider today as officially engrafted!
Come on morning's numbers!
Last night was a repeat of the night before--many soundings of the oxigen monitor's alarm as Zoe constantly dipped into the 80's in oxygen saturation percentage. They're not quite certain what to make of that. We'll see how tonight goes.
Come on morning's numbers!
Last night was a repeat of the night before--many soundings of the oxigen monitor's alarm as Zoe constantly dipped into the 80's in oxygen saturation percentage. They're not quite certain what to make of that. We'll see how tonight goes.
Wednesday, February 18, 2009
Day +28
Neutrophil count up past 900 today, one last dose of the growth factor, and we'll see what her numbers do after tomorrow. We are still awaiting the results of the chimerism report that will tell us whose cells are dominant in Zoe: the donor's (good), or Zoe's (not good).
Last night was a bit of a rough one. Zoe's total oxygenation saturation levels continually dropped into the 80's while she was sleeping, even with pure oxygen being blown directly into her face. The alarm monitor kept going off, nurses and the PA constantly came in to check on her, and her lungs sounded somewhat ragged.
As the same thing happened today while she napped, they whisked her in for a chest CT scan to see if there was any infection to be blamed. Nothing; clear. And tonight her lungs sound fine, so far.
We'll see how the rest of the night goes. The little tyke gets a kick out of keeping everyone on their toes.
Her steroidal perkiness continued today. It's great having an alert and chipper baby again--and this alert baby is demanding to be entertained every minute that she is awake. When she gets bored--which is usually three minutes after we leave her bedside--she screams until one of us comes back and talks to her. Then it's instant sunny skies and delighted babbling.
Of course, I know she is effectively training us (and we her) with this activity, but we are total pushovers right now (as we should be). All hail Princess Zoe!
Helpful with Zoe entertainment today was another visit from David the music therapist. Check the YouTube link if you'd like to see a snippet of that--we are turning into quite the musical family.
Last night was a bit of a rough one. Zoe's total oxygenation saturation levels continually dropped into the 80's while she was sleeping, even with pure oxygen being blown directly into her face. The alarm monitor kept going off, nurses and the PA constantly came in to check on her, and her lungs sounded somewhat ragged.
As the same thing happened today while she napped, they whisked her in for a chest CT scan to see if there was any infection to be blamed. Nothing; clear. And tonight her lungs sound fine, so far.
We'll see how the rest of the night goes. The little tyke gets a kick out of keeping everyone on their toes.
Her steroidal perkiness continued today. It's great having an alert and chipper baby again--and this alert baby is demanding to be entertained every minute that she is awake. When she gets bored--which is usually three minutes after we leave her bedside--she screams until one of us comes back and talks to her. Then it's instant sunny skies and delighted babbling.
Of course, I know she is effectively training us (and we her) with this activity, but we are total pushovers right now (as we should be). All hail Princess Zoe!
Helpful with Zoe entertainment today was another visit from David the music therapist. Check the YouTube link if you'd like to see a snippet of that--we are turning into quite the musical family.
Tuesday, February 17, 2009
Day +27
Neutrophil count was over 700 today! The PA tried to tell us that Zoe was engrafted, but the attending corrected her and said the numbers were really a reflection of "cheating."
The growth factor is really what has boosted the count; the real test will be whether the numbers hold after they take her off of the growth factor. It's expected to see some sort of a drop, according to the doc, but just how far the drop goes is the question. Today was the last dose for now, then they'll see what the numbers do.
Yee haw.
But! It's been good to relax a bit again in the last couple days. Zoe's personality has taken an interesting jag--she's been a little precocious spit-fire. She jibber jabbers and screams just for the hell of it--and then cries bloody murder if someone touches her against her will.
Much of this new side of her is due to the steroids that they put her on this morning. With the increase of the neutrophil count has been a flare of an angry red, very itchy rash they are attributing to GVH. Expected, expected they assure us, but they want to stop it before it progresses: hence the steroids.
Heard of "'Roid rage"? Well, we are seeing a bit of that in Zoe. It mostly makes us laugh when she gets inordinately pissed off because she's just so dang cute. I'm sure she doesn't appreciate us chuckling at her tizzies, but it really can't be helped.
Later this afternoon I took a basketball from the play yard, walked to a waterfront pocket park in the nearby neighborhood, and shot baskets in the setting sun while listening to luscious music on my little ipod shuffle. The UW rowing team made beautiful silhouettes skimming across the water, ducks wandered at the shore, and for 20 minutes I was in blissful Perfection.
What was I worried about...?
The growth factor is really what has boosted the count; the real test will be whether the numbers hold after they take her off of the growth factor. It's expected to see some sort of a drop, according to the doc, but just how far the drop goes is the question. Today was the last dose for now, then they'll see what the numbers do.
Yee haw.
But! It's been good to relax a bit again in the last couple days. Zoe's personality has taken an interesting jag--she's been a little precocious spit-fire. She jibber jabbers and screams just for the hell of it--and then cries bloody murder if someone touches her against her will.
Much of this new side of her is due to the steroids that they put her on this morning. With the increase of the neutrophil count has been a flare of an angry red, very itchy rash they are attributing to GVH. Expected, expected they assure us, but they want to stop it before it progresses: hence the steroids.
Heard of "'Roid rage"? Well, we are seeing a bit of that in Zoe. It mostly makes us laugh when she gets inordinately pissed off because she's just so dang cute. I'm sure she doesn't appreciate us chuckling at her tizzies, but it really can't be helped.
Later this afternoon I took a basketball from the play yard, walked to a waterfront pocket park in the nearby neighborhood, and shot baskets in the setting sun while listening to luscious music on my little ipod shuffle. The UW rowing team made beautiful silhouettes skimming across the water, ducks wandered at the shore, and for 20 minutes I was in blissful Perfection.
What was I worried about...?
Monday, February 16, 2009
Day +26: And Up Again
I figured I had better update for today sooner rather than later, given my last post.
Just one dose of the growth factor boosted her neutrophil count in this morning's labs to 524. Her WBC's were 1.2. The doc said that such a dramatic reaction to the growth factor could only happen with someone on the verge of engrafting.
*long sigh of relief*
They will cut the growth factor dose in half today--as two side effects I neglected to mention are bone pain and spleen growth--and see if her numbers hold.
Heavens. What a ride.
Just one dose of the growth factor boosted her neutrophil count in this morning's labs to 524. Her WBC's were 1.2. The doc said that such a dramatic reaction to the growth factor could only happen with someone on the verge of engrafting.
*long sigh of relief*
They will cut the growth factor dose in half today--as two side effects I neglected to mention are bone pain and spleen growth--and see if her numbers hold.
Heavens. What a ride.
Sunday, February 15, 2009
Day +25: Ugh.
I wish I knew how to start this post; I sit here and stare at the screen and will myself to type.
The doctor expressed concern this morning at the trend she's seeing in Zoe's lab reports. Her neutrophil count has been trending downward for several days. Each day it was lower the message was always, "Don't worry, this is part of what happens." But, when today's count logged 150, down from what had been 473 last week, and her WBC's were still staying below 1.0 at today's count of .8, the doc said they needed to look at what was going on.
It's taken several sessions of asking questions today to get this basic outline of what's possibly at issue, so here's the best I can do at outlining the salient points we heard today:
Really though, no one knows. We won't know for possibly up to two weeks whether she's rejecting her graft, and the prospect of that just makes me want to collapse into a heap. I thought I was doing a good job of holding it together--and, I will do a good job of that again-- but this is frankly kicking me in the ass right now.
Jeff called me about thirty minutes ago with the "good news" that the latest batch of matched donor platelets kicked her up to 60. I was pleased, until I wrote that damned paragraph outlining hopeful signs that included her body not getting boosts from the platelets. So, I'm sitting here at home at 10pm without a doctor to ask whether this miraculous bump is actually a bad sign that her donor cells are petering out.
See how my mind goes? Somebody just shoot me.
The doctor expressed concern this morning at the trend she's seeing in Zoe's lab reports. Her neutrophil count has been trending downward for several days. Each day it was lower the message was always, "Don't worry, this is part of what happens." But, when today's count logged 150, down from what had been 473 last week, and her WBC's were still staying below 1.0 at today's count of .8, the doc said they needed to look at what was going on.
It's taken several sessions of asking questions today to get this basic outline of what's possibly at issue, so here's the best I can do at outlining the salient points we heard today:
- Osteopetrotic babies, due to the reduced bone marrow space, take longer to engraft, so it's still possible that what we are seeing in the numbers fluxuation is just an engraftment that's taking its own sweet time.
- Zoe is on two medications, acyclovir--an antiviral-- and meropenem--a broad antibiotic, that in a very small percentage of patients (we're talking <.1%) have a side effect of neutropenia, that is, the reduction or stunting of neutrophil production. They will take her off of acyclovir for a week and switch her from meropenem to another antibiotic to see if her neutrophil count climbs back up.
- The doctor will also be putting Zoe on a growth factor drug that stimulates the production of neutrophils. They had held off on this approach prior to now as one of the side effects of the growth factor drug is its role in delaying the production of platelets even further. As the numbers had been going in Zoe's favor, they hadn't seen the growth factor as necessary. Now that her numbers are apparently trending downward, the benefits outweigh the risks.
- Osteopetrotic babies undergoing transplant have an elevated rate of graft rejection. That is the specter I have been wrestling with all day since word of her lab numbers came through this morning. If her body is rejecting the graft, there is really nothing to be done about it. If that is what is happening, the only course of action is to start the process all over again. The idea of it just floors me. But, the doctor tells me not to go there yet. (Can't help it when I'm this tired and scared.)
- There are hopeful signs which point to the donor cells taking hold: the fact that her body keeps chewing up the platelets (the donor cells are doing this) and the stabilization of her calcium levels (a possible sign that the needed osteoclasts are present). Also, the fact that her weight has jumped up a couple pounds in just the last week and a half could possibly have caused a dilution of her numbers in relation to the overall fluid volume she's carrying.
Really though, no one knows. We won't know for possibly up to two weeks whether she's rejecting her graft, and the prospect of that just makes me want to collapse into a heap. I thought I was doing a good job of holding it together--and, I will do a good job of that again-- but this is frankly kicking me in the ass right now.
Jeff called me about thirty minutes ago with the "good news" that the latest batch of matched donor platelets kicked her up to 60. I was pleased, until I wrote that damned paragraph outlining hopeful signs that included her body not getting boosts from the platelets. So, I'm sitting here at home at 10pm without a doctor to ask whether this miraculous bump is actually a bad sign that her donor cells are petering out.
See how my mind goes? Somebody just shoot me.
Saturday, February 14, 2009
Day +24
Good day, Rough night!
A malfunction in the morphine pump led to Zoe not getting her steady dose of morphine. Things got rough at around 4 am and again at 6:30 am. She was given boluses of morphine at of those times and that calmed her immediately. The malfunction was fixed and the rest of the morning was playing catch up with her pain levels. Things smoothed out and the rest of the day she was interactive, cheerful and pain free.
We are still doing the platelet body fluid dance. No bump from last nights transfusion. Her belly is still soo big. A good dose of lasix helped her reduce fluids, but as I left they were finishing a platelet transfusion to be followed by blood later in the evening.
We keep on dancing.
P.S. Happy Valentines to ya'll
Kellie and I got out to take a walk together in today's sunshine. It has been quit a while since we both got out together. We saw a pair of eagles do their air ballet and talked about our girl. A good time!!!
A malfunction in the morphine pump led to Zoe not getting her steady dose of morphine. Things got rough at around 4 am and again at 6:30 am. She was given boluses of morphine at of those times and that calmed her immediately. The malfunction was fixed and the rest of the morning was playing catch up with her pain levels. Things smoothed out and the rest of the day she was interactive, cheerful and pain free.
We are still doing the platelet body fluid dance. No bump from last nights transfusion. Her belly is still soo big. A good dose of lasix helped her reduce fluids, but as I left they were finishing a platelet transfusion to be followed by blood later in the evening.
We keep on dancing.
P.S. Happy Valentines to ya'll
Kellie and I got out to take a walk together in today's sunshine. It has been quit a while since we both got out together. We saw a pair of eagles do their air ballet and talked about our girl. A good time!!!
Friday, February 13, 2009
Day +23
Jeff here,
I just sent Kellie home to get some much needed rest tonight. I will try to fill her shoes.
Overall today was a good day in a post BMT day 23 kind of way. It is amazing how you get use to things and how quickly they become "normal".
We are still concerned about her fluid levels. Zoe's belly is getting bigger and it becomes a balancing game between fluids in and fluids out and what her different body systems are doing.
They are watching her very closely. Actually that's what they do all the time.
I am watching Zoe play with some toys that are hanging from a strap velcroed between the bars of the crib. The tambourine jingles as she hits it with her hands and she laughs in response to the new sounds.
She is very talkative and playful at this moment.
Keys words: at this moment. That's all I have. Who knows what kind of ride we will have tonight.
Plateletes stayed above 10 this morning. That meant we could wait till this afternoon to get the matched donor plateletes and not have to go with the pooled platelets. They can cause more reactions than we want.
Just got the word from our nurse that her platelet count was at 5 after this afternoon's matched transfusion.
#$%@#!!!!
It shows us that just because it's matched doesn't mean we will get the bump we want. Onward we go. I hope we can get more of the donor's platelets we had yesterday. I am thankful that there are even people willing to give, and I want to suck the ones that work dry!!
This is definitely testing my resolve. I was hoping that the low platelet phase had passed, but...
Here's to a "normal" night.
I just sent Kellie home to get some much needed rest tonight. I will try to fill her shoes.
Overall today was a good day in a post BMT day 23 kind of way. It is amazing how you get use to things and how quickly they become "normal".
We are still concerned about her fluid levels. Zoe's belly is getting bigger and it becomes a balancing game between fluids in and fluids out and what her different body systems are doing.
They are watching her very closely. Actually that's what they do all the time.
I am watching Zoe play with some toys that are hanging from a strap velcroed between the bars of the crib. The tambourine jingles as she hits it with her hands and she laughs in response to the new sounds.
She is very talkative and playful at this moment.
Keys words: at this moment. That's all I have. Who knows what kind of ride we will have tonight.
Plateletes stayed above 10 this morning. That meant we could wait till this afternoon to get the matched donor plateletes and not have to go with the pooled platelets. They can cause more reactions than we want.
Just got the word from our nurse that her platelet count was at 5 after this afternoon's matched transfusion.
#$%@#!!!!
It shows us that just because it's matched doesn't mean we will get the bump we want. Onward we go. I hope we can get more of the donor's platelets we had yesterday. I am thankful that there are even people willing to give, and I want to suck the ones that work dry!!
This is definitely testing my resolve. I was hoping that the low platelet phase had passed, but...
Here's to a "normal" night.
Thursday, February 12, 2009
Day +22
Today we had a conference with the current attending doctor, Dr. Bleakley, one of the PA's and a fellow.It was a good check-in time for us to ask questions and hear their current thinking and approach with Zoe.
She is doing well, she's on her way to engraftment, and the platelet situation has them moderately concerned. They have some courses of action they plan to explore in terms of lining up additional matched donors (even going out of state to find more) and giving her IVIG to encourage her immune system not to attack the platelets so determinedly.
If that doesn't work they will then explore using steroids and a drug regimen to suppress her B cells that are responsible for attacking the platelets. It would have the effect of further compromising her immune system, but it could help her hold onto platelets.
Bleakley told us that we would be in the hospital with her for at least 4 more weeks easily. We've been here almost 5 weeks already. Platelet production is the last thing to kick in after a transplant, and with Zoe's body taking its time to engraft, who knows when the platelets will come online.
An interesting thing to hear Bleakley say today was that, given all the challenges with the platelet situation, it's probably for the best that Zoe's donor opted to give stem cells instead of marrow. Stem cells do engraft more quickly, therefore bringing in platelets more quickly. With engraftment taking this long for stem cells, marrow would have taken even longer, and platelets longer than that.
As some one had posted back when I was frustrated with the donor for not willing to give marrow: who are we to say that stem cells aren't what Zoe most needs?
Indeed.
She is doing well, she's on her way to engraftment, and the platelet situation has them moderately concerned. They have some courses of action they plan to explore in terms of lining up additional matched donors (even going out of state to find more) and giving her IVIG to encourage her immune system not to attack the platelets so determinedly.
If that doesn't work they will then explore using steroids and a drug regimen to suppress her B cells that are responsible for attacking the platelets. It would have the effect of further compromising her immune system, but it could help her hold onto platelets.
Bleakley told us that we would be in the hospital with her for at least 4 more weeks easily. We've been here almost 5 weeks already. Platelet production is the last thing to kick in after a transplant, and with Zoe's body taking its time to engraft, who knows when the platelets will come online.
An interesting thing to hear Bleakley say today was that, given all the challenges with the platelet situation, it's probably for the best that Zoe's donor opted to give stem cells instead of marrow. Stem cells do engraft more quickly, therefore bringing in platelets more quickly. With engraftment taking this long for stem cells, marrow would have taken even longer, and platelets longer than that.
As some one had posted back when I was frustrated with the donor for not willing to give marrow: who are we to say that stem cells aren't what Zoe most needs?
Indeed.
Wednesday, February 11, 2009
Day +21
Short post: just more of the same.
She's not yet engrafted--they were right in their expectation that Zoe's osteopetrotic bones with narrow bone marrow cavities would take longer to "take."
The continued low platelets (hanging out at less than 5) is taking its toll; her tongue is bloody and oozing. At least, the nurse told me, she doesn't have a non-stop bloody nose like some patients get with chronically low platelets.
The music therapist came again today while I was out on a walk (darn!). Apparently she recognized the guy's voice immediately and got a big smile on her face. Jeff said that Zoe immediately picked up her drum stick and waved it around when he started to play.
Did I mention that I believe my daughter to be brilliant?
Thanks to everyone who has tried to set us up with musicians. I've got some good leads, now I just have to figure out how to schedule people.
She's not yet engrafted--they were right in their expectation that Zoe's osteopetrotic bones with narrow bone marrow cavities would take longer to "take."
The continued low platelets (hanging out at less than 5) is taking its toll; her tongue is bloody and oozing. At least, the nurse told me, she doesn't have a non-stop bloody nose like some patients get with chronically low platelets.
The music therapist came again today while I was out on a walk (darn!). Apparently she recognized the guy's voice immediately and got a big smile on her face. Jeff said that Zoe immediately picked up her drum stick and waved it around when he started to play.
Did I mention that I believe my daughter to be brilliant?
Thanks to everyone who has tried to set us up with musicians. I've got some good leads, now I just have to figure out how to schedule people.
Tuesday, February 10, 2009
Day +20
Today's numbers were down--neutrophils at 317, and WBC's at .7. Fortunately, we were warned that this could happen.
Natalie the PA said that the labs show a snapshot in time of flow. She said it's as if you were to take a picture of a section of freeway: maybe in that second there might not be very many cars in the photo, but the next picture in the next moment might show MANY cars. Zoe's counts are similar, as we hear. Her neutrophils and WBC's course through the blood river; the labs scoop up a sampling and project numbers based on what shows up in that small cross section.
The important thing they consider is whether everything is trending up, not whether the numbers briefly dip. The team still feels, by the looks of everything, that Zoe is trending towards engraftment.
--------------------------------------------------
Strangely, Zoe swallowed two doses of oral medicine this morning--all of the sudden she remembered how to do it on her own. Not an entirely reclaimed skill; tonight's oral dose of medicine pooled in her mouth and led to a little emesis. But, at least she swallowed today!
(Someone mentioned the swallow to be the next bird to watch for--let's hope for a flight of them!)
Her liver numbers--bilirubin levels--were up today, quite considerably. Two things could be the probable cause for that: either sludge from back-up, or liver GVHD. They did an ultrasound today to look for sludge (results to come tomorrow), if no sludge appears, they will assume GVHD is the culprit and administer steroids accordingly.
Of course, my little mind started to chew on the GVHD possibility, but the attending doc said that since her skin rash was treated with a 3 day course of steroids, it was a good likelihood that a short course of steroids would take care of liver GVHD.
I'm pulling for sludge though. Treatment for that would be dietary changes to her IV nutrition, and getting her back on the oral liver support medicine.
-------------------------------------------------------------
Today was my first day back in the massage studio after 4.5 weeks. Felt good! It's a good thing, though, that we are working slowly back up to a full schedule. Three massages today and I was whooped! (whuped?)
-------------------------------------------------------------
Check the YouTube link for a vid of Zoe feeling mightly chipper in her bumbo seat and rocking out to Lady Smith Black Mambazo!
Natalie the PA said that the labs show a snapshot in time of flow. She said it's as if you were to take a picture of a section of freeway: maybe in that second there might not be very many cars in the photo, but the next picture in the next moment might show MANY cars. Zoe's counts are similar, as we hear. Her neutrophils and WBC's course through the blood river; the labs scoop up a sampling and project numbers based on what shows up in that small cross section.
The important thing they consider is whether everything is trending up, not whether the numbers briefly dip. The team still feels, by the looks of everything, that Zoe is trending towards engraftment.
--------------------------------------------------
Strangely, Zoe swallowed two doses of oral medicine this morning--all of the sudden she remembered how to do it on her own. Not an entirely reclaimed skill; tonight's oral dose of medicine pooled in her mouth and led to a little emesis. But, at least she swallowed today!
(Someone mentioned the swallow to be the next bird to watch for--let's hope for a flight of them!)
Her liver numbers--bilirubin levels--were up today, quite considerably. Two things could be the probable cause for that: either sludge from back-up, or liver GVHD. They did an ultrasound today to look for sludge (results to come tomorrow), if no sludge appears, they will assume GVHD is the culprit and administer steroids accordingly.
Of course, my little mind started to chew on the GVHD possibility, but the attending doc said that since her skin rash was treated with a 3 day course of steroids, it was a good likelihood that a short course of steroids would take care of liver GVHD.
I'm pulling for sludge though. Treatment for that would be dietary changes to her IV nutrition, and getting her back on the oral liver support medicine.
-------------------------------------------------------------
Today was my first day back in the massage studio after 4.5 weeks. Felt good! It's a good thing, though, that we are working slowly back up to a full schedule. Three massages today and I was whooped! (whuped?)
-------------------------------------------------------------
Check the YouTube link for a vid of Zoe feeling mightly chipper in her bumbo seat and rocking out to Lady Smith Black Mambazo!
Monday, February 9, 2009
Day +19
Another good day with a happy baby.
Numbers are still going up--neutrophil count is at 475. Inching towards that magical 500 that she has to hang out at or above for 3 days to be considered engrafted. Now the watch out is for signs of GVHD--did I mention that? (ha!) Seventy percent of all unrelated donor recipients get some form of acute GVHD, so they are just waiting for hers to present at any moment.
As the PA Natalie said today, "I'm just waiting for her to rash up!"
I said, "How about the possibility that Zoe could be in the other 30% that doesn't get acute GVHD? Would that work for you?" She loved that idea.
I still try to have no attachments though. (again--ha!)
Zoe had another platelet reaction today--a fever spiked to 39.1 (I can't tell you what that is in Farenheit, but I know it's a fever). This reaction happened after a dosing of matched donor platelets. It is getting to be quite the challenging platelet dance with her.
Ideally they would love to get Zoe off of her IV nutrition as soon as possible, but, as happens with babies who don't eat for awhile, she has apparently forgotten how to swallow. Oral dosings of Tylenol during fever spikes have recently illuminated this development; the liquid pools in her mouth, and then causes her to gag and vomit when it finally trickles down her gullet.
Normally, they would put a nasal-gastric feeding tube from her nose to her gut so that they could get feedings and medication in (almost) the old-fashioned way. But, as Zoe's platelets are so low, they don't want to risk doing anything that might possibly create an injury that could bleed without the ability to clot. Shoving a tube through her nose, down her esophagus into her stomach is just tempting trouble too much.
The ideal thing would be to get her to learn how to swallow again. The OT/PT's here at Seattle Children's are specialists in suck/swallow disorders (we had seen them for help when Zoe was 11 days old and still unable to nurse). But I wasn't too thrilled to learn that part of their assessment involves Zoe ingesting Barium so that they can see, through radiological means, what's going on physiologically.
Well, I've trusted the process thus far, so I guess I will just keep going with that tack. Nothing about this process has been intuitive for an alternative healthcare practitioner like myself; we are well beyond the realm of homeopathics and diet tweakings. I love naturopathy, but have I been recently grateful for the world of allopathic medicine!
Swallow study is scheduled for later this week.
------------------------------------------------------------
Got to take that wildlife walk today with a friend who studied as a naturalist. Amazing what a difference trained eyes (and good quality binoculars) can make: she helped me see a beaver-eaten tree I had missed each previous walk, a turtle, a red-tailed hawk, cormorants, a falcon flying in the distance, an eyrie, many different duck species (can't remember them all--write the names down in the comment section, Cinny!), and killdeers. Saw the eagle again--that's 4 for 4 sightings!
Numbers are still going up--neutrophil count is at 475. Inching towards that magical 500 that she has to hang out at or above for 3 days to be considered engrafted. Now the watch out is for signs of GVHD--did I mention that? (ha!) Seventy percent of all unrelated donor recipients get some form of acute GVHD, so they are just waiting for hers to present at any moment.
As the PA Natalie said today, "I'm just waiting for her to rash up!"
I said, "How about the possibility that Zoe could be in the other 30% that doesn't get acute GVHD? Would that work for you?" She loved that idea.
I still try to have no attachments though. (again--ha!)
Zoe had another platelet reaction today--a fever spiked to 39.1 (I can't tell you what that is in Farenheit, but I know it's a fever). This reaction happened after a dosing of matched donor platelets. It is getting to be quite the challenging platelet dance with her.
Ideally they would love to get Zoe off of her IV nutrition as soon as possible, but, as happens with babies who don't eat for awhile, she has apparently forgotten how to swallow. Oral dosings of Tylenol during fever spikes have recently illuminated this development; the liquid pools in her mouth, and then causes her to gag and vomit when it finally trickles down her gullet.
Normally, they would put a nasal-gastric feeding tube from her nose to her gut so that they could get feedings and medication in (almost) the old-fashioned way. But, as Zoe's platelets are so low, they don't want to risk doing anything that might possibly create an injury that could bleed without the ability to clot. Shoving a tube through her nose, down her esophagus into her stomach is just tempting trouble too much.
The ideal thing would be to get her to learn how to swallow again. The OT/PT's here at Seattle Children's are specialists in suck/swallow disorders (we had seen them for help when Zoe was 11 days old and still unable to nurse). But I wasn't too thrilled to learn that part of their assessment involves Zoe ingesting Barium so that they can see, through radiological means, what's going on physiologically.
Well, I've trusted the process thus far, so I guess I will just keep going with that tack. Nothing about this process has been intuitive for an alternative healthcare practitioner like myself; we are well beyond the realm of homeopathics and diet tweakings. I love naturopathy, but have I been recently grateful for the world of allopathic medicine!
Swallow study is scheduled for later this week.
------------------------------------------------------------
Got to take that wildlife walk today with a friend who studied as a naturalist. Amazing what a difference trained eyes (and good quality binoculars) can make: she helped me see a beaver-eaten tree I had missed each previous walk, a turtle, a red-tailed hawk, cormorants, a falcon flying in the distance, an eyrie, many different duck species (can't remember them all--write the names down in the comment section, Cinny!), and killdeers. Saw the eagle again--that's 4 for 4 sightings!
Sunday, February 8, 2009
Day +18
And...today was much better!
I came from home to a happy baby this morning--and mama was MUCH happier too after a good night's sleep. Both of our improved moods lasted throughout the day. Jeff would probably have felt better too, if it weren't his night to have slept in the hospital (going home makes a HUGE difference).
When the lab numbers were printed up this morning they were presented to me by a dancing nurse (one of the ones we love)--her neutrophil count had jumped to 450, and her WBC count was at 1.0!! Yay! Very good news. Engraftment is so close we can smell it!
And, I'd love to remind y'all to keep encouraging those donated cells to play nicely in Zoe's body. Now that engraftment is almost complete, the next big issue is how well they will treat her. Keep seeing those cells settling in and feeling a deep sense of home in our girl.
Today I got a good walk in to a nearby wildlife sanctuary on Lake Washington. It's the third time I've been, and every time I've seen what I think is the same bald eagle hanging out or flying around. I've also seen a worm of robins, a paddling of ducks, a merl of red-winged blackbirds, a murmuration of starlings, a murder of crows, and a wedge of swans. Not very exotic birds (aside from the surprising swans), but since the group names are so fun to use--I had to mention them!
I know I haven't said this in the blog recently, but we are deeply grateful to all of you who travel this journey with us. Thank you for feeding us, for loving us, for saying prayers, for sending money, for emailing us, for calling, for writing cards, for commenting on the blog, for cheering us on, for crying with us, for laughing with us, for hoping with us.
Thank you. It all helps, so much.
I came from home to a happy baby this morning--and mama was MUCH happier too after a good night's sleep. Both of our improved moods lasted throughout the day. Jeff would probably have felt better too, if it weren't his night to have slept in the hospital (going home makes a HUGE difference).
When the lab numbers were printed up this morning they were presented to me by a dancing nurse (one of the ones we love)--her neutrophil count had jumped to 450, and her WBC count was at 1.0!! Yay! Very good news. Engraftment is so close we can smell it!
And, I'd love to remind y'all to keep encouraging those donated cells to play nicely in Zoe's body. Now that engraftment is almost complete, the next big issue is how well they will treat her. Keep seeing those cells settling in and feeling a deep sense of home in our girl.
Today I got a good walk in to a nearby wildlife sanctuary on Lake Washington. It's the third time I've been, and every time I've seen what I think is the same bald eagle hanging out or flying around. I've also seen a worm of robins, a paddling of ducks, a merl of red-winged blackbirds, a murmuration of starlings, a murder of crows, and a wedge of swans. Not very exotic birds (aside from the surprising swans), but since the group names are so fun to use--I had to mention them!
I know I haven't said this in the blog recently, but we are deeply grateful to all of you who travel this journey with us. Thank you for feeding us, for loving us, for saying prayers, for sending money, for emailing us, for calling, for writing cards, for commenting on the blog, for cheering us on, for crying with us, for laughing with us, for hoping with us.
Thank you. It all helps, so much.
Saturday, February 7, 2009
Day +17
Today was a bit rougher.
Zoe has been having episodes of pain that seem to be originating in her belly. She starts to pant and fuss, her abdomen gets hard, and it takes a bolus of morphine to get her comfortable again. Films of the area show the abdominal cavity as being dominated by the spleen and liver, with little room for the other organs. The doctor says it's conceivable that even bowel function could be painful when there is so little space for the intestines to function.
Today, one of the episodes was accompanied by her hands and feet turning deep purple--as well as another fever.
Platelet reaction? Well, not really easy to say. The fevers are not quite lining up with the transfusions in an expected reaction sort of way. But, again, they aren't ruling it out.
She was transfused with matched platelets last night--and did not get a boost. Her platelets are at 3. Yikes. The PA said that she demonstrates just about the most extreme resistance to platelets as they've seen. As long as she doesn't have any major bleeding events, this is not a horrifying thing. But, it's still concerning, nonetheless. And, she had a bloody nostril all day--which doesn't do much to calm nerves.
So anyway, the purple extremity episode passed after about 20 minutes. Blood labs taken to look at possible concerning causes came up negative (with cultures to determine possible infections taking 48 hours more to be ruled out).
Ultimately, while they know a heck of a lot about what it is Zoe is going through, they don't know everything. Again, only 7 treated cases of osteopetrosis at the SCCA since 1980--as opposed to the thousands they've treated of leukemia.
Not a lot of comparisons to draw upon for answers and insight in Zoe's case.
-----------------------------------------------------
Well, it's been 4 weeks that Zoe's been here at Seattle Children's. Only now is it really starting to grate on me.
I'm starting to feel cabin fever, I'm more easily cranky, and the long-term worry and modulating terror are wearing me down. Things like nurse personalities wield a huge power in terms of me maintaining my sanity, or falling prey to its mad twin. Today Jeff watched me get more and more dower, the more today's nurse made attempts at perkiness and breezy-chattiness with me, and high-pitched jabbering at Zoe.
Yes, I'm probably being insufferably judgemental right now, but I don't even really care. I do my best to maintain good behavior with all the nurses, even the irritating ones, as they are all indispensable to this process.
Some of them simply get more blank stares from me than others.
Zoe has been having episodes of pain that seem to be originating in her belly. She starts to pant and fuss, her abdomen gets hard, and it takes a bolus of morphine to get her comfortable again. Films of the area show the abdominal cavity as being dominated by the spleen and liver, with little room for the other organs. The doctor says it's conceivable that even bowel function could be painful when there is so little space for the intestines to function.
Today, one of the episodes was accompanied by her hands and feet turning deep purple--as well as another fever.
Platelet reaction? Well, not really easy to say. The fevers are not quite lining up with the transfusions in an expected reaction sort of way. But, again, they aren't ruling it out.
She was transfused with matched platelets last night--and did not get a boost. Her platelets are at 3. Yikes. The PA said that she demonstrates just about the most extreme resistance to platelets as they've seen. As long as she doesn't have any major bleeding events, this is not a horrifying thing. But, it's still concerning, nonetheless. And, she had a bloody nostril all day--which doesn't do much to calm nerves.
So anyway, the purple extremity episode passed after about 20 minutes. Blood labs taken to look at possible concerning causes came up negative (with cultures to determine possible infections taking 48 hours more to be ruled out).
Ultimately, while they know a heck of a lot about what it is Zoe is going through, they don't know everything. Again, only 7 treated cases of osteopetrosis at the SCCA since 1980--as opposed to the thousands they've treated of leukemia.
Not a lot of comparisons to draw upon for answers and insight in Zoe's case.
-----------------------------------------------------
Well, it's been 4 weeks that Zoe's been here at Seattle Children's. Only now is it really starting to grate on me.
I'm starting to feel cabin fever, I'm more easily cranky, and the long-term worry and modulating terror are wearing me down. Things like nurse personalities wield a huge power in terms of me maintaining my sanity, or falling prey to its mad twin. Today Jeff watched me get more and more dower, the more today's nurse made attempts at perkiness and breezy-chattiness with me, and high-pitched jabbering at Zoe.
Yes, I'm probably being insufferably judgemental right now, but I don't even really care. I do my best to maintain good behavior with all the nurses, even the irritating ones, as they are all indispensable to this process.
Some of them simply get more blank stares from me than others.
Friday, February 6, 2009
Day +16
Nothing to report. Numbers still slowly trending up (the numbers we want to go up, that is), fevers still not convincingly due to GVH, and morphine drip is on its way down.
Hey! Nice change, huh?
Hey! Nice change, huh?
Thursday, February 5, 2009
Day +15
The ongoing question is what Zoe's fever spikes are due to: GVH, or....?
A theory that Jeff came up with today was whether the platelet transfusions are causing an inflammatory response in her body. One thing recently discovered through lab tests was that Zoe has quite a few antibodies built up against the platelets transfused into her--a good explanation as to why her body purges them as soon as they are introduced.
They found a couple donors that were HLA matched to her (remarkable, since they told us that her HLA type is very rare), had them apherised, and transfused Zoe with those platelets over two sessions yesterday. No fever.
Then, a "pooled" platelet transfusion (where platelets from more than one donor are mixed together), and she had a fever within a short time afterward. After Jeff brought up his theory, the nurse did a little charting--looking at platelet transfusions in conjunction to the fever spikes--and found that there was a possible correlation.
Even Manley said that this could certainly be an explanation.
Not to make it sound like such a thing wasn't on his radar--he said that it was one of the questions in his mind. I really like how he weighs all the possibilities and doesn't go blazing into decision that will have long term repercussions. He knows that GVH should be nipped in the bud at this stage, but also doesn't want to put Zoe on prednisone unless absolutely necessary.
So, we still wait on that one.
Zoe is due to have two more transfusions from a matched donor. They will be watching her closely to see how she does.
On other fronts, it was another great day as far as Zoe mood went. A lot of talking, smiles and chuckles. Lovely, lovely!
Jeff and I are looking to go back to work on a limited schedule next week (as long as things continue to trend along the same trajectory). Clients and others who would like to get back in our books, feel free to call or email. Otherwise, don't be surprised if you hear from us. Thanks!
A theory that Jeff came up with today was whether the platelet transfusions are causing an inflammatory response in her body. One thing recently discovered through lab tests was that Zoe has quite a few antibodies built up against the platelets transfused into her--a good explanation as to why her body purges them as soon as they are introduced.
They found a couple donors that were HLA matched to her (remarkable, since they told us that her HLA type is very rare), had them apherised, and transfused Zoe with those platelets over two sessions yesterday. No fever.
Then, a "pooled" platelet transfusion (where platelets from more than one donor are mixed together), and she had a fever within a short time afterward. After Jeff brought up his theory, the nurse did a little charting--looking at platelet transfusions in conjunction to the fever spikes--and found that there was a possible correlation.
Even Manley said that this could certainly be an explanation.
Not to make it sound like such a thing wasn't on his radar--he said that it was one of the questions in his mind. I really like how he weighs all the possibilities and doesn't go blazing into decision that will have long term repercussions. He knows that GVH should be nipped in the bud at this stage, but also doesn't want to put Zoe on prednisone unless absolutely necessary.
So, we still wait on that one.
Zoe is due to have two more transfusions from a matched donor. They will be watching her closely to see how she does.
On other fronts, it was another great day as far as Zoe mood went. A lot of talking, smiles and chuckles. Lovely, lovely!
Jeff and I are looking to go back to work on a limited schedule next week (as long as things continue to trend along the same trajectory). Clients and others who would like to get back in our books, feel free to call or email. Otherwise, don't be surprised if you hear from us. Thanks!
Wednesday, February 4, 2009
Day +14
We're in that window now, the 14 to 21 day window in which they said that engraftment usually takes place. Keep those fingers crossed and prayers blazing!
The numbers continue to improve; neutrophils are now registering (prior to the WBC's being above 1.0--I guess that wasn't exactly accurate info given to me by a nurse who said they wouldn't show up until then), WBC's are at .6, and lymphocytes are also on the map.
All very good news--and, I am still just trying to focus on what IS. No assumptions.
She's been spiking fevers off and on for the last couple days since they took her off the prednisone. They've run a gamut of tests to see if she has an infection--fungal or otherwise--that might explain the fevers.
So far, the results have been negative (though there are a couple yet to come back). Manley believes that the likely culprit is more GVH showing up (again, common at this stage), and believes that they will have to put her on prednisone again--this time for at least a month.
Now, along with her funny-shaped head, her little cheeks will be fat as a chipmunk's from the steroids.
Hey, as long as it works.
The numbers continue to improve; neutrophils are now registering (prior to the WBC's being above 1.0--I guess that wasn't exactly accurate info given to me by a nurse who said they wouldn't show up until then), WBC's are at .6, and lymphocytes are also on the map.
All very good news--and, I am still just trying to focus on what IS. No assumptions.
She's been spiking fevers off and on for the last couple days since they took her off the prednisone. They've run a gamut of tests to see if she has an infection--fungal or otherwise--that might explain the fevers.
So far, the results have been negative (though there are a couple yet to come back). Manley believes that the likely culprit is more GVH showing up (again, common at this stage), and believes that they will have to put her on prednisone again--this time for at least a month.
Now, along with her funny-shaped head, her little cheeks will be fat as a chipmunk's from the steroids.
Hey, as long as it works.
Tuesday, February 3, 2009
Day +13: The Sound of Music
Today Zoe's morphine drip was lowered just a smidgen, but it seemed to be enough to bring her out of her stupor.
It wasn't apparent until the music therapist came by and played and sang for Zoe. She went from being still and staring, to active and engaged and even participatory (see the latest vid on the YouTube link). It seemed to put her on a happy trajectory; she's been talkative and playful most of the day since then.
Does my heart so much good!
Which leads me to ask--is there anyone in our Seattle area that can play the guitar, or other portable instrument, and come sing and/or play for Zoe? It seems to be just the best possible medicine for her mind and mood, and the music therapist can only really come once a week. You'd have to be absolutely cold and flu-free and be able to sing through a mask.
Let us know--we'd be so grateful!
Monday, February 2, 2009
Day +12: Hopes for Spring
Holding steady. Well, despite the platelets that refuse to boost and some mystery as to why her calcium and chloride levels are not behaving as they should.
But--
She continues to do well, all things considered. Her WBC's registered .5 this morning (a very good thing). When they will get to above 1.0 then we will begin to see some neutrophils coming back in--and that will be a VERY good thing.
Today I went for a lovely walk down to the UW Horticultural Center and through the wetlands that surrounds it. Everywhere I saw green buds and signs of life renewing itself.
Though likely no metaphor is more common, there's no other that could better describe what we are witnessing, and continue to hope for, than the return of Spring.
But--
She continues to do well, all things considered. Her WBC's registered .5 this morning (a very good thing). When they will get to above 1.0 then we will begin to see some neutrophils coming back in--and that will be a VERY good thing.
Today I went for a lovely walk down to the UW Horticultural Center and through the wetlands that surrounds it. Everywhere I saw green buds and signs of life renewing itself.
Though likely no metaphor is more common, there's no other that could better describe what we are witnessing, and continue to hope for, than the return of Spring.
Sunday, February 1, 2009
Day +11
Last night was much better; no worried huddle around Zoe at 3AM.
The respiratory therapist had come the evening before and removed some very impressive clumps of dried mucous (really, mouth boogers) from the palate and tongue. She seemed to breathe much easier after that.
A platelet boost of up to 22 today was followed a few hours later by a drop to under 5. Hmph. Her blood chloride levels were found to be off as well. More platelet infusions, more medicines to tinker with her chemistry.
The girl has so many different things infusing into her it's amazing her body accepts it all (well, not really accepting those platelets, huh?). Since they needed to give her another blood transfusion to bring her hematocrit level up, and since she had so many needed meds using up all her line access, they had to put an IV in her hand for the blood transfusion.
The ordeal this little girl is going through, and she still is just the sweet cherub fighter chick-a-dee that she's always been.
Doc Manley today said, again, that he really feels like Zoe is turning a corner for the better--and he reminded us that he's seen more than a few of these procedures through. He caught my eye to make certain that I was hearing him.
I was, am, definitely pleased--I told him--but it's been my M.O., or maybe my superstitious side, to not take anything for granted about how she's doing--it could all change very quickly. He agreed that that was correct and true. However, his "gestalt" of the situation tells him that she is progressing along very well and continuing on towards good things.
I'm nervous even writing that, I'm so afraid to "jinx" anything. So funny to admit that, and yet--nothing about this experience with Zoe, from the day she was born, has been expected or assumed.
So, can you blame me?
The respiratory therapist had come the evening before and removed some very impressive clumps of dried mucous (really, mouth boogers) from the palate and tongue. She seemed to breathe much easier after that.
A platelet boost of up to 22 today was followed a few hours later by a drop to under 5. Hmph. Her blood chloride levels were found to be off as well. More platelet infusions, more medicines to tinker with her chemistry.
The girl has so many different things infusing into her it's amazing her body accepts it all (well, not really accepting those platelets, huh?). Since they needed to give her another blood transfusion to bring her hematocrit level up, and since she had so many needed meds using up all her line access, they had to put an IV in her hand for the blood transfusion.
The ordeal this little girl is going through, and she still is just the sweet cherub fighter chick-a-dee that she's always been.
Doc Manley today said, again, that he really feels like Zoe is turning a corner for the better--and he reminded us that he's seen more than a few of these procedures through. He caught my eye to make certain that I was hearing him.
I was, am, definitely pleased--I told him--but it's been my M.O., or maybe my superstitious side, to not take anything for granted about how she's doing--it could all change very quickly. He agreed that that was correct and true. However, his "gestalt" of the situation tells him that she is progressing along very well and continuing on towards good things.
I'm nervous even writing that, I'm so afraid to "jinx" anything. So funny to admit that, and yet--nothing about this experience with Zoe, from the day she was born, has been expected or assumed.
So, can you blame me?
Subscribe to:
Posts (Atom)