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.
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