We are back at our home away from home: Seattle Children's.
Yesterday we checked in at 4:30 and were shown the tiniest room that I believe exists at Children's. After a myriad of vitals assessing Zoe was given Dilantin at 9pm, and a blood transfusion at midnight. Jeff and I agreed that I would stay with Zoe the first night; Jeff headed home for bed at about 11pm.
Zoe did not, could not fall asleep at all. Finally, after hours of Zoe's fussing, the night nurse told me at 4:30 am that the Dilantin infusion may have had something to do with the wakefulness (now she told me!), and offered to give her a dose of Benadryl to help her fall asleep. As I had not slept a wink along with Zoe, I have to admit I jumped at the offer of a sleep-aid for the tyke. I, now a basket case before the first 24 hrs in the hospital, had called Jeff at 4am to come spell me so that I could sleep. He came, I went home for a few hours, Zoe and I both caught up on some shut-eye.
Things are not quite as glum now. Amazing how sleep can improve one's outlook.
Zoe has had one dose of the Busulfan this morning, and is currently getting infused with her second dose. Busulfan is a particularly nasty chemotherapy drug that only gets used in rare cases such as bone marrow and stem cell transplants. There is a very small difference between an ineffective dose and a dose amount that will completely kill off one's bone marrow. Dreadful stuff, but I try to remember it's a necessary part of her cure.
Jeff has to do a lot more of the baby comforting for now; Zoe has finally figured out that she misses mama's milk and often gets quite upset when she hears me or is held by me. Oh baby!
We are in "isolation" due to the corona virus that Zoe has. This adds an even more complicated spin to an already challenging situation. Due to being in isolation we are not allowed to go to the common areas such as the family and nourishment rooms in the SCCA ward. We have to rely on the nurse to bring us food we have in the refrigerator--and the food that is brought to our room is not allowed to go back to the fridge as it is seen as "contaminated" and may not comingle with food from other rooms.
So, on that note, if you are signed up to bring food to us (and thank you, by the way), we can't put leftovers in the fridge. Individually wrapped servings are fine: they can go directly in the common fridge and be brought to our room as we need them.
We asked how/if the lingering of the corona virus would affect Zoe when she has no immune system. Again, it's not seen as one of the deadly ones. They expect that viruses will show up when she is immunocompromised. As they already know she has a corona virus, they will know to specifically monitor for it, as well as stay on the lookout for others.
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In the title of this post you might have noticed "Day -9". How the counting for stem cell and bone marrow transplants works is that transplant day is considered "Day 0". The conditioning days leading up to Day 0 are negative days. So, we are at nine days prior to her stem cell infusion.
4 comments:
Hang in there you 3. we love you sooooooooooooo much!!! thanks for posting the blog. I can't stop thinking about you, wondering what your day has been like, and what your going threw. day by day, hour by hour, some times that's all you have. Know that your loved dearly!!!!!!
call when yo come up for air
love Martin, Marilyn, Isaac, Torin
Sleep does amazing things for our outlook, yes yes yes! I'm so glad you guys can switch off doing hospital stays. Due to Eric's work schedule (which we were so grateful to have because his health insurance covered almost all of our ordeal), I was by myself at night, and I don't recommend that at all. But we do what we have to do...and we find ways to make it bearable and even enjoyable. Swedish had a special floor for the Fred Hutch children back then, and their kitchen made great triple Grande lattes (like bacon only better after long nights!), plus I absolutely adored the lady who brought them. She was a real Healer working the kitchen rounds. I loved Mary, our nurse, best though. She took care of me as much as she took care of Ray, and I wish I could see her again. And I liked the way the sun set thru my window on those August days...and how I could even see the Blue Angels, when they buzzed downtown Seattle.
Ray had Busulfan, too, as I recall. It looks like Zoe didn't have to have a stomach tube through her nose? I hope not, but if they did, it's just for the chemo, which I'm sure you know. They installed the tube and then taped it on his face as soon as we got there as I recall, and it was a tad hard (a real ..erm..bitch!) to keep it in... we had to reinstall (not fun, but I became proficient at shoving it back by the end!) several times. Back then that the only way they could dose him absolutely correctly, so it was important.
Hope you didn't have to have that, but if you did, it's only temporary....
All kinds of good thoughts from us to you guys,
Laura
(if you ever need anything I can do from down south, let me know...)
Thinking of all three of you more than you know. Thanks for the posts. Every ounce of positive energy and thoughts I have is coming your way. Love, Bridget
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