Update This is the 3rd day in a row his count was over 500. YAY HOO! that means he's engrafting (good blood cells are replacing the bad ones) Thank you all for the prayers and support. Now niece has to watch out for germs, (think Bubble Boy) until every thing is stable in GR nephew's system. Please keep him in your prayers.
Prayers are being answered. They will continue.
Thank you , Thank you We're very encouraged about his counts being up. we are just hoping that they will be able to go home soon.
Just heard from my niece it looks like they will be in hospital till at least the end of September,if he continues to improve.
Here is what my niece posted on Caring Bridge
He has officially engrafted!!... Friday his ANC was 610, Saturday it was 730, Sunday it was 630!!! ... Monday was 900 - still doing great! No matter where the number goes now, he's officially considered "engrafted"
Basically, that means the transplanted cells are now producing enough new cells
Sunday morning at about 4-5am, they finished his wean off the Dex - he was at 0.2 when they shut it off (I don't think the pump will let it go slower) ... now we just need to work on his breathing and the only thing keeping him in the ICU is the CPAP mask ... because the ICU nurse-to-patient ratio is usually 1:1, it's been ok for him to be on the full face mask, but on the floor, it's typically 1:2+ and without that constant visual contact (and no "Respiratory Therapy" staff on the floor), it's not as "safe" of a mask to use out of the ICU ... SO ... they gave him another trial on the giraffe mask last night (just his nose) and I'm told he failed miserably ... I've explained the reasons why the triangle nose/mouth mask didn't work before, so tonight, they're trying a different nose mask and so far it seems to be working! (See attached pic) ... I imagine they'll want to see how he does on it for more than one night, so if all goes well, we could be back on the floor by Wed/Thu
In other news: the BMT team wants to get the nutrition team involved with him again, to see how his oral skills are since he's been on the NG/NJ continuous feed for so long (over a month), and maybe see how he does with a small bottle ... eventually we'll work on weaning the continuous feed and hopefully get him off the NG/NJ altogether ...
I'm also going to push to get PT/OT to work with him more than twice a week - I'd love to have at least one of them work with him every day (instead of both on the same day) ... hopefully they can work something out that's more scheduled - I think it will be better for him, and for everybody caring for him too <3
This is me: Sorry I couldn't attach the picture but he is filled out and looking like a healthy baby.
Thank you again for all your support
YEAH! I' am sooo happy for you guys! That's a no shitter Kat, being a Dad and having suffered that 6 weeks with my newborn.(26yrs ago seems like yesterday sometimes) It's scary, it still took some yrs for her to level out, but you never would have known what she went through except the scar down the middle of her belly. Keep us posted, sorry it took so long for me to catch up on this. But we're still here for ya.
Be safe.............the night is your friend.
No Problemo BR
Here's an update from Niece:
We officially moved out of the ICU and back to the Transplant floor at 4pm on Wednesday! We had a temporary room for the night and most of the next day, but our new room was worth the wait - it's probably the biggest room we've had!
PT never did come on Wednesday, but that's ok, because of the move. Our first night back on the floor was pretty rough and neither of us got much sleep. Every time the CA would change his diaper, he would wake up crying, and then she left me to put him back to sleep without even trying to help settle him... the last one was about 4am, and I don't think we got to sleep until 9am-ish ... it was rough ...
Thursday was pretty good - Busy, but good - started with a little sleep deprivation, but I finally got a nap when Noah did, and I requested a sign on the door to keep people from visiting ... then I went to lunch & worked on his scrapbook a little, played with him, went to dinner in the cafeteria, held him for a while, then we finally moved to our "permanent" room around 8/9pm ... I finally got him to sleep around 11pm, then I pumped before going to bed ... that night was much better, and we both got more sleep (different CA, was able to change his diaper without waking him!) ...
From what I understand, there's not much left for Noah's hospital stay, and it sounds like we may only be here for a few more weeks before moving to The Boston House (for a couple weeks before heading HOME) ... he's finishing up a few more days of antibiotics, and under "normal" BMT circumstances, he'd be discharged soon after that, but he has other complications due to the CPAP ...So what's left? ... They're working on getting a sleep study done, to hopefully get him off the CPAP at night (and/or determine if his large adenoids need to be removed), also working with the feeding team to start getting him back to the bottle (or at least off continuous feeds), and working with PT/OT to get his muscle tone back ...
He's on Breast milk now (I have NINE buckets of frozen bottles) - we started his first breast milk as irradiated and fortified, but after reviewing their policies, they discovered that the newer policy states that breast milk doesn't have to be irradiated at Day +42, which was Wednesday for Noah!
We had the speech pathologist of the feeding team visit Friday morning, and with a little patience, he actually sucked on the bottle for a few seconds!! THIS is HUGE!! I had just pumped right before they arrived, so we used a little of that, and the amount we gave him looked like mostly fore milk, which is typically sweeter than the hind milk, so not only was it fresh, it was warm & sweet too - so proud of my little man!
He had the needle & dressing for his port changed today (every 7 days while actively being accessed) and did exceptionally well <3 - he had a long 2-3hr nap just before, so that may have helped, but he didn't even flinch when they put the new needle in - in fact he was smiling, lol - he's my "Tough Dude" for sure!
Later in the afternoon, PT came to try working with him, but by then he was getting sleepy & cranky again, so they weren't able to do much with him - plus I'd just changed his diaper and he was still getting over the raw bum (I hope we can get that under control soon <3) ... basically PT just said we can try sitting him up occasionally and work on his neck/trunk strength ...
Any who ... everything is continuing to go forward so far!
Here's another update
After changing the baby's blood pressure med, his rash didn't get any better - it continued to get worse
Wednesday morning was the first time in a few days that I saw him smile!
In other news, I received a "discharge packet" to review :-O ... it's hard to believe we're finally so close to going home!! Someone will review it with me tomorrow, and they're going to start "teaching" me how to give his meds in the NJ-Tube (I've seen it done a million times at this point, so I have a pretty good idea how to do it) ... it sounds to me like we may be discharged from the hospital in the next week or so!
I'm excited/anxious/scared/nervous ... we've been in the Hospital for so long, I will truly miss all the wonderful nurses - their personalities, and of course their invaluable help with pretty much everything ... I'll also miss having them as "babysitters" so that I can take care of myself with some "me time" ...
I'm mostly anxious/scared because of how vulnerable he will be in the big world outside of the Hospital ... he's not allowed in any public building (restaurants, stores, schools, etc ...), and he can't go to anyone's house or have anyone come visit our house, for 9-12mos after transplant ... Thursday is only day +50, so it's going to be a loooong time keeping him safe ... it's going to be a real challenge while Alyssa is going to school this winter, and it will suck not being able to see family during the holidays for the first time in 12yrs ... we're going to be left out of a lot, but it will be worth it to keep baby safe!! <3
Looks like they may be going home this week He still has a long way to go. Niece and GR Nephew will be house bound for at least 9 months if not a full year . Nobody in or nobody out and Nephew and GR Niece will have to be EXTREMELY careful when coming in and out. She's in preschool and nephew has to work. Both Grandmothers are bummed they will not be able to have Christmas this year but they understand the precautions the kids have to take. Just hope my niece's boss will let her go back to work from home. Niece runs a website for the boss on Vermont tourism.While she was pregnant, the boss let her work from home 2-3 days a week. Thank you all for the prayers and support. Will have more soon.
OOPS, they are not actually going home, just transferring to Boston House ( rehab/halfway house?) for a few weeks so niece can get a handle on the medications and feedings for the baby. His lungs are fragile, no reserves is what she posted the other night on FB, plus daddy and big sis have to learn the routines as well for keeping baby safe. She posted a picture of the 3, yes, 3 plastic shopping bags of his meds and a couple of cases of the feeding formula to start. Keep the prayers coming as he is really showing good progress. Thank you all
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