That is great news Kat. Prayers continue for everyone involved.
That is great news Kat. Prayers continue for everyone involved.
Well they are now ensconced in their room at Boston House. so far so good Niece says it will be another 3-4 weeks before they are allowed to go home "home" So far GR Nephew is doing good, he looks so much better now. She's really happy the room has a small kitchen area so they can get some groceries so she can cook food instead of always going out.
Finally got to catch up, things seems to looking good. I am so happy for you guys! This has been a long struggle for you and the family and it's amazing how far "modern" medicine has come. You certainly have the "Big Guy" watching over him. There is obviously a place for this young man in this world. Life is full of challenges and we are constantly tested. But bringing a new life into this world is one of the greatest experiences and challenges of all. Your family is truly blessed. Another prayer goes out to the little guy from me knowing he has a special place in this world. God makes tough little buggers like that for special jobs later on down the road. Tell them to keep him pointed in the right direction as he grows up, he has a special job somewhere, I know it.
Be safe.............the night is your friend.
Thanks BR We are keeping positive. The little piker pulled his feeding tube out yesterday, so niece had to go back to the clinic get it put back in. The picture she posted was of him with this look on his face like HA HA mom gotcha and laughing. So if he keeps up with the bottle feedings it won't be long before the tube can stay out. She laid out the syringes for his meds , there were 9 of them she has to give him.So far she has been really good doing the meds on her own. Now if he'll only leave the tube alone, she'll be fine.
Here's another update from my niece
Sorry it's been a while since I've posted an update, a LOT has happened this week!
The steroids that we started worked like a charm to control the baby's rash, and he's currently free of itchiness and much happier. It's unclear if it was drug-related, or if it was caused by GVH, but I think we're leaning toward GVH.
Daddy and Big Sister visited over the weekend - they actually fell asleep & took a nap in the baby's room while he had a bath. We didn't do much - went to the Galleria for lunch, went to Bertucci's for dinner, watched movies in our room at The Boston House, played in the 6th Floor Playroom, went shopping at a baby store called "Magic Bean" or something like that and popped-in to a couple kids clothes stores nearby. Of course Daddy had to stop at a comic store we found too ... then we went to Target to get baby supplies for the hotel room/apartment (diapers, wipes, etc) ... and stopped to get ice cream afterwards <3
I got the discharge info packet last Wednesday, got a bunch of teaching on Thursday and Friday, and the baby was almost released on Monday but not all of the meds were ready, and supplies for his feeding tube hadn't arrived yet, so we planned for Tuesday ...
Monday night was the first time I stayed at The Boston House by myself and I was pretty emotional, missing Hubby & Big sister, but I made it thru the night ... Tuesday arrived and I went to get the last of the baby's stuff from the hospital and brought it to the hotel ... went to Target again, to get a few groceries this time ... feeding supplies arrived at the hospital sometime after noon and after I got his prescriptions from the pharmacy ... the nurses reviewed all meds to make sure everything was there - had to wait for 2 that were missing, but they went over everything with me and taught me how to draw the meds into the different size syringes ... then finally I went to pickup those last 2 meds while the nurses got him dressed and ready to go ...
Then we had a "Bubble Parade" on the way out of 6 West ... it felt so weird taking him off the floor in his car seat, and I was so nervous about transporting him - he had a mask on at first but was really irritated by it, so I ended up taking the mask off and just put a blanket over the carrier ... a nurse helped me bring the last of his stuff downstairs where we got an Uber ride to The Boston House ...
Wednesday was our first day out if the hospital, but we had to get to the Jimmy Fund Clinic for his first outpatient checkup ... the clinic visits are basically like Morning Rounds while he was still inpatient - draw blood, take vitals, go over lab results, discuss how he's doing overall, and make a plan for moving forward ... they decided to wean his Ativan and Prednisolone a little, but everything else stayed the same ... they also dropped his platelet goal from 50k to 20k, which meant he didn't need a transfusion at that visit ... the whole day was a learning experience for me - how to take him to Clinic, getting a Taxi to & from clinic, deciding what to bring & what to leave behind (especially since I don't have a stroller - but I just ordered one of those Universal ones that are supposed to work with all infant car seats, so hopefully this will become much easier) ...
Thursday I planned to stay in the apartment and not go anywhere ... but then he pulled his NG-Tube *sigh* ... so we had to go to the clinic again to get a new one ...
Friday (today) he had another Clinic appt ... everything looks good, and they didn't wean anything, but because his platelets dropped since his last clinic, they decided to give him some, to be safe for the weekend ... other than that, not much has changed, and his next clinic appt is on Wednesday morning ... hopefully he won't pull the tube again, so we can stay "home" for a few days and I can work on building my milk supply ... this whole week I've barely been able to pump at all, so my supply is very low, but I've brought it up before and am confident that I can do it again!
Life is SUPER busy now that I don't have the nurses to help or to watch him while I go out to do stuff ... but we're ok so far! ... probably another 2-3wks here in Boston before we can go home to Vermont, and I still need to coordinate his care up there ... there's a LOT to do ..
From katrina, Thank you all again for your prayers , we are very happy he is doing so well so far
Last edited by Katrina; 09-23-2017 at 01:25 AM. Reason: Spelling
Hold the course kiddo, the end is in site and it is laden with smiles.
Give a man fire, and he'll be warm for a day!
Light a man on fire, and he'll be warm for the rest of his life!
Cat's are food... not friends!
If you're going to fight, then fight like you're the third monkey on the ramp into Noah's arc... and brother, it's starting to rain.
I certainly hope so Sniper. She posted a video, he has sleeves to keep him from pulling the feeding tube but that little goof has learned to pull the sleeves off even in his sleep. He is getting better every day We are so happy things are progressing as well as they have.
Well So far so good he's doing really good . My niece is getting anxious to get home,she's been a real trooper dealing with the meds and feeding time. GR Nephew is slowly relearning how to use the bottle. She posted he got 100mls down with the bottle today,YEAH!! She's hoping this next week he'll rely more on the bottle and they can get rid of the feeding tube. We've noticed his eyebrows are coming back in and they are dark and bushy, now it's just a matter of time til his hair grows back. He is such a cutie.
Sorry I haven't been on much.
Update: They ARE home!!!!!Niece had the specialists appt for sons eyes before they were released. I'm sorry to report that he will not be able to see much more than shadows per the specialist. A healthy optic nerve is pink, Gr nephews is white, there may be a slim chance that as he grows older that may improve. I only hope medical technologies will be there to help him. I'm just praying that given the current climate regarding "Special Needs" people, he will be helped with out bankrupting his parents. Niece is exhausted but very glad to be home. Please keep them in your prayers, it's going to be a long haul for them. He will have to be monitored daily so the visiting nurse will be seeing him regularly when they don't have to go to Dartmouth for check ups.His white blood cells are doing good and the red ones are also coming along well enough so they could go home. We are very happy but reserved. Just hoping for the best.
Thank you all again.
Thanks for the update Kat. Much better having him home. Prayers for his continued improvment.
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