03/18/2024
Our Sunday family excursion to the aquarium, which my children adore, so we may just have to renew our pass here shortly.
The story of Josiah Skye and his life in and out of the hospital. Born prematurely with Gastroschisis was only the beginning. We are #JosiahStrong
Transplant warrior fighting multiple chronic illnesses, 2 time ECMO survivor, awaiting transplant #2.
03/18/2024
Our Sunday family excursion to the aquarium, which my children adore, so we may just have to renew our pass here shortly.
We're now looking at next week for coming home. The main issue is his vomiting, and if he's doing it too much the worry is that he ends up dehydrated. But we are getting there, and we all know jojo π₯° He's a Warrior and nothing can stop himπͺπΌπͺπΌ
If everything stays on track and depending what his scope looks like tomorrow, jojo may be coming home next week!!
Jojo has been completely off of his tpn for 2 days now!!! Straight tube feeds!!
11/10/2021
I apologize for no update for awhile. Life gets extremely busy, chaotic, and exhausting for this Momma. Anyways..... Mr jojo was doing pretty decent, had tube feeds started, was even nibbling.. So a couple days ago he started with the vomiting and then Monday night/ Tuesday morning were rough, so they wanted to take him down for a double scope and biopsies. When they finished they said they wanted to have him moved to the picu. After confirmation of the biopsy results, they showed that he is in active organ rejection. So now he needs to be on some extra medications and they require him to be more closely monitored. Mentally he is doing fine, he's still playing and being sooo
Sassy and adorable (2 different jo's) lol. As always
10/17/2021
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Back to the O.R in the morning. Getting a new feeding tube placed and then getting opened back up for and exploratory surgery. He can't even sit up without vomiting and has no energy at all. His white count is super high and he's in near constant pain. I also think he's falling into a depression which is so heartbreaking. Everything he's been through, and it just never seems to end.
Bubs not feeling too good. He's just been laying around watching tabby or sleeping. A little pain and discomfort and he did test positive for rhinovirus. He's been really quiet and you can tell that he just feels like crap. They were concerned about liver rejection but biopsy showed no rejection. Hopefully his intestinal biopsies from today come back good as well. My heart hurts so much, I hate seeing him in such a funk. My little warriorπ
10/10/2021
Sleeping at the foot of the bed π My little ham.
Still doing pretty good.... Having a lot of issues with high blood pressure, but he's more awake and no longer in restraints. New organs still haven't quite kicked in yet, so he's still on a bunch of extra meds. But these are all small things considering what he's been through and it does take time to get everything working. It truly is a long road, but will be so worth it once we get there. Babe is such a fighter, and I'm excited to see what he accomplishes in life, because literally NOTHING stops him. π₯°πππ
10/05/2021
Babes new battle wounds. My amazing little warrior! Everything he's been through, and he's still as feisty as ever! It hurts me, and brings me hopeful joy all at the same time.
10/05/2021
Look at little jojo! π₯°π₯°