Monday night 1/22

His color is looking much better in this picture, I’m excited to see that!

Gideon has had a pretty good day! I have already forgotten most of what Bo updated me with on the phone but for the most part, it was all positive. He is still off the paralytics and as you can see, he’s starting to come to just a bit and open his eyes from time to time. He had the EEG removed from his head after his 48 hour brain study, I’m not sure how soon the results of his 2 EEG studies will be back. He has been weaned off the vent for the most part, its set now to assist with respirations if he is apneic (not breathing) for 20 seconds and it hasn’t activated yet so he is maintaining his respiratory rate/drive all on his own. They did increase his Epi just a tad once today to keep his blood pressure up but it was a miniscule amount and hopefully they can drop it back down again soon and his blood pressure will maintain. The catheter is still out and he is peeing, that’s great. There is concern that his PICC line is clogged so that needs to be cleared. They want to remove the central line (the big one in his neck) but need the PICC line (the one that goes in his right foot directly to his heart) to be cleared and free flowing so they still have access to him.

Bo is doing well at the hospital, he is tired. It’s hard to sleep there and exhausting to try to keep everyone updated and there are more requests from people than time to reply to them all so he is trying to balance keeping people updated (ME) and he has had a couple of visitors but even sitting to chat and enjoy company and fresh air for an hour with a friend is exhausting right now.

I’m still home sick and it doesn’t look like I’m going anywhere anytime soon. It sucks. But I can’t risk gettig anyone else sick because someone HAS to be at the hospital with Gideon and if the big boys come home, I’ll get them sick then we’ll just pass around whatever crud I have between all of us and end up taking it back up to Gideon at the hospital so I’m at home alone resting and trying to get well. I don’t feel very well. I may be throwing myself a tiny little pity party tonight. It will be a quick one though and I’ll get back to the positive thanking God for Gideons progress and how the big boys are taken care of, they have a play date tomorrow that will be so good for them and good for my parents too that’s close to home. Even though I’m not with them, I like that they are physically still pretty close to home. Any farther away than my parents house and I would be having serious anxiety about them just geographically. LOL.

I’ve received updates from some other parents in the hospital we’ve connected with as well. There is a mom in there whose 2 year old drown in a pond who had a great day today, she had a scary few days but she got off ECMO (life support) and has had 2 stable days in a row so that’s awesome news. Another gal can’t quite explain what’s going on with her daughter but we are praying for her just the same. Another family whose boy is on the heart transplant list just had his last possible surgery to keep him alive until he can have a transplant and needs that transplant to come soon for him to make it. He needs some big prayers for a transplant SOON to save his life.

For us, we need Gideon to continue making positive steps, 1 small step at a time is awesome and we’re celebrating every little victory that he makes! I need to get well, please please please pray for me to be well. My parents and the big boys can use prayers, this has been a long road for all of them. The other families we get to know talking in the family lounge, we lift them up in prayer as well. Bo needs some rest, hopefully he will have a restful night tonight up there.

I’m sure I’m forgetting a lot but that’s all I can remember for now. Going to get my last bowl of chili (from a neighbor) and my fresh salad (thank you click list & another neighbor for picking up) for dinner, pee, pump, shower, medicate and head to bed for the night. I’ll try to have another update by noon tomorrow with how he did throughout the night. Rounds are usually between 9-11am and they can take a half hour so by the time Bo is done listening to all the doctors and nurses talk then ask all his questions and take notes then call me to share, it’s around noon. They do their night rounds around 11pm so hopefully I’ll be long sleeping before those take place tonight.

Thank you for the support and prayers! Give blood if you get a chance, Gideon used a TON, you can support us by giving some back to the next baby in need :)