My internet was acting crazy last night so I didn’t get to update. All in all yesterday was a pretty quiet day. Dr. Koenig and LaKeesha came by in the morning for a while. I don’t have nearly as many questions now. It is more like friends coming for a visit. She asked me about doing some media stuff for her. I told her I’ll talk to anyone as we all know!!!! Basically at this point we are just watching Buggy pretty closely and praying his belly will start working. Blood pressure was EXTREMELY low around 4:30 yesterday afternoon and then we took his blood sugar and that was 48 which is also really low. I always joke with the doctors and nurses that he doesn’t lime to give us a moment of peace. We bumped his dextrose until his TPN was ready and he was fine. He has done great so far on his TPN. It needs a lot of tweaking. They have been really cautious because of his history of reactions. Right now his TPN has No vitamins. We will add those today. WE can also add an IV form of his reflux med right into his TPN. The second part is his lipids or fats. They were extremely concerned because those are egg based and Alex is allergic to eggs. You “shouldn’t” react because it is purified and all that, but you never know, however Alex has done great. But in typical Alex fashion we couldn‘t go 24 hours without some excitement. Things were going great until 4 am. Alex’s blood pressure was 68/21 and then 65/24. His blood sugar was okay. His rectal temp is 95.3. We just gave him additional IV fluids and his blood pressure has come up some, but despite being wrapped in warmed blankets his body temp is not coming up. We are not sure what the problem is. They are running more blood cultures this morning. They have seen some mito kids have their temperatures drop when they have an infection instead of rise. Their fear all along because Alex broke out in spots for so long is that the infection is in his body just sitting somewhere. Once I see Dr. Koenig I will update again.
We changed rooms late this evening. We really liked our room, but they had a room open 2 doors down from Jen and Landon so we moved over here so Jen and I could be closer for support but still keep a close eye on the kids.
I had a good day. I spent about thirty minutes this morning with two of the child life girls chatting and laughing while Alex played in the playroom. Then this afternoon I spent about an hour with three more girls chatting and having a good much needed cry. So Kelly, Laura, Stacey, Ginger and Leigh Ann THANK YOU!!!!!!!! You guys make this so much more bearable and enjoyable for both me and Alex I am so blessed to call you girls my friends. And as much as we dread coming down here we are happy to see you too. For those who don’t know what I’m talking about. Alex said 2 things when I told him we had to come back. One, W had to come to Houston “because Dr. Koenig missed him SO much” and two “ those child life girls are going to be so happy to see us”.
Anyway, Please keep us in yours prayers. The internet is really finicky so bear with me.