Well, here we are sitting in room 847 of The Children's Hospital, AGAIN. It is kind strange yet almost "normal" feeling being here again. The room is essentially unchanged, but I can't help but look around and notice that the walls have some dents and the floor is a bit more used than when we left. We were the only people who used this room for the first 6 months this hospital was open and for the last 5 months many patients have come and gone.
So "why are you there" I'm sure you are asking. Milo has been having some problems with his g-tube feeds. He gags and forces himself to belch (not an easy thing for a kid with a Nissen) and is just miserable no matter what we try. It started out happening for a few minutes after each feed and on Thursday he was uncomfortable all day and that night he was completely miserable. We had a night nurse Thursday so it was nice to have the help. He was so uncomfortable his breathing started to be affected. He needed more oxygen than normal and was working harder to breathe. I took him to the pediatrician on Friday, of course our normal person was not in so we saw another doctor who decided that he needed to be admitted to the hospital since his breathing was being affected. He was so miserable at the doctor's office that he laid in my lap and cried. I had never seen Milo cry because he felt bad or was in pain. He even cried out loud. The 8th floor didn't have any beds so they checked the 6th floor but they didn't have any either. The doctor called around and eventually we ended up back in our old room. The 8th floor is equipped to take care of 4 trach/vent kids at a time & Milo has made the 5th one right now but as soon as they figured out it was Milo that needed to come up they figured out how to get us up. It took a while before they would be ready for us though so we spent hours in a small exam room. Milo didn't really care, he slept most of the time. He is feeling better now but has had very little to eat since Thursday night. His breathing is back to normal. When we got to the floor they increased the support he was getting on the vent and increased his oxygen. He was off the vent for most of today and did just fine. I thought they were going to put his vent settings back to his normal but that didn't seem to happen today, guess I'll check into that in the morning. He is on IV fluids to keep him hydrated and this evening we started giving him some Pedialite which seemed to work out alright. The doctors aren't sure what is going on. He has had lots of blood work which looks alright and a chest x-ray that looked good. A GI doctor came today to look at him and get some history but I haven't heard back from them yet. Hopefully tomorrow we will try a little bit of formula and see what happens.
Well guess I should go now. Milo is awake in his crib and sticking his finger in his trach for attention. He slept from 8-10:30 and is wide awake now...
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