Update

I am totally exhausted since Friday. It is always an adventure in the first 3 days of our hospital stays. He was suffering from alot of upper airway issues b/c he is just too weak overall to handle his own secretions. This is where the removal of his tonsils and adenoids may be helpful, allowing him some more breathing room (literally). On Sunday morning he was doing really well and we were thinking about being released. NOT. Mainly b/c of our idiot nurse. Man, what a ding dong. Avery started with quite alot of diarrhea which for him having major metabolic issues is a huge risk factor. So as a nurse measuring his inputs/outputs is pretty important. Well, seems she dropped the ball on that one. As the day went on he became more and more distressed respiratory wise b/c when you are dehydrated your secretions dry up and get thick. This becomes really difficult for him to handle b/c he cannot cough it up. So a probable solution to this is IV fluids. Well, the ding dong never checked the IV throughout the am to see if it was working. When we needed it, it was blown and we desperately needed a new one. Problem is when you are dehyrated it gets very difficult to get an IV in. SEVEN hrs later and tons of nurses and at least 12 pokes later they finally got it. He was in total distress at that point and was having some seizures to which he has not had. UGH, UGH. GRRRRRRRRRR

My poor mother, grandmother and uncle all came up to visit him through all of this. Poor things were totally mortified as I was. He was finally transferred to the ICP (step down ICU) and they had to fix all the problems from yesterday. So today we are left with a few decision. The ICP dr. who had previously had many difficulties getting lines in Avery and knows his history is pushing for another Central line. Well if you have all been following his history, that did not go well with all the blood clots. He wants to try another type. I am so on the fence with this and very nervous about it as you can imagine. I sure wish I had a crystal ball. Also I am now pushing for his T&A reomoval this week as he is already there and his chronic respiratory problems at home. They are getting the drs. together and I am still up in air and it will ultimately be our decision, just not sure what to do about the central line though.

After 11 long and great weeks, on the night I came home for sleep. Mr. Isaiah started a cycle. I caught it early and gave him valium, really hope that nips it in the bud. He has been so great without a cycle.

Janessa was VERY bummed about Avery going in on his birthday. She just told me "We are not a normal family b/c what family has to have a member go to the hospital on their birthday" What do you say to that???