Daylon and Nurse Emily using the "troft" -2 a.m.
EB kids have a bit of a challenging time receiving respiratory assistance since they can not be suctioned and many masks can tear the skin. Around 3am there was talk of him being moved into the PICU (Pediatric Intensive Care Unit) and have the breathing tube put in. The BMT docs want him over there before it's a life or death emergency so that he can have EB experienced Dr.s intubate and look after Daylon. The PICU docs want him to only have it when it's an absolute emergency since he has JHEB. After hours of not really knowing what was going to happen, they decided to wait a bit longer. His pulse/ox is being checked continuously, which is a EB challenge and he now has a nurse all to himself. It sounds like a casino in here with all the chiming. Another way they've decided to help Daylon breathe is by doing a light suction in his mouth. I'm not thrilled with the idea. It's grabbing secretions but it's also blistering his mouth. Kind of a catch 22.
Daylon and his dinosaur oxygen mask (w/ mepilex transfer for protection) - 4a.m.
The oxygen mask bandages finally perfected for Daylon! -6:30a.m.
Early this morning he also started to run a 102 degree fever which is being controlled with Tylenol. Thankfully all of his labs have been coming back infection free. From what I'm told, fevers are kind of the norm around here in immune system free world.
Late this afternoon Daylon began to vomit blood and the diaper attached to the end of his g-tube was soiled with blood. The labs that they ran following that showed that his platelet levels were low so a bag of platelets were added to his IV stand and his hemoglobin level dropped 2 points in 12 hours showing signs of internal bleeding (most likely from the mucositis). So like I said, we're knee deep in it now and if my emotions the last two days were any indication of how I should be feeling right now, I'd be on my way to the psych ward. But it's just the opposite actually. I feel totally calm. I was really able to enjoy the 20 or so minutes today that I was able to sit and hold my son..without oxygen. After last night, that was like it's own kind of little miracle. Yes, he is back on oxygen right now, but I know what a fighter Daylon is. He has a desire to live like few people do. One of our nurses walked in today and said,"This is the first time I've ever seen him where he's not laughing and hamming it up!". She's completely right! He has such a great attitude, pain or no pain. He loves life. What a great example he is to me. I can't wait to see him sit up and give me his great, big "Grrrrooowwwwlll!!".