Day 4. Still Good.

Ok, So yesterdays post was written at about 3pm, then I kept editing it as I wrote because so much was happening all at once. I just re-read the post and the honest update on yesterday was that it completely sucked. I was here all day, watching Oakes struggle, watching the nurses and doctors come in and out and it completely wore me out. I can only imagine how completely exhausted Oakes has been and still is!

He is off of his paralytic and is moving around occasionally. He opens his eyes briefly, but is on enough other meds that he isn't really waking up. He occasionally throws little fits, flailing around and holding his breath. When he does this his numbers jump around. I do not appreciate any of this and when it happens I find myself grounding him in my head!

To back track a little, on Sunday Oakes had a rash. It started out very faint and on his torso, then slowly moved to his entire body. At its worse it was covering maybe 70% of his body and was bright red. The Attending thought that maybe it was a reaction to Morphine, so that was pulled from his orders. But, then yesterday he had another rash at the end of the day, and again in the middle of the night. Yesterday his team thought that it was a reaction to an antibiotic that he is on, but they are very unsure. When I got here this morning he had already had a visit from Dermatology and an Allergist.

Occasionally when his labs are done, his blood gas comes back very abnormal. This means that his O2 levels are off as are his CO numbers - basically, he is not oxygenating blood how he should. So the question is, are these new lungs not doing their job, or is he having ananaphylactic reaction to something which is then causing his crazy numbers? It may take a few days to figure this out, but for now the nurses are charting drugs and times meticulously so we can try to pinpoint what is happening around the time of his rashes and crazy gases.

On the up side. Oakes has had his 4th Pheresis treatment and has tolerated it just fine. One more day to go. He is also tolerating his feeds just fine. (He is getting 2mL an hour which is less than a 1/2 a teaspoon and hour!) His urine output is still up, so that is good news as well.

I know Greg previously mentioned Oakes' girlfriend Elizabeth, and I am happy to report that she has been having some really good days. It might be because of the amazing care that she is getting, but I would like to think that it is partly because we are next door neighbors now. There is a window between the rooms with blinds that are almost always closed, but Elizabeth's mom and I have them open so the kids can 'hang out' when we are not here. We have even started posting love notes on the window to each other. In the very least this gives us something to giggle about!

Another bit of info that I wanted to share was a conversation that I had with Dr. Huddelston'ssurgery Fellow that went to get Oakes' lungs last week. He was working on the floor yesterday and I was able to pick his brain an bit. I asked him to tell me every detail that he possibly could regarding Oakes' new lungs. He was clearly busy and didn't have too much time, but he did give me some info. He said that he and two other surgeons left the hospital by van around 10pm (so my helicopter theory was wrong!), and went to Spirit of St. Louis airport, where are a Lear jet was waiting for them. They flew to a "po-dunk" airport out in the middle of nowhere, and were greeted by an ambulance on the tarmac that took them straight to the hospital. They were the first of three teams to arrive. One team was coming for the heart, another for the liver and kidneys. The heart goes first in these surgeries, and lungs right after. The lungs are removed together but separated for transport. They are cleaned and then dropped on ice in the cooler. They were then taken by ambulance with lights and sirens on back to the airport, they boarded the jet, landed at Spirit of St. Louis where the Children's helicopter was waiting for the, blades turning ready to bring them back to the hospital. I told him that I think he is a strange combination of Santa Clause and James Bond. I think he would like to think he is more James Bond than Santa. So, I don't know how it compares to Greg's notes but he thought they got back to Children's at about 6am. He said the lungs were as beautiful and perfect as he has ever seen. He said the entire run went perfectly. He shared that these runs are very exciting, and truly awesome. He also participated in the actual transplant and said he thought Oakes' lungs looked just as beautiful as the donor lungs! Eventually I will post pictures of all of these doctors and nurses that have helped out amazing little fighter.

I also want to share a little about the donor. I really don't know anything concrete and may never. We have the option to reach out to the donor family at any time. Communication will be handled my a third party so we will not communicate with them directly. However after 1 year if we choose, and the other family chooses, our contact data can be shared. The night of thetransplant I was picking the brain of Dr. Huddelston's Physician's Assistant about potential donors in general. We knew that the donor had to be declared brain dead but I just hadn't thought much beyond that. When I asked her how a 4 month old becomes brain dead she hesitated and I could tell was picking her words very carefully. She shared that a 4 month old infant is not likely to have a traumatic injury, but more often than not the usual cause of brain injury is abuse. When she said this my heart completely broke. I was full of sadness for this other baby. I wondered if it was loved at all? Was it neglected? What was the quality of life that it had? Oakes has had happy smiley days already, had he or she? As I processed this information and ran through this string of questions in my head, I just decided that I would love those little lungs like crazy over the years. I would love them so much that that baby in heaven would feel my motherly love. I already do love those lungs, and hope that that baby can feel not only love from us, but from the 3 other families that got organs on Thursday. And I have a hunch that that baby will feel love from lots of you reading this now!

It is almost 4pm and I am going to head home. Oakes has been resting peacefully all day,my visit has actually been very boring today. A very welcomed change since yesterday. Love to you all. Squeeze your loved ones extra tight tonight!

Becky

The beginning of Oakes' yucky rash on Sunday.

Oakes had his dressing changed yesterday. His incision is healing nicely. It stretches from arm pit to arm pit and will be the coolest badge of courage and strength ever! Not to mention he will make a cool pirate at Halloween! For now, we are loving his bow tie!

My sweet boy resting today.

...Our messages facing Ms. Elizabeth.

...and her message back!