Day +56: Busy Day part I

Last night I stayed the night at the hospital for two reasons: 1. to be with my baby who was so very sick and 2. to make sure I had time to ask my slew of questions to Dr. Tolar in the morning.
Daylon continued to run a high fever until 5 am, after which, I conked out on my hospital cot, which I lovingly refer to as 'soft cement'. The attending visits start ridiculously early so my trip to slumberland was cut short. Anyway, Daylon did well most of the early morning but during rounds the doctors decided to do a chest and head CT on Daylon to see if they could spot anything that could account for his crazy fevers.

off we go!
By 9 am we were out the door and on our downstairs for the procedure. Daylon absolutely loved the rides! His nurse Rachel, asked the doctor who accompanied us if Daylon could start taking little trips around the halls and she agreed! Hopefully we'll start that tomorrow.

The chest CT showed that the back of both lungs were slightly collapsed, but they no one seems to be too concerned or surprised since it's fairly common in people who lay flat for a long period of time. So, the chest isn't the culprit... Next!

His head CT showed that his subdermal hemoatoma is "evolving". The swelling has gone done and the necrotic area of the brain is shrinking. To be clear; the brain damaged area is not shrinking, that area of the brain is. We were told that it's the natural course for this type of brain injury. As for an abscess or infection? None. Going back up to 5C...

While we were gone, Brian and two of the girls (Keira and Violet) came by to visit Daylon. Keira has been bugging us to take her to see Daylon for the past couple days, so Brian had time today to bring her by. I guess Violet had a heart attack when she found out they were going without her, so Brian brought her along too. When they arrived at the hospital and saw the empty room, Brian told the girls to take a seat and wait it out. Apparently, Keira was very concerned about Daylon's where abouts and was unfamiliar with what a CT is (obviously) and Brian told me she was very anxious. He didn't worry about it too much and got busy with something else. After a few minutes, Brian spotted a note Keira had written on the board....


It's a "D" and a question mark. I know I'm her mom so everything she does is cuter to me, but I had to share! It melted my heart!
We came up and visited with the girls and then Brian took them back to the RMH for lunch. Dr. Tolar got the page that we were back and came in for a chat. I had several molecular EB questions and one neurological question. I explained to him, what I explained to you all last night. Daylon doesn't consistently respond, our play with toys, or smile. How much is meds and how much is the new him? He told me simply the same answer he's told me before: I don't know. He said that if the same brain injury had happened to he or I, we would be a vegetable. The fact that he's moving is good. He told me he has hope, which is always nice to hear. I go through these moments where I want to hear the cold truth and then when they give it me, I think, "Whatever. Daylon can still prove them wrong. He has already." I'm fickle. What can I say! :) I guess mostly what I want to hear is, " Oh, he'll be better before you know it!". All good things take time. Deep down, I know that. :)
Dr. Tolar also told me that he wanted to do a lumbar puncture (spinal tap) to check for a series of possible infections. The open time slot was for 4pm. Over the few hours we tried to squeeze in as much as possible since dialysis was going to have to wait. The occupational therapist came and Daylon practiced tracking with his eyes, reaching for a toy stick (he didn't try at all with his right hand but he made a bunch of hardy swinging attempts with his left), and she stretched out both arms. We also noticed THIS!!!! (look down)

CHECK OUT THOSE EYEBROWS!! It's like these two little black caterpillars crawled up on his face and made a home! CSA is a drug he's on to kill his immune system so his body doesn't attack Caleb's cells. A side effect is insane hairiness. So, you decide.....

CSA?

or....

Edling genes?

he looks like Steve Carrell in this picture!

So , he went down for a spinal tap, which is an adventure for any kid, and so far everything has come back negative. This is a good thing. As long as everything else comes back negative, they'll call it a fluke and keep moving forward. The last result will take a few days.

Dialysis ened up being cancelled for the day (they would have ended after midnight) but he'll be the first patient on the docket tomorrow morning. Ah, another bright and early day!

By the way, thank you for your comments from yesterday's post. Several of them moved Brian and I to tears and we could feel your love in each of them. We love you all. Please continue to pray for our son. We're so grateful!

PS- Remember how I said we spent some hours wasting time? Well, check the post below. We have a bit of a surprise!! (I would have posted it all together if I could figure out how to have video and pictures live together on my posts in harmony! ) :)