Day +39

Daylon and his new toy from Aunt Michelle, Uncle Deven and his new cousin, Elizabeth. Thank you!

"When you reach the end of your rope, tie a knot in it and hang on."

-Thomas Jefferson

This post comes with a warning: I have a feeling I'm going to sound really arrogant. I apologize. I'm well intended! LOL! :)

Daylon had a good pretty good day yesterday. He did have some bradycardia moments where his heart rate would dip into the 50s but over all, things were looking up. We all just wanted a quiet day and that's pretty much what we got. This morning (middle of the night) I got several calls from the nurse, telling me that Daylon was having a brady episode. The doctors all think it's a brain stem issue, but I'm becoming more and more convinced it's a sedation issue. Let me explain.

Daylon is on four pain meds/sedatives. The doses given of each drug is ridiculously high. I'm not complaining, I like him comfortable, I'm just saying. Every time we get a new nurse, as soon as they nurse from the shift before leaves, the run over to the computer to check the prescription. Then a minute or so later they tell us, "I've been a nurse for ____ years and I've never seen anyone given such a high dose of _______ (fill in the med)!". I'm not joking when I tell you we hear this regularly. The nurse last night said, "normally you would give .6/kg for a high dose... not 6.5/kg! All these meds would knock the three of us out (me, Brian and the nurse)! How is he still moving?!". Anyway, once he's calmed down enough and sleeping, his heart rate drops. I asked every doctor I talked to yesterday, if that could be the case just trying to find some peace in the situation and they all said the same thing, "I don't think so.". Well, this morning around 8am they decided to try to go down on one of his sedatives (new attending today), and guess what happened. He went from low 60's to 100 heartbeats per minute! HA! I knew it!

One of the 2am calls from the nurse was about Daylon having pneumonia. Wait. What? How is this possible? His vent is on really low settings and everyone keeps telling us, "Well, at least his lungs are clear now". Over 24 hours his lungs can go from clear to pneumonia? I'm obviously confused by this. I asked to see the last two x-rays and the thing that was weird to me was the odd wire going from the slightly hazy "pneumonia spot" on his right off his arm. I asked what it was and the resident and a nurse played a bit of a guessing game, after which they decided that it must be the heating wire on the breathing tube. I asked if then the hazy spot could be where the ET tubes meet and the resident looked at a minute and then sheepishly said,"probably". Oh! I forgot a part! They had started to treat him for pneumonia and he had an allergic reaction to the med. they gave him. Anyway, tonight we're staying for the 1am x-ray and I'm going to hold the tube above his head so they can get an accurate view of his lungs. I hope, hope, hope that it's nothing and Daylon's lungs are healthy. We will see!

This afternoon we were suprised when Dr. Tolar came by. This guy can calm the most insane moments. He just the kind of guy you want to be around. Anyway, we especially wanted to be around him today! He had the best news! He told us that he doesn't think Daylon's brain damage is as bad as his colleagues think! Yay!!! He thinks Daylon has Benign Macro Cephalous. Basically, big head that holds a normal sized brain. When he mentioned this I was like, "Oh! My daughter Keira had that!". He was so excited to hear that big heads run in our family! Ha, ha! I'm sending him both Keira's and Daylon's head circumference measurements from their first year (Thank you, Brooke!) so he can come to a clear decision with the MRI. I'm so glad to see that one of these doctors is willing to look outside the box! I love Dr. Tolar! He's such a great doctor!

I haven't given his numbers to you guys in a while so here they are:

Weight : highest 16.5/normal 11.6/current 13.2 (almost there)

BUN:105/less than 19/51 (getting close, but they're up from yesterday)

Creatinine:3.5/less than .58/.9 (lowest in weeks!)

Bilirubin:5/ less than 1.3/ .8 (woo-hoo! look at that baby fall!)

As you can see, his kidneys and liver are improving! FINALLY! 5 weeks in the PICU is draining, we need out of here. They guessed another month or so, if things don't get worse. I can't wait! 5D is so much more roomy and safe. If you're over there, it means life is rough but at least it's not critical.

I heard a quote today that stuck with me,

"Hope is faith holding out it's hand in the dark."- George Iles

Thank you for your prayers and support. You have touched our lives, and made us stronger.

Daylon's toesies

A RMH volunteer group brings in go-carts for the big kids and little 4 wheelers and yard racers for the little kids every Mon. night. Caleb, of course, LOVED the Lightening McQueen car and Keira was all about the speed!


Brian and I saw this sign on our walk to the hospital. We were cracking up at how pathetic it is that they HAVE to say it! This has the 'Tonight Show' written all over it!