PICU Day #1

9:15 PM
The day has ended positively. Jake calmly fell asleep while listening to cartoons. Much better than earlier when he needed sedation. Shortly after he fell asleep, it was time for his next dose of morphine. It was quietly administered through his IV, so it will hopefully help him sleep a good stretch.

Mornings can be very hectic with the nursing change and surgeons rounds, but I will check in as soon as I can.

Love to all!!

7:45 PM
Jacob is resting nicely. He is "watching" cartoons, telling stories, and even laughing a little. Here's hoping for a smooth night with great rest. It will be best for all of us if the eye swelling went down enough for him to see.

4:00 PM
Jacob has made some big-boy strides this afternoon. He insisted on peeing in the potty...twice. Next, he and I spent some quality time in the rocking chair. We are hoping that keeping him upright will help with the swelling. His face is still quite swollen but only his eyes are truly bothering him.

Otherwise, he's had a hard time settling down, so with his next dose of morphine, they are going to give him a sedative. Bless his sleepy little heart.

1:30 PM
The arterial line is out. This is a small win for the boy who is just having to tolerate everything else. He now has both hands free which is essential for drinking milk/juice and wagging Boof's tail. All we have left is an IV line in both feet, but only one is hooked up. So long as we are in the PICU, they will keep two IVs just in case.

He is responding 100% neurologically. He is talking about things from home, his friends, wanting to ride the carousel, etc. He has even been trying to express how he feels. He told us he was "mad at the doctors because they hurt his feelings." It was so cute, I couldn't help but laugh. Then he yelled at me for laughing at him.

Now if only we could get him some restful sleep. I think he would be in a better mood. But he is obviously frustrated and dissoriented by not being able to see.

11:00 AM
He has finally settled down for a nap. He has been up since about 8 AM with a constant stream of doctors, nurses, dietians, and pharmacists in his room. He was getting pretty irritated with every little movement through the room. I can't blame him.

I just sat with the doctors as they did their rounds. From what I understood, it sounds like he is doing very well. They were really impressed with how much he is drinking. Sounded like they are going to get him off of morphine this afternoon and use Tylenol with Codine. I believe we are going to be at least one more night in PICU.

As for tubes and wires, his only connections right now are two IVs in his feet (one is saline blocked and the other is active), an arterial line in his hand for easy blood draw and constant blood pressure monitoring, and monitors on his chest. We were able to remove the oxygen this morning and that made him much more comfortable to not have that up his nose. We are hoping that the arterial line will come out today so that he can use both hands. Other than the swollen eyes, his immobilized hand is a major point of frustration.

The swelling seems to be getting worse. His whole face is quite puffy. We are keeping his head elevated to hopefully reduce it at quickly as possible.

Let's just hope we all get a good nap before the next round of evaluations.

9:30 AM
Just asked for and tried a bite of banana. His jaw is pretty sore so he was only in the mood for one bite. I am just proud of him for asking and trying.

9:00 AM
We got in to see Jake at about 6:30 last night. He was already awake and had apparently been trying to climb out of the bed. He looked great, considering. I was doing an assessment of his tubes and wires and noticed two things. He didn't have a drain in his head like I had expected, which made me nervous for swelling. Also, I didn't see a line for a cathedar. I was told he would have one for two days or so. When I asked about it, I was told that he didn't want it and started pulling it out in the OR so they just removed it. Who does that sound like...Grandpa K.

We were quickly moved to the PICU. Jake was getting irritable at this point. He cried from 6:30 to nearly 10:00 PM. I believe we were able to get his pain under control and he fell asleep. He was up every two hours. We readministered morphine and he would doze back off. He was up from 2-3AM for a couple episodes of "Curious George". This is also the first time I noticed the swelling in his eyes.

By 8:00 AM, he was asking to go to the bathroom (and was able to pee in a cup), was resting comfortably, was crabbing at the second round of nurses, was asking furiously to go home, was distraught about not being able to see and has had his share of apple juice and milk. His most discomfort right now is that both eyes are completely swollen shut. I just spoke to our neurosurgeon and he didn't expect the swelling to subside for 3-4 days.

Updates are a little harder to come by since he requires so much attention. But prayers for fast healing are still much appreciated. Thank you all for the love so far.