Saturday, June 18, 2011

In my words...

I guess when I sleep, the Monster Daddy gets busy updating everyone! I'm glad he let me sleep through the night though. It's been quite a few nights of not sleeping lately, and I definitely needed a catch-up.

Steve did a great job of updating the play by play of what happened yesterday. And giving a few memories from his point of view. But, I did have some thoughts and memories I wanted to share too. And, like most instances, I am much wordier than my husband!

When rolling back to surgery, for the 3rd time in 7 months, I thought how colorful and bright this whole hospital is...except on the way to the serious stuff. On the way to more tests...on the way to the ED...on the way to surgery. Stark, white, sterile hallways.


I think I should go through with some silly string, or splatter paint and brighten those places up.

When we leaned over to give him kisses, and tell him he was going to go back and go to sleep...leaving out the part of having his middle cut open and part of his insides taken out...I got that catch in my chest. I don't want to leave his side for a minute when he's here.


Every surgery and procedure holds it's risks. From a simple teeth cleaning under anesthesia, to a multiple hour brain surgery, especially for kiddos like Max who are so involved. I tend to forget to breathe until they come back and tell us he's ready for us to come back to post-op.

To pass the time during surgery, we ate a little breakfast. Paced the hallways. Tried to make each other laugh. Whatever to take the place of worry. We decided someone could make a living putting up those chair massage stations right outside of the surgery waiting area. I could have certainly used a massage for those two and a half hours of sitting! Sheriff Woody kept me company though.

When we got back to post-op, he was pretty scared looking. Upset, and confused. There is something magical as a parent when you can be the only thing in the world to comfort your child. What is it, a sense of pride, of belonging, of knowing you were made for this? He did calm considerably once we got back there. But wouldn't let us leave his side. And by his side, I mean would not let us be more than inches from his face, and I had to be holding his hand at all times.



Even going back through the hallways, to his room he wouldn't let go.

They let us go back to the floor because he was doing so well with his breathing and seemed to be resting after a quick seizure. Seizures can tend to pop up after any procedure. But with the amount of work they were doing on him, we expected to see some. Once we got back to the floor, the thing that didn't normalize was his heart-rate and respirations. Resting, he's usually around 112 on his heart-rate. He was hanging out in the high 170's. His respirations are usually around 20 breaths per minute, he was up in the 60's.

I stepped out to see his nurse, the charge nurse, and the nurse he had a couple of weeks ago all on the phone to a different part of his team, saying his name. There are moments in the hospital I have learned that things were ramping up. This was one of those moments. The nurse came in and said they were calling the rapid response team, and within minutes, the 3 docs/nurses from the PICU, 3 docs from surgery, 2 docs from pain management, 2 docs from metabolic, an xray tech, and four nurses from the floor were with him checking everything about him. Yeah...things were ramping up.

It was decided pretty quickly that he needed to spend the night in the PICU. I have had my moments since this new hospital was built that I've wondered what the new PICU looked like. It's a place of mixed emotions for me. The hardest moments of my life were spent beside Max's bed in the PICU. He had two extended stays his first year of life of a month each. When we were finally discharged back in 2004, we said to ourselves, I hope we never see this place again.

We never did see that PICU again. And the worries and anxiety I had about this PICU, I quickly found out were all for naught. When we walked in these doors, there was no catch in my breath. There were no memories. This was a different place. It was a little familiar, as I remembered some of the faces from the old hospital. But, the place itself had no power over my emotions. And that helped me push through to help figure out what was going on with our boy.

We had a great team of nurses working to figure out how to calm him. It is a special breed the ICU nurse. They are calm, and quiet, but a force to be reckoned with. Some of our favorite nurses that have ever cared for Max are PICU nurses. The nurses he's had so far are no exception. Once they figured out that his fluids weren't going at the rate they should have been, and that he hadn't gotten enough before surgery, the pieces all fell together. A little shock to his body after surgery, and dehydration caused seizures, fever, high heart-rate and tremors. They increased his fluids and within minutes he was calming. And so were we.

Steve got out for a bit to get a bite to eat, and then we traded so I could go eat. One thing that has not changed since we were in the hospital 7 years ago...Max is never alone while in the hospital. We know this is not something every parent can do, but it is as important to us as making sure he's breathing. He needs us there to tell the nurses and doctors he's hurting, or needs to eat, or needs his medicine. We check everything that goes into an IV line or into his stomach. So, since you can't eat in the PICU rooms, we took turns leaving his bedside.

As I was walking out, I saw a few more familiar faces, but one in particular was one of the nurses that cared for baby Max. When I came back from eating and walking around on the floor maze in the lobby while calling family, I saw she was standing outside Max's room talking to his nurse. I mentioned to Steve who it was, and he got up to say hello. It took her a second to remember, and then she wanted to see how big baby Max was. The last time she had Max, she left two tiny "live strong" bracelets for him, and two for us. We had given her a Max doll from Where The Wild Things Are, and she said her own kids play with it now. It's always nice to see nurses who have helped along the way. But, like I said, the PICU nurses are in a different category. They see their patients at their very sickest. And can do amazing things to help them get better and move up and out of the hospital. But, when they do get better, or don't frequent the PICU, you loose contact.

She said she had thought about Max through the years and wondered how he was doing. It was a special reunion. A proud moment, that even though he was sick enough to be back down here, he had made it 7 years because in part to her care in getting him better, and has not needed to be back. I sometimes wish there was a way to contact those nurses who have cared for Max along the way to just say, thanks, he's still with us, and look at how great he's doing!

Max had settled enough for us to try to get some sleep, and sleep I did! I got up a couple of times with Steve to check on Max, but my body protested each time. So, I finally gave up and just slept. I slept through doctors and nurses coming in all night to check on him.

He's doing better this morning. Still very sleepy, and still needing pain control. But, he's been waking to look at us from time to time, and that's always a welcome sign. We just got word that we're moving back to the floor. Hopefully we won't need to come back down to the PICU once we're back on the floor in a bit. But, if we do, we know he'll be taken care of.


Leanne Stewart said...

He has your hands, Deana. Max has your hands. :)

Junior said...

wow, we were out of town and I missed that max was having surgery. Lots of hugs and prayers for a quick recovery for your sweet and very brave boy.

Anonymous said...

My tear flood gates have been opened. Love you all. Max, get better soon!!!! <3 Chi