Cranial expansion surgery post op day 2

Today has been awesome. Like really awesome.

We moved out of PICU late this morning. Michelle has adjusted to the step down side ICU very well. She's also enjoyed her morphine really well today. Were working on that one. Less morphine more tylenol.

So far she has been able to stay off the hypertonic saline and her sodium levels are stable. After we let the morphine wear off this morning she became a lot more responsive and willing to do some of what we were asking her. Like eating ice chips. That's a lot better then what we were doing this morning. I am pretty sure her lips were really sticky from us just trying to get her to take a sip of something. And eating was beyond out. Now as a matter of fact she is hungry and is waiting for her food to arrive right now.

She absolutely hates the ice packs. Like to the point she actually threw a fit over them earlier and made the monitors see red and scared her nurse. Luckily she calmed down and let me put them on for a bit. Her right eye seems to have take the brunt of the swelling. Her left has actually tried and almost successfully opened twice today.

Tomorrows plan is to take her drain out. Still aren't sure when we may get discharged but Michelle is starting to return to herself.

Cranial expansion surgery post op day 1 Update #2

Things are moving QUICKLY. An what that means is, they removed the arterial line because Michelle's pressures are as stable as stable comes, the removed an IV from her left hand cause it clotted, and they removed the femoral central line in her pelvis.

She has come down A LOT on her morphine and tylenol need. We have been able to get her to wake up and talk to us. Most of the time it is for a good amount of time. She is eating and drinking and the nurse has turned her saline that is running into her PICC line down 5 times today. The next step is off. They are still keeping a close eye on her blood count to make sure she doesn't require another transfusion and her sodium levels since they turned off her hypertonic saline.

Everyone here is very surprised at the amount of progress she has made only being 24 hours post op. As of now her eyes are swollen completely shut. The Neurologists aren't too happy about that because they really wanna look at her eyes. But they are happy because some of Michelle's tone from her CP seems to be returning, which means she is regaining the use of all her limbs ( I would know I got whacked trying to help the nurse take out the lines). These are good things. Very good things.

My hope is to be able to move her out of the PICU by tomorrow. If they doctors don't think she is ready then they wont but they did say if they move her there will be a PICU nurse assigned to her for at least 24 hours more so that they can monitor her sodium and should it drop they can restart the hypertonic saline and move her back to PICU. They say the only way to get where you want to go is to put one foot forward right? So if we have a setback I am alright with that.

Let me tell you something I have learned about since being here. It's called Healing Touch. They have been having trained RN's come around and provide the service for Michelle. She's seem to respond very well to it. Before you break out your voodoo dolls take a breathe. Tonight she offered to do it for me. I said sure why not! Let me get a first hand glimpse into what this is all about. Well here's what its all about folks:

We all have energy about our bodies, were full of it! Both positive and negative. Healing Touch is about helping to rid the body of the negative energy. Through the power of touch and not touching they very amazingly help you to help the negative leave your body. I am not even kidding, she asked me if I have been carrying any stress or any pain and I have it's all been tension in my neck. After about 10 minutes I couldn't feel the tension. Look this stuff up and quit sticking me in the eye with your voodoo needles. This stuff works! As long as you keep an open mind to it you can honestly FEEL IT.

Needless to say I asked them to come back tomorrow to do another pain session with Michelle. And I will be taking a class on this ASAP. I want to learn. Look it up.

Cranial expansion surgery post op day 1 early morning update

Michelle had a good night. And by good night I mean two doses of pain meds and some tylenol along with some broth and Jello and about 5 1/2 hours of alertness. More then any of us anticipated.

Today the plan is to get her drinking more at least. Waking more. It seems like when we wake her up she is MAD. Not in a way because she is hurting but because her eyes are swollen shut now. There is a lot of swelling all of which we were told to expect. They want to take some of the lines out of her today. She's got two IV's in each hand, a PICC line in her arm and a femoral central line in her pelvic area which makes diaper changes a little difficult and an arterial line in her left hand. Oh and her drain that is helping relieve any fluid pressure changes in her head which isn't putting out much at all which I hope is a good thing.

Im scared to touch her too much. It's kinda like when she was in the NICU and they told me I could touch her that I wouldn't hurt her but I was scared to death that they were wrong and my touch would hurt her. I mean come on she's gotta be hurting right?!

They said we should be able to take the arterial line out maybe today and give her some meds to help more with the swelling since she hasn't been out of bed since Saturday evening. Her whole body is kinda swollen but with her face being the worst. The bruising has started. Daddy was teasing her about not boxing without gloves or something last night but she wasn't letting him get too far with that.

Hopefully we can get a real bed for her today and get moved downstairs to the medical unit versus being in the PICU (which is ridiculously loud considering its intensive care and these kids really need some rest). But if not I am going to push for them to get her a bigger bed. She is more comfortable that way and then we can cuddle her the way she wants to.

Her Neurosurgeons have come by already. All of them saying the same thing, that we will assess her headaches when she's more alert and isn't in too much pain.

Neurology isn't saying much just making sure everything is kinda doing what it's supposed to be doing or was doing before the surgery and before she declined so quickly neuro wise.

The PICU team is on board with all of that so I guess we are too. I just wish some of these meds could get stopped. But that will come with time. It's time since she had her meds that I wake her up and try and get her to drink something. Maybe we can keep her awake for a while so we can get a good neuro exam so some of the doctors will breathe a little bit.

Day of surgery.

So I am going to do my best with keeping everyone updated. It's hard for me to find down time to do this but here I go.

As I am typing this Michelle is snoring in the background. Such a sweet snore it is. Seriously as far as snores go hers I love.

We went from the PICU where Michelle has been since Saturday night to the operating room this morning. We met with everyone except the plastic surgeon. I honestly think we just missed him. The plan was to expand her skull and give her brain a little more room. Room we now know was very much needed. I got to walk her back and see her to sleep and then I met up with daddy and hung out waiting for the word from the Neurosurgeon that his portion was over.

Honestly it didn't seem to take that long before our pager went off and we were taken back to talk with him. He said his portion went very well and that she was doing very well. We asked all the "normal" questions and then went back out to wait some more.

About two hours maybe less passed and the plastic surgeon came out to get us. He went over what he did and that he was able to create the much needed space and that it appeared Michelle's sutures (think of the soft spot that everyone tells you they don't want to close too soon, well you have more then one.) in the front of her head had fused early but that she had plenty of room for her brain now. I let him know that a few years back we did do the cranial band for her because her therapist was concerned over the shape that her skull had taken on back then.

After that it was off to go wait some more. We hurried on up back to the PICU to go drop off a couple of stuffed friends of hers that I knew she would want if she were to wake up. After that we were lurkers in the hall just hanging around waiting to see her. It didn't take long for them to come down the hall with her. A quick kiss and they took her back to her room. We went and ate lunch and came back up to wait for her to wake up a bit.

Let me tell you those first words out of her mouth were music to my ears. I honestly didn't expect her to wake up tonight. I figured that it would at least be until tomorrow. She's been in and out for a few hours. She just had about a 15 minute window of alertness to let us know she was thirsty and she's been back to sleep ever since.

These are the things she has now let me know she doesn't like:

* Her eyes are almost swollen shut

* The face masks we got her are very cold

* She wants her super mummy wrapped head unwrapped and that it itches

* That she can't go home yet.

A little list of things in my book that can be fixed. Thank you everyone who has made it a point to call, text and follow along! The doctors are very happy with how she is progressing this evening and I just hope she is able to keep it up and her pain stays down!

I will update as I can!