January 9, 2011

Update #2...

Gage's fever is back. This is what could potentially keep him from coming home. The nurse gave him some tylenol so now we just wait to see if it's going to work.

He also lost his last IV...it infiltrated and caused his hand and arm to swell up quite a bit. His Neurologist ( Dr. Z) had happened to stop by and she had wanted to call up transport to get another line going but thankfully the nurse was able to talk her out of it and it was agreed that if he needs rescue meds then it will be given in another way.
Starting IV's and drawing blood is really traumatic for him.

Other then the fever and the IV everything is going well. I guess now we just wait and see.
Wait wait wait.


I apologize for the delay in this.

Gage's surgery on Thursday went well. It took a bit longer then they first thought because the Anesthesiologist was having a hard time getting the lines in. Once they finally did things went very well. The hospital was pretty good about keeping us informed which was great...sitting in a waiting room and not knowing what is going on with your child is soo hard.

There were some interesting cats in the waiting room with us...I wanted to line a few of them up and do a quick smack down.

Anyhow...once Gage was transferred up to ICU things got a bit hairy for a short time. Kris and I explained to every single person we saw that morning that it was important to stay ahead of the pain control. Gage has a HIGH pain tolerance...it's ridiculous how high it is...once he's in pain though it's almost impossible to get it under control.
We told this to every nurse we saw, the Neuro. surgeon, both Anesthesiologists...EVERYONE. Did anyone listen??
We got up to the room and poor Gage was a wreck.
He had so many tubes and a drain in his head and he was hurting and confused and SO upset. It broke my heart and really upset us that no one listened to us.
It took 2 doses of Morphine to get him calm.
I felt bad for the ICU nurse as it was not her fault at all and she had to deal with two very angry parents...she was amazing about it though. Very patient and understanding and went right to work figuring out how best to get him calm again.
Thanks Monica!!

Gage had a CT scan later that afternoon to make sure there was no fluid on the brain and aside from the craziness of getting him hooked and unhooked from all of the tubes it went well. The scan was clear.

Gage was pretty agitated the first night but they gave him a medication that helped calm him down. Kris stayed with him and I went home to be with Ellie.

The agitation stayed with him for all of the second day. Kris apparently spent the day by his bed trying to keep him from pulling out the lines.
Kris had another great nurse...this time a friend of my brother's. Hi Ginna!
He said she did really well and stayed on top of things with Gage. We really appreciate that.
Gage had an MRI done that day to make sure the Corpus Callosotomy was complete...it is :)

Around 10pm the second night Gage was transferred out of ICU and onto EMU. This was both good and bad...it was good that he was doing so well that he was able to be transferred but bad because the awesome care was gone and he was no longer able to get the medication for his agitation (it's only given on the ICU because the patient needs to be monitored so closely).

The 3rd day things got a bit hectic. Gage started to run a pretty good fever and was also an itchy mess from all of the morphine. Benadryl and tylenol were started and he was pulled off the morphine. By this point his pain was pretty well controlled with IV Ibuprofen.
The fever has been up and down but is hovering right around 99.1-99.5. His Neurologist isn't too concerned. She threw around some big, scary words as for the cause of it but isn't worried. Kris and I are just making sure the tylenol is given regularly.
This has been a little bit difficult as weekend nursing on EMU is a bit...lacking. They've been very nice but a bit...complacent.
We've got it handled though.

I think that's where we are now. Kris went home to be with Ellie last night and I've been here.
That's been one of the hardest parts of this...we both feel so torn. BOTH kids need us and we want to be with BOTH of them.
We're getting through ok though...we've got lots of help :)

I apologize if this update is a bit all over the place...I am very tired right now.

ETA: UPDATE...His temperature is finally normal!!!!!