Home from UAB update

Wow, where do I start??

We are home from our visit at Childrens Hospital at UAB and we are soooooooooooooooo exhausted!!! First of all let me air out all my gripes about the last 36 hours and then I can move on to more positive stuff.

Our room was a 10 X 14 hole in the wall that was right next to the nurses station. And when I say " right next to" I mean Right Next To. There was no shower in the room and this morning when I turned on the hot water in the sink.... brown water came out. Yep brown water. I went and got the nurse to show her and she said " It must be rust from the tank or something"
What tank?? am I missing something here?? I told her that regardless of why the water is brown is irrelevant. Somebody needs to fix it. I mean i was mixing up some cereal for Dawson to take his medicine with. I almost made him eat brown water!!

Ok so we were a little frustrated with the living conditions. But I also need to say that Childrens Hospital has an awesome staff and they do awesome work. Last time we were there we were on a different floor and everything was magnificent. 4th floor.... not so much. Some fixing and updating really needs to be done to make it more comfortable for the kids and their family.

The test he had went well and as usual Dawson was a real trooper. The first thing they did was hook him up for his VEEG. ( I have to vent about this as well) This is our 4th EEG and until the other day (when I was informed by another I.S. parent on their blog) I had always thought this thought. With todays technology, it is absolutely insane that we are super gluing 20 leads to a childs head, and then wrapping and taping their head in hopes that all the leads stay where they need to be, Then pouring acetone on the childs head to to eat the super glue so that you can take the leads off when done. Well the technology is out there. It is a device that the kids wear and they are free to move around and its not so invasive to get on and off. I just wonder how many hospitals ( for the sake of the children) will be willing to purchase these new devices??? It will be interesting to see. It is my opinion that Every hospital should use this and get away from the 40 minute wrestling match that it takes to hook up babies for EEG's.

I feel better

After he got hooked up, he went down to have his PET scan done. He was given an injection of glucose through his IV, put to sleep, ( I still haven't found a way to watch that without tearing up) and then put through the scanner. After the scan was done he had his spinal tap. Everything went off without a hitch, and he was awake from the anesthesia in no time.

Our remaining time there was spent watching Dawson fight this " Bee hive" that was on his head. ( Pictures to come soon) Also he was given a high dose of Vitamin B6 to see if that would make any changes on his EEEG. From what we could understand,his EEG showed no change from giving him B6. We are going to stay on a dosage of B6 for two weeks then we will have another EEG done to see if there were any changes. ( cant wait for that)

None of us, including Dawson, slept much at all last night. He would fall asleep but then wake up screaming. This went on all night. He slept a little better while we were there today and then slept all the way home. So we are glad to be home and we are looking forward to the results from all the testing. We did find out that the PET scan didnt show much, The Doctor said there might have been a couple of areas suspect but it was nothing obvious. Im sure Dawson's neuro will cover all that with us and let us know in detail what all that meant.

That about sums up our trip. We knew it would be tiring and we thank you for your prayers while we were gone. Thanks again for the comments being left behind. They are so helpful and inspiring and how awesome it is to have such great family and friends during this.

We love you