4/13 Happy Easter-Happy Passover - God Bless U

It's been a pretty exciting and grueling week for my little Jamie but it's all good stuff. Let me first start by saying last weekend was tough. With Jamie's IV gone there was no way to receive her IV pain med - that included dilaudid. But Jamie knows her body unlike anyone else and she new that enough was enough - she just doesn't need pain medication anymore. Even though dialudid was ordered to be given to Jamie by mouth she didn't need it. Anyway Jamie had already been refusing a lot of her pain meds – which is great - but no more dilaudid was the biggie and not very pleasant to stop. With dilaudid gone she endured withdrawals - sweats, nausea, vomiting, headaches, no appetite/no eating and just overall feeling pukey. But she's awesome she took it like the strong girl that she is.

So when Monday morning came along and blood was to be drawn for CBC count I was worried that the advances Jamie had made the previous week was going to have a step backwards - but nooooooooo way. Not only did her prealbumin go up, but it went from 15.8 all the way to 29.6. Everyone was shocked and so happy including Allison, Jamie's dietician - Another sign was needed to celebrate this exciting advancement - Jamie is officially in the range she needs to be in - between 20-40. Great news. What's amazing and the reasons for fighting so hard for these numbers was apparent when wound care was done.

What a miracle. Jamie's bottom is healed but for a small quarter size wound and her legs have a few of the same. And as of today - drum roll please - Her bottom is bandage FREE (except for a small bandage) Unbelievable - Oh yeah and with her exposed bottom - it's cold!!!!!! The next step is to get her legs bandage free. Although there are only a few wounds left on her legs the bandages are necessary. They require the necessary pressure needed to reduce swelling to take her legs to the next step for prosthesis.

So then along came Doctor Hand Doctor to check the progress - and guess what - no more bandages are necessary. But this is a whole different reality and a not so pleasant reality for Jamie. With all her fingers gone it was very, very upsetting for Jamie. A lot more surgeries are still needed to get Jamie’s hand functional but it just not very pleasant. BTW an email has been sent to Worcester Polytechnic Institute where they have been granted a contract to research along with The Defense Advanced Research Projects Agency (DARPA) to regenerate a large body part such as a finger or even a limb. Anyone know anything?– we can sure need your help

The week was full of exciting things including everything that went on in Austin (read Nicholas' post that covers all our activities). Jamie's primary physician has DC most of her pain meds. Her tube feeding has been significantly reduced - hope to get that out soon too. The foley catheter will be the next to be removed. And it all ended up on a positive note. Jamie got to sit on a wheelchair and was even able to leave her room. So we went exploring - the hospital is pretty quiet on the weekends while no one is around. So we went on a tour and tomorrow we plan to make a surprise visit to some of our hospital family.

I must end my note by thanking everyone for keeping up with Jamie. Monday will be 5 months since Jamie was attacked by this horrible disease. Needless to say her battle is not over. But thru all your prayers and good thoughts, words of encouragement and love we made it this far.
God Bless All of You