Monday, January 29, 2007
Okay all sorry again, but I have to redo this page...something happened to my last page.
Here are the updates. Caleb was life flighted to Children's Hospital on November 21st due to a shunt infection that made him run a fever of 105. They immediately took him into surgery upon arrival at children's to remove the shunt. A temporary external shunt was placed to drain the spinal fluid off of his brian. He was then kept in the ICU for the time while he had the external shunt placed. At one point the external shunt (EVD) took too much fluid off of his brain and his ventricles collapsed. He then recovered, approximately 3 weeks later, and another shunt was placed on December 4th.
The icing on the cake...while Caleb was in the ICU I called my work and spoke with my former boss and he said 'don't worry take care of your family' but two days later he left me a voicemail, yes a voicemail, telling me I was fired due to my absence from work. On to top it off they stopped my insurance on the day I was fired also, they planned that well. But my family and I have discussed this and why would anyone want to work for a company that acts like this anyway.
After the new shunt was placed Caleb was then moved to a regular floor room. We then noticed that every lymph node in his body was swollen and he had sever diarrhea. After many weeks of tests and biopsies we found out that Caleb has an Immune Deficiency, he doesn't have an immune system at all. He has received two doses of IVIG (IV immunoglobins) and one transfusion. We have found out that this deficiency acts like 'bubble boy' syndrome but it can be treated differently. There is one place in the world, Duke Medical Hospital, that does a Thymus tisssue transplant. This procedure uses tissue from a baby that has undergone open heart surgery and then this tissue is implanted into the recipient's thighs. However, there is a process we have to go through to see if Caleb would benefit from a transplant of this type and if he is accepted. If accepted, we would go to Duke and they would do the transplant and we would stay for approximatley 5 to 6 months. Of course we have to see what insurance will cover, as we are on a temporary insurance since I lost my insurance when I was fired. In addition, I will be going to Duke with Caleb along with my mother. Brian, unfortunately, cannot be at Duke the whole time as he is our only income at this time. We are trying to find out if there are any discount flights that he can get so he can fly to NC as much as possible. We would appreciate everyone's prayers that this type of tranpslant will work for Caleb and that he is accepted.
I have also been asked where cards can be sent, you can either send them to our home or to the hospital (if we should switch hospitals I will post the new address)
Pittsburgh Children's Hospital
3705 Fifth Avenue
Pittsburgh, PA 15213
Attn: Caleb Hlebiczki, 9th Floor, RM 9749