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All Aboard the I-Man Train 
Welcome to Isaac's Web Page!
Isaac was born with a rare genetic disorder called Alpha-1 Antitrypsin Deficiency. This disorder caused Isaac to develop cirrhosis by the age of three. A life saving transplant was needed.
On December 9, 2001 Isaac received the Gift of Life, a new liver!
During the summer of 2004 at the age of six he was diagnosed with a rare bone marrow disorder, (HLH) Hemophagocytic Lymphohistiocytosis that was triggered by the EBV Disease (Epstein Barr Virus). The doctors recommended a Bone Marrow Transplant, BMT, to cure this disorder. Isaac received his second Gift of Life on April 21, 2006. On September 20, 2006 he received a boost of stem cells,a mini transplant.
Both transplants were performed at the Cincinnati Children's Hospital Medical Center, Ohio.
God has brought us this far and we are so very thankful. We thank you for the prayers and support. Thanks for visiting!
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Donate Life, you could save someone's life~
Journal
Monday, July 6, 2009 4:20 PM CDT It has been to long since the last update, sorry about that...
Isaac has been enjoying his summer thus far by going to the beach, going to the lake, playing outside ( when it is not to hot ), playing with his cousins, and just staying busy, busy, busy. We have not slowed down at all, for that I am thankful. So many times, Sammy and I thought he would not be able to enjoy being an active healthy boy. We continue to thank God everyday for Isaac's health and stand in amazement at God's work. I hear from so many people that Isaac is a miracle, to some it may be just words but he is a true testament of what a miracle truly is.
This past week was Isaac's follow-up appointments with the bone marrow and liver transplant doctors in Cincinnati. We do not have all the special immune function lab tests back yet but so far his blood counts look pretty good. His CBC, white blood count and platelet count, has been running on the lower side and has been for several months now. We are not certain what the cause of this is, but the doc is temporarily stopping one of his oral meds to see if that could be the culprit. He is also anemic because of low iron count. I know that sounds a little crazy because he did have iron overload from all the blood transfusions he had received over the years. He was getting phlebotomy every two weeks but we stopped that in Dec because his hemoglobin was getting to low. The overall level of iron in his blood is below normal. The iron deposits on his liver and heart has gotten better, but to what extent we do not know. We will know after the MRI results come in from the scan he had done this past Thursday. If it does show improvement, the doc will prescribe an iron supplement to Isaac which will help with the anemia.
The BMT doc said that it is time for his central line to come out in the near future because he has had it for a little over three years. Having that in for a long period of time can cause him to be at risk for infection in the lines. He no longer has the Mediport, it was taken out today. He had that in for five years and it was not working like it should, so it was just time for it to come out. Good news is...Isaac is PORT FREE!! Whoo Whoo! He hated having that port. We had to be at the hospital this morning at 6:30 am and he was in recovery by 8:15. He did great, the procedure itself only took about 10 minutes.
Even though the doc wants the central line removed eventually, Isaac will continue to require the IV med, Gammagard, for at last two more years. Since he doesn't have good veins in his arms anymore there is a new way of giving this particular IV med that has much better results. The new way will be Subcutaneous, which means given by IV under the skin, not in a vein, in the soft tissue of the abdomen or upper thigh. Isaac is not to keen about this new way, it does sound a little freaky but it is supposedly painless. If he does well with infusing the IV med that way, then I will be taught how to administer this to Isaac, and we can do this at home.
Now on with other news. I just found out this past week that Isaac's bone marrow donor, Bob, will be coming for a visit in a couple of weeks. We are so excited and cannot wait to see him and his girlfriend, Dinah. It has been about a year and a half since we last saw them. I know that he is going to be so surprised at how much Isaac has grown.
Continue to have a happy summer, it will be gone before you know it,
Melissa
Read Journal History
Hospital Information: Cincinnati Children's Hospital Medical Center
Links: www.cota.org Children's Organ Transplant Association
www.cchmc.org Cincinnati Children's Hospital Medical Center
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