We went up to Children's Hospital Boston for our very first outpatient visit! And we drove for the first time too! We live seven hours away from Boston, so it is quite a drive. Peter did amazingly well. We have previously had to go up via Medflight due to Peter's difficulty in travelling in a car without getting beside himself - never knowing if it was something wrong or a simple tantrum or what. Up until August he didn't ride in a carseat, but rather a make-shift car bed. So, seven hours in a carseat with only one long stop, and very few tears or complaints. Who could ask for more?
Dr. Kim, Dr. Kamin, Dr. Puder, and Dr. Lo all came in to see Peter. Everyone commented on how good he looks. And we have decided to make him inactive on the transplant list... the urgency for transplant seems to be gone. The liver injury appears to be halted, possibly reversing. With the liver cooperating now, we don't expect that he will suddenly nose-dive into illness as he would do if he were still declining in health of the liver. This is really amazing. There have been about 70 children pull out of liver injury on Omegaven at Children's Boston. We expect that Peter will follow in their tracks and continue in his improvement. He is apparently the first child to pull out of/halt the liver injury who has been as sick as he was for as long as he was.
We still have the bowel issues to deal with. We don't know if the bowel will work well enough to eventually come off TPN, but with the inflammation to the liver gone, we can soon begin to test the bowel. Since we don't know that the bowel will work, and we don't know if surgery to reconnect the bowel will be successful, and because Peter's liver was so sick for so long, we are for now just inactivating him. I have officially unpacked my bags that have been packed since August for when the transplant call came. We are a little nervous about our decision, but deep inside it seems right. Peter acts like he feels the best he has ever felt. He looks good and labs are good. We continue to pray and we thank God every day for his happy little self.
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2 comments:
Hi,
My family and I have been checking on your blog for the past few months, and were so excited to see this post. Our daughter Ellie is on Omegaven and spent the first 8 months of her life at CHB. Congratulations on getting off the list. That is such a huge step in this marathon that we run with these kids.
Congratulations again,
Abby Brogan
Eleanorbrogan.blogspot.com
Congratulations on all the improvements! Such good news. Omegaven has helped my son Connor immensely! His liver is now healthy despite being TPN dependent still. They are such great docs in Boston. We still have to go every two months for checkups and to obtain more Omegaven from them! Congrats and Good luck!
Erin Maruska
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