Peter had been waiting many years on Reece's Rainbow - without one inquiry. His medical needs seemed to have scared people off, and Andrea told me that his only hope of a family committing to him was a full grant. At that time Peter had a few thousand dollars in his grant fund. I challenged Lily's readers to help get Peter a full grant of $20,000 in the hopes of attracting a family. We ran the Pure Love Giveaway...and in five days a family stepped forward to claim him. Lily's readers raised over $15,000 for Peter, and this past January the Kehm family brought him home from Eastern Europe.
I can't go into details here, but it was nothing short of a MIRACLE that the Kehm's were able to rescue Peter. He almost slipped through their hands while they were in his country, and we spent several tear-filled days wondering if he was going to remain an orphan forever.
|Peter's Gotcha Day|
Tonight Peter needs another miracle. I'm borrowing from his CaringBridge page here (written by Christie Taylor) to let you know what we need to pray for..
July 31st, 2012, Julie took Peter to TCH ER for possible seizure activity.
Since that time, none of us could have envisioned all that would unfold.
Peter has had an EEG and has been confirmed he is having seizures. He is now on Keppra. A few months ago the endocrinologist ordered an MRI of Peter's brain to check his pituitary gland to see if it, maybe, it were affecting his nystagmus too.
Well, the neurologists read the MRI this week and learned that Peter has amino acid build up in/on his brain forming plaques (I believe) and that pointed to a possible metabolic disorder. Blood tests and genetics testing ensued and it was discovered his ammonia levels were INCREDIBLY high. Reaching levels of 190. Normal levels are 22-44.
This led to testing of his liver via ultrasound--this ultrasound revealed some alarming and unexpected news. The vascular distribution of his liver is so uncommon anatomically that not one doctor at TCH has ever seen anything like it. Basically, as Julie said on FB, "Peter has a vessel that is supposed to take his dirty blood to his liver so it can be cleaned of ammonia and urea, he does have both of those vessels. One does its job, the other goes straight back to a main vein that carries the dirty blood to his heart. His ammonia level got up to 190. Normal is 22-44. He has had some other liver panels come back off as well and they want to do a liver biopsy. When they plan to do this I dont know, so I am just sitting up here with him until they decided what to do. And I dont know how they fix this. He is on meds for seizures, and a med to bring his ammonia down."
As it seems right now, a biopsy will be done at some point in the very near future (but not over the weekend). Peter is puking with every feeding. He is lethargic. He has been through 2 doses of lactulose (the med to bring the ammonia down) and it has only gone from 190 to 140. This is not good and not what we were hoping for to say the least. As it is right now, Julie has no definitive answers. Cam is across the world working and she is going it alone at the hospital.
I am not sure if the doctors are still thinking metabolic disorder coupled with seizures OR if this is seizures coupled with a congenital liver defect.
I will post more as I know what is going on. Keep the family lifted up. They've been hit so hard lately. Thank you, and you can leave cards for Peter just like we did for Kai at http://www.texaschildrens.org/Support-a-Patient/Greeting-Cards/
By way of explanation- last month Julie's son Kai developed a rare and life threatening reaction to a medication he was taking. Julie and Kai spent weeks in the hospital, and at that time little Kai was fighting for his life. It is unthinkable that just a few short weeks later Peter is now doing the same.
I am asking Lily's readers to rally for Peter the same way you did in February 2011. Will you bombard Heaven with prayer for Peter right now? And will you flood Peter and the Kehm family with online cards (link just above) letting them know we are lifting him up in prayer?
I am determined to go meet my nephew one day, and tell him in person how many people loved him home.
So many miracles have happened for Peter...will you pray with me for one more?