Tuesday, December 10, 2013

Two month Kidney-versary

Today makes exactly two months since my son received the most amazing gift ever, his new super kidney. Somehow, though, it feels like it's been 2 years. So much has happened in such a short period of time that I don't think we've stopped to remember how recent it really was. We left Philly on November 20th and made the long trek back home in record time. Honestly we were beyond ready to be home, and it was really starting to take a toll on us. Philadelphia is a great city, and we enjoyed the experience, but there really is no place like home. We got out of there just in time, too, because the snow has officially started. Just today they received 4-6 inches, and lets be honest, neither Jason or I know how to drive in that.

As soon as we got home we met with his new transplant team in New Orleans, and started adjusting to their protocol. They do quite a few things different here than our team in Philadelphia did. For instance, in Philadelphia, or goal for his tac level (the level of rejection medicine in his blood) was always between 8 and 10. Here in New Orleans, however, they like to keep the tac level between 10 and 15 during the first three months. This alone has been a lot for us to get used to. His tac level is critical- too little can allow the kidney to reject, and too much can be toxic. When his tac level came back at 11.4 last week, and they didn't lower his dosage, Jason and I were both crawling out of our skin. Another thing that our New Orleans team does different is administering a third prophylactic antibiotic called Valcyte. Valcyte is used to protect Parker against an infection called CMV. Once you contract CMV your body will retain the infection for life, which makes it extremely difficult to find someone who is CMV negative. This is why our team was extremely shocked that Parker's donor, Patty, was CMV negative. They said the odds of that are really rare. Our team in Philadelphia decided that since Patty was negative, there was no need to give the antibiotic, because he was not exposed directly to the infection from her kidney. The team in New Orleans, however, prefers to be proactive and administer the antibiotic for 6 months just to be sure. It's not a very tasty medicine, either, so Parker is still getting used to it. Right now we have appointments twice a week- one for clinic in New Orleans and one for labs in Thibodaux, but starting next month we will go to New Orleans twice a month, and do labs here in town twice a month. Basically it means that we will have one appointment a week. It will be nice for things to start slowing down a bit, especially since I will be going back to work.

 Last week we finally got all of our paperwork and evaluations completed to start our therapy sessions again. Parker has progressed so much since surgery that even his speech and occupational therapists were shocked. He will actually put food in his mouth now, which he would never do before. Actually, before surgery he would scream bloody murder if you came near him with food. We are still working with him to use a spoon and chew, but these are aversions that will take time and patience. He will use sign language to communicate several words now, such as "please", "thank you", "more", "all done", and "down". His comprehension and motor skills are above his age level already. For example, when questioned he can identify his shapes.

Parker has also come a long way with some of his previous anxieties. He is no longer afraid of water or grass, which was a very big issue for him before. He was afraid to walk through doorway thresholds, up stairs, or stand alone in an elevator. Now, he does all of those as long as he is holding on to something or someone. He used to run away from the dogs, all the while screaming out of fear. The tables have turned and now they run from him out of fear.

So far all of Parker's labs have been amazing. In the words of his transplant team in New Orleans, "his kidney is working perfectly". We truly could not have asked for anything better, and know how blessed we really are. We are extremely lucky that we haven't had an major complications along the way. If you don't see as many posts as before, we apologize, but we are out there living life now that we don't have a dialysis machine holding us back! It is so awesome!


  1. Hello! My name is Evelyn and found this blog via Google when I searched for ARPKD. Our little daughter was born with the genetic disease 8/24/12. We stayed at the hospital for two months before she passed away for good in my arms. I'm from Sweden and have just been in contact with two other families who have suffered the same fate with this disease! I read that your little boy survived the incredibly long road to a transplant and now also received a new kidney! Was so glad that it actually can go well despite many indications to the contrary.
    I wish you all the best and hope your little boy is doing well and that the new kidney is working fine! Many hugs / Evelyn from Sweden

  2. Hi Evelyn, I am so sorry to hear of your daughters passing. This disease is nasty and cruel. We have been very fortunate with Parker's health considering the circumstances. I am glad that you found our blog and that we could give the slightest bit of hope. I will keep your family in our prayers.


  3. Hello! ARPKD's an incredibly rare genetic disorder which I understand, neither I nor my husband had heard of it before our girl was born with it. Now I am pregnant again and may find that your baby is healthy from ARPKD. =) So, our little daughter Linnea who died of the consequences of ARPKD to become big sister in April. Have you had more children after Parker?
    When I saw a picture of your son it was like to see our daughter! Kidneys that took such a place in the stomach.

    Now I have not had time to read your entire blog and I have of course lots of questions. But I am who I said was very happy for you and that little Parker doing well today! I will keep reading the blog and follow your journey! / Evelyn