Wednesday, March 27, 2013

Learning all about transplant..

Today was a very informational day. We only met with the head of nephrology today, Dr. Veheskari. He cleared us to begin the transplant "process", but there is a long laundry list of things that need to be done before the transplant committee deems him eligible for surgery.

We have to first meet the surgeon. She will examine Parker to determine if his current size and health are ready for transplant. One concern that was mentioned is the size of his liver, which is common for PKD patients. He said that with his liver being larger than normal, it may make things more cramped and difficult. If this is the case, he will have to grow a little more length wise before the adult kidney would fit. What I did learn today, though, is that the adult kidney will eventually shrink to fit Parker and grow with him. I did not realize this, and think that it is extremely cool. After the surgeon examines Parker, if she decides that he is ready, we have to do the following: an echo cardiogram of his heart, tissue sampling, blood work, and possibly a bladder study to see how much volume his bladder can hold- since it has never really been used.

Jason and I have to meet with a psychologist. This is to determine that Parker is in a stable, compliant home. Basically they have to make sure that once he is transplanted we will take care of him and his new kidney the best that we can. The government requires this to ensure that viable organs are not wasted. I know with all my heart that this is not a problem for us. We fight tooth and nail to make sure Parker's care is nothing but the best. We also have to meet with a social worker to discuss the insurance and financial aspect of everything.

In the meantime, we have to make sure he is up to date on all of his vaccines, especially hepatitis B and MMR. They may add the Hepatitis A shot, but at this point that's not clear. We have to make a dental appointment and make sure that any dental work that needs to be done is done now. I don't think this will be an issue. He's young and doesn't eat food quite yet.

After ALL of this, the transplant committee will meet to discuss his case and determine if he is approved for surgery. All in all today was a good day. We learned a lot, and now know what needs to be done in order to get this ball rolling.

We were watching Mickey while waiting to see the doctor.

As you can tell, Parker is worn out from his early morning. It did not take long for him to crash out.

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Our first big appointment

We are on our way to meet with the transplant team for the first time. Eek! So exciting and yet nerve racking at the same time. In true Porche fashion we are late, so at this point we are hoping they will even see us. Parker had to be hooked up to his machine much earlier than usual in order for us to leave in time. He usually fights his sleep until 11 o'clock every night. Last night, miraculously, he went to sleep at 9:30. A few alarms during the night extended his treatment and caused us to run a little late this morning. We are all dressed up and ready. This morning Parker was 10.45 kg, which is over the required weight for surgery. We are hoping we can get this process started and begin testing donors as soon as possible. I will post again after we leave. So keep us in your prayers that they agree to see us, even though we are late, and that we get good news!

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Tuesday, March 5, 2013

Time flies..

I'm not even sure where I should begin. So much has happened in the last few months since my last post.
The holidays have come and gone. Thanksgiving was spent with family celebrating and eating yummy food. Christmas, however, was germ stricken. Parker started getting sick around the 19th of December and eventually ended up in the hospital. Not until we opened our gifts, though. Since we were a little under the weather, we spent Christmas Day at home, just us. It was actually quite relaxing. I'm thinking of starting this as our new tradition!

Just a few days after Christmas, Parker's cough took a turn for the worse. We found out that it was actually RSV. His oxygen levels were dipping into the 80's and we ended up having to spend a few days in the hospital with a nasal cannula, just to give him an extra boost to breathe.

While he was having such a hard time breathing, we had an even harder time getting him to eat. When he would suck the bottle, he was getting even less oxygen. So, we decided to put an NG feeding tube in to give him some relief.

He tolerated the feeding tube really well, so we left it in. At this point, we were still getting grief from his kidney team to get more calories in him, so this tube made his renal team happy.

Just a few weeks later, Parker ended up getting peritonitis- infection of the dialysis area. This means another hospital stay with antibiotics via dialysis.

While we were in the hospital, Parker learned all kinds of new tricks. He learned to pull himself to stand; therefore, we had to raise the rails all the way up on his crib-or "prison" like we call it.

He learned to clap. He now claps along to music and especially loves clapping for himself. Even when he is being fussed.

Once we were home and germ free for a while, his weight picked up significantly. He is now a whopping 10 kg-the required weight for transplant! We meet with the head transplant nephrologist, Dr. Veheskari on March 27th. Hopefully, he will get the ball rolling on testing.

We found out today that his spleen is enlarged. We knew that his liver and spleen would be involved eventually. It's actually part of this disease called CHF-Chronic Hepatic Fibrosis- that comes with ARPKD. The trick is they cannot tell you when the liver will deteriorate, or how bad it will be. Each case is different. The good news is that Parker's liver looks great other than being really big. We just have to monitor his spleen for now and see how fast it progresses.

Overall, we are doing really well. He is happy, usually healthy, and growing-both physically and developmentally. His therapists are proud of his progress and we are beyond ecstatic. He crawls, scoots, pulls up on furniture, and walks around holding onto the furniture.

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