Meeting the person who holds your child's life in their hands..

Today we met the transplant surgeon. When shaking the hand of the single person who will hold your child's life in their hands, you have mixed feelings. Do you get in their good graces, or threaten their life if they let anything happen to your baby? It's a tough decision. Today, our surgeon made that decision easy. We immediately felt comfortable with her.

Overall she is happy with where Parker is. We are going to do a few tests on his bladder, just to be safe. His bladder has never been used. Yes, I said never. She is consulting with Dr. Roth, who we love! Dr. Roth is the only surgeon who has ever operated on Parker. He performed Parker's nephrectomy and hydrocele repair, and Parker did really well after both of those. She will get his opinion in which tests to perform before the surgery and he may very well be in the operating room for the transplant as well. This makes us much more comfortable. We like familiar faces!

These bladder tests prior to transplant will tell us a lot. They will determine if he needs a bladder augmentation. They will determine if he will need to be catheterized for a few months after transplant. They will determine if he will need a drain after transplant. They will determine exactly how much his bladder can hold, and how much it will need to stretch.

She informed us that Children's uses a steroid free protocol. Instead, Parker will get three doses of strong immunosuppressants through a central line while we are inpatient. One of these doses will be immediately before the surgery. Each treatment will run over a course of about 6 hours. They chose this method because of the long term affects of steroids on children. I, for one, am happy about this. Not only for the long term reasons, but also because a child with "roid rage" after a major surgery doesn't sound pleasant.

She told us that since Parker is so young and extremely active-which she got to see first hand today- that she plans to keep him sedated for the first few days. I like this plan. Hopefully he will rest through the worst of the pain and recovering. I know that in the NICU, he tried pulling out every tube and wire possible, so I can only imagine that it will be much more difficult to control him now.

We talked about pain management and making sure that it is kept under control. It is a catch 22 with pain medicine, though. While it keeps Parker comfortable, it will also keep his bowels from waking up. This could lead to extreme constipation which is painful in itself. She agreed that he would need some sort of stool softener to make sure that he doesn't get "backed up". He won't be eating for the first few days, so hopefully this will help with things as well. She did say that she expected him to lose some weight. Since he is on dialysis, a lot of his weight is fluid related. When our new super kidney starts working it will be in over drive, so all of this fluid weight will disappear.

We asked her about the possibility of placing a g-tube during surgery. A g-tube is a feeding tube that is placed on his belly and goes directly into his stomach. This will be critical in the beginning to ensure that Parker can get enough fluid intake to keep his kidney happy, and to make sure he is getting his rejection medicine. When he is able to take the correct amount of fluid and all of his medicine by mouth for a little while, then we can discuss removing it. She was okay with the thought of this and said she would present it to the committee when they meet on Wednesday. I am eager to see my babies face without tubes and tape again!

We know that after transplant he will be on a lot of medicine, two of which will be extremely critical. These are his anti rejection medicines, Prograf and Cellcept. These medicines have to be given exactly 12 hours apart every day. The time frame is extremely crucial for these. He will also have labs 2-3 times a week for the first few months, as well as transplant clinic once a week. So the first few months will be extremely hectic.

Overall, we are at ease after our meeting today. We had a lot of questions answered today and are happy with the way things are going. She did mention that she has been doing all of the pediatric transplants. They have been doing 2-3 living donor transplants a week, so she's pretty experienced.


Here are a few new pictures of our big guy..












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Transplant timeline

Wednesday, April 10, 2013- Children's Hospital's transplant committee approved Parker to begin donor testing.

Friday, April 19, 2013- Patty received the phone call from Tulane Hospital for her first appointment to be scheduled.

Friday, April 26, 2013- Patty received transplant packet in the mail.

Wednesday, May 1, 2013- Patty had her first GFR test done to determine her kidney function.

Friday, May 3, 2013- Patty found out that her GFR test didn't get results and that she would have to redo the test.

Tuesday, May 7, 2013- Patty's blood work was drawn to do the cross match.

Wednesday, May 8, 2013- Parker's blood work was drawn to do the cross match. The cross match was sent off for testing. Parker met with Dr. Viascari for the second time.

Thursday, May 9, 2013- Patty went to Tulane for her second GFR test.

Tuesday, May 14, 2014- The cross match came back negative.

Thursday, May 16, 2013- The kidney function test came back great.

Thursday, May 23, 2013- Patty had chest x-ray, EKG, and CT scan done. She also met with the nephrologists, social worker, psychologists, and surgeons.

Friday, May 31, 2013- The transplant committee at Tulane University Hospital approved Patty to be Parker's donor!

Wednesday, June 12, 2013- the transplant committee at Children's Hospital will meet to approve everything. Once this happens, they will book the operating rooms and surgeons.


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It's official, We have a donor!

For the past few weeks, a very generous woman has been going through all of the testing to be Parker's donor. I struggled with posting the details throughout the process, because, to be honest, I got pretty freaked out. We have worked so hard to get to this point. It has literally been our main focus for two years now, but when the time came to start the process, I got scared shitless.

Today, however, I felt a huge sigh of relief. I know it will be hard. I know it will be scary. But, I know we will get through this. My baby will have a second chance at life. One where there is no tube coming from his belly! One where machines aren't keeping him alive. One where he can take an actual bath, instead of being wiped down with a soapy towel. All because of a very special woman.

Patty Martin, what you are giving us is indescribable, and I will never be able to thank you enough. You have just gained another family, whether you know it or not. It takes a very selfless person to do what you are doing.

There will be many more cry sessions like today, I promise!

Bye bye tubes!



Thank you, thank you, thank you!!


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An interesting morning..

This morning around 6:00 Parker's machine began alarming. I stumbled out of bed and nearly slept walk to his room. This is a nightly occurrence- actually multiple times a night- for us so I believe my body is programmed to go through the motions. When I got to the machine, it read "low drain volume". This usually means he has the line kinked and fluid can't pass through. So I go to pick him up and EVERYTHING is soaking wet. My first thought is "Dammit he pulled his feeding tube out". By this time I am wide awake. I turn the lights on and start searching for the problem. His feeding tube is still in. It is not leaking or busted. Maybe he just puked? So, I take him out and strip the bedding off. I go to change him and start examining his dialysis catheter to ensure its in one piece . Sure enough, there is a big hole in it, which can be extremely dangerous. We immediately get sterile gauze and tape and cover the exposed area. We call the on call nurses to tell them what's going on, pack all of our bags, and head to Children's Hospital.

Luckily we were able to repair the existing catheter, instead of requiring surgery to replace it with a new one. They took a specimen to check his cell count. If his cell count were high, infection was already growing. In that case, we would be admitted.

There are angels watching over us as always, though. His cell count came back at 9. PERFECT. So as we speak, I am on the interstate-in the passenger seat- with my big boy in the back seat and we are heading home! We will do a few days of antibiotics in his dialysis just to be safe, but honesty we did not expect, nor could we have wished for a better outcome.


My little buddy always has to keep us on our toes.

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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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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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