Parker's Fight Against ARPKD: Lots to report..

So the last time I posted, we were going back and forth between the pediatrician and Children's begging for answers. No matter who I talked to, they couldn't find the problem and were quick to say "It's got to be the viral infection". I knew something wasn't right, but I'm a first-time mom and who am I to argue with three different doctors, who are all telling me the same thing? We even tried the reflux theory, which by the way, was a crock! An ER doctor even screwed up by reporting that his labs were normal, when in all actuality, they were dangerously low. Needless to say, because of this ER doctor, a member of our team made several phone calls. These calls reached all the way to the top, and those in charge were made aware of what happened to us. My only hope is that this doesn't happen to someone else. Since then, we have gotten his calcium back up into the normal range and discontinued his magnesium, because it was too high. Thank god, because that one tasted horrible! It smelled like rusty metal, so I couldn't blame him for not wanting to take it.

While we were going through everything with his eating issues, I talked to several kidney moms who had been in my place before. Many of them mentioned that his kidney levels -BUN and Creatinine- could play a factor in his eating and that when their kids' levels were high, they had loss of appetite. So, I pulled out my "Book of Parker" and low and behold his levels were 3-4 times higher than they were when he was chugging food. So, I went in to our next appointment and brought my ammo. As I'm asking the doctor why this is and what could cause it, he decides we need to change his dialysis fill volume. Apparently, we aren't pulling off enough fluid, which is in-turn making Parker feel full. Now, my problem with this situation is that we have several insurance charges a month from Children's, but one alone is over 50,000$! Yes, you heard that right- A MONTH! So his dialysis care should be at it's best at all times. I wasn't happy that I had to be the one to point this out, but as long as things get done to improve his health, I'll keep doing my research. Guess, I'll have to stay on top of them. I'm happy to report that our happy "Monster Man" is back and is eating like a champ most days! We have labs again in a week and if everything is doing good then we don't go back until the end of March! Finally, a break!

At our last clinic appointment, we got to meet with the transplant coordinator nurse. He answered a lot of our questions. Most of the tests needed from Parker for the transplant have already been done. Our hospital doesn't believe in being more invasive than needed;therefore, they will not repeat any tests. This was good news for us. When Parker reaches 8 kilograms, they will allow us to begin testing donors. I am type O blood type and will be tested, but due to blood pressure concerns we aren't sure if this will be an option for us. We found out that the donor has to be between 18-45 years old, type O blood type, and in good health condition. They have to have a good BMI, be up-to-date on dental exams and pap smears. They will need the following tests: an EKG, Kidney CT scan and ultrasound, chest x-rays, 24 hour urine collection, and LOTS of blood drawn. They will have to meet with surgeons, nephrologists, social workers, and a psychiatrist This is to determine how they feel about the surgery and make sure someone isn't being forced into it. For the surgery itself, the donor will be in the hospital for a total of 3 days. Discharge is two days after surgery. The surgery is laproscopic and recovery is 3-6 weeks. Our insurance and Medicare cover all expenses except loss of wages. Living organ donors may take a tax credit up to $10,000 to cover the costs of the donation, including unreimbursed costs of travel to and from the donation site, unreimbursed lodging expenses paid by the donor, and lost wages. There are several other programs that donor's may qualify for, though, such as http://www.livingdonorassistance.org/default.aspx.
All-in-all it was extremely informative. We now know what the next step is for us and have a goal that we are working towards.

Pray that Parker stays stable and we can get to this goal quickly. He is almost 5.5 kilos now, so we only have 2.5 to go until we can start the process!