Tuesday, May 22, 2018
Monday, May 21, 2018
Monday, May 14, 2018
Saturday, April 7, 2018
Most of you know by now that if I'm writing a new blog post, it's usually not a good sign. When things are simple, it's easy to quickly post to FB and keep people updated. But when things get complicated I need a little more room to explain.
Since Parker's last stomach virus at this time last year, things have been....off. Some of his blood work never really bounced back, including his platelets, hemoglobin, and hematocrit. Just recently we started having more issues. No matter how much he ate, he never gained weight. He had unexplained diarrhea, which just recently led to malabsorption. In the last month or so, labs got worse, so we started running more and more tests. We've done umpteen stomach ultrasounds, over $2,000 worth of stool studies, and countless labs with no answers. Just last week his team decided to re-test him for EBV, BK, and CMV again. These are tests they do at least once a year because of how serious they can be for transplant patients and they have always been negative before, so I thought.. okay just ruling one more thing out, no worries.
Yeah, not so much.
Yesterday Parker's team called to let us know that his blood work came back and it tested positive for CMV virus or Cytomegalovirus. We were quite shocked and scared to hear this. Prior to transplant one of the requirements was that Patty- our hero- be tested for CMV and the doctors were mind blown to find that she was CMV negative. This was a HUGE deal because had she been CMV+ Parker would have been at a much higher risk of contracting the virus, as her kidney could have transmitted it to him. That is actually the most common way that transplant patients become infected with this virus. For kids like Parker, who have a CMV- kidney, it's actually quite rare for them to contract this virus over 180 days after transplant, so this means that at some point in time recently he has likely come in contact with someone who actively carried the virus.
While all of this probably just sounds minor up until this point, this is where I'll get VERY real with you. Most times I sugar coat things as to not panic everyone, but I think it's time some people get a true glimpse at our life. Maybe then it will sink in when I say that a simple virus for you is not the same for my kid. This is why we stay in our bubble, and this is why I preach about staying away when you are sick, and having respect for others who aren't as fortunate as you. We are EXTREMELY lucky that we caught this when we did. As of now, the levels in his blood are relatively low (435) even though they should be undetectable. BUT, the problem is that this virus has also caused his WBC and ANC levels to be so extremely low that he doesn't really have an immune system to speak of right now. At this point, the doctors are very concerned with whether or not he will be able to kick this virus on his own, even with the help of medicine. They are actually talking about discontinuing one of his daily anti-rejection medicines in an effort to help his immune system build up, and if you know anything about organ transplantation, you know that this is something they never do. It's a HUGE deal and BIG risk to his kidney. Without those medicines, his kidney is more susceptible to rejection. REJECTION!
The reason his team is even considering being this aggressive is because this virus is extremely dangerous to post-transplant patients. For people with compromised immunity, especially due to organ transplantation, a severe case of CMV infection can be fatal. Like I said earlier in this post, we are fortunate that his levels are currently low, however, if his body can't fight this off and those levels continue to increase, things could get much worse in time. The concern in their voices when they called to let us know about this, has us extremely worried right now.
We spent most of the day yesterday on the phone trying to track down a very strong, specialty anti-viral medication, which he will have to take for a minimum of 30 days and until the levels in his blood are undetectable again. Not a single pharmacy in Houma had it, and only one pharmacy in New Orleans could get it for today. So this morning we drove out to NOLA to pick this up and he got his very first dose tonight. Hopefully we don't experience many of the side effects, because that list isn't too pretty. We go to clinic on Tuesday to get more labs, see our transplant team, and discuss the plan of action from here on out. We are keeping our fingers crossed that we are able to come home that night, and that maybe his levels will have magically decreased on their own. Yes, I know that's just wishful thinking. So in the meantime, if you could say extra prayers for Parker, and maybe Dad and I's sanity too that would be much appreciated! We will keep everyone updated as we find out more.
Friday, May 26, 2017
The last two weeks have been nothing short of an adrenaline junkies roller coaster ride. In March we were told that Parker's numbers were stable enough that at this rate of progesssion, we had years before needing to to take action. Two weeks later, Parker started with the beginnings of the stomach virus. Fast forward to May, and the news we got was heart breaking. In a months time, a single virus forced his portal hypertension to decline significantly. We were told that a specialist at CHOP needed to review Parker's file and evaluate him for a procedure. For a very major procedure that we thought we had years to deal with. Yesterday we spoke with the renal transplant team at CHOP, and our appointment dates were set for July 18th. We finally let it settle in, and accept the fact that this is our fate. Today I spoke with Dr. Arias, our hepatologist here in New Orleans. He and Dr. Rand had the opportunity to spend a lengthy time consulting and reviewing Parker's records. After doing so, Dr. Rand has decided that Parker does not need to be seen or evaluated in Philadelphia on July 18th. She feels that we are not yet critical and that Parker needs to grow some more before a surgery of that capacity. Especially being post-transplant. The arteries that they would be redirecting have incurred a lot of trauma, especially during transplant. They need time to heal and settle before being cut into again. She also believes that there is still the possibility that his body could recover and numbers could improve the further we get away from the norovirus. She advised that at this time she would not do anything different than we are doing now. The plan is to continue monitoring every 6-8 weeks with blood work and ultrasounds, and to eventually get a CT angiogram locally to get a better look at things. There's no definitive timeline as to when we will need to take action, or what the plan of action will be at that time. We are extremely grateful that they feel Parker is stable at this time, and that surgery is unnecessary, but the whiplash from the last few weeks and the unknowns have us pretty wrung out. Thank you everyone for all of the prayer! We appreciate each and every one of them. We will keep everyone updated as we can.
Friday, May 19, 2017
Monday, January 2, 2017
When Parker was born, and eventually transferred to Children's Hospital, we met with a geneticist. She ran extensive tests on Parker and thoroughly explained the details of ARPKD to us (mostly in terminology that we didn't understand). The odds of this happening to us again were likely a 1/4 chance, but since Parker's results weren't straight forward, Jason and I needed to be tested as well. At the time that didn't mean much to us. We were fighting day and night for Parker, so the distant future wasn't something we could concern ourselves with at the time. Not to mention, these tests were pretty costly. Our main priority was, and still is Parker's health and well-being, but he's 5 now and pretty stable, so we've been discussing expanding our family more and more. This Summer we finally moved forward with getting our parental genetic testing completed, and the odds were confirmed. Any child that Jason and I conceive would have a 1/4 chance of actively fighting ARPKD. We won the genetic lottery, right? We are in contact with many ARPKD and kidney related families. And we wholeheartedly respect each families choice of how they expanded their family, but for US we just can't see knowingly risking that with another child. So this new information, which we were sort of prepared for, has kind of thrown us for a loop on IF or HOW we would expand our family. The only conclusion that we can both agree on is adoption.
Adoption, however, is probably the most complicated thing I have ever tried to research. I mean I'm pretty sure that this could legitimately be a chapter in a college level Quantum Physics class. There is open adoption or closed adoption. There is domestic adoption and international adoption. There is the foster system, independent adoption, adoption agencies, and the crazy people on Craigslist trying to scam you out of your entire savings account. We have been researching this for 2 years now and are no closer to understanding what is best for our family, emotionally and financially, than we were when we started. We aren't even certain that there is an adoption route that is both emotionally and financially right for our family, but it's something we are determined to find out.
What we are asking of you guys is if you have had a personal adoption experience, know someone who has had a personal adoption experience, work in a field that gives you hands-on experience with adoption, know someone who works in a field with hands on adoption experience, know a church or social worker who has a program that can point us in the right direction, etc.. anything at all that will help us, please share your stories with us. We want to know the good, the bad, and the ugly. We want to hear pros and cons of every aspect. At this point, taking out a billboard sounds like the least complicated option (j/k...), so we appreciate all of the help!
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