Friday, May 26, 2017

Good news... with whiplash

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

Just another day in the life..

So I realize it's probably been a while since you guys have gotten an update this way, but that just means that up until now things have been relatively quiet. We've had your typical illnesses: colds, flu, stomach virus, and so on, but nothing major happening. Until today. We've been seeing a liver specialist for Parker since transplant. Most of you remember that when transplant time came, we were shipped out to Philadelphia due to Parker's liver condition. The surgeon here wasn't comfortable with operating on Parker without a liver specialist first evaluating him and deciding if he needed a dual liver/kidney transplant, and then she also wanted a liver specialist in the operating room with her. The problem there was that there was no qualified hepatologist in our area at the time. 

Dr. Arias, our new hepatologist at CHNOLA, is a pretty amazing doctor and he quickly made it up the ranks to one of our favorites. He's that doctor that gives you his contact information and asks you to e-mail him anytime. And when you do e-mail him, he calls you back personally within 24 hours. After today's appointment he went as far as to give us his cell phone number and asked us to call/text him with any questions about labs or ultrasound. His bedside manner with Parker is awesome and he explains things to us in terms we understand. He has trained at some of the top facilities in our nation so he is knowledgeable, but he still tells us like it is. So when he called recently asking to see us immediately we knew something was up.

 Parker has always had portal hypertension, it comes hand-in-hand with his diagnosis of ARPKD/CHF (Autosomal Recessive Polycystic Kidney Disease/ Congenital Hepatic Fibrosis of the Liver) Portal hypertension means that the blood cannot flow through his liver properly because his liver is hardened. When the blood cannot flow properly, it backs up into the spleen. We've monitored it closely with blood work and ultrasounds regularly, and while his labs have always been slightly off, it was nothing to draw concern about. His spleen has always been enlarged, due to blood flow backing up, but we were told his spleen wasn't large enough to worry about yet. The problem is that any little thing can cause more damage, including infections and viruses, and Parker spends a good bit of time sick because of his immunosuppression. Throughout March and April we fought Norovirus- a particularly ugly stomach virus, for over 30 days. Unfortunately this virus did a number on his liver. Since then, his platelets have dropped significantly, his liver enzymes (AST,  ALT,  INR) are all elevated, and his spleen has grown a good bit, and the blood flow in his veins are showing resistence now, which is a new occurance. Since it's been well over a month since our last hospital stay, all of these things should have fallen back to their "norm" by now, yet they haven't. They've progressively declined further, and that progression has them worried. The team here believes it's time to make a plan. Things aren't emergent, but we need to tackle this before it becomes an emergent situation. It's better for him if the evaluations and procedures are done while he is well. The procedure will be less invasive that way, and recovery much easier. However, the plan that we think will be best for him is not something that CHNOLA or any surrounding hospital has the technology or the training to do. 

Parker will need what is called a Distal Splenorenal shunt- IF he is a candidate. Essentially what this will do is bypass the portal vein that is backing things up from his liver to his spleen. During surgery they detach the splenal vein from the portal vein and reattach the splenal vein to the renal vein. This allows blood flow to go around the liver, relieving pressure from the swollen veins in his stomach and esophagus, without taking blood flow away from the liver. It also helps to control bleeding and clotting issues that portal hypertension can cause. 

In order to find out if Parker is a candidate for the procedure, and exactly how soon he will need it, there are a slew of tests and procedures that need to be done. Once again, CHNOLA doesn't have the machinery, technology, or training to even evaluate him for this procedure. In fact, it doesn't exist in the state from what we are told. So off to Philadelphia we go again in the next month or two. Dr. Rand's team at CHOP performs these tests almost once a week, so they are very well versed.

Our doctors here will begin coordinating information with the teams at CHOP on Monday. We expect it to take a while for the teams to consult, formulate a plan, and obtain insurance approval. Insurance approval will likely take the longest as it's not easy getting approval to cross state lines, and coverage drastically decreases when you do that. The transplant team at CHOP will also want to see Parker at this time since we are nearly 4 years out from transplant, so we have been told to expect to be there for at least a week. At this time there are still a lot of unknowns, but we know that we will be in the best hands possible at CHOP. The care there is truly unbelievable! In the meantime, please keep us in your prayers, specifically that the team comes up with the best plan available for Parker. 

Monday, January 2, 2017

ARPKD and what it means for the future of our family..

As most of you know, at 30 weeks gestation Jason and I received the devastating news that our first pregnancy was not going according to plan. Parker was diagnosed via ultrasound with Autosomal Recessive Polycystic Kidney Disease. It's a mouth-full right?

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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Santa came for ME?!

The He He The The This year has by far been one of the best Christmas' ever! Parker truly got into the Christmas spirit and was obsessed with all things related. He was adamant that our Christmas tree had to have a star topper. Santa Clause absolutely NEEDED cookies and milk. The reindeer would be so hungry after their long journey, that carrots were the only thing that could fill their bellies. We couldn't see enough Christmas lights and always needed to see "another one". It's the first year that he wasn't too sick or too anxious to enjoy opening his presents and playing with them. We had an amazing holiday and we hope you and your family did too!

Halloween 2016