Home sweet home!

We are so very, VERY glad to be home. The procedure this morning started much later than we anticipated.  We got there for 6:15 this morning and they didn’t take Parker back until 10:00. Thankfully this time around they gave him some happy juice before taking him to the back and he handled things much better. Two hours later, the nurse came out to take us to him, and while he was fine health wise, he was not coming out of the anesthesia well. He experienced a form of post-operative delirium which took us a while to get him out of. He was not a happy camper and he let everyone know about it both verbally and physically. Mom and dad definitely didn’t like this one bit; however, I’m happy to report that he’s back to his crazy, silly self and doesn’t remember a second of it. Now we wait for the doctors to review his results and make a plan for him.

A plan.... with a little more waiting

So today we met the team at Texas Children’s and let me just say... WOW! When you walk into a building and are impressed just by the waiting area and clinic organization, that speaks volumes. The entire place is efficient and organized! We spent a good bit of time talking with Dr. Himes today, and we officially have a plan of action. They asked us to stay one more night so that we can get an MRV done to take a look at the vessels in his belly to determine what type of surgical shunt he is a candidate for. This is a test that we cannot get done in New Orleans as they do not have the machines we need for this there. So tomorrow morning we will report in to the outpatient unit for 6:15 am, and he will be put under sedation to have this test done. 

Today we found out that essentially Parker’s liver itself functions just fine according to all of the tests that we have done. His portal hypertension, however, is the problem we need a solution for. Parker’s liver disease is Congenital Hepatic Fibrosis of the liver. Fibrosis basically just means hardened. His liver is SO hard that the blood cannot flow through the portal vein (which goes through the middle of the liver back to the heart). Instead of the blood flowing freely, the liver is constricting the flow, and the blood is backing up and pooling into the spleen. This is all stuff that we knew already, but to hear that his liver is functioning great otherwise and that his bile ducts are in good condition, makes us feel much better. His bile ducts are dilated but they are not misshapen, therefore the bile is flowing well and he is not at increased risk for cholongitis, which is a major infection of the bile ducts. The doctor did however confirm what we already knew. One day, Parker will need a liver transplant. Things will continue to progress to that point. The good news is that he feels that today is not that day. 

So far our plan of action is to complete the MRV tomorrow. The liver doctors, surgeons, and radiologists will the convene a meeting in the coming days once they have the results to determine which shunt is the best option for him. We will come back here after all of that to meet with the entire team, including surgeons and radiologists to discuss the plan that they choose. During the same visit, Dr Himes will perform an outpatient Endoscopy under anesthesia to get a better look at the esophageal varices that they found in the MRCP last week. He will also treat these varices in order to prevent any complications that could arise due to them. Esophageal varices are vessels in the esophagus where there is increased pressure. Basically the blood flow in these vessels is restricted due to the hardened liver, so the vessels are enlarged and full. If the pressure becomes too much, and the varices aren’t treated, those vessels could rupture causing internal bleeding. This could be very dangerous and life threatening, because sometimes the bleeding can not be stopped. 

Once the doctors have treated all varices and come up with a plan for the best shunt operation for Parker, we will essentially continue to wait. From our understanding, the shunt will not be necesssry until his platelet counts reach the 10s-20s. Right now, his platelet count is holding steady around 45. The concern, and reason we are formulating a plan now, is that Parker’s numbers drop dramatically each time. Last year at this time his platelets went from 120 to 75. Just a few months ago his platelet count went from 75-45. If he drops that dramatically this time, we are absolutely in range to need the shunt immediately. So the entire team will be on the same page so that when the time comes to execute the plan, we all know what to do next. 

So, yes we did get answers today. And yes we have a plan, which makes us feel MUCH better. However there is still a lot to do. 

Thank you to everyone who has helped at home and picked up our slack at work while we are on this journey with Parker. We truly appreciate all of it! Also thanks to everyone who has checked in for updates and sent prayers/thoughts/well wishes! It means the world to us! 

Texas, here we come...

So as most of you know, Parker’s labs the last few weeks haven't been so hot. His kidney function still looks great; however, his immune system left the building, and another major concern has been the fact that all of his blood counts are super low. Platelets, hemoglobin, hematocrit, white blood cell counts and red blood cell counts aren't even close to the normal level. They are even lower now than before the CMV diagnosis.

On Tuesday of this week, we were called into an emergency transplant clinic appointment where Jason and I planned to go in with our guns blazing. We felt like the big picture was being pushed aside for all of these "maybe" situations. For a year now we have been dancing around the fact that his liver disease has been progressing. We completely understand and respect that his team is being thorough, and ruling out all of the minor causes before doing any invasive procedures, but we were ready for answers. We have always known, and have been told, that CHNOLA cannot accommodate Parker's liver needs now that we have progressed to this point, as they do not have the technology or expertise here for the proper testing and procedures that he will need. So before going into this appointment, we researched the best hospitals for us to seek second opinions on, not only based on their level of expertise, but also what was best for our family. We had our top 3 picks ready to discuss with them, and ask their opinions on. Well to our surprise, they beat us to the punch. Our transplant doctor quickly came in and said the same things we had been thinking. He agreed that we could be tip-toeing around the bigger picture AND he began recommending to us one of the hospitals already in our Top 3! It was like the heavens had opened and everything aligned. 

On Wednesday, Dr. Arias, his liver specialist in New Orleans made the appropriate phone calls to Texas Children's and discussed Parker's case with them. They spent a lengthy amount of time going over everything from the beginning, and Dr. Himes feels like Parker needs to be seen in Texas immediately. By Thursday I was on the phone with Denise, the coordinator, who is amazing! She is about as thorough as they get, and definitely my type of lady. She gets things done and doesn't leave any stone unturned. We got records from all of the necessary fields of expertise who have seen Parker or run tests on Parker, including the Operative Report and Discharge Summary from transplant. We ran insurance approvals and got Parker registered in their system. We also found out which tests that Dr. Himes wants done here in New Orleans before we see him. So while this is all going on, Jason and I thought we had a few weeks to get everything together and done based on what they were telling us. Then today happened, and it's almost like a tornado came through! 

Dr. Arias' nurse called this morning to let us know that we would need to be admitted to have these tests that Dr. Himes wants done and that they would need to be done by Thursday as Dr. Arias would be out of town after that. After several phone calls and e-mails to coordinate things, it is now confirmed that Wednesday night we will be admitted to CHNOLA and Thursday morning Parker will be having an endoscopy and MRCP of his liver done under anesthesia. Next, Denise from Texas Children's called several times to coordinate Parker's appointment, and while originally she thought we had weeks before he could see us due to his schedule, Dr. Himes had other plans. He opened up a new clinic time frame just for Parker, because he wants to see us a week from today. In SEVEN days!! 

So, hopefully by next week we will have lots of answers to our questions. Dr. Himes will be able to tell us, Monday, whether Parker is a candidate for a shunt, which type of shunt he qualifies for, or if he will have to move directly to a liver transplant. Hopefully we will also get answers as to how long we have before any of these actions need to be taken. 

So, as always, we are accepting any good vibes, thoughts, prayers, or whatever you're willing to give. As you can imagine, this is all a lot to process, we are having a bit of de ja vu, and things are moving much faster than we expected. 

Just another ride on this wild roller coaster we call life...

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.