Adventures in liver land 2015

Aug. 23 2015:

Just a quick update: 

The transplant team rounded this morning. They are going to try to see if they can get an MRI scheduled for today (depends on if they have the ability to put him to sleep last minute on a Sunday). Tomorrow morning they have him scheduled to go down to nuclear medicine for a test to look at how his body is processing solid foods. Tuesday morning they are going to put him under again to do an upper endoscopy to evaluate his esophageal varices. The team has a new theory that Hunter's consistent vomiting may be a problem where his liver and spleen have gotten so big that solid food cannot fit properly into his stomach. We will know if this is the issue on Monday. If so they are planning on not banding any varices on Tuesday and just moving forward with listing him for a transplant. Hunter's labs are stable so this is purely a quality of life issue. Right now they are just trying to weigh the risk between the two. We will not know whether they want to list him or not until Wednesday. Please lift him up in prayers this week as he goes through continued tests.

UPDATE 8/5/15- Hunter had a barium swallow done during his last admission. We received his medical records a few weeks ago which stated that the test showed significant esophageal varices already present. For now the plan is to go return to clinic on Sept. 24th and then move ahead with the scope this fall and go from there. Hunter has been loosing weight and his lab values have increased so Dr. Karpen has ordered weekly labs and height weight checks for now. Hunter has been eating well this week and looks a bit better so we are very hopeful that we will not have to continue weekly labs after this week. We just wanted to update to ask for continued prayers for Hunter and the liver team as they make decisions regarding his health. 
In other news... Hunter's first day of school was yesterday and he absolutely loves his teacher and school. It sounds like he is going to do great!!! 
It has been a year since I have updated this journal. This page was always a great avenue to keep family and friends informed with how hunter is doing. Luckily, we haven't needed to update much for a long while now. I felt the need to write a short update today as this is much easier than replying to multiple emails and messages checking on him. (Not that we don't greatly appreciate all of the continuous love and support- this just makes life easier :) 
Hunter has been having some stomach issues for a while now. The doctors think he originally caught some sort of virus but has had a difficult time recovering from it due to the condition that his liver is in. They went ahead and checked other possibilities to make sure that he didn't have any blockages or immediate issues that could be causing it. Everything came back normal for him. His labs have been a little elevated but all things considered- he is doing well.  

He had clinic with his liver doc a few weeks ago. His liver is showing continued evidence of damage and cirrhosis which has resulted in increased fatigue. He has been a little off colored lately because his bilirubin is increasing again. Dr. Karpen noted that his eyes and skin were both appearing a yellow tint again. No where close to where it has been in the past so hopefully it will return to stable again. He is still showing no signs of fluid build up in his abdomen which is a great thing.  After a short discussion at clinic, we decided it would be best to go ahead and have a his first EGD (upper GI scope) this fall sometime around his birthday. This has always been something that would be a great tool to see how progressed his disease is. Dr. Karpen preferred to wait until his 4th birthday if we could to lower the risk of complications. Therefore we will be returning to clinic on Sept. 10th and the procedure will be scheduled from there. The scope should tell us a lot of information. The doctors will be able to tell if there are any esophageal varices and if so, how many and how bad they are. Esophageal varices are enlarged veins found in the lower part of the esophagus. They are caused by portal hypertension which hunter has had most of his life. The varices can rupture and cause a multitude of problems. (This is the main reason for waiting until he is four. If there are varices present there is a risk of rupturing them during the scope.) Hunter has several issues that have resulted due to portal hypertension, the spider angiomas all over his face, stomach, neck, and chest are also from portal hypertension, so it is highly possible that he will also have some level of varices. If so, Dr. Karpen went over several scenarios of what could happen next: 
1. He could have no signs of varices and nothing will change 
2. There could be minimal small varices that are not of any great risk of bleeding, therefore, nothing will change unless they begin to cause complications. 
3. There will be many large varices which can result in one of two things... 
                   A) They are able to go ahead and band the large varices to prevent bleeding; OR; 
                   B) There are too many varices to band and control and (as Dr Karpen put it) " We will get to have a surprise transplant evaluation"  

As scary as this may be to us- we trust Dr. Karpen and know that he will always make the right decisions regarding Hunter's health. 
 While Hunter was admitted this past week, Dr. Karpen came by our room for a short chat. We love these chats because they are off the books and he takes time to really tell you what he is thinking. He stated that hunter's health right now is not at all optimal and he would greatly benefit from a new liver now, however, the risk of transplant and the outlook of the surgery it self is still a huge risk compared to the risk of him not being able to fight off illness with his native liver. We also asked about going ahead with the scope while he was in house but we all felt that he was not well enough to go under anesthesia. So for now, the plan is for Hunter to continue into to Pre-K in the fall. Dr. Karpen wants him exposed to whatever he can be before transplant happens. (Sounds familiar, right? ) He said that he has not met a sick child yet that has not greatly benefited from living life like a healthy kid. : )   

So, Hunter is officially enrolled in K3 at CCS. He will learn foreign language along with basic studies. We are so excited to be able to provide him with this opportunity. Even with all of his medical issues, he is the happiest and smartest kiddo ever. He is at an age where he is figuring out that it is not normal to spend more time with doctors than some family-- but he embraces it. He knows most of his doctors by name now and looks forward to hospital trips because the unit secretary, Ms. Betty, gives him lolly pops and surprises. His strength and bravery amazes me everyday.  
Thank you to everyone who continues to send love and prayers for Hunter. They do make a huge difference. He is nothing short of a miracle.  

Aug 27 2015:

Hi everyone,
   Sorry for the delay in updates. We have been working out details and making sure we had more information before posting. 
As most of you already know- Hunter was admitted last Friday due to some on going issues. They ran multiple tests this week and preformed a scope and banded some of his varices.  Hunter's stomach is not able to work properly anymore due to the size of his liver and spleen. He has a hard time keeping food down and his stomach is not dumping as well as it should. He also had grade II varices through out his esophagus and they went ahead and banded two that were under a lot of pressure. 
   We have come to a point in Hunter's journey where his quality of life is declining. He vomits almost daily and is unable to eat a full meal. The team has made the tough decision to move forward with listing him for a liver transplant. This will be a long process. Hunter is stable so this is not an emergent listing. I spoke with one of the nurses today and she gave me the whole process in a nut shell. It could potentially take 2 months or longer to get everything completed and have him listed and there are still uncertainties on whether he will meet the criteria to be listed. We will keep all upcoming appointments and the team will just contact us along the way to add tests and procedures as needed. The process should go as follows:

1. The Dr. will make the referral for transplant evaluation.
2. They will have to get insurance approval for the eval (takes up to 14 days)
3. Transplant evaluation (this is a two day process but can take a while to get scheduled)
4. Multidisciplinary meeting to determine if Hunter is eligible for transplant. This only takes place once a month. This meeting includes everyone that is involved in the eval process. They will discuss Hunter's case and see if he needs, meets criteria for, and is eligible for transplant as well as ensure that we have the means to sustain him post-transplant. 
5. If approved in the multidisciplinary meeting- they will submit for approval for listing to our insurance. (could take another 14 days)
6. labwork (he will have to have labs within 24 hours from the listing time)
7. they will notify us once Hunter is placed on the transplant list.

We will continue to get more information as this process begins. We will try to keep everyone informed as best as possible.We greatly appreciate everyone who has prayed, visited, check in on, or helped in anyway. We would appreciate continued prayers for Hunter and our family as we prepare for the next step in his journey. 
Thanks!

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