Dylan W Levy
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3/5/2011

5 Comments

 
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That is right ladies and gentleman we are home. Noah and I had talked this over amongst ourselves and then again with the transplant team and decided it was time to go home.  Dylan is still on a twice weekly schedule and they are still tweaking the doses of medication for him, but the doctors told us they don't care where we sleep as long as we come back to Stanford for labs and clinic. I should mention that our accommodations were far from uncomfortable. We were staying with very generous family members who live near the hospital and it was so comforting to be with them during such a huge milestone in our lives. We will never be able to thank them the way we want to or should. They've helped us out tremendously. So yesterday we packed up most of our belongings (Dylan acquired a lot of "guilt gifts" while in the hospital and it will take another load to get it all home) and made the drive home. We did make one pit stop before we went home; picking up the dogs.

Our dear friends have had our dogs for the past month. We tried and tried to talk them out of it but they insisted, saying it was nothing comapred to what we were going to go through. It takes very special people to take on a task like that and that's just what they are. We knew that our dogs were in great hands and they would be treated like we would treat them, if not better. Not having to worry about the dogs or where they were was so nice. It was a huge weight lifted off our shoulders, even Dylan was happy to know that his friend would be taking care of them and not a stranger. We met up and had a quick lunch and then drove home. The car was packed ceiling high and had live animals everywhere. It must have been a site to see but we didn't care...we were going HOME. 

Now that we are home we are settling in and starting a more permanent routine. I removed all of Dylan's many pre-transplant medications and replaced them with the many post-transplant medications. I have to say that it was quite a moment for me. Those medications kept Dylan alive for so long. It was like saying goodbye to an old friend. At the same time knowing he no longer needed them felt fantastic. We went to Dylan's favorite restaurant for dinner last night. We had not been there for quite some time. We are there so frequently that they know us by name and were well aware of where we were the past month. Dylan throughly enjoyed his carburetter roll (shrimp tempura and avocado) with no seaweed. He ate every last bit. It was the perfect end to his homecoming. 

As I had mentioned before Dylan is still having multiple visits a week and constant changing of medication dosages. On Thursday was had another scary moment. Not nearly was bad as past events, but pretty unnerving. One of the lab values we keep a close eye on is platelet level. Platelets help make up the red blood cells and keep the blood "sticky" to help with clotting. Dylan's have been higher than they ever, making their way up to the three hundred mark. His platelets were a big issue pre-transplant due to his huge spleen, sitting around seventy. Last week they started dropping again; going from about three hundred down to a hundred and fifty. The doctor had feared that Dylan's portal vein had clotted off. This was not the same blood vessel we had issues with before. This was an entirely new issue and just as serious. We were sent for an emergency ultrasound at the hospital to look at all the blood vessels. I was happy that our tech was a seasoned veteran. She said she had been doing ultrasounds for over twenty-four years. She quickly and efficiently looked around taking wavelength readings on all the blood vessels and then we were on our way. 

We were left to worry for what seemed like forever, but did receive word that the preliminary results showed Dylan's portal vein was wide open and had correct directional flow (a side note...they still can not find Dylan's hepatic artery on ultrasound. It is way too small.) Phew!  We still do not know what caused his drop in platelets. I am hoping that is is just a lab error or something minor that will correct itself. We will have to keep a close eye on him. Dylan's labs from Thursday also showed that his Prograf (immunosupression medication) levels were below target range. We had just upped Dylan's dosage the week before and brought it to a good level so it was concerning that it had dropped again. At the point where Dylan is post transplant they like to keep his Prograf levels between 8.0 and 10.0. Dylan's new level was 6.4, far too low to keep his new liver happy. We upped his dose again to see if it brings it to an acceptable range. For now we get to wait and see what Monday brings. An entire weekend of worry and stress. Will his platelets be stable? Will his Prograf level be where the doctors are happy with it? These are the new stresses that we have, but I will take these over the old ones any day.

* We have kept the names of our family and friends out of the posts to keep some privacy for them. I am sure they know who I am talking about. Please know that what you have done for us will never be forgotten and we are forever in debt to you. Thank you from the bottom of our hearts!

-Amber


5 Comments
mike maddox
3/5/2011 02:52:23 am

Im so glad you guys are home. I hope you dont stress too much over the weekend(I know you will any parent would) hope Noah is doing well and cant believe Dylan likes sushi thats cool! have a great weekend and enjoy the sun while it lasts.


mike (boxerfxt)

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Chad Witherspoon
3/5/2011 03:44:23 am

I have followed you guys since the beginning of the Underdogs adventure and you inspired me to work hard in order to get simple satisfaction all around. It brought up my self esteem and helped me out a lot. When I found out about your son's health problems I got worried and just watched and waited. Then something terrible started to happened. One of my best friends parents turned orange and was rushed to the hospital. He was unable to digest certain proteins due to a bile dist failure and was told there wasn't much treatment. I live in Washington but they flew him up to Minnesota I think where they assaulted his problem with tests. They found out that he could solve his problem with a liver transplant. Long story short right when Dylan finished his transplant they just found a liver for him. I am glad things are working out at least in a few small ways for both families and i hope to see more good news.

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Judy
3/7/2011 01:15:48 am

Sooo glad you are home!! It will help you both to heal and Amber needs to be home too! We still check on you and hope all goes well.

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Ed - Dallas, TX.
3/7/2011 01:51:34 am

I am glad you guys are home as well, nothing like being at home!

Baby steps. Baby steps. That is all that you guys can do right now, but each one will hopefully become bigger and better as each day passes.

I too do not know you guys, but I feel that I do now as I keep up with Dylan's progress. Unfortunately there are probably many Dylan's in this world, but the way you two have transcribed your path with all of its ups and downs and all of the related emotions really can make somebody relate. That is what it is all about too, and I hope it has worked out for your family, as it seems it has. It is probably a bit therapeutic writing this all down too.

I hope this is not completely out of place, and I ask this in all sincerity. With your son's healthcare issues, and with all of the healthcare law talk going around, I really would like to hear your take on it? I am sure you will be left with large medical bills after all is said and done, but helping your son become healthy again will make it worth it in the end. I am not sure if you have taken the new healthcare laws that will soon become law into account in regards to Dylan's care. I am a father of two girls, and this is why I ask, and my question is do you think the upcoming new healthcare laws would help your family's situation, or not, or somewhere in between? I am against them, but you guys are living the healthcae debate right now, so your opinions would be greatly appreciated. You hear many sides of the story, but I would like to hear yours. If you have thought about it, and how it might have helped or hurt your circumstances, I would love to hear it. I certainly trust your viewpoints more than a politician in Washington. And if you don't want to respond I completely understand that as well.

Any of us could be in your situation at any given moment, and I want the best overall care as possible, for all of us.

I hope Dylan continues to get the best care from both of you, and the doctors, and that this year starts a great new chapter in his life!

Thank you again for sharing your story.

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Amber
3/8/2011 11:14:31 am

Ed, Thank you for taking the time to comment. Noah and I are both against the health care reform that has be presented. I know it may be hard to believe given our circumstances. I feel that with free health care there is a trade off for quality of the care you receive. We are so fortunate to be at the center we are and getting the level of care we are. I fear that if health care became any form of socialized medicine that we are subjecting ourselves to substandard care. Just my two cents.

Judy, Mike and Chad...Thank you so much for your caring comments. It is so comforting to know that Dylan has so many prayers all over the place. Chad I also hope that your friend's parent is recovering well and his new liver is the answer he needed.

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