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
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
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