Evan had his surgery today to drain the hematoma exiting near his liver. The hematoma contained mostly blood and fluid. The docs did a liver biopsy (pretty standard post transplant) and a washout to clear out any possible lingering infection. We still don't have any cultures back from the fluid, but the docs don't think it was concerning. Hopefully this procedure will have cleared out whatever is causing Evan's fevers and he has no more so we can get out of the hospital soon. The surgeons said that Evan's liver is working beautifully! We are so pleased to know that! The next couple days will be telling as to whether or not the hematoma or a possible bug in Evan's belly were the cause of his fevers. Evan is doing well and resting (thanks in part to some pain meds).
While Evan was in surgery, JR and I were able to walk the campus a bit. Stanford has a beautiful campus and the church in the center if campus is absolutely stunning! It was nice to get some fresh air and a bit of a refresher to get ready to tackle these next days if recovery. All is continuing to go well. This was just a hiccup in the road to full recovery.
Evan in park
Thursday, March 29, 2012
Wednesday, March 28, 2012
UPDATE
I know many of you have probably been checking daily and waiting for the next update. Things have been busy (as to be expected).
Evan was officially transplanted on March 18th, just one day before his 1st birthday. The days that have followed have been filled with many emotions. Evan's recovery started out very well. He was out of the PICU in 3 days (Wednesday March 21st is when he was moved) and the nurses on the regular floor (3 South) were so excited that he was back up so quickly! Just two days later on March 23rd, his bile bags were removed. Evan was still doing very well. He became more and more active each day and was responding well to his medications. His liver functions were normalizing as the docs wanted. Everyone was very pleased with his progress.
Unfortunately, the luck seemed to stop there. On March 24, Evan spiked a fever of 101.5. The docs immediately ran blood and urine cultures and started him on antibiotics. His blood cultures grew quickly and they believed there to be a contamanent on his central line. They decided it would be best to remove his central line and did so the next day, March 25th. Evan spent all of Monday without a fever. Unfortunately, by Tuesday evening his fever was back and full force at 102.5. Another set of cultures were taken and a CT and Chest Xray were ordered.
This afternoon of Wednesday, March 28th, Evan received a chest and abdominal CT as well as a PICC line insertion. Not long after the that was done, the docs were certain they knew the cause of Evan's fevers....there is a hematoma next to the cut portion of his liver. They need to go in tomorrow to drain them. This means that Evan will once again be sedated, intubated, and have his abdomen cut open. It sounds so simple being written out, but it's really not. It's scary to know that once again Evan will be going into major surgery. All I can do at this point is pray and ask that you all do the same. Pray that Evan is strong and can handle this surgery. Pray that this hematoma is the cause of Evan's fevers and that once drained we will not experience any more hiccups. Pray that the Lord guide the hands of the surgeons and watch over everyone in the operating room.
I can't say that I didn't expect hiccups...I did. Having talked to many parents who have been through transplant for MSUD, I know that there are many different challenges that we can face...especially at this point of transplant. However, I also know that parents who have faced even bigger challenges with the liver transplant still would tell me that I am making the right decision. I know families who almost lost their children during recovery and faced many hiccups on the road to recovery. The same families have told me that despite the difficult recovery, they would still choose transplant over MSUD.
Regardless of expecting hiccups, I can't say I am not scared. I am extremely scared, but I also know that the Lord is here with us and will guide us through this as he has before.
On that note, I am going to head off to get some sleep. I need to be back at the hospital early tomorrow. (Tonight is my night to rest at Ronald McDonald House). I'll update again when I can.
Evan was officially transplanted on March 18th, just one day before his 1st birthday. The days that have followed have been filled with many emotions. Evan's recovery started out very well. He was out of the PICU in 3 days (Wednesday March 21st is when he was moved) and the nurses on the regular floor (3 South) were so excited that he was back up so quickly! Just two days later on March 23rd, his bile bags were removed. Evan was still doing very well. He became more and more active each day and was responding well to his medications. His liver functions were normalizing as the docs wanted. Everyone was very pleased with his progress.
Unfortunately, the luck seemed to stop there. On March 24, Evan spiked a fever of 101.5. The docs immediately ran blood and urine cultures and started him on antibiotics. His blood cultures grew quickly and they believed there to be a contamanent on his central line. They decided it would be best to remove his central line and did so the next day, March 25th. Evan spent all of Monday without a fever. Unfortunately, by Tuesday evening his fever was back and full force at 102.5. Another set of cultures were taken and a CT and Chest Xray were ordered.
This afternoon of Wednesday, March 28th, Evan received a chest and abdominal CT as well as a PICC line insertion. Not long after the that was done, the docs were certain they knew the cause of Evan's fevers....there is a hematoma next to the cut portion of his liver. They need to go in tomorrow to drain them. This means that Evan will once again be sedated, intubated, and have his abdomen cut open. It sounds so simple being written out, but it's really not. It's scary to know that once again Evan will be going into major surgery. All I can do at this point is pray and ask that you all do the same. Pray that Evan is strong and can handle this surgery. Pray that this hematoma is the cause of Evan's fevers and that once drained we will not experience any more hiccups. Pray that the Lord guide the hands of the surgeons and watch over everyone in the operating room.
I can't say that I didn't expect hiccups...I did. Having talked to many parents who have been through transplant for MSUD, I know that there are many different challenges that we can face...especially at this point of transplant. However, I also know that parents who have faced even bigger challenges with the liver transplant still would tell me that I am making the right decision. I know families who almost lost their children during recovery and faced many hiccups on the road to recovery. The same families have told me that despite the difficult recovery, they would still choose transplant over MSUD.
Regardless of expecting hiccups, I can't say I am not scared. I am extremely scared, but I also know that the Lord is here with us and will guide us through this as he has before.
On that note, I am going to head off to get some sleep. I need to be back at the hospital early tomorrow. (Tonight is my night to rest at Ronald McDonald House). I'll update again when I can.
Saturday, March 17, 2012
"The Call"
At around 2:00 yesterday afternoon we received the call we have been waiting for. I was told that the surgical team had accepted a liver for Evan and that they wanted us to come soon even though the surgery wouldn't be right away. They were worried that there was potential for bad weather that would make it harder to get into Palo Alto.
The flight over was uneventful. Evan had a hard time on the flight. It didn't seem he understood what was going on and was upset until the flight nurse switched seats with me so I could sit next to him. Then he was calm for the remainder of the flight. We flew in to Moffett Air Field and were met buy an ambulance which took us to the hospital. Evan didn't seem to mind the ambulance ride too much.
Once we arrived at the hospital, the craziness began! We were quickly brought up to the floor where the nurses checked all Evan's vitals, started his IVs, and just basically poked and prodded for a bit. We were told that Evan was scheduled to go into surgery at 7am, although anything could change. He was not allowed to eat after midnight, but they put him on his D10 IV and gave him lipids (fat) to keep his calories and fluid up. The night was difficult, Evan couldn't sleep and of course that meant we didn't sleep much either. Come 6:00 am we were wondering why we hadn't heard from the nurse or the docs about when we would be taking Evan down for surgery. By 6:30, we found out why. There was a delay in harvesting the organs and the surgery had been pushed back. No one could tell us what time, as the donor organs were still not harvested.
At this point, we are still waiting. The surgical team feels confident that this liver will be good for Evan. All they could tell us is that the donor is in the 5-10 year old age range. This most likely means the liver will need to be cut a bit to fit into Evan. Of course with this, there comes added risk for infection and bile leaks (all which are treatable).
This is not how I pictured this would go. I pictured we would get here and within a few hours Evan would be in surgery while we anxiously paced the halls. Instead, we anxiously wait in a tiny and noisy hospital room with no clue as to when his surgery will be. It could still be tonight or it could be in the morning. All depends on the donor and what is taking place on that end. The team here is ready...so are we!
Of course, it is difficult not to think of the sacrifice the family of the donor is making. They have lost a child, yet they choose to make an unselfish decision and share his/her organs so that children like Evan can grow and hopefully have a wonderful healthy life. I cannot imagine the grief and pain this family must be feeling. I pray that God can give them peace in knowing that their child did not die for nothing. That in their child's death there is healing for other children. I am sure they have feelings on anger, sadness, and just plain frustration wondering why they are losing their child. I wish that I could give them an answer. I wish I could hug them and tell them that out of this death comes new life. Would that even console them? I don't know. We were told that after the transplant at some point we could send a letter to the donor family through the organ procurement program. They could then decide if they wanted to meet us. What would that be like? Would they even want to meet us? Would we even write the letter? It's something we will think about and most likely will do down the road when Evan is recovered and doing well. I have seen videos of donor families meeting recipient families and they are quite emotional. I don't think we will be ready for that kind of emotion for a while as we are still going through our own emotional roller coaster...and I am sure the donor family is too.
Please pray that this truly is Evan's time for a new liver. Although everything seems to be in order, there is still always a chance that the liver arrives here and the transplant team decides it's not the right liver for Evan. We have faith that this is his time and that God has a plan for us, Evan, and the donor family.
I will leave you with this, "The measure of a life, after all, is not its duration, but its donation"
The donation this family is making is immeasurable to us! It is the greatest gift that we will ever know!
The flight over was uneventful. Evan had a hard time on the flight. It didn't seem he understood what was going on and was upset until the flight nurse switched seats with me so I could sit next to him. Then he was calm for the remainder of the flight. We flew in to Moffett Air Field and were met buy an ambulance which took us to the hospital. Evan didn't seem to mind the ambulance ride too much.
Once we arrived at the hospital, the craziness began! We were quickly brought up to the floor where the nurses checked all Evan's vitals, started his IVs, and just basically poked and prodded for a bit. We were told that Evan was scheduled to go into surgery at 7am, although anything could change. He was not allowed to eat after midnight, but they put him on his D10 IV and gave him lipids (fat) to keep his calories and fluid up. The night was difficult, Evan couldn't sleep and of course that meant we didn't sleep much either. Come 6:00 am we were wondering why we hadn't heard from the nurse or the docs about when we would be taking Evan down for surgery. By 6:30, we found out why. There was a delay in harvesting the organs and the surgery had been pushed back. No one could tell us what time, as the donor organs were still not harvested.
At this point, we are still waiting. The surgical team feels confident that this liver will be good for Evan. All they could tell us is that the donor is in the 5-10 year old age range. This most likely means the liver will need to be cut a bit to fit into Evan. Of course with this, there comes added risk for infection and bile leaks (all which are treatable).
This is not how I pictured this would go. I pictured we would get here and within a few hours Evan would be in surgery while we anxiously paced the halls. Instead, we anxiously wait in a tiny and noisy hospital room with no clue as to when his surgery will be. It could still be tonight or it could be in the morning. All depends on the donor and what is taking place on that end. The team here is ready...so are we!
Of course, it is difficult not to think of the sacrifice the family of the donor is making. They have lost a child, yet they choose to make an unselfish decision and share his/her organs so that children like Evan can grow and hopefully have a wonderful healthy life. I cannot imagine the grief and pain this family must be feeling. I pray that God can give them peace in knowing that their child did not die for nothing. That in their child's death there is healing for other children. I am sure they have feelings on anger, sadness, and just plain frustration wondering why they are losing their child. I wish that I could give them an answer. I wish I could hug them and tell them that out of this death comes new life. Would that even console them? I don't know. We were told that after the transplant at some point we could send a letter to the donor family through the organ procurement program. They could then decide if they wanted to meet us. What would that be like? Would they even want to meet us? Would we even write the letter? It's something we will think about and most likely will do down the road when Evan is recovered and doing well. I have seen videos of donor families meeting recipient families and they are quite emotional. I don't think we will be ready for that kind of emotion for a while as we are still going through our own emotional roller coaster...and I am sure the donor family is too.
Please pray that this truly is Evan's time for a new liver. Although everything seems to be in order, there is still always a chance that the liver arrives here and the transplant team decides it's not the right liver for Evan. We have faith that this is his time and that God has a plan for us, Evan, and the donor family.
I will leave you with this, "The measure of a life, after all, is not its duration, but its donation"
The donation this family is making is immeasurable to us! It is the greatest gift that we will ever know!
Subscribe to:
Posts (Atom)