Logans journey with HD and Transplant
Let me start by saying that there is a very extensive history here and I am going to try and be brief with it. Otherwise it will go on for a long time. Logan was born July 2007. My husband was born with HD and it only affected part of his large intestine. So we knew there was a possibility that our son could be born with it. Little did we know the journey that was ahead of us. Logan was born full term by c-section. One of the nurses in the O.R. noticed that his stomach was distended already. Now throughout the whole pregnancy we kept repeating to the doctors that my husband had HD and that it was possible for our baby to have it. Thankfully there was a nurse that noticed right away and knew about it. They tried feeding him formula but he of course ended up vomitting. RIght from there we knew he had HD. He had to be transferred to a different hospital. The one he was born at was not equipped to take care of him. Once at the new hospital he had the gadgets put on him in the NICU to watch his vital signs and make sure nothing else went wrong. He had his first surgery when he was only 2 days old. It lasted for more then five hours!!! Surgeon came out and confirmed he had HD and that it not only affected his large intestine but that his ileocecal valve was bad and so was part of his small intestine. They were not sure how much of his small intestine was affected. They created an ileostomy for him, and i believe put a g tube in at the same time. We tried feeding him formula but after a few days he wasn't having any kind of output from the ileostomy. They had to do another surgery to take a look. They had to cut out more intestine. It seemed like each time the doctors would come in to talk to us they never had any good news. Finally one day they came in and said that more then half his small intestine was no good. Now they had previously told us he could survive with the small intestine but the percentage of survival rate kept dropping the more intestine he lost. They also told us that there was a chance he could have spotted HD, which means different sections would be good or bad, but that spotted HD only happened in about 2% of cases.
We tried feeding him formula from a bottle just like any other baby. He just wouldn't absorb it. He kept dumping it right out. He was also having reflux with it. At about a month old he had surgery to do a nissan on him to keep him from the reflux, and it worked. He was doing better with keeping the formula down that way, at least.
He had surgery after surgery to figure out why he wasn't absorbing the nutrition that he needed. He was on TPN and couldn't get any higher then 12ml of formula at a continuous rate. They had told us he would not be able to survive on TPN and that he shouldn't be on it for more then a year. It was going to destroy his liver. The large intestine was never taken out in hopes that in the future it could be used somehow to create a working bowel. During all of this he was in the hospital which was two and a half hours away from us. We got to have him home with us for one week exactly at Thanksgiving time in 2007. He was 4 months old and the very first time he ever got out of the hospital and the first time he ever got to see his home. It was a great week!!! Unfortunatly he got an infection and had to be readmitted to the hospital. They treated him for what he needed and we got into our regular routine of going twice a week to see him. ( Don't forget at this point in time gas was up to $4 a gallon!!!) He started doing better again and he was once again allowed to go home. I should mention that of course we had to learn how to take care of him at home. He had a central line, g-tube, ileostomy, was on TPN 24 hours a day and was on continuous feeds for 24 hrs a day. We got him home 2 days before Christmas of 2007. Couldn't have been better times to have him home that year. We had him home for two weeks straight. And I do mean literally 14 days. Seemed like each time we got him home we added a week to it. Well yet again he got another infection and back to the hospital he went. All the while the surgeons and doctors were trying to think of something they could do to get his intestines to absorb better.
This stay was only for a few days and we were able to take him back home around January 5th of 2008. Well yet again we added another week and had him home for three weeks this time. It was great and we were really getting into a routine with him. He had to be readmitted again because of another infection. That was the end of January. He was doing great and was fighting the infections. Well one week I went to go see him and noticed his stomach looked distended again. I mentioned it and really didn't do more then that, thinking everything was going to be ok. We had decided to go ahead with the STEP procedure since it was our last option before going to Transplant. We had it all set up.
March 7th,2008 he went to the PICU. Now he went in because he had a fever, his BP was up a bit and had an infection. Well we thought he was doing good. The doctors didn't have many horrible things to say other then he was getting more infections and we couldn't figure out why. He had to go in for surgery that next week because he had an abcess. What happened was part of the good and bad intestine got tangled and because of that it killed off a good chunk of good small intestine. We don't know how long this was sitting there, but from how he looked the last time we saw him on the regular floor, I would have to guess at least 2 weeks. They went in and fixed this but because of how long it was sitting and how it had happened he ended up getting 5 infections from it. The week before Easter that year the doctors pulled us into a meeting with everyone. They had no good news for us. His organs were starting to fail. Now let me take a brief second and tell you that up to this point Logan was doing great with beating everything that was thrown in his path. So when the doctors told us his organs were failing and it wasn't looking good we took it with a grain of salt and said "He'll beat this too". That was Tuesday March 18th. On March 21st I got a call from the hospital telling us we better get up there to see him. They didn't think he was going to make it through the night. His body was failing (except his heart was as strong as ever and so was his mind), he was on an oscillator( which if you don't know is worse then a ventilator) and his blood oxygen levels were dropping. So we of course raced up as fast as possible, being two and half hours away. Being in the PICU he was attached to so many things along with so many I.V.'s and the oscillator, and a catheter. He was on a paralytic to keep him asleep because of the oscillator. So we couldn't even get to see his eyes or her him "talk" or see him smile. He was swollen to max capacity that it didn't even look like him.
Oh yeah, I forgot to mention we also have a daughter who was 2 at the time and I was also 6 months pregnant.
We got to stay the night there in a room right by him outside of the PICU. Of course we didn't really get any sleep because we were worried that someone was gonna come knocking on the door to tell us he was leaving us. Only one of us could go in at a time to see him because our daughter was not allowed in because of how young she was and the flu restrictions were in place. So I was in another waiting room with her when a nurse came out and said she would take care of her that I should get in there with Logan. Well I get in there and they are resuscitating him. That was the second time they had to do it that morning. In the long run, come to find out its because they had to clear the passage way about every 8 hours. Well I decide to put a DNR on him because we had all been through so much and it seemed as if his body was telling us it couldn't take it anymore. I didn't want to see him in any more pain. Well I got the doctors to allow our daughter into the room with him. If we were gonna lose him she was gonna be right there with us. Our daughter and Logan have had this very special bond since he was born. He would always light up when he saw her. Well try explaining to a 2 year old that she is going to lose her brother. Not pleasant. That was a Saturday. She was in there talking to him, touching him, giving him hugs and kisses. Miraculously he started doing better. By Tuesday I took the DNR off him because he was actually doing that much better. After that for weeks and weeks doctors said that even though he showed signs of improvement he was not going to make it. It wasn't a matter of "if" he was going to die but more of "when" was he going to die. We didn't believe anyone. They had every doctor from every department that had ever had a brief encounter with Logan come and tell us the same thing. When his surgeon came back and told us the same thing that all of the other doctors had been telling us then I knew that was it. We tried everything to help him. We took shifts to see him. We would each spend an hour in there with him from morning to night. He was on several antibiotics, anti fungals, and several pain medications. Finally in May we had to make some kind of decision. Was he getting better or were we just literally watching him die in bed. We all agreed we would take him off all antibiotics and give his own immune system a chance to fight off all the infections he had. That did it!!! That was the trick all along. We did that and he started improving.
He was in the PICU for three horribly long, agonizing months!!! Now that he made it out of there, he had to have a transplant in order to live. There were no more ways around it. We didn't want this, but we did not want to lose Logan. Since that hospital could not do the transplant he needed we had to move.
We were all set to move when Logan went back to the PICU because of a fever, on the exact same day I had our youngest son. Now instead of the hospital staff using his central line he already had, they put a catheter in his left calf with what was supposed to be the right solution. While I am recovering from a c-section with our new son, my husband comes to me and tells me something has gone wrong with Logan's leg. See, Logan was swelling at the time they put the line in his leg. So the line came out of his vein and not his leg. This led to the fluids flowing into the cavity of his calf. By the time the nurse was allowed to turn it off, it had already done damage. This delayed our move to Ohio. He had two wound vacs on the front and back of his lower left leg. He then had a few skin grafts to help the healing process. He was finally stable enough to go ahead and move.
We ended up moving to Ohio so that he could go to Cincinnati Children's Hospital were they would be able to do a small/large intestine transplant. We got him moved there in August of 2008. They got him evaluated and talked with us about everything that goes along with transplant. By September of the same year he was listed on the transplant waiting list. Let me tell you once that is done, every time your phone rings you race to answer it.
In the meantime of all of this anticipation we start to notice that Logan's left leg is bowing inward. We ask the hospital he was staying at if they could take a look at it and let us know what was going on. Well, I get a call by the doctor telling me that they can try and start doing physical therapy with him and see if they can fix the leg to be back to normal, but that in the long run his leg might have to come off anyways, that therapy may not fix it. But if we do that, since he still had an infection in the leg he would have to be taken off the transplant list to deal with the leg. In my opinion, it was one of the easiest decisions I have ever made. This was on a Friday and he said to take the weekend to think it over. I told him right there to take his leg off. I would rather have him stay on the transplant list and save his life, then try and save his leg and possibly lose him in the meantime. The following week we took him in to have the lower half of his left leg amputated. His left leg is amputated at the knee. This happened in December of 2008.
Well, almost a month to the date we got the call in January of 2009 that they had organs for him. He had the surgery which was about 9 hours, less then we were expecting. Things were going good. He made it through surgery and was doing good. Now at this same time we had them biopsy his entire small intestine to find out why it wasn't absorbing like it should have. He was left with only 15 cm of his own small intestine that was perfectly good. Well remember up above when I said the doctors said that spotted HD happened in about 2% of HD cases, well guess what, Logan was in that 2%. He had spotted HD along his whole small intestine. So not only did he have Total Colonic HD but it was also spotted. Could our poor boy not get a break? Well three days after transplant they had to go in and take it out because it was dying. Come to find out the organs they gave him had gone without blood flow for an extended amount of time and there was no saving them. Thankfully we caught it in time.
He went through more medicine to get his body back to what it was before transplant in order to be re-listed, which happened in June of 2009. This whole time he is still living in the hospital. Well Halloween night of 2009 we get another call, they have organs again. Oh and let me back up a little. The 1st transplant was small/large intestine. When they re-listed him it was for liver/small intestine. Well the surgery went into the next day which was the 1st. He did great. He made it through yet another surgery. He went to the ICU afterwards. By the next day he had the breathing tube out. After a few days, i believe, he was out of the ICU and on a regular floor. By two weeks post-op he was off TPN. This was great news because he had been dependent on it since he was only a few weeks old. He kept continuing to do great through all of this. We were told it would probably be about six months before he would be able to come home. Well in December we started our training for how to take care of him. I remembered most of it from before. So it wasn't that difficult to relearn.
Well late January he was ready to come home!!! Only three months post transplant. This was the best news we had had in a long time. He could finally come home and join us and enjoy being among all of us all the time. He did have to be readmitted in March for a few weeks because of being sick. But he was right back home. He was off TPN, his feeds were higher then we have ever seen and they were only every three hours!! We even got to take his central line out, which of course was another great day because he had that since he was a few weeks old. We also started to feed him regular baby food!! Now he hasn't had anything by mouth since he was about 2 weeks old. So getting him to try food by mouth was very hard, but he finally came around. He was starting to take about 1 jar of baby food a day. We were working on getting him off of g-tube feeds.
Well October of 2010, I had to take him to the E.R. because he had a fever. Now with him because of transplant anything of 100 or more requires admittance to the hospital no matter what. Well it turns out that he had a severe rejection to the transplant. Now let me tell you if you don't already know or weren't sure. He will forever be at risk for rejection, no matter how long it has been since the transplant surgery. After about a whole month it is finally under control and he is on his way to recovery.
This is as brief of a history of our son Logan and what he has been through. He has had at least 20 surgeries, numerous ileostomy sites, ups, downs, even almost death. And I ask "Why is this not a well known disease and in the public eye?"
*the picture above is when Logan was 10 months old and in the picu, when we almost lost him
We tried feeding him formula from a bottle just like any other baby. He just wouldn't absorb it. He kept dumping it right out. He was also having reflux with it. At about a month old he had surgery to do a nissan on him to keep him from the reflux, and it worked. He was doing better with keeping the formula down that way, at least.
He had surgery after surgery to figure out why he wasn't absorbing the nutrition that he needed. He was on TPN and couldn't get any higher then 12ml of formula at a continuous rate. They had told us he would not be able to survive on TPN and that he shouldn't be on it for more then a year. It was going to destroy his liver. The large intestine was never taken out in hopes that in the future it could be used somehow to create a working bowel. During all of this he was in the hospital which was two and a half hours away from us. We got to have him home with us for one week exactly at Thanksgiving time in 2007. He was 4 months old and the very first time he ever got out of the hospital and the first time he ever got to see his home. It was a great week!!! Unfortunatly he got an infection and had to be readmitted to the hospital. They treated him for what he needed and we got into our regular routine of going twice a week to see him. ( Don't forget at this point in time gas was up to $4 a gallon!!!) He started doing better again and he was once again allowed to go home. I should mention that of course we had to learn how to take care of him at home. He had a central line, g-tube, ileostomy, was on TPN 24 hours a day and was on continuous feeds for 24 hrs a day. We got him home 2 days before Christmas of 2007. Couldn't have been better times to have him home that year. We had him home for two weeks straight. And I do mean literally 14 days. Seemed like each time we got him home we added a week to it. Well yet again he got another infection and back to the hospital he went. All the while the surgeons and doctors were trying to think of something they could do to get his intestines to absorb better.
This stay was only for a few days and we were able to take him back home around January 5th of 2008. Well yet again we added another week and had him home for three weeks this time. It was great and we were really getting into a routine with him. He had to be readmitted again because of another infection. That was the end of January. He was doing great and was fighting the infections. Well one week I went to go see him and noticed his stomach looked distended again. I mentioned it and really didn't do more then that, thinking everything was going to be ok. We had decided to go ahead with the STEP procedure since it was our last option before going to Transplant. We had it all set up.
March 7th,2008 he went to the PICU. Now he went in because he had a fever, his BP was up a bit and had an infection. Well we thought he was doing good. The doctors didn't have many horrible things to say other then he was getting more infections and we couldn't figure out why. He had to go in for surgery that next week because he had an abcess. What happened was part of the good and bad intestine got tangled and because of that it killed off a good chunk of good small intestine. We don't know how long this was sitting there, but from how he looked the last time we saw him on the regular floor, I would have to guess at least 2 weeks. They went in and fixed this but because of how long it was sitting and how it had happened he ended up getting 5 infections from it. The week before Easter that year the doctors pulled us into a meeting with everyone. They had no good news for us. His organs were starting to fail. Now let me take a brief second and tell you that up to this point Logan was doing great with beating everything that was thrown in his path. So when the doctors told us his organs were failing and it wasn't looking good we took it with a grain of salt and said "He'll beat this too". That was Tuesday March 18th. On March 21st I got a call from the hospital telling us we better get up there to see him. They didn't think he was going to make it through the night. His body was failing (except his heart was as strong as ever and so was his mind), he was on an oscillator( which if you don't know is worse then a ventilator) and his blood oxygen levels were dropping. So we of course raced up as fast as possible, being two and half hours away. Being in the PICU he was attached to so many things along with so many I.V.'s and the oscillator, and a catheter. He was on a paralytic to keep him asleep because of the oscillator. So we couldn't even get to see his eyes or her him "talk" or see him smile. He was swollen to max capacity that it didn't even look like him.
Oh yeah, I forgot to mention we also have a daughter who was 2 at the time and I was also 6 months pregnant.
We got to stay the night there in a room right by him outside of the PICU. Of course we didn't really get any sleep because we were worried that someone was gonna come knocking on the door to tell us he was leaving us. Only one of us could go in at a time to see him because our daughter was not allowed in because of how young she was and the flu restrictions were in place. So I was in another waiting room with her when a nurse came out and said she would take care of her that I should get in there with Logan. Well I get in there and they are resuscitating him. That was the second time they had to do it that morning. In the long run, come to find out its because they had to clear the passage way about every 8 hours. Well I decide to put a DNR on him because we had all been through so much and it seemed as if his body was telling us it couldn't take it anymore. I didn't want to see him in any more pain. Well I got the doctors to allow our daughter into the room with him. If we were gonna lose him she was gonna be right there with us. Our daughter and Logan have had this very special bond since he was born. He would always light up when he saw her. Well try explaining to a 2 year old that she is going to lose her brother. Not pleasant. That was a Saturday. She was in there talking to him, touching him, giving him hugs and kisses. Miraculously he started doing better. By Tuesday I took the DNR off him because he was actually doing that much better. After that for weeks and weeks doctors said that even though he showed signs of improvement he was not going to make it. It wasn't a matter of "if" he was going to die but more of "when" was he going to die. We didn't believe anyone. They had every doctor from every department that had ever had a brief encounter with Logan come and tell us the same thing. When his surgeon came back and told us the same thing that all of the other doctors had been telling us then I knew that was it. We tried everything to help him. We took shifts to see him. We would each spend an hour in there with him from morning to night. He was on several antibiotics, anti fungals, and several pain medications. Finally in May we had to make some kind of decision. Was he getting better or were we just literally watching him die in bed. We all agreed we would take him off all antibiotics and give his own immune system a chance to fight off all the infections he had. That did it!!! That was the trick all along. We did that and he started improving.
He was in the PICU for three horribly long, agonizing months!!! Now that he made it out of there, he had to have a transplant in order to live. There were no more ways around it. We didn't want this, but we did not want to lose Logan. Since that hospital could not do the transplant he needed we had to move.
We were all set to move when Logan went back to the PICU because of a fever, on the exact same day I had our youngest son. Now instead of the hospital staff using his central line he already had, they put a catheter in his left calf with what was supposed to be the right solution. While I am recovering from a c-section with our new son, my husband comes to me and tells me something has gone wrong with Logan's leg. See, Logan was swelling at the time they put the line in his leg. So the line came out of his vein and not his leg. This led to the fluids flowing into the cavity of his calf. By the time the nurse was allowed to turn it off, it had already done damage. This delayed our move to Ohio. He had two wound vacs on the front and back of his lower left leg. He then had a few skin grafts to help the healing process. He was finally stable enough to go ahead and move.
We ended up moving to Ohio so that he could go to Cincinnati Children's Hospital were they would be able to do a small/large intestine transplant. We got him moved there in August of 2008. They got him evaluated and talked with us about everything that goes along with transplant. By September of the same year he was listed on the transplant waiting list. Let me tell you once that is done, every time your phone rings you race to answer it.
In the meantime of all of this anticipation we start to notice that Logan's left leg is bowing inward. We ask the hospital he was staying at if they could take a look at it and let us know what was going on. Well, I get a call by the doctor telling me that they can try and start doing physical therapy with him and see if they can fix the leg to be back to normal, but that in the long run his leg might have to come off anyways, that therapy may not fix it. But if we do that, since he still had an infection in the leg he would have to be taken off the transplant list to deal with the leg. In my opinion, it was one of the easiest decisions I have ever made. This was on a Friday and he said to take the weekend to think it over. I told him right there to take his leg off. I would rather have him stay on the transplant list and save his life, then try and save his leg and possibly lose him in the meantime. The following week we took him in to have the lower half of his left leg amputated. His left leg is amputated at the knee. This happened in December of 2008.
Well, almost a month to the date we got the call in January of 2009 that they had organs for him. He had the surgery which was about 9 hours, less then we were expecting. Things were going good. He made it through surgery and was doing good. Now at this same time we had them biopsy his entire small intestine to find out why it wasn't absorbing like it should have. He was left with only 15 cm of his own small intestine that was perfectly good. Well remember up above when I said the doctors said that spotted HD happened in about 2% of HD cases, well guess what, Logan was in that 2%. He had spotted HD along his whole small intestine. So not only did he have Total Colonic HD but it was also spotted. Could our poor boy not get a break? Well three days after transplant they had to go in and take it out because it was dying. Come to find out the organs they gave him had gone without blood flow for an extended amount of time and there was no saving them. Thankfully we caught it in time.
He went through more medicine to get his body back to what it was before transplant in order to be re-listed, which happened in June of 2009. This whole time he is still living in the hospital. Well Halloween night of 2009 we get another call, they have organs again. Oh and let me back up a little. The 1st transplant was small/large intestine. When they re-listed him it was for liver/small intestine. Well the surgery went into the next day which was the 1st. He did great. He made it through yet another surgery. He went to the ICU afterwards. By the next day he had the breathing tube out. After a few days, i believe, he was out of the ICU and on a regular floor. By two weeks post-op he was off TPN. This was great news because he had been dependent on it since he was only a few weeks old. He kept continuing to do great through all of this. We were told it would probably be about six months before he would be able to come home. Well in December we started our training for how to take care of him. I remembered most of it from before. So it wasn't that difficult to relearn.
Well late January he was ready to come home!!! Only three months post transplant. This was the best news we had had in a long time. He could finally come home and join us and enjoy being among all of us all the time. He did have to be readmitted in March for a few weeks because of being sick. But he was right back home. He was off TPN, his feeds were higher then we have ever seen and they were only every three hours!! We even got to take his central line out, which of course was another great day because he had that since he was a few weeks old. We also started to feed him regular baby food!! Now he hasn't had anything by mouth since he was about 2 weeks old. So getting him to try food by mouth was very hard, but he finally came around. He was starting to take about 1 jar of baby food a day. We were working on getting him off of g-tube feeds.
Well October of 2010, I had to take him to the E.R. because he had a fever. Now with him because of transplant anything of 100 or more requires admittance to the hospital no matter what. Well it turns out that he had a severe rejection to the transplant. Now let me tell you if you don't already know or weren't sure. He will forever be at risk for rejection, no matter how long it has been since the transplant surgery. After about a whole month it is finally under control and he is on his way to recovery.
This is as brief of a history of our son Logan and what he has been through. He has had at least 20 surgeries, numerous ileostomy sites, ups, downs, even almost death. And I ask "Why is this not a well known disease and in the public eye?"
*the picture above is when Logan was 10 months old and in the picu, when we almost lost him