Lincoln's repeat cardiac cath was last week, and the results were better than the one prior. This was really good news! His heart isn't perfect. It's still pumping more blood than it should have to. They said his heart is squeezing well but isn't relaxing well. But it's better than before, and the cardiologist believes this particular problem is directly related to his sick liver. Unfortunately, the subaortic membrance is also coming back. It's not as bad as it was before but we'll have to keep a close eye on it.
A kidney test called a GFR was the last test we had to do before listing. The doctors wanted to know how his kidneys were working so they could plan out the post-transplant anti-rejection medications. His kidney also aren't perfect, but are doing better than they were before surgery.
Finally, on April 22nd, Lincoln was officially put on the liver transplant waiting list! It was the most exciting and terrifying news we've ever received. And now we just wait. In the meantime, myself and a couple other people are being evaluated to be living donors.
We're still in the hospital but Lincoln has been feeling better for the last few days. He's smiling, kicking his legs and playing with his toys. He has some physical delays, he can't sit up on his own yet and he can't push himself up when he's on his belly. This is pretty normal for liver kids. His belly gets very bloated and really makes it hard for him to lie on his tummy. And of course a couple of surgeries and having to stay in bed for weeks will delay most things. Poor kid just doesn't get the play time other kids his age get. The nurses tell us that once kids get new livers they catch right up and I hope that's true.
Another piece of good news is that the doctors think he's right on track mentally. He's interested in things, recognizes people and reacts appropriately to noises and new people. Of course there is just no way to know the long term effects of all this, but it's reassuring that he seems to be developing so far!
Thursday, April 24, 2014
Wednesday, April 16, 2014
Lots of updates
It's been an unacceptably long amount of time since I've updated the blog, and I apologize for that. As more time passed it started to seem like a more and more daunting task so it never got done. I'll do a quick overview of the past couple of months, and then an update of where we are now. Sorry, it may get long. Also, I am far from a medical expert, so I will just try to explain things as I understand them.
February
Heart surgery happened and was a success. Lincoln had a little bit of a hard time going on heart lung bypass but came off bypass fine. He never picked up eating like he was before surgery, but we went home in the hopes that he'd pick up once in a few days. Unfortunately, he didn't, and his electrolytes dropped low enough that we were readmitted after only a few days at home.
March
The first few weeks of being back in the hospital were a terrible roller coaster. Lincoln wasn't feeling great and wasn't eating great so we started him back on ng feeds. However, he was throwing up occasionally and since the doctors weren't sure why they kept ordering him NPO (traslation: not allowed to eat). They'd try to put him on fluids but he generally doesn't react well to that - he kept holding too much fluid then would have trouble breathing because the fluid in his belly pushed against his lungs. He landed in the PICU (pediatric intensive care unit) a couple of times. This back and forth continued for a couple of weeks, and during that time Lincoln got very little nutrition and lost a good amount of weight. Finally, after many sometimes intense conversations with Lincoln's doctors they finally started him on TPN, which is IV nutrition. This wasn't ideal since obviously we'd rather he get his milk, and TPN is hard on the liver, but we were just happy he was getting any sort of nutrition.
Once he was stable the doctors wanted to get the kidney surgery knocked out. The surgery to get rid of his UPJ obstruction (blockage in his ureter) happened 25 days after the heart surgery, and that was a success as well. The urologist had been concerned that the kidney would be in bad shape and he'd have to remove it, but it looked better than he expected and he was able to remove the obstruction. Yay! As an interesting side note, the surgeon also told us that Lincoln's bilirubin isn't only in his skin. His internal organs, fat, tissues, etc all have a yellow tint to them. The sugeon was a little surprised I think I had never thought about it before, but it makes sense.
Recovery from kidney surgery was not easy. They removed the breathing tube a couple of days after surgery, but then Lincoln had trouble breathing so the next day they had to reintubate him (sedate him and put the breathing tube back in). Then a day later (I think it was the next day anyway...it all blends together) he went into septic shock. His blood pressure dropped very low and he had a lot of fluid in his lungs, and was generally having a hard time. Turns out he had RSV, which probably contributed at least a little to his difficult recovery. RSV is a virus that in an adult might not show up as anything more than a runny nose. But in kids, especially kids like Lincoln who are fresh out of surgery, it can lead to some pretty serious complications. He finally stabilized but it was still a couple of weeks until he was able to kick the RSV symptoms and his breathing improved. I'll take this moment to remind people that if you're not feeling well, don't risk it! Don't visit little ones and don't go into hospitals. What shows up in you as just the sniffles could be a very big deal to someone else. It's always better to be safe than sorry.
After he was recovered we finally got Lincoln on a steady nutrition plan. He was, and is still, on ng feeds and then eats whatever else he wants by mouth. A week or so after he was stable Lincoln had another cardiac cath to assess whether his heart was now strong enough for a liver transplant. He was approved for listing, but liver transplants involve clamping some major blood vessels so the old liver can be removed and that puts a lot of stress on the heart. The doctors wanted to be sure his heart could handle it. Turns out his heart function wasn't ideal. His heart was pumping more blood than it should have to, likely because of his sick liver. It was making his vessels floppy. The extra blood flow was making them expand, and then they were having trouble relaxing. So picture a balloon you've blown up then let the air out of. The balloon never quite goes back to its original shape. This is common with liver disease but unfortunately makes a transplant riskier. To try to improve his heart the plan was to take a week to give him dieretics to get some fluid off him, give him time on his steady nutrition plan, and give him extra oxygen.
However, before we could get a repeat cath, Lincoln got a bacterial infection. Another complication of liver disease. Crazy how much your liver does, huh? Since Lincoln's liver can't filter out things like bacteria he's at increase risk of a blood infection. The bacteria he got is one that's found in the stomach, it made its way to his blood stream. Luckily we found it super early and he didn't really have any of the complications it can cause. Sidebar...
From the start of our latest hospital admission John and I felt like we were struggling to be heard by the doctors and nurses. We know Lincoln and wanted to be involved in his care decisions. For example, we knew he doesn't react well to being on IV fluids. However, he kept being put on IV fluids even when John and I emphatically asked that he not be and instead be allowed to start his ng feeds. It's especially hard because the doctors rotate every week. So it felt like once we finally got through to one team and they were listening to our thoughts, they'd leave and a whole new team would come in. Finally, after weeks of pushing, we got a core team of doctors who knew Lincoln and knew us, and they are now the "go to" team for decisions for Lincoln. And they listen to us, which is awesome. Back to the bacteria...
One morning John felt that something was up with Lincoln. Lincoln just wasn't acting right, and John expressed his concerns to the doctor. Because we now have this great team who really cares about our input, the doctor listened to John and took him seriously. She ran a bunch of tests, one of which was a blood culture, to make sure nothing was wrong. That's how we caught the bacterial infection so early. The care team worked exactly like it should and Lincoln's health benefitted.
Turns out the bacteria had gotten onto Lincoln's PICC (basically a long term IV, makes it so they can draw labs and give him medicines without having to stick him every time) so they had to pull it out. Of course the cardiac cath was postponed.
Got rid of the bacteria, and that brings us to today. Lincoln is getting his repeat cath, and hopefully things look better. They originally wanted to get another liver biopsy on the same day but that didn't work out. The transplant team will go over the cath results in a meeting tomorrow and will decide if a biopsy is really necessary. He had one when he was very small, but they may need to repeat it to see if anything has changed. They want to be as sure as they can that a new liver will fix the problem.
We need this cath to show that his heart is in better shape. Othewise they won't be able to list him and accept a new liver for him. Updates to come...hopefully it won't take me 2 months to write an update this time!
February
Heart surgery happened and was a success. Lincoln had a little bit of a hard time going on heart lung bypass but came off bypass fine. He never picked up eating like he was before surgery, but we went home in the hopes that he'd pick up once in a few days. Unfortunately, he didn't, and his electrolytes dropped low enough that we were readmitted after only a few days at home.
March
The first few weeks of being back in the hospital were a terrible roller coaster. Lincoln wasn't feeling great and wasn't eating great so we started him back on ng feeds. However, he was throwing up occasionally and since the doctors weren't sure why they kept ordering him NPO (traslation: not allowed to eat). They'd try to put him on fluids but he generally doesn't react well to that - he kept holding too much fluid then would have trouble breathing because the fluid in his belly pushed against his lungs. He landed in the PICU (pediatric intensive care unit) a couple of times. This back and forth continued for a couple of weeks, and during that time Lincoln got very little nutrition and lost a good amount of weight. Finally, after many sometimes intense conversations with Lincoln's doctors they finally started him on TPN, which is IV nutrition. This wasn't ideal since obviously we'd rather he get his milk, and TPN is hard on the liver, but we were just happy he was getting any sort of nutrition.
Once he was stable the doctors wanted to get the kidney surgery knocked out. The surgery to get rid of his UPJ obstruction (blockage in his ureter) happened 25 days after the heart surgery, and that was a success as well. The urologist had been concerned that the kidney would be in bad shape and he'd have to remove it, but it looked better than he expected and he was able to remove the obstruction. Yay! As an interesting side note, the surgeon also told us that Lincoln's bilirubin isn't only in his skin. His internal organs, fat, tissues, etc all have a yellow tint to them. The sugeon was a little surprised I think I had never thought about it before, but it makes sense.
Recovery from kidney surgery was not easy. They removed the breathing tube a couple of days after surgery, but then Lincoln had trouble breathing so the next day they had to reintubate him (sedate him and put the breathing tube back in). Then a day later (I think it was the next day anyway...it all blends together) he went into septic shock. His blood pressure dropped very low and he had a lot of fluid in his lungs, and was generally having a hard time. Turns out he had RSV, which probably contributed at least a little to his difficult recovery. RSV is a virus that in an adult might not show up as anything more than a runny nose. But in kids, especially kids like Lincoln who are fresh out of surgery, it can lead to some pretty serious complications. He finally stabilized but it was still a couple of weeks until he was able to kick the RSV symptoms and his breathing improved. I'll take this moment to remind people that if you're not feeling well, don't risk it! Don't visit little ones and don't go into hospitals. What shows up in you as just the sniffles could be a very big deal to someone else. It's always better to be safe than sorry.
After he was recovered we finally got Lincoln on a steady nutrition plan. He was, and is still, on ng feeds and then eats whatever else he wants by mouth. A week or so after he was stable Lincoln had another cardiac cath to assess whether his heart was now strong enough for a liver transplant. He was approved for listing, but liver transplants involve clamping some major blood vessels so the old liver can be removed and that puts a lot of stress on the heart. The doctors wanted to be sure his heart could handle it. Turns out his heart function wasn't ideal. His heart was pumping more blood than it should have to, likely because of his sick liver. It was making his vessels floppy. The extra blood flow was making them expand, and then they were having trouble relaxing. So picture a balloon you've blown up then let the air out of. The balloon never quite goes back to its original shape. This is common with liver disease but unfortunately makes a transplant riskier. To try to improve his heart the plan was to take a week to give him dieretics to get some fluid off him, give him time on his steady nutrition plan, and give him extra oxygen.
However, before we could get a repeat cath, Lincoln got a bacterial infection. Another complication of liver disease. Crazy how much your liver does, huh? Since Lincoln's liver can't filter out things like bacteria he's at increase risk of a blood infection. The bacteria he got is one that's found in the stomach, it made its way to his blood stream. Luckily we found it super early and he didn't really have any of the complications it can cause. Sidebar...
From the start of our latest hospital admission John and I felt like we were struggling to be heard by the doctors and nurses. We know Lincoln and wanted to be involved in his care decisions. For example, we knew he doesn't react well to being on IV fluids. However, he kept being put on IV fluids even when John and I emphatically asked that he not be and instead be allowed to start his ng feeds. It's especially hard because the doctors rotate every week. So it felt like once we finally got through to one team and they were listening to our thoughts, they'd leave and a whole new team would come in. Finally, after weeks of pushing, we got a core team of doctors who knew Lincoln and knew us, and they are now the "go to" team for decisions for Lincoln. And they listen to us, which is awesome. Back to the bacteria...
One morning John felt that something was up with Lincoln. Lincoln just wasn't acting right, and John expressed his concerns to the doctor. Because we now have this great team who really cares about our input, the doctor listened to John and took him seriously. She ran a bunch of tests, one of which was a blood culture, to make sure nothing was wrong. That's how we caught the bacterial infection so early. The care team worked exactly like it should and Lincoln's health benefitted.
Turns out the bacteria had gotten onto Lincoln's PICC (basically a long term IV, makes it so they can draw labs and give him medicines without having to stick him every time) so they had to pull it out. Of course the cardiac cath was postponed.
Got rid of the bacteria, and that brings us to today. Lincoln is getting his repeat cath, and hopefully things look better. They originally wanted to get another liver biopsy on the same day but that didn't work out. The transplant team will go over the cath results in a meeting tomorrow and will decide if a biopsy is really necessary. He had one when he was very small, but they may need to repeat it to see if anything has changed. They want to be as sure as they can that a new liver will fix the problem.
We need this cath to show that his heart is in better shape. Othewise they won't be able to list him and accept a new liver for him. Updates to come...hopefully it won't take me 2 months to write an update this time!
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