This is a continuation of my previous post detailing the process of my daughter receiving her kidney transplant.
Because the kidney donor lived in Chicago, the kidney had to be flown in, so my daughter's surgery didn't start until the afternoon when the plane landed at the airport. The transplant surgery lasted about 6 hours and the surgeon deemed it a success, at least from his standpoint. He has transplanted many pediatric patients and his chief worry was that the kidney would be too large and he wouldn't be able to close the abdomen. That had happened before and he didn't want to repeat the experience!
We were able to see my daughter in the PICU shortly after, but not for long. It was getting late and the nurse and doctors were quite busy making sure that everything was being done for her in that critical post-surgery phase. I was feeling a little paranoid about her sodium levels because the nephrologist had told me about two previous patients whose sodium levels had gotten too low too fast and they had died. Putting an adult kidney into a small child is a little tricky because the new kidney has to get used to a much different body. Kidneys are very smart organs and incredibly complicated the way they know how to balance all the different electrolytes and fluids in your body. But when they're first transplanted, they're kind of "stupid". The pediatric patient has to be given huge amounts of fluid because the adult kidney is used to more fluids and the electrolytes have to be watched very closely. For example, the adult kidney is used to getting rid of sodium at a different rate in a bigger body and getting rid of too much sodium (or any electrolyte) causes big problems.
Another concern was that our daughter would have a hard time coming off the ventilator, because of her weak lungs. Fortunately, that also was not a problem. She did end up staying in the PICU longer than we expected because her blood pressure wouldn't stay high enough. She actually had a good blood pressure for a normal patient but kidney patients are supposed to have higher blood pressure to make sure that the new kidney gets enough blood flow. To keep her blood pressure up, they had to give her dopamine and getting that drug requires closer monitoring, so she had to stay in the PICU.
Finally the doctors decided her blood pressure was high enough since it was now less critical and they sent us upstairs to the ICS unit which is for immuno-compromised patients. Getting a transplant means you are now immune-compromised for the rest of your kidney's life. You are given large doses of immuno-suppressant drugs at the time of transplant to keep your body from rejecting the strange kidney and then gradually, over the next several months, you taper down to a maintenance dose. But you are never supposed to stop taking it completely. Sometimes patients will stop taking the drugs and a rare patient will not have any ill effects. But most patients suffer a pretty bad rejection so you really don't want to take the risk to see if you're that one patient who doesn't have to take the anti-rejection drugs.
The PICU is a pretty difficult place to stay with your child. It's very noisy and not very private and they really don't encourage parents to stay overnight. There are a few parent bedrooms near the PICU waiting room but those beds are reserved for the parents of children in extremely critical condition--the children who are not likely to survive. My daughter hated it when we had to leave her at night. She is normally a pretty happy and easy-going child but the whole transplant/hospital experience was really hard for her and the only thing that kept her happy was non-stop movie watching. She slept very poorly so she was constantly tired. She hated the constant needle poking. She kept asking me when she could go home and who could blame her? It was really hard to try to help her feel better. It was made more difficult by the fact that I was still recovering from my surgery and I wasn't supposed to lift her for six weeks.
The ICS was a slight improvement because now I could stay with her overnight. This meant my sleep was worse at night but I didn't have to say goodbye and I could be her advocate more. Unfortunately, this was not easy to do because the nurses still had to take her blood for frequent testing and do blood-pressure checks every three or four hours, even in the middle of the night. I would BEG the nurse not to come in to check her blood pressure in the middle of the night because I could guarantee that: 1. My daughter would wake up. 2. She would start screaming. 3. Because she was screaming, the blood pressure check would not work or the numbers would be really high and inaccurate. So her sleep would be interrupted, she'd be miserable, and they wouldn't get the numbers they wanted. But, the nurse had an obligation to follow the doctor's orders so they kept doing it with exactly the outcome I predicted. Finally, on our last night, I got smart and asked the doctor if we could forego the middle-of-the-night checks to let her sleep and actually HEAL since her blood pressure was fine when they actually got an accurate blood pressure. And he agreed to it. A full night of sleep for her was so great.
Another problem (am I whining too much here? I just want to give an accurate picture of how the hospital can be hard for small children) was boredom. You can only watch 101 Dalmatians and Winnie-the-Pooh so many times. But we actually had another problem we had to deal with. Because my daughter's new kidney was taking up most of the available space in her abdomen, the kidney was pushing on her lung cavity and her lungs did not have as much space as they wanted. Also, she was getting a lot of extra fluids and lungs don't like that so much. So she was on oxygen (after a year of being off) and instead of going down on oxygen, she was going up. After much discussion, we decided the problem was that lying in bed watching movies all day, was not helping her lungs to expand like they needed to. She was taking too many small shallow breaths. She needed to get up and walk around and breathe more deeply. This was complicated. She had oxygen, she had her feeding tube, and she had an IV. And we were supposed to stay in the ICS ward so she wouldn't be exposed to all the hospital germs. So we would get all her gear together and walk down the hall 50 feet to the ICS playroom which was quite small, and we would play there a little while and then we would walk back. Not a lot of exercise.
Finally, the doctor said we could go out of the ICS and walk up down the long 4th floor hallway, if she wore a mask. She wouldn't wear a mask. I'm not sure what her problem was with masks (maybe she was scared of them?) but she had a fit if we tried. So the doctor said she didn't have to wear a mask. So we did the long hall a few times. Fortunately we were almost ready to go home. She ended up staying in the hospital a total of just 11 nights for the transplant. It helped that our daughter had a feeding tube because a major challenge for transplant patients is drinking enough fluids. If you're not drinking enough, you don't go home or else you get a temporary feeding tube. We also were very accustomed to oxygen since she had spent a majority of her life on oxygen so we didn't need to be trained on that.
One funny thing happened. That last day in the hospital, a therapy dog came by with its handler and Camille was happy to have the dog visit. But, as my husband and I sat there and watched in horror, the dog licked her right on the mouth! My daughter who was so immuno-compromised that I was supposed to keep her away from almost everyone, had been licked right on the mouth by a dog with who knows what germs!
But, despite that worry, we were so happy to be going home! It was wonderful. Unfortunately, it was short-lived.
To be continued...
Because the kidney donor lived in Chicago, the kidney had to be flown in, so my daughter's surgery didn't start until the afternoon when the plane landed at the airport. The transplant surgery lasted about 6 hours and the surgeon deemed it a success, at least from his standpoint. He has transplanted many pediatric patients and his chief worry was that the kidney would be too large and he wouldn't be able to close the abdomen. That had happened before and he didn't want to repeat the experience!
 |
| On her way to surgery. She had no idea what she was in for. |
We were able to see my daughter in the PICU shortly after, but not for long. It was getting late and the nurse and doctors were quite busy making sure that everything was being done for her in that critical post-surgery phase. I was feeling a little paranoid about her sodium levels because the nephrologist had told me about two previous patients whose sodium levels had gotten too low too fast and they had died. Putting an adult kidney into a small child is a little tricky because the new kidney has to get used to a much different body. Kidneys are very smart organs and incredibly complicated the way they know how to balance all the different electrolytes and fluids in your body. But when they're first transplanted, they're kind of "stupid". The pediatric patient has to be given huge amounts of fluid because the adult kidney is used to more fluids and the electrolytes have to be watched very closely. For example, the adult kidney is used to getting rid of sodium at a different rate in a bigger body and getting rid of too much sodium (or any electrolyte) causes big problems.
Another concern was that our daughter would have a hard time coming off the ventilator, because of her weak lungs. Fortunately, that also was not a problem. She did end up staying in the PICU longer than we expected because her blood pressure wouldn't stay high enough. She actually had a good blood pressure for a normal patient but kidney patients are supposed to have higher blood pressure to make sure that the new kidney gets enough blood flow. To keep her blood pressure up, they had to give her dopamine and getting that drug requires closer monitoring, so she had to stay in the PICU.
Finally the doctors decided her blood pressure was high enough since it was now less critical and they sent us upstairs to the ICS unit which is for immuno-compromised patients. Getting a transplant means you are now immune-compromised for the rest of your kidney's life. You are given large doses of immuno-suppressant drugs at the time of transplant to keep your body from rejecting the strange kidney and then gradually, over the next several months, you taper down to a maintenance dose. But you are never supposed to stop taking it completely. Sometimes patients will stop taking the drugs and a rare patient will not have any ill effects. But most patients suffer a pretty bad rejection so you really don't want to take the risk to see if you're that one patient who doesn't have to take the anti-rejection drugs.
The PICU is a pretty difficult place to stay with your child. It's very noisy and not very private and they really don't encourage parents to stay overnight. There are a few parent bedrooms near the PICU waiting room but those beds are reserved for the parents of children in extremely critical condition--the children who are not likely to survive. My daughter hated it when we had to leave her at night. She is normally a pretty happy and easy-going child but the whole transplant/hospital experience was really hard for her and the only thing that kept her happy was non-stop movie watching. She slept very poorly so she was constantly tired. She hated the constant needle poking. She kept asking me when she could go home and who could blame her? It was really hard to try to help her feel better. It was made more difficult by the fact that I was still recovering from my surgery and I wasn't supposed to lift her for six weeks.
The ICS was a slight improvement because now I could stay with her overnight. This meant my sleep was worse at night but I didn't have to say goodbye and I could be her advocate more. Unfortunately, this was not easy to do because the nurses still had to take her blood for frequent testing and do blood-pressure checks every three or four hours, even in the middle of the night. I would BEG the nurse not to come in to check her blood pressure in the middle of the night because I could guarantee that: 1. My daughter would wake up. 2. She would start screaming. 3. Because she was screaming, the blood pressure check would not work or the numbers would be really high and inaccurate. So her sleep would be interrupted, she'd be miserable, and they wouldn't get the numbers they wanted. But, the nurse had an obligation to follow the doctor's orders so they kept doing it with exactly the outcome I predicted. Finally, on our last night, I got smart and asked the doctor if we could forego the middle-of-the-night checks to let her sleep and actually HEAL since her blood pressure was fine when they actually got an accurate blood pressure. And he agreed to it. A full night of sleep for her was so great.
 |
| One benefit of the transplant was that right away she was a lot more interested in food. Food tastes bad to people with poor kidney function. |
Another problem (am I whining too much here? I just want to give an accurate picture of how the hospital can be hard for small children) was boredom. You can only watch 101 Dalmatians and Winnie-the-Pooh so many times. But we actually had another problem we had to deal with. Because my daughter's new kidney was taking up most of the available space in her abdomen, the kidney was pushing on her lung cavity and her lungs did not have as much space as they wanted. Also, she was getting a lot of extra fluids and lungs don't like that so much. So she was on oxygen (after a year of being off) and instead of going down on oxygen, she was going up. After much discussion, we decided the problem was that lying in bed watching movies all day, was not helping her lungs to expand like they needed to. She was taking too many small shallow breaths. She needed to get up and walk around and breathe more deeply. This was complicated. She had oxygen, she had her feeding tube, and she had an IV. And we were supposed to stay in the ICS ward so she wouldn't be exposed to all the hospital germs. So we would get all her gear together and walk down the hall 50 feet to the ICS playroom which was quite small, and we would play there a little while and then we would walk back. Not a lot of exercise.
Finally, the doctor said we could go out of the ICS and walk up down the long 4th floor hallway, if she wore a mask. She wouldn't wear a mask. I'm not sure what her problem was with masks (maybe she was scared of them?) but she had a fit if we tried. So the doctor said she didn't have to wear a mask. So we did the long hall a few times. Fortunately we were almost ready to go home. She ended up staying in the hospital a total of just 11 nights for the transplant. It helped that our daughter had a feeding tube because a major challenge for transplant patients is drinking enough fluids. If you're not drinking enough, you don't go home or else you get a temporary feeding tube. We also were very accustomed to oxygen since she had spent a majority of her life on oxygen so we didn't need to be trained on that.
One funny thing happened. That last day in the hospital, a therapy dog came by with its handler and Camille was happy to have the dog visit. But, as my husband and I sat there and watched in horror, the dog licked her right on the mouth! My daughter who was so immuno-compromised that I was supposed to keep her away from almost everyone, had been licked right on the mouth by a dog with who knows what germs!
 |
| Looking back at the pictures, I'm realizing there were a few happy moments!. |
But, despite that worry, we were so happy to be going home! It was wonderful. Unfortunately, it was short-lived.
To be continued...
Comments
Post a Comment