This is a continuation of my previous two blog posts...
So finally we went home, ecstatic to be there. It was great to have everyone all home together again. Things went well that weekend but on Tuesday morning, our daughter had a low-grade fever. We were due in the transplant clinic that day so I took her up thinking we would stay overnight. I was right. We stayed so they could watch her and try to figure out what was wrong. But they never did so we went home the following afternoon.
Meanwhile her feeding tube was leaking horribly ever since the transplant and we couldn't figure out why. It was causing me huge amounts of stress because I was worried that her medicine was leaking out of her stomach. I lost more than a few hours of sleep worrying about that. Fortunately the problem improved when my husband figured out that the G-button balloon needed more water.
Our next problem was her lungs. She was needing a LOT of oxygen and we were pretty concerned. He took her in, they did an x-ray, the lungs looked "wet" so they told us to decrease her fluids by just a few ounces a day and things did improve...until she got terrible diarrhea. She already had a terrible diaper rash that nothing helped.
Then I discovered that instead of giving her an anti-fungal medicine, we had been giving her water! It was very embarrassing to me. Post-transplant, to prevent illness, we were actually giving her six different medications. She was getting two immuno-suppressants plus an anti-viral medication, an anti-fungal, an antibiotic, plus iron supplements. Plus her tube feedings around the clock. It was a little too much for my brain. Giving her the right medicine definitely helped the diaper rash and the diarrhea didn't last very long. But it was just one complication after another. We spent so much time at the hospital or doctor or lab; I was just not seeing the benefits of the transplant yet.
Shortly after the diarrhea episode (which I suspect led to what happened next), one Saturday morning she woke up with a fever of 102 degrees. The doctor said to take her to the emergency room at the children's hospital. They diagnosed her with a UTI, also known as a bladder infection and prescribed an antibiotic. But by the time she got home, her temperature was really high. We decided to have faith in the medicine and put her to bed. Early in the morning, her temperature was 105 degrees and we were very concerned. We called the doctor who told us to get her to the hospital as fast as possible. He was worried about "warm shock" which can cause organs to start shutting down. As he spoke, he checked the computer and saw that the urine culture had grown out a less common bacteria which required a different antibiotic than the one prescribed so her medicine wasn't doing her any good.
We rushed her up and they immediately started her on the right antibiotic and also gave her a large amount of fluids to help the blood vessels handle the kidney infection. Thankfully she improved quickly. At the time of transplant, the surgeon had put in a stint. The stint had probably helped aggravate the infection so the doctor decided she needed to stay in the hospital on the IV antibiotics for several days and then get the stint removed so this would no longer be a problem. Counting my own hospital stay, my daughter and I had spent 23 days in the hospital in less than two months. The social worker had warned us that it might be like this, but I was feeling pretty discouraged.
Not only did we hate being at the hospital but the rest of my family was getting a little short-changed. Things weren't happening at home like they needed to because I was gone. Also, we wanted to have a family vacation but we really couldn't go anywhere because of our medical problems. It was now the end of July and the summer would be over soon. We decided the best we could do was a "staycation". So we planned activities that were within an hour or two of our house and we were gone most of the day, but we came home every night to sleep in our own beds. It ended up being a fun experience and we even went camping at a nearby campground on the last night. The kids loved it.
Fortunately the scary episode ended up being our last time in the hospital. We still had to go to the transplant clinic every week and our daughter had to get blood work done twice a week but there were no more hospital stays.
So finally we went home, ecstatic to be there. It was great to have everyone all home together again. Things went well that weekend but on Tuesday morning, our daughter had a low-grade fever. We were due in the transplant clinic that day so I took her up thinking we would stay overnight. I was right. We stayed so they could watch her and try to figure out what was wrong. But they never did so we went home the following afternoon.
Meanwhile her feeding tube was leaking horribly ever since the transplant and we couldn't figure out why. It was causing me huge amounts of stress because I was worried that her medicine was leaking out of her stomach. I lost more than a few hours of sleep worrying about that. Fortunately the problem improved when my husband figured out that the G-button balloon needed more water.
 |
| This was at a family reunion a few weeks after transplant and we had to try to keep her away from all her little cousins. |
Our next problem was her lungs. She was needing a LOT of oxygen and we were pretty concerned. He took her in, they did an x-ray, the lungs looked "wet" so they told us to decrease her fluids by just a few ounces a day and things did improve...until she got terrible diarrhea. She already had a terrible diaper rash that nothing helped.
Then I discovered that instead of giving her an anti-fungal medicine, we had been giving her water! It was very embarrassing to me. Post-transplant, to prevent illness, we were actually giving her six different medications. She was getting two immuno-suppressants plus an anti-viral medication, an anti-fungal, an antibiotic, plus iron supplements. Plus her tube feedings around the clock. It was a little too much for my brain. Giving her the right medicine definitely helped the diaper rash and the diarrhea didn't last very long. But it was just one complication after another. We spent so much time at the hospital or doctor or lab; I was just not seeing the benefits of the transplant yet.
 |
| Making stackers like this one was an Eagle project my son did that summer--a few other things got done besides the transplant! |
Shortly after the diarrhea episode (which I suspect led to what happened next), one Saturday morning she woke up with a fever of 102 degrees. The doctor said to take her to the emergency room at the children's hospital. They diagnosed her with a UTI, also known as a bladder infection and prescribed an antibiotic. But by the time she got home, her temperature was really high. We decided to have faith in the medicine and put her to bed. Early in the morning, her temperature was 105 degrees and we were very concerned. We called the doctor who told us to get her to the hospital as fast as possible. He was worried about "warm shock" which can cause organs to start shutting down. As he spoke, he checked the computer and saw that the urine culture had grown out a less common bacteria which required a different antibiotic than the one prescribed so her medicine wasn't doing her any good.
We rushed her up and they immediately started her on the right antibiotic and also gave her a large amount of fluids to help the blood vessels handle the kidney infection. Thankfully she improved quickly. At the time of transplant, the surgeon had put in a stint. The stint had probably helped aggravate the infection so the doctor decided she needed to stay in the hospital on the IV antibiotics for several days and then get the stint removed so this would no longer be a problem. Counting my own hospital stay, my daughter and I had spent 23 days in the hospital in less than two months. The social worker had warned us that it might be like this, but I was feeling pretty discouraged.
 |
| She got to go on the jet-ski, oxygen and all! |
Not only did we hate being at the hospital but the rest of my family was getting a little short-changed. Things weren't happening at home like they needed to because I was gone. Also, we wanted to have a family vacation but we really couldn't go anywhere because of our medical problems. It was now the end of July and the summer would be over soon. We decided the best we could do was a "staycation". So we planned activities that were within an hour or two of our house and we were gone most of the day, but we came home every night to sleep in our own beds. It ended up being a fun experience and we even went camping at a nearby campground on the last night. The kids loved it.
Fortunately the scary episode ended up being our last time in the hospital. We still had to go to the transplant clinic every week and our daughter had to get blood work done twice a week but there were no more hospital stays.
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