Last week Jim was diagnosed with uremia. That means he hasn't been getting dialyzed well enough and the toxins in his body were making him very tired and lethargic. He was increased to 9.5 hours on his cycler at night and started a manual exchange in the afternoon. He was also given an iron infusion. This all seemed to help and he was much more alert. Back on track with walking/therapy.
Monday he experienced diarrhea and by Wednesday bad belly pain. Draining some fluids which was cloudy it was determine he now has peritonitis which is an inflammation in his peritoneal cavity. Went to the clinic and they drained him and dosed him with high doses of antibiotics. Pain still so bad we went to Barnes. Finally admitted and started iv pain meds. Pain is under control but still having cloudy bags. Waiting for results of cultures to determine what type of infection he has.
Hopefully this is the last of bumps in the road.
Friday, February 28, 2014
Sunday, February 16, 2014
Good News/Bad News
The good news is that Jason doesn't have to have surgery for now. Dr. Dowling said the lesion (tumor) seems much smaller than what was on the original MRI. Since he seems to be responding well with the medication, for now he doesn't feel that surgery is necessary. He goes back in 3 months for another MRI to see if the tumor has grown any and at that time he will reevaluate the need for surgery. Yay!!!
Jim's news, however, wasn't as good. The transplant team wanted to see Jim before rescheduling surgery. Jim is still very week, walking with a walker and seems very fatigued. They want him to get stronger before the surgery and told him to keep working on his therapy and come back in a couple months. While this wasn't the news we were hoping for, in our heart of hearts we too feel it's the best for now. It was just extremely hard to take given it was February 13th...the day he was scheduled for the transplant.
My thoughts...I'm so very grateful that my son doesn't have to have brain surgery. I also know that Jim needs to be healthier to go through a major operation. It's just hard when it seemed so close. This is just another detour that we will deal with.
Jim's news, however, wasn't as good. The transplant team wanted to see Jim before rescheduling surgery. Jim is still very week, walking with a walker and seems very fatigued. They want him to get stronger before the surgery and told him to keep working on his therapy and come back in a couple months. While this wasn't the news we were hoping for, in our heart of hearts we too feel it's the best for now. It was just extremely hard to take given it was February 13th...the day he was scheduled for the transplant.
My thoughts...I'm so very grateful that my son doesn't have to have brain surgery. I also know that Jim needs to be healthier to go through a major operation. It's just hard when it seemed so close. This is just another detour that we will deal with.
Friday, February 7, 2014
There's no place like home
After 2 weeks at rehab, Jim finally gets to go home tomorrow.
He has reached all his goals in both occupational and physical therapy. His walking with the walker is going great and he continues to improve his distance each day. He will continue therapy at home when a home health care therapist will come twice a week.
After being away from home for an entire month, he is beyond words about going home. I'm taking 1 more week of FML next week to keep him on track then hoping to get back to work and some normalcy.
We will contact the transplant team next week and tell them of his improvement with hopes of getting back on track. I have always been a believer that "things happen for a reason". Not quite sure why Jim wasn't suppose to have transplant next week, but that's totally out of our hands. I know this extra time will in the end of it all be good for him.
Jason has appt. with his neurosurgeon on Thursday we hope with a decision for his treatment. Hoping I won't have the both of them in the hospital at the same time as we did in January, but if so...we will get through it.
He has reached all his goals in both occupational and physical therapy. His walking with the walker is going great and he continues to improve his distance each day. He will continue therapy at home when a home health care therapist will come twice a week.
After being away from home for an entire month, he is beyond words about going home. I'm taking 1 more week of FML next week to keep him on track then hoping to get back to work and some normalcy.
We will contact the transplant team next week and tell them of his improvement with hopes of getting back on track. I have always been a believer that "things happen for a reason". Not quite sure why Jim wasn't suppose to have transplant next week, but that's totally out of our hands. I know this extra time will in the end of it all be good for him.
Jason has appt. with his neurosurgeon on Thursday we hope with a decision for his treatment. Hoping I won't have the both of them in the hospital at the same time as we did in January, but if so...we will get through it.
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