More Bumps in the Road

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.

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.

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.

Jim Update

Finally after 2 weeks in the hospital Jim was released yesterday.  However, homebound we're not.  Mobility in his right knee keeps him from coming home. So our new home this week is the Barnes Jewish extended care facility in Clayton for rehab on his knee. More intensive therapy hopefully will get him moving and capable of walking unassisted again. It's been since November 23 that he was capable of doing that.  Too long. Contacted transplant team to let them know and transplant will most likely be pushed back another week.  That's ok, by then he should be up and walking and in much better shape for surgery.

Jason continues running tests but so far no more seizures have occurred. Thanks to family and his friends, the not driving thing hasn't been much of an issue. 

Again thanks everyone for your prayers and support.

Svoboda Family Update

Today the doctor drained Jim's knee. He had immediate relief. He was able to bend his knee and get up and walk with assistance. His pneumonia is better. Finally on the right track. Tomorrow he can once again start the physical therapy so badly needed to start walking unassisted again.

For now the transplant has been pushed back 1 week. He has to be completely off antibiotics before they can proceed with his preparation. So for now we are shooting for February 20th. Keep thinking good thoughts.

On Jason....today we say Dr. Joshua Dowling at Barnes. He basically said the same thing that Dr. Jaffri at Memorial has said. He has a low grade tumor on the right front lobe of his brain. Dr. Dowling wants to do another MRI on February 3rd to see if there is any change and to get a better idea for surgery. He currently is on anti-seizure meds.

For 6 months he cannot drive, take baths, ride bikes or do anything that may put him in danger. He is feeling fine, worried about Jim but is strong. Keep him in your prayers as well.

My thoughts.....God never gives us more than we can handle. However, I'm just about at my limits. Thanks everyone for your prayers and support. As a family we will get through this....

So Far 2014 Sucks......

33 more days until scheduled transplant.
33 more days to get Jim up and walking
33 more days to get Jim's pneumonia cleared up.
33 more days to get Jim's cysts to stop bursting.
33 more days to get his blood sugar under control.

Seems a lot to do but we WILL get it done. Jim is currently hospitalized with pneumonia in his upper left quadrant. Getting breathing treatments and antibiotics. Tummy pain from bursting cysts. Physical therapy to get him up steady on his feet and walking without a walker.

His first appointment for transplant preparation is next Friday. Doing a stress test, EKG and chest x-ray. Hoping we're still on schedule to get this done.

Only time will tell.

To top off 2014, Jason is also in the hospital after having 2 seizures at home and 1 in the ER. Scheduled for a spinal tap tomorrow.

Oh....and yes we had 13" of snow. Hoping 2014 improves quickly.

February 13th here we come...

We just received confirmation that transplant has been set for Thursday, February 13th!!!

39 days and counting.

Will keep you posted as developments occur.

All we know now is that Jim has to be on anti-rejection medication for 4 weeks prior to surgery.

Thanks to all for love, prayers and support.