Planning for the big day

Whoa...time is flying. Just as the holidays are over, it's the typical struggle back into work and school routine. I was enjoying the help and days off but now we are back in the scheduling nightmare of getting everything done and everyone where they need to be. Top that off with the hundreds of details to be planned out for the following week which is the transplant surgery! YES one week from tomorrow Bruce will get a kidney. It brings up many complicated emotions that I can't express. I am excited, anxious, worried, skeptical, scared, ...you name it! I feel like any second someone is going to say- sorry, not going to happen. I want to look forward to a more normal life but too scared to believe it.

Sean had his transplant last Tuesday at Vanderbilt and was released on Friday with the donor as well! They told him to expect just 3 days in hospital, which I have never heard from anyone else in all of my reading blogs and information about kidney transplants. He is doing well though, he had a few scary things happen so far but overall things look excellent for him. From what I know, his donor Jeremy did well enough to get out and then travel to Orlando to stay with parents to recover before going back to California. The whole thing is a miraculous event.

Bruce's health seems stable the past 3 days. He caught the throat infection Beck had with the soreness and a fever. He got an antibiotic immediately and felt better within 2 days of first getting symptoms. The Dr. said he is not getting enough clearance and needs even MORE time on dialysis machine. (he's already at 5 hours). But he's not going to increase it since transplant is so close. His BP was still very very high but they dont want to throw a new drug in the mix of all the others at this point. However, on Friday Jan 1st, when he got to dialysis his BP was low and dialysis dropped it even lower! That is the norm for most people on hemo dialysis but that has never happened to Bruce. The headaches and nausea still occur and he has times where he is very ill. It's up and down all the time. A transplant cannot come soon enough.

I called 2 people at Lifelink who answered my questions. It was a quick conversation and they were very helpful. Then right after that the Head Transplant Coordinator called me to ask if there is anything she can answer or help us with. That was very nice but by that time I already had all questions answered. It just made me wonder why our own transplant coordinator did not do that or even answer things when Bruce called many times. He was told to just wait on the info to come in the mail. Which was the one sheet of the schedule for pre-op visit. It's just a little odd. In the beginning of this process, I was thrilled with how informative, professional, and on top of everything they were as a whole organization. It's good to see that again.

I wish money was no object and I could take 2 months off, rent a place, take the kids, my parents, and the animals with me to Tampa and we see Bruce through this process, but that is not the case for us. That means a scheduling fiasco for me and the family. The few days before the surgery are a real issue since Bruce can't drive, I have to take him to Tampa on Monday night, then come back home to care for kids and work until Wednesday night. Bruce needs dialysis here early on Monday and in Tampa somewhere on Wednesday. We have been trying to get that verified for over a week and still no luck. Our insurance says the social worker at the dialysis center should do this, but she is MIA. Literally now. Bruce has only seen her once in 6 months and now she just had a baby. Why isn't someone taking her place? I don't get why things have to be so difficult.

And of course there has to be 3 vacation days and 3 1/2 days in the month of January for Beck's elementary. They aren't on a year round schedule, but every month there are days off. Some of them are hurricane make up days. Both my parents are working and I have to continue to work. The post transplant visits for Bruce- driving 2 hours to Tampa 3 times a week for a month - are going to be impossible. I just pray he does well and they let him do some visits here at his dr. in Naples.

I have started making lists of all that needs to be done and its not looking good for me for the next week. But it's all for something that is hopefully going to change his life.

1 comment:

  1. thinking about you all and hoping you are able to get it all done.