It’s been particularly hard to blog these past three weeks since we found out the date of the surgery. Its so big that I don’t know what to feel and don’t seem to have the capacity to hold all these feelings anyway. So, I have spent the last three weeks thinking about everything but the surgery. Its hard to list all the things that I have let swirl around in my brain, taking up the limited amount of emotional capacity I have which tends to leave me with a lot of unfinished tasks and awkward conversations.
The date has finally been set. On NOVEMBER 27, the day before thanksgiving, Isaac will be getting a new kidney!
After a month of waiting for the final blood tests to come in, Tim has been cleared to be the donor.
I was dropping my ballot off today at the library because if I don’t do it now, I will have extra paper sitting on my counter and will probably forget to vote next week.
In the library parking lot there was one of “those” vans. You know the type, peppered with marijuana leaf and Grateful Dead stickers, and a huge Harley Davison sticker that spans the entire hood. Now I know your picturing something along the lines of a vintage VW bus with a pop-top. But it was a minivan, dirty cherry red complete with a thick white stripe down the side. It had this great bumper sticker on it that said “CONSCIOUSNESS the confusion that happens between naps”
Isaac was hospitalized last Wednesday. Basically, we have had a really difficult time keeping him hydrated, he has had an ear infection for at least 9 weeks now, and full blown eczema covering his entire body for about as long. He just doesn't have it in him to fight this much infection. This is the same thing he was hospitalized for last month. Last month they released us after one day without much improvement. We are going to keep him there a bit longer to make sure he is in really good shape before we bring him home.
As of today, he is doing pretty well. His hydration is stable, and he has shed about 3 layers of skin. The healthy skin is finally made it to the top and all of his scratch marks are starting to heal.
Dr. Symons, Isaac’s Nephrologist (kidney doctor) handed me Isaac’s referral to the transplant clinic two days after Isaac turned a year old. We had been waiting for that packet of joy for 9 long months. We were told that his transplant would happen between 18-24 months but most of the time they happened closer to 18 months.
Isaac was done with his testing by the time he was 14 months old. We wanted to start testing right away because the donor testing can take anywhere from 2-6 months. However, we were told that his small size was an issue and they wouldn’t let us start our donor testing. If we were approved too early, we would have to repeat some of the testing. We finally got our referrals to start testing in mid-June (Isaac was 16 months old).
Our meeting with Dr. Healey went well. We heard all about how they are going to jam a 9-11 cm long kidney up underneath Isaac's liver and behind his peritoneum and intestines. I guess it's going to be more protected than I thought. That's good because otherwise this kid is going to be wearing his kidney shield even when he sleeps. Right now Isaac's favorite sound to make is that of a Mari Warrior and he purposefully tries to head dive off the furniture, sometimes backwards.
I wasn't joking about the kidney shield. Isaac will get fitted for a plastic shield that wraps around the abdomen on the side of the transplant to protect it while he plays (or participates in some benign activity that Isaac could get injured doing when his genetic disposition and personality are factored in.)
Tuesday September 16 is a big day for our family. We are meeting with Dr Healy, Isaac's transplant surgeon. Dr Healy has reviewed Tim's ultrasound and will look at Isaac's body to make a determination as to whether there is enough real estate for Tim's kidney to fit in Isaac. We are excited to feel like things are progressing and pray that Tim is compatible size-wise. If Tim is compatible, he will proceed with some further testing.
Where to begin? I guess I will begin with this morning. Today Isaac is again dehydrated due to the warm weather, being on antibiotics for an ear infection (which gives him diarrhea); and having a slightly elevated temperature from either the cold he caught or the new teeth he has coming in. Since he is dehydrated, his rash, which covers his whole body other than coin size circles on his cheeks, is now flaring up again. The incessant itching makes him upset which then causes him to vomit…thus leading to more dehydration. I am just hoping that the antibiotics do not cause severe diaper rash over the top of eczema rash like they did last time.