Modern Medicine

Tonight marks two weeks of JT sleeping in his own bed! Amazing isn’t it? He continues to improve each day and he continues to generate new and interesting side effects as well. During the last two weeks, he has officially lost his hair that he hung on to for so long at the hospital. Just on his head though, I was surprised. They tell us the Cyclosporine that he is on actually causes hair growth so we need to expect it at some time. They said it usually shows up on the face and back which I thought didn’t sound so bad, but then I understood why it’s such a big deal when they reminded me that the female patients don’t care for it too much! Another side effect of the Cyclosporine has been increased blood pressure. They decided to put him on medication at our last visit since he has not shown any signs of it dropping. I was relieved to know that I did not cause it! And lastly, with this medication, it can cause damage to the kidneys and he has had to force himself to drink at least 64 ounces a day of fluids and has been taking magnesium supplements to help his kidneys flush everything out.


Lots of pills although we have managed to keep it to twice a day and it’s pretty tolerable. He takes 100mg of Cyclosporine in the form of a giant horse pill twice a day. He takes three 100mg Diflucan to prevent infection once a day. He takes three 250mg Magnesium pills twice a day for the kidneys. He takes one 5mg Norvasc for blood pressure once a day. He takes one Valtrax twice a day for mouth sores. Beginning Monday, he will add 160mg Bactrim twice a day to prevent infection and he continues his daily shot of Lovenox, the blood thinner, until we know whose blood his body is making. We visit the clinic two to three times a week and they monitor his counts very closely and have made quite a few adjustments to the dosage and amounts of medications.  Modern medicine at its best!

These are all oral meds but he has his CVL in if we need it. The CVL requires being flushed 3 times a week by us along with a syringe of Heparin (another blood thinner) to keep the lines clean. We also change the dressing once a week and change the caps to the CVL’s. I have the flush thing down, but the dressing change is still a little rattling for me. It’s very important to keep a sterile environment down to how you can put the gloves on, to how long you clean the site, to how much air you expose it to. If I’m not exact, then I run the risk of giving him a pretty nasty blood infection that I’d rather not do. I’ve had help from the nurses up until now, but tomorrow is my first time doing it alone – wish me luck!

Another interesting “ah ha” moment during one of our doctor visits was the realization that he has a brand new immune system and when he is cured and the blood counts are back to normal, he will have to go through immunizations all over again for his “baby blood”.

So where do we go from here? Basically it’s a “wait and see” game. They wait until Day 30 before running the blood test to determine whose blood JT is making. Our appointment on Friday was Day 29, so they decided to go ahead and do it early. The test takes 10-14 days to come back and it will tell us what percentage of blood is Sydney’s and what is JT’s. The hope is to have the greater percentage as Sydney. This test will be done monthly with the ultimate goal of having it be 100% Sydney at some point in the coming year. In the meantime, we continue to watch for infections, “graft versus host” disease (symptoms of his body fighting off her blood cells) and complications from the medicines. But now we get to do this from the comfort of our own home! He does not have an immune system that is able to fight infection so he is limited to his visitors, whether you are sick or have any sick family members, he cannot travel except back and forth to the hospital, he has to wear a mask outside the house, he is not able to eat any fresh fruit/vegetables, fast food or restaurant food and he has to continue his “walks” to build back up his strength. Oh yeah, and he continues his school from home!

Thank you to everyone who has been following his progress so far. We are extremely grateful for the continued prayers, cards, Facebook well wishes and words of encouragement!  Have a great week!

XO Sabrina