Day 18

Well today Shaney finally got to come home for the day! It was a moment he had been impatiently waiting for with a hope to have a cuddle on the lounge. The only problem was, I had to work:(

So I managed to organise with the nurses last night to have his Tacro (previously cyclosporin or immunosuppresant) put through early in the morning (it usually goes through over 8-10hrs) so it would be completed by lunchtime. Kerry, Shane's mum, was there by lunch ready to bring him home for the day.

By the time I got home, Shane was bored! He had already enjoyed a bath and the lounge, and that only left some cuddling on his list.

Cuddling on the lounge was sooooooooooo nice. I miss his hugs so much as well as the ability to touch him with my bare hands (if you remember I always have to wear gloves when in his room). If you're not in the habit of practicing gratitude, the ability unconditionally hug your loved ones is something that shouldn't be taken for granted.

After a quick cuddle, I dished him up some dinner, only to have him vomit it back up again, as well as just about everything that he had eaten today. Do you remember how I said that I was no longer a sympathy spewer? Well, today really challenged that constitution. I was only half way through my meal and it took all my strength to finish it!

It was so nice be be home in the afternoon watching my birdies getting settled for the night, and feeling the breeze flow through the house. You are so insulated from the outside world while in hospital, you forget what outside life feels like.

After another snuggle, it was time to head back to hospital. I can't tell you how hard it is to get up and go, and how tempting it is to go anywhere else but hospital. We stayed our course.

Upon arrival back at the hospital, the nurses had some more bad news for us. A blood test today revealed the reactivation of the cytomegalovirus (CMV). CMV is a virus that 80% of Australian's have had, and both Shane and his donor were positive for CMV. This was one of the reasons this donor in particular was chosen. CMV can lay dormant in the body, and its only a situation like this that can cause it to reactivate. Symptoms of this virus include fatigue and cold and flu like symptoms. This explains why Shane has been so strange the last few days. He's been so fatigued and emotional, and this could all be related to CMV. This also means he now starts a new medication (another one) called Gancyclovir. This medication is also cytotoxic and needs to be treated with special care, as evidenced below:

  The first few days of treating CMV requires IV treatment. The nurses said that Shane could go home with a CAD pump (to administer the treatment overnight at home), but the issue his the Doctors want Shane to have his Hickman line out prior to his leaving hospital. This is due to the bugs found over the last few weeks. They were planning on putting in a PICC line (in his arm) a few days after discharge to give the body time to remove the bugs, before putting in a new line. 

So, today the Doctors were discussing discharge for tomorrow, however, I don't think that will be likely. Not only that, but I wore a low neck shirt this afternoon and Shaney didn't even notice. He's so not ready to come home yet! 

xx