We successfully made it out of the hospital on Tuesday. It wasn't easy though. J's ng tube clogged at 3am and I worked on trying to unclog it until he woke up at 8am. We finally gave up and just had to pull it out. That tube had lasted about 2 months. The nurses tried getting a new one in 3 different times, one of the attempts lasting for 45 minutes, but he was clamping down his throat and gagging so it kept getting stuck in his throat. It was heartbreaking. Jacob even was saying he would just take his medicine in his mouth, which I was willing to let him try, but after another 45 minutes he had only been able to swallow 3-4 of his 15 morning meds. It just wasn't going to work. Before the third attempt, they gave him a dose of adivan to relax him, but it didn't help. They tossed around the idea of doing it under sedation, but that would mean we'd have to stay another night because he'd have to be npo. Around 1:00pm, the two nurses who had been trying finally gave up and called in a third. She was able to get it in on her first try. It was a huge relief to get it in. Hopefully by the time this ng tube wears out or clogs, he will only be on a few meds and be able to move on without one.
It will be six months, almost to the day, when we will be heading home to be reunited as a family. Our last appointment up here should be July 30th. We are making preparations to fly home on July 31st. We already have an appointment scheduled with Jacob's home doctor for August 1st.
Jacob's Epstein Barr Virus load has come back undetectable the last couple of times, so it seems he's got that under control. I'm so glad he didn't have to get treated for that. His latest run on the adenovirus came back at 8,300. Can you believe it was 9.4 million just a few weeks ago? The infectious disease doctors say we can stop treating it when it drops under 10,000, but his out patient dr wants to do one more cidofovir treatment on Monday, then hopefully he will be done with that. I worry about his kidneys.
Considering everything that has happened in the past month, I consider it a miracle that he is well enough to go home at this point. The doctors here have been incredible. Their expertise and experience is beyond anything we ever could've hoped for. I'm so grateful we came here for Jacob's transplant. I am excited to go home, but sad to have Jacob leave their care.