Thursday, November 4 - Day +22

After my last entry Monday night, Collin's fever increased a bit, and he was put back on antibiotics. He also had a few episodes of diarrhea over night, so another stool culture was sent, which came back positive for c-diff yet again (he just got over his third bout of c-diff, this is now the fourth time he's had it). All of the blood cultures came back negative for infection, so the antibiotics were stopped yesterday.

On Tuesday, an ophthalmologist came to look at Collin's right eye because the corneal abrasion didn't seem any better even though he had been on the antibiotic eye ointment for seven days. Since the eye does not blink or close all the way when Collin is sleeping, it has become too dry to heal, despite using ointment and eyedrops to lubricate it. The abrasion is pretty deep, and if it doesn't heal soon, it will start to develop scar tissue that will permanently impair the vision in that eye. The ophthalmologist that came Tuesday wanted to consult the other ophthalmologist that has seen Collin in the hospital before making a decision about how to treat the abrasion because of the turning in of the same eye. Both doctors have examined Collin, and have decided to suture his right eyelid part-way closed to allow the abrasion to heal. By closing the eyelid halfway, there will still be a tiny space at the inside corner of the eyelid for the eye to see out of; that way when we patch Collin's left eye, the right eye will still be able to see enough that Collin's brain won't ignore the eye, so that there will be some functional vision left when the surgery is done to help the eye turn back out (unfortunately that surgery cannot be done at the same time, because it causes inflammation which won't help the abrasion heal, and since Collin's immune system is still weak, any non-critical procedures must wait due to risk of infection). If suturing the eye partly closed is not enough to help the abrasion heal, they may have to sew the eye completely closed; but if that happens, there will be no vision left in the eye once the sutures are removed; the brain will ignore the eye after just a few weeks of not being used at all. Corneal abrasions are very painful, and Collin has been very bothered for over a week now. In order to keep him from rubbing his eye, he now has immobilizers on both arms that keep his elbows straight so that he can't reach his eye with his hands. Of course he can't do much of anything else either with the immobilizers on, and I don't want him to lose any gains he's made in other areas. He can't play, hold on to a walker, or feed himself, etc. with the immobilizers on, but if they are taken off, he quickly tries to rub his eye. The entire situation is very frustrating, and again I'm left wondering why Collin has to be thrown so many roadblocks on his road to recovery. I knew and accepted that hearing loss from the chemo was a possibility, but possible vision impairment or loss never entered my mind. I am hoping for the best outcome possible at this point, and I'm sure he can learn to adapt to having functional vision in only one eye if it comes to that. But none of this is what I wanted for my child. It's just not fair.

Despite the eye pain, the immobilizers on his arms, four small episodes of vomiting, and a tiny fever that landed him back on antibiotics yet again, Collin had a great day today. He was more vocal than he's been in a few weeks. He played with his nurses and therapists. He smiled and laughed a lot, and had us doing the same. The scan of his liver showed the blood flow is now going in the right direction. He is almost back to his pre-VOD weight. His labs are good. The attending physician today said there's not much keeping him in the hospital now; as soon as he is able to tolerate nutrition either by mouth or feeding tube instead of intravenously, he can go home. So this evening his tube feeds were re-started with the hopes he won't have a lot of vomiting as his stomach readjusts to being filled. With any luck, maybe we can go home by the end of next week!