Chapter 7 - The Aftermath

The first night home was Christmas Eve, so it was a really, really long night. I think we finally made it to bed close to 2:30am, in part due to all of the festivities, but also due in a small part to the fact that, it was difficult to go to sleep and not feel nervous that something was going to happen for us to have to rush to the hospital again. We did make it through the night without incident, and pretty much every night after that. But I still had that feeling of "holding my breath" for a long time. I was always on the 'lookout' for any signs of that rash, even though logically, I knew it was caused by sepsis, and that she was already under the correct antibiotics. The very hardest part was knowing that she had been so very sick, yet we had no idea to what extent. I felt like I didn't trust myself with Cyann because, if I couldn't tell then, who's to say I would be able to tell if she got sick again? Scott and I both felt so...fragile, after everything we'd been through. Neither one of us really slept much for the first few months after we brought Cyann back home. And when we did, we both had nightmares all the time. I would wake up screaming and crying. Scott would always dream that Cyann was falling off the bed, and he would go to grab her before she fell, only grabbing me, of course. (which was really annoying on the nights I was actually starting to sleep, to be awakened by a sudden jolt as if I were falling off the bed!) I don't even know how long we went on like that, but I know it was a long time.

Cyann seemed to get more like herself everyday. Actually, better than before, since she was sick for so long and seemed like such a serious, hard-to-make-smile baby. She was a little behind on her development at this point. She should have been rolling over and sitting up, but being sick and the hospital time kind of delayed things. But she seemed to catch up ok. Our (new) pediatrician would give us the age range of each milestone, and she would be on the high end, but at least still in the range. But Scott and I both were on the high end of those ranges also, so she had that working against her as well.

At the end of January, after being home about one month, Dr. Haws wanted a VCUG done, which would test for Vescourteal Reflux. That is when she pees, not all of the urine comes out, and some may go back up into the bladder. Which could cause infection. The test, which was a catheter with some dye going up inside and then an 'X-ray' being taken, was not fun at all. First, it caused "flashbacks" to the hospital stay for all of us. Cyann literally broke out into hives when we first walked into the hospital to sign in. Which really scared both Scott & me to see those red patches on her body again. I started to hyperventilate, which I've never done before. Scott was starting to get emotional, but pulled it together to help calm me down. And then during the test, it was very hard to have to hold her down and watch her scream and cry for 45 mins. The test came back positive. On one side, there was just a tiny bit of urine able to go upwards, but it was there nonetheless, so Dr. Haws said that was a Grade 1. The other side wasn't very much either, but a little more than the first side, so he said it was a Grade 2. (with Grade 5 being the highest) He said Cyann would most likely grow out of it (hopefully), but until then we needed to give her Bactrim every night for 1 year before bed. This would sterilize the urine, so if any did make it up to the bladder/kidneys, it would not cause infection. The test would be repeated in one year to see if she would still need the Bactrim or grown out of it.

During this time, we were still waiting for the results to come back on those genetics tests they took. On the one hand, if they came back negative, that would mean we would go ahead with the biopsy on Cyann, who was around 8 months at this time. The thought of surgery scared me, but then on the other hand, if any of the tests came back positive, that would mean she was positive with something that was far more serious than ARPKD. It wasn't until the test results FINALLY came back at the end of February and all were negative, that I was informed that every single thing they tested for was untreatable/terminable! Thank God I didn't know that back in the hospital; I was a mess as it was. Had I known all of this, I would have 'checked out' completely probably.