home again

After a three-week hospitalization, we are finally home again. Throughout his stay, he had three PICC lines placed (one was pulled the first day we were supposed to come back home, but he started acting up again and ended up staying; the second got infected; and the third was pulled the morning of our actual discharge). Also, within the last couple of days he had a portacath placed and his PEG tube was switched out for a MIC-key button. We had started conversation about switching out his feeding tube device about a week ago and we were told they would need to speak with the general surgeon who placed the PEG tube. By Tuesday, nothing had been done about it. I brought it up in rounds Tuesday afternoon and was told "Well, Dr. R should have been contacted..." but maybe no one followed through with this? Anywho, so it was done like an hour before we walked out the door.

Let me tell you, I was NOT prepared for how they changed these out. I was warned that there might be a little bit of bleeding and discomfort. I should have known better when the nurse started apologizing to Malachi before she even began. So when enough force is applied from pulling the PEG tube, the balloon or whatever on the inside collapses so that it can come out. Well, his balloon did NOT want to collapse. After a couple tries of the g-tube nurse pulling her hardest, she took a quick break and then wrapped the PEG tube around her fingers and tugged a few more times before it finally popped through. I should not have watched her tugging. I should not have looked at the bloody rag after it was removed from his belly. Gross. Gross. More gross. I tried to stand up and look interested in what the nurse was trying to tell me. Instant dizziness. Instant loss of color in my face. I was not in good shape. Not in good shape at all.

I had to leave the room to find a cooler place and drink some ice water and try to get my mind of things. After I regained my composure, I went back in to start getting him ready for home. I couldn't even look at the little guy without feeling queasy. The semi-dried blood on his belly wasn't exactly helping matters. Well within the next couple hours, he ate (which takes 1.5 hrs) and then we packed up his stuff and got his meds from pharmacy. Got him all loaded up into his stroller and switched to his home ventilator. As we were all walking out, he started puking up blood. Yeah, that would be from the internal trauma of switching out to the button and the blood that had just pooled in his little belly. Nasty. He was gagging and puking it out his mouth and his nose. It looked awful. I'm sure it didn't feel well from where he was sitting.

When we finally got home and John helped me get him all settled in to his room (well, it was more like me helping John--he's a stud at getting Chi's stuff set up). But it came time for him to eat and I couldn't remember what they taught me with how the button was supposed to work and all that. I didn't want to mess it up! I called in to the Infant ICU and ended up in tears because I just wanted to do it right. At least I can blame it on pregnancy hormones, right?

Thankfully we had a night nurse last night and will have one tonight. Unfortunately, we don't have anyone for Fridays or Saturdays. Not too thrilled about this obviously, but we'll do what we need to do. I'm going to be VERY tired when the weekend is through though, I can tell you that much!

Chi has been stable and content at home. He's been sleeping a LOT, but I think some of his new meds make him drowsy. Also, not counting the diaper creams he gets for his yeast infection, Malachi gets 41 scheduled doses of medication a day. He also has a few prn medications that I can give if he looks like he's really uncomfortable (like Tylenol). Thankfully we don't need to show up for any appointments for another week. We will be meeting with immunology on a weekly basis to wean some of his steroids and things that were started for his lymph node reduction.