29 11 2010

After nearly 50 days in the hospital, our little man is home!!!!!!!!! The doctor found no reason in keeping him there while he was working on feeding better when that could be done in the comfort of our own home with a home nurse, rather than in a hospital full of sick people. Tuesday, she started writing up the discharge papers and ordering all the supplies we would need. Wednesday, the supplies came in and we started learning how to use his feeding machine/pump, and I stayed overnight to see what a full night was like with him. Thursday, we left!!!

Friday morning, we headed down to SickKids to have his PICC line removed. When the doctor booked the appointment for us, she was nice enough to make it for 9:00, so we tried out best to get there for 9:00, but got there at 9:30. Luckily, IGT was dead, so they were able to start us right away. He had numbing cream put on his arm, and they told us that we could sit and wait, or walk around for half an hour and then they’d remove it. So, we sat and waited and fed him. They called us in, and had us put him on a stretcher-type gurney. Propped him up on some blankets, and then covered him with sterile dressing blankets. Injected him with a little bit more spots of freezing, of which he was NOT a fan, and then pulled it out. (They were going to take it out at RVH, but apparently there was a balloon at the end of it? So it had to be taken out at SickKids. We didn’t see any balloons.) After that, we finished feeding him, and then headed back to Barrie.

Got back to Barrie just before his next feed, but he was already starting to get hungry. While we were waiting for the bottle to warm up, I changed his diaper. He was MAD, and had his arms and legs kicking and flailing and he managed to pull out majority of his feeding tube, which made him madder. I ended up pulling out the rest of the tube, and then he settled down pretty well right away. We fed him what we could from the bottle, and then headed out to the Urgent Care clinic to see if they could put a new one in for us. (They couldn’t.) So, we had to go back to RVH, and sit in emergency. We registered, and headed to Minor Exam. The triage nurse told us that it wasn’t busy, so it would be quick. We sat and waited for about an hour before he started waking up, hungry. I made the mistake of asking if I could feed him. The nurse wasn’t sure of how the feeding tube thing all worked, so she said she’d ask the doctor and get back to me. A couple of minutes later, she said not to because we would be in “soon”. So, we distracted him for a bit, and eventually he fell asleep. He woke up later, having missed two feeds, and started crying and would not calm down. I went back into the room a couple of times asking how much longer it would be, because he had missed two feeds and needed to eat. They all assured me that it would be “very soon” because we were “next”.

They still hadn’t called us in after about four hours, and there was nothing we could do to calm him down or distract him. Finally, I went back into the nursing station, crying, asking how much longer it was going to be because he needed to eat, NOW. They made up the casting room for us, saying that we might have to move from this room, but at least now the doctor could come in and see us. A nurse came in, and I asked when I could feed him. At this point, he was starting to get lethargic and wasn’t even crying for food anymore. She said she was going to get the doctor immediately. She came back in a couple of minutes later saying that the doctor said we could feed him. I didn’t feel comfortable feeding him the formula that we had in the bag because it had been in there for more than a few hours, so I started breast feeding him and hoped for the best. He seemed to have gotten some milk, because he perked up right away and was a much happier baby. A little while later, my parents brought up some more formula for us and he sucked that back as well. The doctor finally came in, saying that he would have to call the pediatric on call doctor to put it in, because she was the only person who could. I asked how long that would take, because at this point, I was ready to take him back to SickKids. They said that they’d paged her, and she was caught up with a patient but would be down within an hour.

An hour passed, and the doctor still wasn’t down yet. I was going back and forth between the minor exam waiting area, and the emergency area to update my parents on what was going on. I came back into the minor exam area, and Jason was sitting in the hallway with all of our stuff. I nearly lost it. Not only were they lying about how much longer we were going to be (in no way is five hours, “soon”), they kicked us out of the room we were in while we were waiting for the doctor to come down. The only reason why I didn’t go back into that room and throw a fit? The on call doctor is our pediatrician, whom we have our first official appointment with tomorrow. I calmed down, and then I went back into the nurses station to ask if they knew how much longer the doctor would be. The nurse/clerk said she didn’t know, and she didn’t know where else I could go to have his tube put back in. I asked her to page the doctor again, because we had been there since 4:00pm, and we were continuously told that we were going to be “next”. She came back over to us a couple minutes later saying that the doctor had called back and she was “very busy with an unstable infant, so she will be down as soon as she can leave the infant”. Thank you for the guilt trip, lady. But you see my infant? He went through hell for the first month of his life, and because of that he can’t get sick. So, you see, sitting in your hospital for six plus hours to get this done? Really wears my patience thin, and this guilt trip? Not helping your case. Rest assured, if this ever happens again, I will be driving the hour to Toronto and making sure he goes to the best hospital where ANYONE can replace the tube, not just one person.

Finally, a nurse came over and got us, saying that the doctor was able to put the tube in. We were brought back into the original room that they’d put us in, and the doctor came in a couple minutes later. The doctor looks like she’s about 25, which kind of surprised both of us. And, I’m not sure about Jason, but I immediately liked her. She asked us a couple of questions about the little man, put the tube back in, had it x-rayed and then we talked about a few other things that she remembered from his chart. She said she would be contacting SickKids between then and our appointment tomorrow to get their opinion on weaning him off of an anti-convulsant, seeing as he’s only had the one seizure, and it was febrile. (The pediatrician that looked after him over the week wanted him to wean off of it, so he would be on it until he was three or four months old.) And she mentioned a couple other things that she wants to work on too, but I can’t remember what they were anymore.

Saturday, Sunday and today have all been pretty low key. We’ve mostly just worked on getting his feeding back on schedule, and catching up on some (much needed) sleep. Aiden had his first real bath today. He didn’t love it, but he didn’t hate it; he seemed to mostly be confused by it. Now, he’s sitting in his bouncy chair, watching the back of his eyelids.




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