Home

I have had no internet access for the past week, so haven't been able to update anyone except by phone or through my dad (who, thanks to his very savvy internet skills, has been able to keep everyone updated on facebook enough to know what's been going on). But we are now home, unpacked, and have filled the fridge with much-needed groceries, so I guess I need to do this before more time has passed and I forget things. I had to read over my previous post just to remind myself of what has happened in the past week, and I'll probably still repeat myself, but at least it will be recorded somewhere, and that's what counts.

My last post was the day Tony P. was moved out of the Peds ICU. We were able to keep our own room until the day that we were discharged, and then someone else moved in with a very cute baby (but a baby who cried occasionally, like they all do), so we were happy we were able to leave. However, it was much sooner than we had thought. When the nurses and doctors started alluding to the fact that we would be going home, I was panicked. I had no interest in leaving the hospital, and no interest at all in taking care of Tony P. without a nurse's supervision. But apparently kids heal faster out of a hospital environment, so we took their word for it, and left, but not before doing some of the necessary steps, on the necessary days, for him to be discharged. Steps like having the chest tube removed and taking off the bandages, which he did not like at all. I don't think he actually realized that to fix the hole in his heart, they would have to make a big scar. We had told him about that, but it's a different thing altogether to see the scar. As soon as they took off the bandages, he started asking for a shirt, and wasn't comfortable at all without a shirt on from that time until we left. We are still trying to desensitize him to the scar by having him show it to people (only the ones who are interested - unsolicited scar showing is not really something we are condoning), and teaching him that it shows how brave he was, how maybe it has super powers, how it's super cool, etc. etc. I have no problem filling my child's head with a bit of fiction if it means that he will be comfortable with something on his skin that will be with him for the rest of his life. Anyway, what was I talking about? Oh right - so the chest tube coming out with the bandages was also quite traumatic, lots of blood, lots of crying, basically a horrible experience, and ended with stitches that are still in his tummy, so he was not a happy kid. The minute they were done with the chest tube, an orderly came to take him to do a follow-up chest x-ray. Not the best timing, since that means more sitting still in terribly uncomfortable positions, but he was such a good sport. They asked him to sit still on a stool with no straps to hold him down and to not move and he just sat there. Then they had him turn sideways and hold onto a bar above his head (so uncomfortable for him) and he did it, sat still, and let them take his pictures. I'm pretty sure him sitting still for all of these little procedures was also a blessing, since he's not such a sit-still kind of kid in reality. That was all done before 11am, before PWL came back to the hospital from being gone, and I think my sanity was pretty much gone by the time he got there. It had been a long night with not much sleeping (many alarms going off, many times waking up to get the nurse to turn off the alarm which was going off unnecessarily), so I was happy to see him and go for a walk, eat a Snickers, and read my book. Yes, a snickers. Many, many snickers. Every one of them enjoyed more than the one before, and all gifts from people who know me. It was great. By the end of that day, though, Tony P. was in much better spirits, having had a visit from his new pal "Brucie," his G&GL, and his auntie. He was feeling much better by the end of the day, and by the time I left for the night, he was fast asleep. Apparently he did not stay fast asleep all night, and PWL had a sleepless night as well, but at least he didn't have that chest tube anymore, and that made things much more bearable. After that, things were pretty simple. He could go for walks as long as he kept his monitoring wires attached and carried a portable pack that the nurses could monitor, so we went to the play area a lot. He was quite happy to introduce himself to all the nurses, and ate a lot of popsicles, so that made his stay much happier as well. And then we were gone. No ceremony, no certificate of completion (but I might still make one for him just because), just a wave goodbye and out the door. I guess they have to clear the beds as soon as the children are well enough to go to make room for sicker kids, but I could have stayed an extra day, just to feel like I knew what I was doing. We ended up staying the rest of the week at my aunt's and uncle's house, just to allow him some additional recuperation time. They had suggested staying close by for a little while just to make sure everything was ok and to eliminate any possibility that something might go wrong and we wouldn't be near the hospital, so we opted to stay for the time we had planned to be gone for. Our girls were happily and blissfully being spoiled by their grandparents, and we figured the longer we could keep Tony P. calm and rested, the better his recovery would be. We tried to take him for lots of walks, and he took at least 3 hour naps every day, so I hope that somehow that has aided his recovery time. Even just since being home yesterday, I have noticed he is tiring more easily, but I'm sure that's because he is playing constantly with his sisters, and that is not a low-key, restful way to spend the day. He's not allowed to climb ladders, jump off things, be picked up under his armpits (so...basically he can run wherever he wants because I can't grab him to bring him back fast enough), go swimming for 4-6 weeks, or really do anything that might upset the healing process. But if that's the price to pay for a healthy boy long-term, I'll happily pay it. I can now return to real life, having had some time to deal with everything that has happened up to this point. It was a great reunion with the girls - they were so excited to see us and excited to see their little brother. Luckily it's been raining since we got home, so there hasn't been the temptation to go riding bikes (not allowed) or play at the park (he could go, but he couldn't climb on anything), and tomorrow we have his follow-up doctor's appointment, so hopefully after that we'll know a little more what he will be limited to long term. Anyway, he's home, and I'm grateful, in more ways than I can ever say.

Canada Day, playing in the wading pool at the Leg. It was a great day, so I'm posting more pictures from this day than the others. Great memories on this day. The next picture is of him running on the grass. Sheer joy.

3/5 of our family. It's always easier to get a group shot when you only have to get one kid to look at the camera!

Tony P.'s first popsicle post-surgery. He was so happy to be eating something.

I debated not putting hospital pictures on here, and I hope no one is grossed out by these. But I also know members of my family are interested, so here is the only picture I will post of his scar. This was right after the chest tube came out.

Playing in the toy room at the hospital - a definite highlight.

Hanging out in his hospital bed, trying very hard to say "cheese" for the camera.

Leaving the hospital, with a special Superman card from GB & GL that actually "sings the Superman song when you open it mom, look how cool that is!"

A thoughtful Tony P. at a park (with no playground) post-surgery. Loving the new Canada Day shirt.

Just Tony P. and me, walking around the Leg. post-surgery. What a great way to end a big week!