April 24th. We're home! It's so wonderful to have the surgery behind us now! John is doing amazingly well, inspite of his 5 inch scar down his chest. He's back into his exersaucer (just leans back instead of forwards) and his jolly jumper (does the same thing). Nothing will stop this kid. The only thing he can't do is roll onto his tummy. It's a little tricky moving him around because we can't pick him up under his arms right now. It would put too much pressure on his chest. He's eating very well (had his first baby cookie today) and is working on putting some meat onto his skinny bones. He's very scared of strangers though, and if anyone smiles at him he cries. I think he believes everyone is a doctor or nurse and that every place we go is the hospital. This should subside soon though! More details of the actual surgery will be in a separate place as I kept a hand-written diary for him while we were in Edmonton. It chronicles the actual surgery events. It's a good thing we chose Edmonton, because Toronto continues to have the SARS crisis. In fact, my niece's school trip to Toronto is cancelled due to SARS.
We also have to work on a sleep schedule. He's been waking lots and lots, and the only way I can seem to get him to sleep for a stretch is to bring him into bed with me. Can't blame him!
From Daddy: As Wendy mentioned, there will be a seperate section for the surgery diary. I also have lots of photos that I need to work on to get net ready. These will also be in a seperate section. I'm not sure as to when they will be ready to be posted, but never fear, they will be there soon. I'm placing them in a seperate section, as there are photos of him in the hospital with lots of tubes and stuff and some people may not want to see them.
April 3rd. Yesterday we learned that John's surgery in Toronto is cancelled due to the SARS epidemic. We were offered surgery in Edmonton instead. After only a few minutes of contemplation, we jumped at it because it looks like the SARS problem is far from over and we don't want to risk John's health by waiting. Tetralogy kids normally do well until 6 months of age and then problems can arise due to increased lung pressures etc. So, we're off on the 9th, he has pre-op on the 10th and surgery on Friday, Apr. 11th, even earlier than we had expected. It's always hard to get your head around new changes. We understand that the program in Edmonton is excellent and that the surgeon Dr. Ross is wonderful as well. So it's only 1 more week of waiting until our little guy gets his repair.
On a funny note, John has found his male parts (giggle). He much delights in playing down there when he's in the tubby or when I'm changing his diaper (typical male already)!! The only problem is when he has pooped his pants and he reaches down there before I can clean him up (I know...too much information hehe). You've got to just laugh at him! He's getting very close to crawling as well, and the sitting up part is becoming a little more steady. It's too bad he's going to lose ground when we're in Edmonton.
The accommodations in Edmonton are better than in Toronto. We have an actual suite with a separate bedroom, bathroom and kitchen. That way we can make small meals in our room and not have to spend so much money on food in restaurants.
March 29 Well a strange illness called SARS (Severe Acute Respiratory Syndrome) has hit the Toronto area and hospitals. This may affect John's surgery date as they are not doing elective surgeries right now. This is very hard on us because you get yourself all mentally prepared for the surgery and then things change! We won't know for sure for a while yet. The lady at Sick Kids told me to call back the week of Apr. 7. John is also not sleeping well and this is taxing my energy and emotional state. I was very overtired yesterday, so much so as I thought I could go absolutely crazy. I ended up going over to my brother Wade's empty house and sleeping there for the night while Derek and my mom looked after John.
On a happier note, John has finally figured out the jolly jumper. He is absolutely cute when he gets himself going. He's getting very coordinated with his hands now and likes to play catch with his ball. I also took him to the park this week and he loved the swing! We bought one that daddy is going to put in the tree in the front yard. John also loves to hit things now to make a lot of noise. His favourite thing to whack is the tray on his highchair. Daddy says that "No we can't get pictures of him in the jumper because he moves continually!"
March 22/03 It's finally warmer outside. We've been doing a lot of walking lately. I take John for at least a one-hour walk each day, sometimes more. At first he would only sleep in the stroller, but now he spends some of the time awake, looking around at things. He's a most curious little guy.
Mom and I spent yesterday shopping and walking John around in his stroller. We actually ate outside at the Chip Box. I bought a smaller compact stroller for taking with us to Winnipeg and Toronto. It offers a little more support than the other umbrella stroller. It also has full shoulder straps, so John can't lean forward.
With all this T.V. about war, it gets a little depressing at times. I'm trying hard to put the surgery out of my mind, but it doesn't always work. I know that worrying won't help, but it doesn't stop me from worrying anyhow. John is feeling much better and Dr. Mazurski checked his tonsils. They were all clear! Now to keep him healthy!
I also bought John two of the Baby Einstein concerts to listen to in the car. It was really comical, because when I played him the tunes from Baby Mozart, he kept looking at the T.V. screen. You see, the soundtrack is almost identical to his movie. It was like "Where's the movie mom?" He's a very bright little guy. He laughs at all the appropriate times when the kids on the movies make a joke. He takes the cue from the laugh track of course!
March 11 - It's been a couple of rough days here. On Saturday night, John woke up and when I picked him up he was burning up with fever. I took his temperature and it was 103. We decided to wait out the night and the next day mom and I took him to the ER. We waited like 3 hours to see the doctor, and they diagnosed John with a gastrointestinal flu (diarrhea to boot). I cleaned up poop the whole day and the next. I've been syringue feeding John pedialite and he sucks his bottle somewhat. Today we took him into the ER again because he was crying everytime I tried to feed him and his voice sounded hoarse. Turns out he has a throat infection. He's on amoxicillan (which could increase the diarrhea) for the next 10 days. It's such a worry because we are trying so desperately to keep him healthy for the surgery. I was up all last night every 1/2 hour to an hour with him. I'm craving sleep desperately.
March 3 - Well John weighs 14 lbs, 6 oz now. The solid food must be agreeing with him o.k. It's so cold again that I had to dress him in his "serious" snowsuit to go to the hospital this morning. He hates it!
He's really enjoying the activity tube that Grandma and Grandpa have at their house for him. It's like an inner tube that is covered with cloth. On each square is a different picture with a texture, or something that velcros to it or whatever. He's a real clown in it. He sits quite well in it and then pushes off with his feet. He rolls around and goos and puts on quite the show.
He eats a real variety of foods now. He's had rice, oatmeal, sweet potatoes, squash, carrots, green beans, bananas and apples. I'd say that sweet potatoes are still one of his big favorites. I thought bananas would be, but I was wrong. He eats them, but doesn't gobble them as he does the sweet potatoes. I imagine his tastes will continue to change.
He totally soaks me during his baths now. I have to wipe up the floor afterwards. Oh well, at least he's having fun, right? Not much else to add, so I'll sign off for today.
© 2003 Derek Kennedy