Monday, January 24, 2011

IVIG and Support Group

IVIG days are always long, thankfully it's only once a month. I schedule them for Mondays so Dawson will be in school and Dan can still sleep in a bit. So I get up at 7:30am to get Dawson up and ready for school. While he's watching Blues Clues and eating cheerios, Tyler wakes up and wants to nurse, so I lay back in bed while he nurses for about 15-20 minutes. Then we get up, which often isn't approved by Tyler, but he doesn't fuss for very long. Tyler watches the cartoons and sits on the couch while I bring Dawson out to the bus. Once I'm back in, I get Tyler dressed and get his Emla cream on his port, it's a topical numbing cream so he can't feel the needle going in. He always hates getting it on because I use that press n seal plastic wrap stuff to cover the cream with. It sticks to the skin and doesn't irritate him as much as the tagaderm dressings do. It's crinkly though and he hates anything being here. Thankfully it's winter and by the time his shirt and coat is on, he can't get to it at all. The bus comes at 8:30 and we need to be at the clinic by 9am, so I'm practically running around once I get back into the house. Thankfully this time I caught Tyler with his hand in his pants and he wasn't able to get his hand free in time to protest the Emla.

Tyler knows his way around the clinic and still doesn't complain about going there. He loves being able to do things himself, so I just get him out of the car and let him walk in. Good thing, because on these long infusion days I have the diaper bag, laptop bag, toy bag and cooler bag, so it's nice not to have to carry Tyler too. We have a special parking pass for the clinic, so we get one of the 2 spots right behind the handicap spots, so it's nice being right by the sidewalk so he can walk the entire way and be safe. He runs to the door and hits the handicap button, then runs down the hallway and around the corner to the handicap button that opens the Short Stay doors and runs inside. He runs right into "his" room, since they usually have the crib in the same room, we're often put in the same room. He goes to the bench to have his coat removed and then goes to the crib because he knows the Child Life lady has already put his favorite toys up there for him. The nurse then puts on Blues Clues for him (they have some movies there) and then we get on with the appointment.

Thankfully accessing his port goes very well as long as the above steps are followed properly. If he doesn't have Blues Clues, it doesn't go so well. Otherwise he's totally entertained and barely even needs to be restrained during the process. A huge change from the beginning! They have to scrub his port for 30-45 seconds to sterilize it, then stick the needle in and put a big piece of tape over it. He usually looks down once the needle is in, watches his blood come out for labs and then goes back to watching tv.

We have to wait for the pharmacy to prepare the IVIG, they aren't allowed to order it until we're checked into the clinic, so it's often an hour by the time we actually get it started. He gets steroids, tylenol and benedryl before we get the IVIG started. The benedryl makes him nap everytime, often most of the infusion but last time he only slept for maybe 30 minutes and was back up for the entire time. That made for a tough day! This time he did nap the whole time. Wouldn't sleep in the crib, he had to stay on my lap, but I was still able to go online and that helped pass time. They started out giving it to him at a slower pace, but now that he's used to it and hasn't had any side effects they're able to give it to him faster. They bump up the speed every 30 minutes now, instead of every hour. So now it only takes 2 1/2 hours, plus 30 minutes after it's done to watch for reactions. But with the time it takes to get it started, we were there 4 hours.

I talked to the Oncologist while we were there. She checked him over and said he looked good. I asked her about waiting 3 months for the biopsy, if it would spread too fast if he really is relapsing. She wasn't worried at all, she said it would show up in his bloodwork before then anyway, so we'll just keep watching that. I asked her if we should do extra bloodwork and she didn't think that was necessary. We've been doing it once a month, so it's gonna feel like a long wait until his next labs! Just another thing to wait for. She said she was confident that if he needed labs done before the month is up that I would notice it since I've been so observant and intuitive in the past. Always nice to hear compliments from medical professionals, but it's also more stress on me to keep an eye on him! Not that I don't already, but it just feels like extra pressure and I'm always wondering those last couple weeks how his counts are doing and if he will make it the whole month without needing labs. I got so used to doing them every 2 weeks, it's stressful going longer. Especially since they raised his chemo dose a little while ago.
Dan got Dawson off the bus. He set up the train tracks for him, which were a big hit. Dawson happily played with his train and Dan was able to get some things done. It was nice to come home to the dishes done, garbages out and the bathroom sink cleaned. :)

Tyler and I stopped at the library on the way home, it's so nice and much quicker doing errands with just 1 child. I got some more things done once Dan went to work, I sorted through a ton of papers on the table and got a small bag full of junk to throw away. I also got the rest of the bottle stuff gathered up and into a box. I just need to go through it and find a home for it. I have so much pump stuff from the hospital, I really need to downsize.

I didn't get too much time at home, we left at 4 to go to the post office. I got a package shipped to Canada, that was a first. Apparently you have to fill out a form to ship stuff there, so that was a pain. I hadn't bothered with the stroller this time, so I was holding Tyler and trying to fill out a form at the counter while Dawson was running around the small post office. Thankfully we were the only ones there and he wasn't getting into anything. Afterward we went to Walmart for some groceries. Dawson likes helping me put things into the cart. He'll also decide to sit in the cart with Tyler sometimes. Other times he'll just run off out of the blue and then he gets stuck in the cart, much to his dismay and ends up throwing a tantrum. Seems like on those days, everyone else's children are behaving perfectly. It's so embarrasssing to have a tantruming toddler in the store, but I just keep reminding myself that those perfectly behaving children all have their bad moments in stores too! I always feel bad when it's someone else's toddler and mine are being very well behaved.

If there's anything good about below freezing weather, it's being able to get groceries and not worry about them getting hot in the car. We had our support group at the school and it gets out at 8pm, so I prefer getting our errands done before class so the kids can get home and wind down before bed. The kids had a lot of fun in class. I was working on some puzzles with Dawson. He's starting to be able to do real puzzles that go together, instead of the ones that just have 1 hole for each animal and everything is seperate. His OT lady brought some real puzzles, but he didn't have much interest in them. They were Pooh and some other random things. I found some vehicle puzzles and he was all about those. He had those puzzles together pretty quick. He loves cars and knows where the wheels and different parts go, so it was easier for him. He can also recognize his name. I spelled his name with magnetic letters, we said all the letters and then I traced my finger under the word and he said "Dawson!".

Tyler didn't shed a tear or even look for me when I left the room, so that was nice. He gets lots of attention in class, he's quite popular. He has an assistant who has claimed him for herself and 3 little girls who are about 6-8 years old who follow him around, play with him and help him with everything. Sometimes I think it's a bit much, the poor kid can't even stand up on his own when he falls, he always has one of them helping him up. I saw a couple of them picking him up. Not far off the ground, mostly helping him onto things, but I still don't like that. If he didn't have a port it wouldn't be as big of a deal, but you really have to be careful how you pick him up and the way they were doing it wasn't good. So I talked to the assistant and explained about his port, so she said she'd keep an eye on them. One of the girl's mom was there when I was explaining it and she explained to her daughter why she shouldn't pick him up. I just don't want to see his stitches get ripped out again, the poor boy doesn't need any more extra surgeries.

Dawson was much better about bedtime, I took away his ladder again and he had no choice but to stay in bed. He didn't fuss at all and quieted down very quickly. I had put Tyler in the bottom bunk after he woke up like I had been doing, but he woke up twice after that and didn't seem to like it, so I put him back in his crib and he didn't wake up again. He's so attached and comfortable in his crib, he does go to sleep really good, but I think the change to the bed might still be tough. I'm hoping that having his nightlight by the bed will really help. He loves watching his nightlight, it changes colors and is by the head of his bed. So maybe once that's switched over too, it'll feel more like his bed. I'm still not sure when I'll switch Tyler over. Probably pretty soon though, I want to give him a couple months to get used to it before I have the baby to deal with too.

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