Day +66: Family time and playdough therapy

Well we are at Day +66, i cannot believe it. We had our clinic appointment last Friday, my first time taking Nadia on my own as Thor returned to work last Wednesday to ‘bring home the bacon’ and if you caught the tweet and FB updates you would have seen her blood work numbers updated and graphs accordingly. But I will list them again for those of you who don’t remember or can’t read graphs (no judgment here)
WBC 2.4 (normal 5.3-16.0)
Hgb 102 (normal 105-135)
Plts 201 (normal 200-550)
Neutriphils 1.07 (normal 1.5-8.5)

As you can see, she is kicking some serious A$$ in the platelet department, (just to remind you when she was diagnosed in Sept 2013 she had a platelet count of 6) And her Hgb is just about in the normal range, needless to say, she is the life of the party and her mother needs a nap as much as she does, maybe more.

Clinic appointments look like this, we arrive at the hospital, check in, put our name on the board, then get ushered into a room to ourselves. Even though Nadia is wearing a mask, because her immune system is still so fragile (pronounced the Italian way to make is sound fancy) crowds of people and hospitals are not great places for Nadia to hang out in. So we get the royal treatment and ushered into a room right away. Still waiting for the red carpet to be rolled out for our arrivals, but haven’t seen it. Then we wait for a very nice nurse to come in and take a whole whack of blood from Nadia, ok so it’s not a whole lot but it still seems like a lot. Then they weigh her, take her temperature, blood pressure and height. Then we wait for the lab to do its magic and count all of Nadia’s bloods. This takes about 20 mins or so. Then Team BMT usually comes in to have a chat and go over the results. Friday was a bit different, Nadia’s nurse practitioner came in a bit early to say hello, and offered to bring in some play dough toys. I was expecting a cookie cutter and a wee rolling pin, but she brought in the entire play-dough box. Nadia of course then insisted on dumping out the entire thing onto the desk. Lucky for us the nurse practitioner got side tracked with playing (as you do with play-dough, it’s just so much fun) then our Hematologists came in. Nadia of course asserted her ‘leadership skills’ and had them all playing with the dough. I have to say it was a pretty awesome sight to see, 3 highly educated people hanging out, playing with play-dough and a 2.5 yr old. At one stage Nadia had enough (we all continued playing with the play-dough though) and she just started running around the room, then she cracked her head on the desk (thank-god she has platelets to spare), rubbed it, let out a little cry and put her arms up to one of the hematologists for a snuggle. He obliged, and then Nadia pretty much sat on his lap for the rest of the meeting and tired to comb his hair with some sort of play-dough toy. It was pretty cute, although in retrospect I should have taken the opportunity to go out for a coffee, it is obvious Nadia does not need her mother when she gets hurt. sigh.

Team BMT were very happy with her counts and levels and put us down to one clinic appointment a week, whoop whoop. They are also looking into getting her central line out in the next few weeks. Which is pretty awesome as her noodles cause me some stress. It can be a major source of infection, but if you are squeamish about IVs sticking into your hand or a kids hand try a central line bleh. This is what goes through your mind when your kid has a central line, ‘is it gonna get infected? did I clean it properly? what if I go to hep lock it and I can’t flush the fluid into it? what if the line cracks?’ but the worst thought is, ‘what if it gets yanked out’ that thought is enough to keep you up at night. Especially when you see the size of the tube coming out. It has the diameter of a juice box straw. bleh. Nadia has adapted to it just fine, she barely even acknowledges it now. Which is great and she has been so great for a 2 yr old to have a (in my distorted mind) giant tube coming out of her chest. if you ask her where her noodles are she just points to her chest or pulls up her shirt a little bit and points to the ends of it. It’s cute actually.

The dressing changes are a bit of a challenge, Nadia is pretty good, but she does cry and kick so it can make the process very stressful. I know it doesn’t hurt her really, just taking off the sticky dressing is the worst part. so I don’t blame her for getting upset. She’s a trooper, once we are done she is back up and running around like nothing happened.

We have been spending as much time at the playground as we can when it is quiet and dry. Nadia is loving it. Up and down the slide, and not the small slide she has to go on the big slide, climb up to it herself, and slide down it. I am still a bit scared of her falling and causing internal bleeding to herself, I think it will be a while before it sinks in that her platelets are in the normal range. Still paranoid about her touching the playground equipment with all the ‘germs’. If I could spray it all down with purell before hand I would, but they don’t make bottles that big, believe me I looked into it ;).

As I mentioned Thor left to go back to Kelowna for work last week. Even before Friday’s appointment we felt comfortable enough that it was time for Thor to do his semi-annual roadtrip throughout the BC Interior. My parents came in from Calgary to stay with me to help and hang out, I wasn’t feeling 100% confident to stay on my own yet in case Nadia spiked a fever and I needed to take her back to the hospital. So it was great that they were able to drop everything to come and help.

Thor came back to Vancouver last night. We are happy to have daddy back.

On Tuesday I was able to do Nadia’s dressing change all by myself. This is huge as it use to take 3 of us to do it in the hospital. One to hold down her arms, one to hold down her legs and the other to actually do the dressing change. Nadia really has been a trooper through all of these types of things. Just before we were discharged she was pointing to the next step the nurses had to do, it was cute and disturbing at the same time. She screamed as I took the giant sticky band aid off her chest (as you would) but didn’t kick or try and touch the area. After I was done, she was up and running around again.

Mmmm, toast with Nanny and Papa Raj!