It will be one week tomorrow since, we were discharged, and Nadia has been doing really well. Her numbers are continuing to trend up, and we are so happy and grateful for this. Thor has updated the graphs for all to see, compare and get your nerd on. As I don’t have a ‘math’ brain, I didn’t really appreciate the graphs, ok let’s be honest, didn’t really understand them, haven’t had much use for them since university economics classes and even then I would look at them like they were some ink blot waiting for a picture to jump out at me. However, after this whole experience, I would HIGHLY recommend anyone who is in our position or similar to graph your counts. Every day, we would get Nadia’s numbers, and every day when they wouldn’t move OR move down by .01 (which is nothing BTW) i would be devastated and stressed, then Thor would pipe up and say, ‘at least they didn’t go down’ even though I thought going down 0.01 was huge, it isn’t especially when you graph the counts. It wasn’t until one of Nadia’s doctors (who is a HUGE fan of Thor’s graphs, and they nerd out over them all the time, and now it has gone to Thor’s head) was saying to me “if you were to graphs Nadia’s counts, there is an upward trend…..” it was when the doctor said ‘upward trend’ that I realized I was focusing on the daily numbers too much and not looking at the bigger picture, which of course was an ‘upward trend’ and all I saw were numbers that went up and down a bit. Which when you are in the midst of something like this where numbers are important, it soooooo important to look at the bigger picture. So if any of you who are reading this blog, and going through a BMT, and have become obsessed with the daily numbers (which you will), and need to look at it as a big picture, try graphing it. Thor used excel and then did something fancy, as and engineer would, although I believe Thor is ‘over fitting the data’ (Thanks @IvesLevesque!) 😉 So thank-you husband dearest for nerding out over our daughter and thank-you doctor for those magical words ‘upward trend’.
We had our second clinic appointment today, it went well. Nadia’s platelets were 175!!! When I think back to where they were at in September, 6, and pretty much that number until her BMT, I wonder how I didn’t have a nervous breakdown from worrying about her not falling and dying from internal bleeding! Now when she bonks her head or trips, we say ‘thank-god she has platelets’!
Nadia’s has been taken off one of her anti-rejection today, wooohooo! she has also started SEPTRA, which is a antibiotic, this is common antibiotic to give after a BMT, and they usually start it once your Neutriphil level hits 0.5, and as you know when we were discharged she was at 0.34. She has to take this twice a week. We are also having to get more fluids into Nadia. The other anti-rejection drug Nadia is on, called CSA or cyclosporine, needs a lot of fluid to help flush it through her system, at least 1 ltr a day for Nadia. So we have been trying to push a lot into her. See in the hospital, she was on IVy and was being pumped full of fluids 24/7, but now that we dumped IVy (good riddance, insert a swear word that starts with B and rhymes with itch, here), it is up to Nadia to drink the difference. So we have been pushing water, juice, smoothies, and milk like some sort of meth dealer. To the point where nadia gets annoyed and screams at us, then covers her mouth and shakes her head no! haha! she is so funny and such a 2.5 yr old.
We are enjoying home time/family time. We haven’t had time like this as a family together since Nadia came outta the NICU, so we are enjoying it. Thor heads back to Kelowna next week and my parents are coming up to stay with me while he is bringing home the bacon. Then Thor will be coming back and forth between Vancouver and Kelowna until we get to go back to Kelowna.
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Just Nadia, looking adorable.
Testing out the new platelets. Look mommy, no hands!
A video of Nadia trial running her platelets.
Nadia showing off her lung function.
