Riding The Wave

Well, as you all heard from our last post, Ellie had 9 amazing days at home! My heart was full having our family all in one place again. Ellie was back to her good old fun loving, happy, cheeky-at-times, self :) We had some laughs (and panics!) getting used to doing all of her meds at home. A pretty intense schedule that made us realise all that the nurses do for us around the clock. I had received a quick demo on operating her kangaroo feeding pump before we left the hospital, as well as a run down on all of the meds and how to take them in the new, non-IV route. It all seemed pretty straightforward and operating the pump came back to me like riding a bike! However, when it came time for the 9 PM feed to be set up and I tried to prime the line, I didn't know (or remember) to take the cap off the line and then couldn't figure out why it wasn't priming. Oh, goodness, I was out of practice!!! I had to call the ward at 9 PM to ask for help! (In my defence the nurse didn't show me that part haha). Ellie had this terrified look in her eyes like "Mom, you're going to kill me!" and said "Maybe I should go back to the hospital?". Of course I proudly and confidently said nonsense! We can DO THIS! I'm nurse for goodness sakes!"  So, we figured it out and all went well from there. Even Paul started giving Ellie her meds through her NG tube. It's amazing what you learn on this journey. I can safely say that pushing meds through an NG tube was NOT on his skill set prior to this! Anyway, after getting the medication thing down, everything went really nicely at home and Ellie really enjoyed lots if Annabelle time, catching up with her bestie and getting some fresh air and an outing for ice cream down at La Perouse.

Now we have been back in the hospital since just before Easter and Ellie has cruised through the 8 days of chemotherapy and the few days after it ended. But as of yesterday, she has taken a downward turn that we were anticipating. A temperature came on and she started complaining of mouth pain and had a significant decrease in her oral intake. Previously she had been eating and drinking like a champ! Even eating some Uber Eats for a fun change of pace :) But again, as of yesterday she needed a platelet transfusion and today a PRBC infusion has just gone up. We pray that this round will be far less traumatising on Ellie (and all of us) as compared to the last round. Paul, Jen and I feel confident that the fact that Ellie is communicating now and the fact that she knows the routine of how this goes, will enable her to get through this phase a little more comfortably.

Thank you ALL again for all of the continued well wishes, cards, care packages, meals and daily or weekly check ins. Love, K+P