Today was a new day, thanks to Toradol. This blog post could be an ad for the stuff — We’ve been wanting to add it since surgery, but her platelet count was too low until late yesterday. And boy are we happy it’s on board now! We’ve been waiting for this corner turn for what feels like much longer than 4 days. Sunley woke up and said “I haven’t had breakfast!” and we knew it was gonna be better. She still isn’t eating enough, and has lost a little weight, but her demeanor is steadily getting better and better. Look at this smile she gave us this afternoon:

Sunley has 2 chest tubes left in her. The right one is still producing quite a bit, but the left one looks just about done. Surgery prefers to wait and pull them both at the same time, since removal is definitely traumatic, but if the right continues for a while, then we will probably decide to pull the left one before the right. Most of Sunley’s pain is coming from the left chest tube, according to her, “in my heart and in my back.” Massaging under her shoulder blade seems to help a little. The tubes are also sewn really tightly at the entry point, which is obviously necessary with a toddler, but it also makes dressing changes on them pretty painful (you have to slide thin patches of gauze underneath the tube, while trying not to move it). And of course stripping (emptying) the tubes seems to hurt maybe even more than the left tube placement.

Sunley went on 3 walks today, and rode a tricycle around the halls. It was adorable, and she actually WANTED to get up and ride the trike! She was way more talkative with Derek and me, but of course still totally silent around the staff. Girl’s got major trust issues right now, and no one blames her for that! Tonight, while our nurse was stripping a tube, Sunley got so frustrated and looked at me and said “She’s hurting me!” It seems like no matter how much we explain it, the pain for gain concept is a lot for a 3 year old.

We tried to come off of oxygen today, but I really think that won’t be successful until we get the tubes out. The rate at which the tube will slow down is totally unpredictable, but I have said over and over, “We don’t care how long they stay in — the priority is that we don’t have to put them back!” and everyone agrees, of course.

We’ve added a bunch of lasix, tummy meds, and unfortunately Potassium. Several of the meds taste pretty bad, but nothing compares to potassium. She has thrown up twice after taking it. Because of all of this, we have spent hours convincing her to take any meds. How do you get a traumatized 3 year old to take oral medication when they are just flat out refusing? Wish us luck. Every part of recovery has its own unique challenges, and taking meds will probably remain a challenge for a while. Fortunately, Toradol and lasix, arguably the most important ones in her regimen right now, are administered via IV.

I have more thoughts, enough feelings to fill a book, but I’m gonna cap the update here tonight. I’m sure recovery will start moving at a faster pace now!