Today has been fun. Yesterday was good, today was fun. We are at a stable time where we are just watching Chandler's levels and adjusting medications accordingly. Staying hydrated with extra fluids, keeping a close eye on his blood pressure since it's been a bit high, torturing him with removing band aids and IVs, taking blood samples for labs, ultrasounds to monitor his little vein flows, and continuing with his respiratory therapies. Every time someone walks in, he freaks out because he thinks he's about to be tortured, because he probably is.... but in between the nurse and doctor visits, and when we are up and not down, we are finally having actual fun when we can. He still has his moments of discomfort, but I am happy he's enjoying his time when he can. On top of the fun, Chandler got to eat REAL food! He can have whatever he wants! So for breakfast, he had his go to classic - pancakes. He also had a few bites of egg. Our nurse went to the Child Life storage and brought a bunch of goodies! Chandler was very excited about the booster seat he got to sit and enjoy breakfast in. I think he finally felt a bit normal, the smile on his face was priceless! We have seen the more smiles today than everyday here combined. We sat on a big play mat and built castles, birthday cakes, and jail cells for his evil "Romeo" PJ Masks Figurine. We colors Paw Patrol coloring books with some markers. He wasn't totally interested in coloring ornaments but maybe we will get to that later. He's finally enjoying some independence and his personality is starting to shine - the entire staff is certainly enjoying his cuteness. Duh, of course they are. I want to acknowledge the kind people who have donated items to this unit not only for the children, but for the parents. I was offered a Starbucks gift card (they rapidly grabbed it as soon as I mentioned my obsession with coffee - more like addiction but everyone here can relate), there was Panera for for parents for lunch the other day, and there's a plentiful amount of K-Cups so I'm not stuck drinking the pretty terrible hospital coffee that tastes like cardboard since it sits in the little cup for so long before it gets to you. And for Chandler, he's been given a cute little comfort Elmo, some toys, and the Girl Scouts put together these cute little activity kits for the kiddos in partnership with an organization called The Jared Box Project. Being here has really given me a new perspective - I want to start donating blood because it's used more often than I realized, and I'd like to get more involved because I am experiencing how helpful all these little comforts are. And again, thank you to all my friends and family that have helped make this stay more tolerable. Ouchies!!I feel AWFUL!!!!! We were snuggling on the recliner, and when we got up, his drain bag got stuck in the foot rest and it pulled on it and he was in so much pain. We were finally on the upswing where we could really decrease the frequency of the morphine, but he really feels it when it wears off. The poor night nurse is dealing with a screaming toddler, but she's been so patient and really patched up the drain nicely since it started to leak a little more - gross, I know.
What gives me the most anxiety (and him too!!!) is everything that sticks to him! The EKG stickers, the surgical tape, the IV tape, allll the sticky things. And he's traumatized from these damn sticky things, you cant even touch him. He gets so upset anytime anyone comes in the room. Poor kid, I just can't wait for this all to be overrrrrrrrrrrrr.
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AuthorFrom the eyes of the mom, me, Leah! The first hand experience watching my husband save our son's life by donating 17.1% of his liver. Casually releasing the stress of the day, here. ArchivesCategories |