A couple days ago Jason overheard one of the doctors giving report to another physician. As he talked about Annika, he said, "She's probably the sickest kid we have in the CICU right now." I know Annika likes to be a trendsetter, but this isn't the contest you want to win.
Today, several therapists asked when she is graduating to the regular cardiac floor. We don't have an answer, but the way things are going, it feels like it could be really soon.
While I'd never wish to repeat the past few days, sinking so low has made the joy of healing indescribably sweet. For days, Annika didn't feel well enough to peek inside a gift bag. Heck, she didn't even want to snuggle a stuffed animal. Without a stuffy, Annie hardly seems like herself. Yesterday Annika was so depressed that she hardly spoke all day. When asked a question, she would morosely nod or shake her head in response. She just looked so sad. An Annika who doesn't talk, an Annika who doesn't smile, an Annika without any sass--well, that just doesn't feel like our Annika at all.
With the dawning of a new day, Annika turned a delightful leaf this morning. She is smiling, chatting, playing, teasing--it feels like we have our little girl back again! And oh, what a beautiful day!
***
Favorite moments:
While depressed for the most of the day, Annika did have three genuine smiles yesterday. Two were reserved for Talia and Eli. She was so happy to have her siblings come visit. She's missed them so much! The third smile came when Uncle Lance provided music therapy. She giggled at his song and insisted that Austin sing along as well.
Speaking of therapy, Annika had pet therapy come twice today. These furry visits make her so happy! She was equally delighted to have a visit from integrative medicine. You could see her whole body relax during her fifteen minute massage. In fact, she fell sound asleep and got a much needed nap afterward. The very best, however, is music therapy. I've mentioned that all of the hospital trauma I've experienced has made me kind of numb to most emotion. It's like I've expanded the emotional scale to such extremes that normal fluctuations just don't hit me the same way that they used to. Listening to the beautiful chords on the guitar as our therapist sang directly to our little girl--it opened channels of tears that have been welling for weeks. I don't have words to describe the spirit I felt in that moment as she sang to Annika in her lowest moment. You could see Annika's little body release the tension and feel peace. Weak as she was, Annika thanked her for learning "I'm Not That Girl" just for her. As the therapist went on to sing "Dos Oruguitas" from Encanto, I felt like heaven was speaking directly to us: "Viene Milagros"--miracles are coming.
***
Crepes! During her depressed day yesterday, Annika told Jason that the only thing she felt like eating was crepes. She wasn't being obnoxious--she had a craving, and nothing else sounded good. We live close enough that Jason could have driven home to make some, but it would have taken a big chunk of time, and the crepes would have been cold by the time they arrived back at the hospital. After a little reflection, I realized that the Ronald McDonald room upstairs had everything we would need: flour, eggs, milk, and butter. Jason and I headed over to their fully stocked kitchen, and in no time had savory and sweet crepes ready to go, complete with fried eggs and cheese or nutella, strawberries, and whipped cream. I feel so grateful to the Ronald McDonald room for making this indulgence possible for Annika!
Truly, the Ronald McDonald rooms have helped us in so many ways. Their family friendly spaces have given us a great place to gather and relax with Talia and Eli when they come to the hospital. We've been grateful for the quiet room when we've wanted to huddle as a family to pray and give blessings. Twice our social worker has requested a room for us to stay the night in the hospital close to Annika--once on the night of her transplant and again the night after they reopened her bedside. On both occasions, Jason and I were grateful to be able to sleep so close by. We are likewise grateful for the access to a washer and dryer so that we can wash Annika's blankets and stuffed animals every day, keeping them clean and safe for the ICU. Most of all, it has been such a blessing to have meals available here, saving money, time, and above all, stress.
***
Annika went for a walk today! They were able to discontinue her nitric oxide and high flow nasal cannula, so she got out of bed and walked around the unit with just her IV pole and an oxygen tank. This girl is so strong! We were amazed by her speed and grit as she made her way to the full-length windows to peer out at the mountains. While the foothills were beautiful, she rightfully commented that we need some more snow before Christmas.
Other notable progress: they removed Annika's NG (nasogastric) tube and the two wires sticking out of her chest that were used to pace her heart. They removed her arterial line (mostly because it got clogged), and she is currently running only three IV medications (at times she has had 12 going all at once.) They discontinued her NIRS monitoring, and her foley catheter is likewise out. Tomorrow they plan to remover her IJ (interjugular) central line, and they might be able to remove her chest tube as well if the bleeding is controlled. (Annika is currently being anti-coagulated because some clots formed in her left shoulder near the spot where they removed her ICD.) She has a nasal cannula, but it's only providing 1L of oxygen/min, and that's mostly to provide extra support for our heart. In other words, she looks so much more like the little girl we know!
***
If you talked to Annika today, she likely would have told you about the poop fest she had last night. After massive doses of both senna and Miralax, she set what might be an all-time record on the unit for the amount of poop. Uncle Justin is so very proud. Jason and our unflappable night nurse spent much of the night dealing with Annika's repeated Code Browns. I'll be honest--I'm kind of glad I missed all the fun. But gosh, Annika sure felt better after! Lest you think I missed out on all the fun, Annika did have a massive vomit episode during my day shift. Let me tell you, cleaning off an ICU child and their thousand lines and tubes and dressings is a LOT of work. I'm just glad her tummy settled down and we didn't have to do that all day long.
Other than that, today has been a joy. We've read books, listened to our favorite songs, eaten chocolate, done crafts, given each other back rubs, painted toenails, and basically just enjoyed each other's company. Annika has been so kind and polite to all of her caregivers--there are so many who are rooting for her! Each time I go up to the third floor to fetch her a slushie, I run into nurses and techs who ask how Annie is doing and tell me how much they are looking forward to having her there again. It makes me teary to realize how many people are cheering her along! It makes me think of how I prayed on the night of her transplant that she would be in the company of angels. I honestly feel like many of those angels are right here, right now. I have met so many nurses who commute long distances (Spanish Fork, Orem, Kaysville), just so they can care for these remarkable kids. There may be nursing jobs all over, but there is truly no other place like Primary Children's.
No comments:
Post a Comment