Today we had a day free of any appointments so I decided it is time to embrace “not busy”. It’s been so busy for so long, just trying to keep our heads above water. Even before being hospitalized I was trying to cram as much fun into our day to make up for all the appointments and being restrained due to tube feeding and all the times a big vomit would ruin our plans. Also, I wanted to make Hana’s life good and full of experiences just in case she didn’t get to have many of them. Seize the day, I suppose. Maybe part of me knew a time would come when things would be limited, even very limited. Now we are relatively free again yet limited by exposure. We have all this time and only a few ways to spend it. It actually feels great! Plus I think Hana has a lot of catching up to do playing outside!
After breakfast Hana and I walked to the park. She was bored after an hour so I thought maybe she’d enjoy preschool at the hospital, although being in the hospital is not too appealing to me. Besides it felt like we spent all day there the day before. We started walking, meandering through the neighborhoods when we came upon an interesting looking place called the Arts Alliance Guild. I was even more intrigued when I saw it benefited the hospital.
It turned out to be a lovely Spanish style collection of buildings with courtyards and paths and fountains and gardens. Hana enjoyed running around there more than the playground! There were very few people there and it seemed tucked away in a sleepy neighborhood so that it felt like our own secret garden.
I wish I could say the rest of the day was as nice. After the afternoon nap I got the brilliant idea to see if Hana would be interested in a Peanut butter chocolate smoothie from Jamba Juice. I haven’t had one of these drinks in at least ten years. We got the smallest size and I poured some in a straw cup for Hana. She started slurping it down and I was delighted.
Then she sat up straight in her stroller and would not rest her back while we walked downtown. She started coughing. Then I got worried she was having a reaction to the peanut butter which she’s never had it and Paul had a peanut allergy. I decided I was going to head back maybe even right to the hospital. I checked her tongue and her breathing and she had no rash anywhere. But she seemed more and more bothered. Then I decided to call Stanford and while I was on the phone with them, Hana threw up.
So, no more peanut butter and no more PB chocolate love smoothies! We ended up going back to the Ronald McDonald House and by the time we got there Hana was back to her normal self.
Yesterday was a busy day at the hospital with bloodwork, echocardiogram, clinic appointment. Hana’s heart looks great. Her tacrolimus levels are still a little high so we decreased her dose. Her blood pressure is still too high so we went up on those meds. They started to wean the sildenafil (Viagra) who knew it was a medicine used to treat pulmonary hypertension!? Hana got her Berlin cannula site sutures removed!
Running after a toddler can be exhausting, especially when you have to keep her from touching too much or putting her fingers in her mouth. It’s almost an impossible task unless you keep them restrained all the time.
Remember that only a couple days are left to support Donate Life America and honoring Hana and her donor by purchasing a print from Eugenia Mancini Horan. Prints are available here:
Here’s one of Hana yesterday as we waited for the surgical team member to come and take out Hana’s sutures.