Still Miles to Go

Today, Keith and I went in to Children’s Hospital Boston to visit some friends. The main purpose of our visit was to watch over Sasha while her parents took her brother to an appointment with the metabolism doctor in another wing of the hospital. As you may or may not recall, I mentioned that Sasha was admitted to CHB on Tuesday. She was having bowel issues as well as some bothersome neurological impairments. The staff in the Emergency Department exhausted their options so she was admitted for some pretty big treatments for such a little girl. Keith went in yesterday night to visit and bring Stefani and Ralph some supplies and came back telling of the little girl who was not the Sasha we know and love. As I wrote in my last post, she is a spirited, joyful, engaging, empowering, strong, and inspiring 5-year-old. I admire her fierceness. Last night, however, she was not fierce; she was resigned.

When Keith and I showed up at 10am, Sasha was still asleep. This is particularly odd for Sasha as she rarely sleeps past 7am. We sneaked in and sat down nearby her bed with True. Pretty soon, the metabolism team came around to check on her so I quietly roused her. When she saw us, she perked up immediately and sat up with a grin. When she saw True, that grin turned into a full-on smile. She giggled as True hopped up onto her bed and gave her kisses. The metabolism team was pleased that she was so responsive as she apparently hadn’t been in the previous days. She was able to hop down and perform the tasks the team asked of her with very little prodding. This pleased the metabolism team further. She showed them some of True’s tricks and said “thank you” as they left.

We settled in with our spunky little tomboy to play some Nintendo DS (her favorite birthday gift, no doubt!). In about 5 minutes, the neurology team came in. She was a little more resistant to them as she had just finished showing the others her skills, but as long as Keith, True, and I did the tasks with her, she was compliant. This reluctance to do what was asked is how we knew the fierceness in the five-year-old was returning. Soon after the neurology team left, her parents showed back up with Will. And, boy, was Will happy to see his little sister!

The neurology team was called back in to speak with Stef and Ralph and – this time – Sasha flat out refused to do the tasks asked of her. Sasha was back! After some begging and the threat of restriction from her DS, she repeated the tasks one last time. The team was cautiously optimistic about a discharge by day’s end. Yay!

At this time, our good friend, Jessica, showed up for a visit. Her daughter, Eithene, has been inpatient most of her four years due to mito, VACTERL Association, and Ehler’s Danlos Syndrome. I previous wrote about a visit True and I took to see her last time she was inpatient at CHB. Thankfully, Eithene was able to leave in time to celebrate her 4th birthday, but, unfortunately, she was readmitted just over a week later.

Soon after Jessica left, blood samples were drawn, Sasha’s nasogastric tube was removed, and discharge papers were drawn up. Because some of her labs were slightly off, Keith and I decided to make the trek up to visit Eithene before we left. But first, we went next door to visit a girl who had requested to see True. We stopped in the doorway because people were up and taking pictures. I noticed a girl who looked somewhat familiar, but I couldn’t quite place her (high school, doctor’s appointments…?).

It turns out it was Demi Lovato from Disney Channel’s “Sonny With a Chance.” She came by to see Sasha next. Sasha hopped up on my lap to meet her and was starstruck even though we don’t think she had any idea who Demi was. Sasha was adorable speaking with her and the look on her face when she found out they shared the same birthday (August 20th) was priceless. Demi signed a picture for Sasha and took some pictures and then Keith and I were off to see Eithene.

Eithene was in the middle of physical therapy when we arrived, but looked quite excited to see True. She gave True a pat and then Keith and I waited for her to finish and return to her room. True helped encourage Eithene through her PT and then we took a walk down the halls so we could all chat. Jessica has one of the most amazing outlooks on life despite what she and her family have been through. It is always a joy to get the chance to spend some time with her and her daughter. Unfortunately, the visit was a short one because we needed to help get the kiddos packed up for discharge! But upon our departure, True gave Eithene a quick kiss on the cheek. 🙂

When we got back to the room, the discharge had occurred and we whisked the kids away to the car. As we left the room, Will said to the nursing staff, “Thanks for taking such good care of my sister.” Those words nearly brought tears to my eyes. Will is such a sweet and loving brother… most of the time. When we arrived home, I had to scold him for repeatedly hugging his sister when she repeatedly asked him to stop. Mid-scolding, he looked up at me and said, “Auntie Chelsea, you smell nice.” The ADHD strikes again! After I finished scolding him, I burst into a fit of giggles at the Will-ness of his comment and its timing.

Keith and I are not back home and resting. After an incredibly long day without a nap, I am confident in saying I will be sleeping all day tomorrow – and that’s no exaggeration!

Unfortunately, the day ended on a lower note when we found out our dear friend, 5-year-old Ava, was admitted to Tufts for GI issues including pain at the site of her GJ tube. We’re sending our love and lots of hugs to Ava and her family as well as Eithene and her family.