Linguine or Lo Mein?: June 2014

We spend a lot of time at Boston Children's Hospital. We just do. I'm not complaining about it, I'm just stating it as a fact. There are lots of people who spend WAY more time than we do, but there are also plenty who spend less.

Hospital days are long, stressful, tedious, and emotional for us. I stress about pre-transfusion hemoglobin, how many sticks it's going to take to get the girls' lines in, hives, ferritin trends, palpable spleens, antibody screens, getting a urine sample, labs, labs, and more labs...I just stress myself into a stressed tizzy. (Just ask my mother who I always call, nearly hysterical over something.) Hospital days are often 9+ hour days for us...starting in morning traffic and leaving in rush hour and Fenway crowds. By the time we get home, I am totally wasted.

I try as hard as I can to make hospital days easier and more pleasant for the girls. I pack lots of stuff to keep them happy, order their favorite foods, get them plenty of snacks, keep the DVD player loaded with a favorite video. I hold them and cuddle them and rub them and love them through the whole thing. I try to wait on the girls the best I can, only leaving their side to use the bathroom.

This is where our BCH village comes in. We are so blessed to have an amazing child life specialist who thinks of every little thing you could ever imagine to make things easier for the girls-and for me. We have a great nursing staff, including our favorite nurse who--somehow--has the magic touch getting Emmie's IV in with one stick. We have an NP who comes by to check on us, and an AMAZING hematologist who (as incredibly busy as he is) happily comes down whenever I ask for any reason-big or small. The volunteers, clinical assistants, admins, and even facilities staff all know us well and make us feel loved.

A few weeks ago, I walked into our infusion unit nearly hysterical. We were super late, both of the girls were covered in vomit--one from car sickness and one from a stomach virus. Everyone was upset and crying and frazzled and miserable. I just stood there, threw up my hands, and said to pretty much everyone at the nurse's station, "I NEED HELP. I AM OVERWHELMED." Everyone jumped up grabbing throw-up bins and towels and johnny's and ice water. I was nearly in tears worrying about dehydration from the vomiting creating impossible-to-find-veins and before I knew it there was a cranberry juice in my hand and everyone was reassuring me to calm down, that it would all be OK. And it was OK. Not an easy day by any stretch, but it was OK.

That was a crappy day. Today was a good day. No drama. Rosie was one stick and getting her blood and eating her 4 turkey sausages in no time. A new volunteer came by so I could take a quick breather and a walk for some hospital coffee. The clowns visited after lunch and we all laughed and laughed. The girls got clown noses and had the whole unit in stitches. The art therapist stopped by and before I knew it, an entire hour had passed with the girls working on art projects and having a great time. She even said that the girls got the "prize" for the best attention span of anyone she'd visited in a week. Then we were done. The girls gave hugs and high-fives and grabbed plenty of snacks and stickers for the road and we were all smiling. As we were leaving, I said to our dear child life specialist, "You know...this was a GOOD day at the hospital. A really, really good day."

People are always commenting on how busy we are doing fun things with the girls every minute we can. And, we do, because we want them to remember their childhood as lots of fun stuff, not lots of medical stuff. But, if we have to spend a 90 degree summer day at the hospital instead of at the beach, we are lucky to spend it at Boston Children's with skilled nurses, a caring staff, and circus clowns!

Hospital Day....