At the end of the IVIG post, I mentioned I had something exciting and special to share to Hana. I’ll tell you about that here, but first, I’ll give you an update on how she is doing.
Hana’s fever broke and things got much better. She was still kind out of it the next day, but she also didn’t really get to sleep until 1am the night (morning) before. She mostly acted like she was sick and not feeling well. After her afternoon nap she was back to her usual self! They continued the IV antibiotics and one antibiotic, Vancomycin, requires a blood test before the fourth dose to make sure it isn’t taxing the kidneys too much. I knew earlier in the week they were a bit concerned about her kidneys already because of a high creatinine level.
So, this required another blood drawl which was totally botched. A flex nurse came to do a heel stick and was not able to catch the blood in her tube for collection. They tried to get someone from Vascular Access, but they all seemed to be gone for the day. Then they tried to call the lab to get someone but by then it was 8:30 and the blood was supposed to be drawn at 7:30 and the fellow that was on that night said that we missed the window to get the blood draw and the results would not be accurate. Instead she was going to give the Vancomycin dose anyway and then do the blood test before the fifth dose. Unfortunately that would mean a blood draw at 4am.
I was not happy about it but I was worried about Hana’s kidneys. The nurse tried to press the fellow to wait until morning but she said no. Hana has done fine on Vancomycin before. So, at 4am the phlebotomist came and woke Hana up and drew blood. He actually got it right away so that part was fine but Hana was still crying and lightly screaming and then did not go back to sleep until 7am. I was so tired! I felt terrible that Hana had to put up with all that. Then, the results came back with an utterly ridiculous value of 62 (I think they were looking for something to be 4-6, whatever that means, I don’t know). The team, when rounding in the morning, were appalled at the whole story.
I wish I had known better, but I didn’t know enough to push back. In the end they decided to stop the antibiotics all together.
On to the surprise for Hana. I want to start off by saying we have received many, many wonderful, generous and heartfelt surprises, including ones from strangers. For example, the husband of a friend from college stopped by on Saturday with milk (my request!) and some really awesome toys for Hana which she loved! Or the amazing Christmas tree created by the students at Leach School in Delaware or all the handwritten and handcrafted paper Christmas ornaments created by children from all over including what seemed to be, every student at Parkersburg Catholic High School. But the surprise we got Thursday was really different from anything else so far.
As some of you may know. Hana loves Baby Signing Time – a show that teaches babies and really young kids sign language. It has great music and is really well done. It is a spinoff of Signing Time, which was a show on TV for older kids. The woman who does the show, Rachel Coleman, also did a show called Rachel and the Treeschoolers, which Hana also loves. She watches them all the time to calm her down. We play them on the iPad when she is getting blood draws, echocardiagrams, shots, dressing changes, etc. She watched them to keep her calm so she wouldn’t throw up during tube feeds at home and also to keep her occupied when we had to patch one of her eyes for an hour a day. They work like magic. We were introduced to Baby Signing Time by some friends from college who bought us the DVDs. I don’t know what we would do without these shows. I tried other shows and they just haven’t worked!
Well a very special friend of Hana’s decided to contact Rachel Coleman to tell her how much her shows meant to Hana and that she watches them everyday in the hospital. So Rachel recorded a personal video message to Hana and sent it to us! In the video she talks to Hana and walks through the studio and backstage and shows some old props and outfits from the episodes. It was really awesome. When I showed it to Hana she was mesmerized with a concentrated look on her face trying to figure out how the woman from her favorite shows is on this video talking to her. It was very, very touching. I cried. Paul was amazed. Rachel Coleman is obviously someone really dedicated to children, generous with her time (she is also sending Hana episodes of Signing Time) and a genuinely good person. It meant so much to us. Rachel has one daughter who is deaf and another daughter with cerebal palsy.
Day 53 in the hospital, Day 35 post-Berlin Heart, Day 26 on the transplant list.