Today Hana turned 19-months old. It is also the 4-month mark of Hana being in the hospital. It seems like a lot longer than that. Below is the sign Hana and I made for the door to her room. We are really hoping that her nurse, Marisa, gets some special recognition for doing such an amazing job of handling the situation when Hana’s Ikus stopped. I think everyone deserves some kind of recognition because there were many others that also responded so quickly, it was really a great team effort.
Our restrictions with plugging in the Ikus have been mostly lifted. We still have to keep the Ikus plugged into the wall while Hana is in her room. This does limit our mobility in the room but we are working with it. Other than that we are just trying to get out of the room for twenty minutes at a time so that we wear down the battery each time.
I took the plugging into the wall situation very hard. Sometimes all of this hospital living can wear on you. Actually, having a child with a long term medical condition can wear on you. I deal with it by having a positive outlook and really trying to shield myself from negativity but it is a fine line. This latest thing just pushed me over the line, but I just remember that really, we are extremely grateful. Hana is being cared for by an amazing team of people in an amazing hospital. She has a very serious heart condition that has treatment options, even though transplant is not really a cure (it is swapping one heart condition for another). Not everyone has options. So we are very, very grateful.
I know I complained a little about her nurse the other day and I feel bad about that. The nurse is a very kind and caring person who is dedicated to giving Hana the best care she can. She is very attentive. She is a really nice person. I just was not thrilled about how she reacted to the light on the Ikus being a little slow to go off. But we are grateful to have so many great nurses.
This afternoon we got to take Hana outside twice. The first time we went to the atrium and took some pictures of Hana without her mask on (just for a few minutes). Today we also changed out her NG tube so she got several hours break from the tube and we got to take some tube free pictures too! She really loved smelling the flowers! She scrunched up her nose when she was working on smelling them! She loved inspecting the small flowers.
Later in the afternoon we were able to take her out to the grassy area in the front of the hospital. Hana was thrilled to see some new sights. There were some big birds (ravens) and squirrels. She also got to feel some grass! It was very exciting for her.
Thank you for all of your support!
122 days in the hospital, 103 days post-Berlin Heart, 95 days on the transplant list.