I’m ready to get out of here! Hana is dealing better than me and she hasn’t even left the room in weeks. Today I’m going to start weaning the amount of iPad watching, although she does that naturally too, as she gets interested in doing more things. I’m starting to get frustrated with the state of things.
The pediatric dermatologist came to look at Hana’s skin. He was concerned about the unusualness of it and so recommended a skin biopsy and additional tests. We were able to do the biopsy right in the room, about 30 minutes later. I sat in the recliner and held Hana in my lap while the nurse, resident and attending dermatologist did took the biopsy sample from the front of her thigh and then stitched her up. She did get lidocaine first and Tylenol but she still screamed on and off. About 30 minutes after it was all finished Hana was practically dancing around the room talking and laughing!
Since the biopsy, Hana’s really been mostly back to her usual self. She is laughing and playing and singing and climbing a little. It’s hard because she is often attached to some wires and tubes and therefore limited. Her appetite has been good, although the variety of what she’ll eat isn’t that great.
On the downside, Hana is still having high heart rates, bloating, and high blood pressure. Her neutrophils count is improving and so they restarted her Cellcept. Her Tacrolimus levels have still not been stable so we need that to be working better. Once she is off the Cidofovir, they can restart some of her other meds, including her enalapril which will help lower her blood pressure.
The pediatric dermatologist checks her skin every day. Today he said he was very pleased as her wound sites are looking much improved. It’s so weird to see wounds appear without any (outside) trauma. The skin is coming off and she is bleeding over the underlying bloody looking areas and so we have to keep them covered for now. I know they are very sensitive and hurt Hana. So far, there have not been any notable results, other than ruling out most scary things. The dermatologist is heavily leaning towards adenovirus causing transient changes to her clotting which caused injury to some small blood vessels. They are going to consult with hematology who may need to get involved based on a few more test results we are waiting on. It’s very strange to thing that Hana’s blood may be clotting too much when, for months on the Berlin Heart, they thinned her blood so it wouldn’t form clots and this was never a problem. It’s still puzzling why her rash appeared over her old lovenox injection sites and where her hospital ID band was on her ankle.
As I feel Hana’s health is getting back to normal, I ask the question, “When can we go home?” I know we have to wait on certain things, such as having stable Tacrolimus levels, but I understand the reasoning. But when I ask if we can finish the Cidofovir infusions at home I get a “no” or “but she has to be hyperhydrated”. I say, “So what?” Hana so far handles the treatment and hydration just fine. I think a nurse that came to the house for the treatment could certainly handle giving her IV saline along with the Cidofovir. That would be better than being in the hospital another week. Give me reasonable explanations for “No.”
As I’m writing this the resident has come in to tell me that Hana’s adenovirus PCR was run on Monday and came back NEGATIVE!!!! Now we need another negative today (she, the resident, is going to see if they can accelerate getting the results) and maybe we can go home this weekend!