Yesterday (Sunday) was pretty low key and boring. Hana got her Cidofovir treatment So there was a little extra activity but nothing notable. Today (Monday) was much different.
Hana woke early and cranky. She’s crying for food – pancakes, noodles, cheese. I’ve been a little worried about her distended stomach (from gas) as it seems to be a new symptom. I’ve also noticed her heart rate and blood pressure creeping up and although they are within an acceptable range it seems there should be an explanation as to why. The attending physician noticed this trend too and ordered an echocardiogram to be done today to check Hana’s heart function. In other news, Hana’s neutropenia seems a little bit better.
Hana and I got busy with her toy food. I put the bedside tray over her crib and sit her up. This is probably why it took me a little while to notice the rash. She didn’t have the rash in the morning during rounds. I called the nurse who came to look. Then the resident came and looked. Besides pink mottled skin and dots on her legs and arms (nothing on her abdomen, chest or back) she also had swollen and purple/red knees. Then the cardiology fellow came to look just as I was turning the lights out for nap time. Everyone seemed concerned and asked if Hana was having trouble walking or standing or itching or pain. She didn’t seem any different to me.
I finally got Hana to fall asleep and they showed up to do the echocardiogram. Hana never sleeps through echocardiograms. Then the GI fellow showed up and said that Hana was not ready to start any formula today and possibly tomorrow. She said they treat kids who have had liver transplants for adenovirus all the time and it just takes a long time to recover. She also said we would be here at least another week.
After that the heart failure/transplant fellow showed up to look at Hana’s rash. She ordered Benadryl. By the time she left, I knew there was not going to be any napping for Hana today. Later, after the Benadryl, the attending and fellow showed up and by that time the rash and knee swelling was starting to look better. The theories so far are – a delayed drug reaction to the Cidofovir, a reaction to adenovirus, a drug reaction to something else, a new infection. They need to watch and manage it carefully. They may need to pre-treat Hana with Benadryl before the next Cidofovir dose, which is tomorrow (Tuesday).
I wish that were the end of it. When the night nurse came in to do her assessment, Hana had a mild FEVER, 100.9. You never want to have a fever when you have lines going directly into your bloodstream because this could mean bacterial infection which can be lethal. Sigh. So then the nurse was gone for a long time, as she talked with the fellow and got all the stuff she would need. Then she came back and drew blood for testing and culture. Then we placed a bag to catch urine if Hana pees (sometimes this works, sometimes it doesn’t). Then the new TPN and lipids (the IV nutrition) were hung up and then the IV antibiotic (zosin) was started and by the time this was all finished it was late and Hana was so incredibly tired and cranky. It is now late for me and Paul too. Luckily we already got some preliminary blood test results back and the fellow came in to tell us that so far it’s not looking like a bacterial infection. This could still mean a drug reaction to go with the rash or maybe another viral infection on top of the adenovirus. This hospital is filled to the brim with contagious sick kids right now. It’s so bad that they are having kids share rooms that they normally would NEVER have share a room.
So we’ve been a little bit on pins and needles. In all of this I forgot to mention that Hana tried to eat playdough earlier in the day, she is so sadly desperate for food. She cried so hard when I swiped it away. I am both the bad guy and her comfort – how confusing that must be for her.
I also want to mention that a friend of ours, another little girl with cardiomyopathy and a few months younger than Hana, was admitted to the CVICU last night. She suddenly had a seizure and turned blue. She has no history nor known risk or reason to have a seizure so I can only imagine how intensely scary it was. She had two more seizures, one in the first ER and another in the Stanford ER. Her poor brother had to witness the intensity of the first seizure – as his parents thought they were going to lose his sister. That’s a lot for a little kid to handle. Please keep her and her family in your thoughts and prayers.