I Need To Go Home

This morning during rounds, everyone seemed in the mindset that Hana was getting the IV fluids she needed and was on her way to improving. Unfortunately, this ended up not being the case. Hana actually seemed a little worse.

In the morning, bloodwork again did not go well – it was an issue of technical skill rather than Hana being dehydrated. Three pokes later they finally had their 11mL of blood for all the labs they had ordered. This seemed to really bum out Hana for a while. When they weighed Hana she was an entire kilo heavier than the night before! I couldn’t believe but her face looked puffy and she had gotten a lot of fluid.

The big news of the day was Hana’s stool tested positive for adenovirus. This is a very common virus often associated with the common cold. It is usually found in young children. While it often causes respiratory symptoms, it can cause diarrhea and vomiting too. It is usually not a big deal – unless you are immunocompromised, like Hana, and then it can really knock you out. Apparently you can shed the virus for months without having symptoms. This is why it is important to wash your hands even when you don’t feel sick and when you haven’t been around anyone sick. The virus can live on surfaces for months. It is also can take two days to two weeks before you start to feel symptoms. It’s also possible that my cold was adenovirus and I passed it to Hana but it presented with different symptoms. But it’s also just as likely that she picked it up some other way too.

Today Hana sat up in bed for short spells but mostly she just wanted to lay in bed and watch cartoons. She ate and drank very little. She did finally pee and I think she was waiting to use the real toilet versus going in her diaper. By late afternoon everyone seemed disappointed she hadn’t perked up more. They started talking to the Infectious Disease team about more aggressive treatment. There is an antiviral drug called Cidofovir that is sometimes used in severe cases of adenovirus. It is an IV medication and it really strains the kidneys so many precautions must be taken. Tomorrow (Wednesday) we will know better if Hana qualifies as a severe case needing this drug.

Hana was very quiet all day. She requested to use the potty, water and late in the day she requested to eat. I sat her up and she nibbled some toast. I started asking she take a sip of water every 15 minutes and before I knew it she had drank 8 ounces (250mL) of water! She did not throw up. The one thing she kept saying, like a request, was “I need to go home.” That broke my heart.

It’s obvious, especially when she starts feeling a little better, that she does not want to be here. She almost seems depressed. I hope we can go home soon. They said that it’s entirely possible for her to perk up quickly and be able to go home. They do want to see her intake of food and water to be good, her electrolytes to be good and her outflow of urine to also be good. In the meantime they have stopped most of her medications. She is still getting her steroid, of course, and those medications associated with long term steroid use. But she is not getting any blood pressure medications or anti-rejection medications. Of course they have to monitor things very carefully when they do this but diarrhea and dehydration can cause anti-rejection meds to act in crazy ways. They did have to give her IV Magnesium, which they ran very, very slowly after I told them how it made her feel yesterday. They also added some potassium to her maintenance IV fluids.

I’m hoping tomorrow she perks up and we can go home, although being discharged tomorrow is very, very unlikely. With any luck we can go home on Thursday. Please send positive thoughts and prayers! 

Tuesday morning

In bed all day long

A short-lived perky spell

9 thoughts on “I Need To Go Home

  1. Poor thing. She looks totally wiped out. Sending prayers. You both need to go home. The rest of Christmas is waiting. Feel better little Hana.

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  2. Positive thoughts and prayers flying your way sweet little Hana! Love, Barb Beebe (Nicole Martuccis mom).🙏🙏❤️❤️

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  3. Please home Dear Jesus for this beautiful baby girl🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

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