The last two days have had their ups and downs. They decided to re-time Hana’s Cidofovir infusion so that it didn’t run overnight, hoping that she can get better rest. This worked out well. Without the formula through her NG tube, her diarrhea improved dramatically. She got tons of IV fluid to hydrate her. She also got more IV Magnesium and Albumin, so it was a lot of time attached to IVs. To meet some fluid goals they wanted to restart some NG tube feeds. The resident did ask me what I thought about adding half formula and I said I thought we should continue to wait and so that’s what happened. I’m glad she asked for my opinion this time.
Hana did some eating and drinking (water and rice milk) as well so by the end of the day her fluid balance in and out was very much positive. They decided, despite being over hydrated, to continue giving her continuous Pedialyte overnight, through her NG tube. I wasn’t thrilled with the idea but decided to go with it. I usually go with their suggestions unless I feel strongly against it.
Unfortunately, around midnight, Hana vomited up all the Pedialyte. At least none of the solid food came up from earlier in the day. We had a great swarm of night nurses that got things cleaned up quickly and Hana was clean enough and back to sleep quickly. They did not continue the overnight Pedialyte.
I slept terrible and then got up at 4:30 to head to the airport to pick up my sister and brother-in-law who had planned a few days visit with us months ago. I got to go to our house briefly and then back to the hospital before rounds started. Hana was asking for milk and Paul decided to grab some non-dairy milk from the cafeteria since it takes too long to get it from the patient food service. Hana drank some almond milk. I started slowly giving meds. Then, she threw it all up!
I was worried that maybe things were not improving as much as I thought. The team rounded on Hana ten minutes later and they decided to hold all meds that weren’t essential. Then the pharmacists mentioned that Cidofovir can cause nausea even after a treatment which was something the doctors did not seem aware of, so they decided Hana needed more Zofran (anti-nausea medication). They also decided to hold off on trying to add formula back into Hana’s NG tube feeds, until later in the day (that was my suggestion).
Things got better. Hana didn’t eat much until late in the day, when she had about a cup of coconut sticky rice. She sat up and painted. We put her in the wagon and wheeled her around the room. She really wanted to leave the room and I think she is getting depressed about being here. I reluctantly agreed to adding formula mixed with Pedialyte back into her feeds. Now my new focus is getting out of here sooner rather than later and if that means NG tube feeds than so be it. Hana’s eating will improve faster when she is not depressed in a hospital.
We need to get beyond this threat of dehydration. It is such a balancing act. We need to be beyond the need for IV fluids and replacements (like Magnesium and Albumin). We need Hana tolerating her medications and with good drug levels. Her Tacrolimus level needs to be stable. Then maybe we can talk about going home. Tomorrow they run the tests for the adenovirus, so we will have more information on how quickly the Cidofovir is working. She gets a fourth dose of Cidofovir tomorrow afternoon.
It is so heartwarming to see her want to do something besides watch TV.
6 thoughts on “More Progress”
I would think about having a chat with the pharmacist about the different versions of zofran – iv versus pill versus meltable in mouth tab (which I use). I would also ask them about using zofran for delayed nausea – which is what she is having…in chemo patients who are also severely immune suppressed etc. they use a low dose of ativan for the delayed nausea instead of zofran because zofran can cause headache and not work when it is drug induced delayed nausea. just a thought!
Please let Hana know that Poppy missed her very much and can’t wait to see her. She had lots of fun with Ava and Astro when she stayed her with Mike and me, and all of us can’t wait until she’s able to visit again! When Astro hears Poppy’s name, he barks a bark of familiarity because he knows exactly who she is!
Sweet baby. Thinking of you all💕
I love that little hand painting🙌🏻Home soon🙏🏻
Each day Hana will continue to improve. A New Year beckons her back to her own home with her amazing parents. Wishing all of you the best always.
Get well soon Hana! Praying for you in RI