Turning A Corner

Today Hana started out feeling crummy but she seemed to really improve. Her second dose of Cidofovir was given overnight and while there weren’t any issues with it, the night did not go comfortably. The problem (in my opinion) was her NG tube feeds. They ordered full strength formula to run continuously over night for the second night in a row and I just think it contributed to her feeling miserable. She had several incidences of terrible diarrhea and she did not get good rest. They are always so fast to push the formula. Anyway, in the middle of the night we decided to water her feeds down with half pedialyte and the rest of the night was peaceful.

In the morning Hana seemed miserable. She drank some lactose-free milk and threw most of it up. Hana’s weight was down significantly, to where she was when she was admitted – dehydrated and that’s after being overhydrated overnight due to the Cidofovir infusion! During rounds they discussed her hydration and the resident seemed fixated on Hana’s weight over the last seven months which made me want to yell (just a little, but I was getting mad). The resident just does not have the whole picture of feeding therapy and tube weaning and discussions in clinic and weight checks and she didn’t ask me what I thought about Hana’s eating progress at home when she is feeling herself, she just threatened to show me her growth chart. I told her I KNOW what her growth chart looks like and I will put up a fight on unecessary tube feedings. I truly believe Hana will go back to eating when she feels better. Certainly, if we need the NG tube for hydration for a little while I can live with that. It turns out I didn’t need to put up a fight because the fellow and the attending didn’t feel it was appropriate to give her any more formula and Hana really just needs pedialyte and her gut needs to rest. Thank you.  I think if you’ve never had to deal with feeding disorders or tube feeding and weaning you just don’t get how hard and stressful it is. 

The plan today was to do whatever we could to slow down vomiting and diarrhea. They held her anti-rejection medication, Cellcept (it causes loose stools or diarrhea). They decided to give her IV Magnesium instead of more oral Magnesium (causes diarrhea) and they decided that whatever fluid she doesn’t drink she would get in pedialyte in order to reach her fluid goals. I decided that Hana was not getting any more lactose-free milk. 

In the afternoon one of the other families gave me an extra burrito they had and when I walked into the room with it Hana immediately asked for it. She ate the tortilla and some of the rice and a little of the beans and tomatoes! She drank water. She ate some pickle. She asked for macaroni and cheese and when that came she ate some of that! It felt like she was turning a corner! She felt like sitting up and seemed much less miserable. 

Hopefully we are now heading in the right direction. As much as I’d like to get out of here soon, I’m not in a big hurry. There is too much involved with hydration and Magnesium and medication levels and when you have a toddler that doesn’t quite know how to tell you how they are feeling and doesn’t understand reasoning yet it’s just too much guesswork and ultimately, stress. Plus, it’s nice to have the extra set of hands to help versus going at it solo at home during the day. Here, I don’t have to run to the lab for blood work or the doctor’s office or the pharmacy or draw up meds or wash soiled laundry or take out the trash or prepare food that Hana doesn’t eat.

I hope good rest is in our near future. I know Paul and I and Hana all need it. We also miss Poppy who is such a good, patient dog!

4 thoughts on “Turning A Corner

  1. Kathlene, I have been sporadically following Hana’s journey from the beginning. I just checked back in and saw the latest news. Ugh. I’d love to connect up with you, as we actually just met with the Heart Failure Team today, and discussed the probability of a heart transplant for our youngest daughter, Kylee. I identify with so much in your posts! Hoping this is a short stay for you all!
    – Susan (Rhodes) Dart

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