Overnight at CHB

I thought we were getting away with an easy day at the clinic. After we met with our NP and discussed how Kai has not been doing well, we decided to skip his chemo (avastin) but they wanted to give him an IV dose of Zofran and Reglan to help his stomach and reflux. He was prescribed reglan last week for his reflux/motility issues but I hadn’t been giving it to him because I was afraid of the side affects. They assured me it was a low dose and it was worth it for him, so we went ahead with the IV dose. He got a bolus of fluids and his meds without much problem. They de-accessed him and we were packing up to go home. We all kind of joked that we were in and out so quick. I couldn’t believe we were actually get out of there before 1:00…and then we didn’t.
We were talking to some of our nurses, just catching up and all of a sudden I felt like Kai was a little warm. His temp was just over 100. Not too big a deal, but then he started getting really irritated. He started spitting up and whining and shaking. Since he didn’t even have chemo It was alarming why he felt bawdiest able all of a sudden. As more of his doctors came by to see him, he was getting worse. Before I knew it we were in line for a shunt check CT scan and our nurse softly said ‘you are probably staying the night’.
So we headed down stairs for a scan and then we were admitted up to to the neuro-oncology floor at children’s. Thankfully his scan was fine, nothing wrong with the shunt.
We got a single room with a bed, so Kai and I snuggled all night while he got fluids and food and meds to keep him comfortable. He woke several times and although he was feeling better from the fluids he is still pretty shaky all night.
Today we have met with the rest of the team, neuro, neuro-onc and nutrition.
Right now there are a few theories rolling around:
1. he had that 1% reaction to the reglan that they assured me would not happen in such a small dose.
2. These are affects brought on by tumor growth.
3. He came in pretty dehydrated so these meds were to much for him to handle.
They all agree that each of these factors play a part.
He got Benadryl all night to counteract the reglan but he is still remain extra shaky, many hours after the reglan was expected to have worn off. He has been having these shakes and tremors for a while now, so I have no doubt that it also has a lot to do with the tumor growth.

For now they put him back on steroids to Hopefully relieve some of the worsening symptoms. Of course we know steroids come with their own list of problems but for now it’s something we are going to have to live with. The plan is to reduce his dose by tomorrow to a more tolerable dose that he can live with for a while, without making him crazy….we will see.

After a good night of hydration and food, he has now been NPO since this morning. They are hoping to get him into a full MRI today, but they admitted it is not very likely. Until we know for sure he is not allowed to eat. Being on steroids and not being able to eat is not a good combination, so again we have spent most of the day managing his pain and irritability. He is resting well now after a little dose of IV Ativan, wow that stuff hits quick when it’s IV!

Hopefully after starving him all day they can actually get us into MRI today! If not they will feed him tonight and start this whole process over again in the morning.

Either way it looks like we are gonna be here a few more days.

Ka resting in his bed, with CRAZY hair! ❤

5 thoughts on “Overnight at CHB

  1. I’m so sad to hear you have to stay a few days in the hospital, and that Kai is feeling so awful. I’m thinking of you and hoping you get some good information about what’s going on and the best way to help Kai feel better. Also hoping you’ll be able to get a little rest, though I know that is all too rare in the hospital.

    Much love- Allison

  2. Kerri, I’m praying for you and Kai. I’m praying they will be able to comfort Kai, thereby of course comforting you. Please do your best to take care of yourself.
    Peace, Jen

  3. My angel Kerri,
    I am so sorry you and Kai have to go through this horror. Please know that the family and I think of you every day and our hearts and our love are with you.

  4. Kerri,
    You are so strong! Kai is so lucky to have your wisdom and comfort to guide him through this terrible time. We are nonstop thinking and praying for you all, especially that little man!

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