Getting hard to do nothing

The past few days have been tough on me. Kai is feeling better since we are treating his ear infection, but not as good as I had hoped.
I’v been spending my days researching these stupid tumors again. Looking for treatments. Hoping that I can find something that I can convince myself might help him. Not save him, just help him feel better than he does right now. It’s sometimes hard to remember that the treatments were only making him feel worse. I look back a few months and see pictures of him smiling and playing and I think ‘what was he on then? Maybe we should go back on that? Maybe he could get some relief?’
I neglect the FACT that a few months ago while he would smile, he could no longer sit up or do many other things he could in the months before that. I KNOW this has been a slow and steady decline. I KNOW that treatment gave Kai no relief and caused him additional discomfort but it’s getting hard to sit here and do nothing
His body has been really stiff lately. His legs just stick out like boards. I have to bend them around me when I pick him up to hold him. I’m not sure he is really seeing much of anything anymore. Last week he stopped drinking from his bottle completely. I knew he has been having trouble swallowing over the past few weeks, but once we found the ear infection I was really hoping it was related to that.
That happens right? Kids get ear infections and then they don’t want to suck or eat because it hurts.
I let myself get excited about the possibility that once the ear infection was feeling better he would drink again.
This morning I tried to feed him some purée by mouth which he had been doing pretty well with, until the past few days. Today he could not swallow the food. He tried and he wanted it but I could hear it sitting in the back of his throat. His nurses have warned me that it’s probably not safe to feed him this way anymore because he could aspirate and get pneumonia. I’m not sure which would be worse, pneumonia or watching him starve to death…
He does still have his g-tube so after consulting with the clinic on Monday I came home with a renewed plan for feeding and hydration. So far it has gone pretty well – meaning he has not vomited up his food, but he did wake up soaked in urine 3 times last night and he hasn’t pooped in 3 days. If he doesn’t go by morning we are back to a suppository again. And while he has not vomited we are. No where near our goal of intake. He just can’t handle the volume.
Every day I try to come up with a new plan to keep up his energy, get a smile out of him, keep him hydrated and comfortable. Everyday I question if what I am doing is the right thing. Just a few days ago I said, with complete confidence, to another mom that we make the best decision we can each day and for that day it is the absolute right decision, and here I am a few days later questioning my every thought.

13 thoughts on “Getting hard to do nothing

  1. oh Kerri, my heart goes out to you….that advice is good but at the same time is very difficult to follow. Advice that no parent should ever even have to think about except in this nightmare of childhood cancer. You are doing the very best for your beuatiful sweet Kai, even when it seems as if you aren’t. We see it, you are following your heart. His team of providers are top notch. We pray for his comfort and your peace. Sending loads of positive thoughts and prayers,
    Always with hope,

  2. Kerri even if you doubt yourself I would trust his team implicitly as you are in the best hospital for LGGs. If you see a treatment that you think could help without making him worse, bring it up to them and see if they think it is a viable option and then trust Dr. K’s feelings. I keep praying for you guys, look every day for updates. Missy (abby’s mom)

  3. Don’t second guess yourself, sweetie. If you thought in that moment that it was the right decision and you were confident about it, chances are that it WAS the right decision. I have no idea what it’s got to be like in your shoes right now but I so admire the grace, honesty and dignity with which you are handling everything. You are a wonderful mother!

  4. Kerri,
    As I’ve said; I could never imagine the pain and frustration you go through everyday, but know this… you are doing everything right. You love Kai with every ounce of your being and that is all anyone can ask for. I pray that you can enjoy more good days and that you find comfort from somewhere, somehow. Peace be with YOU & your family. Andrea

  5. Kerri,

    Don’t doubt yourself for a second. You know Kai better than anyone and you are doing everything right. I feel your frustration because I know you want to make everything better, it is a natural instinct. Follow you heart. Know that you have so many sending love, positive thoughts and prayers your way.

    I hope to see you this weekend!

  6. Kerri
    I can’t imagine what you are going through ( which no parent should have to) but I know Kai is lucky to have you as a Mom. You can’t second guess your self- what you do for him each day is what you think is best on that day & even though when you look back it might not seem so. I think you are a remarkable person & I wish you strength in the days ahead. Please know you ,Mark & Kai are in my thoughts & prayers

  7. Oh Kerri, what a horrible roller coaster ride. I echo what everyone has already said about knowing that the decisions you make for Kai are always the right ones. I think sometimes that means that what seems like the right decision one moment might feel differently even an hour later. I can hear how much you want to make Kai’s pain go away, and can only imagine how awful it is for you to watch that. If you find treatments in your research that you wonder about, I think asking the team is a good way to settle your mind so that you can at least feel like you’ve checked out the options. I am thinking of you guys constantly, and hoping that each day brings less pain. Much love- Al

  8. wishing you peace in each moment…and gosh I’m glad you got to Camp…
    love and peace,
    Kristin, Genna & Rosie’s mom (and Andrew but he didn’t make it to Camp this summer)

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