I promise one of these days i'll have cute pics to post. Right now I am just having a medically fragile mommy moment.
As hard as this has been, its also been a great learning experience. At 4 when the GJ still hadnt been placed, my Utah ped called the PICU resident. We got some insightful info that will help us in the future. CHOC doesnt have their own IR guy, they share with the adult hospital next door. I'll talk to my new ped here before making a decision (she is VERY good with fragile children) but more than likely CHOC will not be our primary hospital. This is all stuff we have to consider with Jax. That is why moving is a billion times more stressful with him. Dont get me wrong, CHOC has been fabulous! Super nice nurses, huge rooms, and I know if he was sick, they are more than capable of caring for him. Its just the small things we have to consider with him. Things like spending nearly two days in PICU to get a 5 minute procedure done. With so many different medical problems, we need what works best for us.
They made me leave when they did it, which I didnt like. But when I came back I see that they put in a huge GJ tube, not a button. This little, seemingly stupid thing has sent me to tears. Its a billion little things all meshed together that is my routine with my complicated child. Change something, and its like changing something on my autistic son. I wish there was a way I could truly let you see what I mean, but you'd have to walk a day in my shoes. I just know he is going to have this tube pulled out in days. Its big and bulky and sticks way out of his belly. I cant wrap a diaper around the g tube because the two ports are right next to each other. Just things to further complicate a complicated child.
With a dear friend in similar shoes, we talk about how scared we are. How we think about the future and what ifs. What happens when I cant lift him in and out of the tub anymore? Scary things for me to think about.
Tomorrow is a new day. The tears will be done, and we'll be ready to tackle the world again. I have a few more hours to pull myself together!
1 month ago
10 comments:
Cry those tears, take a deep breath, and get back to the Super Momma that you are! Having a child similiar to Jax....I totally get where you are coming from. Every once in awhile we need to release all the emotions, regroup, and then get back to business and all the busyness!
But, why did they put such a big GJ tube in?! That's crazy! Hope you get used to it soon, and hope it stays in! Hang in there! Big Hugs!
Oh Lacey, I'm so sorry. I know absolutely nothing of what you're going through, but I do know this - some moments totally warrant crying. It makes you feel just a bit better afterwards, doesn't it?
Hugs. I've got hugs and more hugs.
One day at a time... breath :)
Although our challenges are different, we all go to that mode of thinking about the future. Just remember, one day at a time. My child is 10 and 117 lbs. with mobility issues...please know that just as you have faced every challenge with Jax...you will figure it out...not figuring it out isn't really an option. You are an amazing Mom and no one can truly understand everything unless they spend a few days walking in your shoes. Sending a huge hug and let those tears out, we all need to have that release so we can refocus again, take care of and love our children even more.
That sounds so frustrating! In my life it always seems to be the little things that send me into a crying fit... it's the things that shouldn't be an issue that really bother me when they go wrong. Hoping the rest of the move goes smoothly.
I certainly cannot know how you feel as a mother with a fragile child. However I have had severe medical issues my entire life. Heart condition, neurological, lung disorder.
I had a stoke four years ago. However last year I had Guillan Barre. I am still paralyzed and due to other complications I have been bed-ridden this entire time. I cannot even transfer to a wheelchair.
Now doctors are doubting the stroke and Guillan Barre and wondering if I have adult onset Mitochondrial disease...but tests haven't showed it though I have all the symptoms except dementia and loss of cognitive ability.
I have a team of permanant doctors. Neuro, cardio, pulmo, stroke...
I was just wondering if you will search for individual doctors instead of just a ped? My individual doctors ha e always been so helpful and insightful or, if you are sticking with just a ped and using the hospital for other doctors for a reason
(my gastro has come to my home to change my tube or wen healthy enough I go to him, light sedation if was eber needed)
HUGS!!!!
Sending hugs across the miles!
Thinking of you Lacey!! I am so sorry things have not been off to a great start. It is so frustrating that they put in a ginormous tube in him when that wasn't what he had before. I seriously get so frustrated with doctors because even though they are doctors when you have a medically fragile kid things are not easy and making changes is a huge thing that takes time to get use to. They don't get it.
I'm praying things will start to go more smoothly and you can get settled somewhere for now.
Hugs!!!
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