Luke Under Anesthesia Again - hopefully last time for a long time
The feeding tube that Luke got back in April during his last hospital stay has begun to degrade. It's time for some new hardware. That first tube was only supposed to be in there 6 - 8 weeks, but we hung in there for 10 weeks.
Mom is ever looking on to be ready to care for her kids no matter the cost. She amazes me.
Here's a close up shot of the original tube. After today it's gone.
The procedure was simple enough, but did take longer than expected. The doc had some challenges getting the scope down Luke's long neck into his tummy. True story :)
Even with those minor complications we did great. But you can see here that waking up was from the drug induced sleep was difficult.
Once Luke was awake enough to get up we were on our way home. He was very interested in his new "button". We are hoping that Luke's quality of life will be much higher with this new low-profile feeding tube button compared to that big dangly tube he had before!
That looks a lot easier to deal with!
In some ways this new button is more hassle for us, but it is much much less for Luke.
Hmmm perhaps a blog/video describing the differences between them for education...
How is he now? How are his health and condition?
Luke struggles with many things. He has a lot of sensory issues. Many of those we simply cannot understand. The feeding tube was installed a few months ago as a result of his refusal to eat. We believe that one of the reasons that he stopped eating was a sensory issue with using his fingers. We were able to get his to eat only if we fed him like a baby. He would not do it on his own.
Now after having the feeding tube he is getting stronger since we are able to get the correct number of calories in him every day. The struggle now (besides just scheduling and maintaining the tube) is to get Luke to eat and drink a little bit every day so he does not lose the muscle strength and coordination in his throat to do so. The foods and drinks that he intakes daily now by mouth are really just "pleasure foods". Their main purpose is to keep his throat muscles in good shape.
Overall we are seeing some slow progress with his weight and cognitive responses. Mamakirbs is very tired keeping up with all of it, but I know she would do this for any of her kids anytime.
Thank you for caring.
I know as parents like me you will never give up on your son. This is really tiring and needs a lot of sacrifices... Believe me, you are included in my prayers... 2x a week I am reading your article to be updated...
Wow, that button looks much simpler. Here's hoping it works very well!
Wow, that button looks
Much simpler. Here's hoping
It works very well!
- donkeypong
I'm a bot. I detect haiku.
I do love a good
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when I scan steemit
One major benefit of this new smaller button is that there is no bulky dangly parts that keep Luke occupied. He has lost a lot of time just being concerned about that thing on his belly.
Continued prayers for your family, hopefully this will make things a tad easier!
Thank you. I think it will help make Luke's time "off the machine" better at least :)
That sure looks much more convenient! I hope it works well for Luke.
And as for moms, moms just don't have a choice and can cope with anything when it comes to their kids I guess. There's always this invisible umbilical cord between moms and their kids. At least that's how it goes with moms like your wife I think.
Take care you all! Love from the Netherlands <3
Pobresito Luke, thank God they live in a country where there is everything and science is very advanced. The specialists of the United States always go forward in science to favor patients. Jehovah bless you always family Kirbs.
I hope Luke can regain his normal weight very soon, a big hug to Mamakirbs and Daddykirbs!
I hope this new option is beneficial for Luke. He is lucky to have such dedicated parents.@daddykirbs.
From Venezuela a big hug. Sorry if I did not write it well. I'm getting a translator.
It is a very hard struggle, and mothers do everything for their children. If you look tired but with a look of extraordinary inner strength that only a mother has
My best wishes for you and Luke, without a doubt, when you are with the hand of God, everything goes well or at least gives us the tools to try and reach. A mother always does everything possible to protect and care for their children, even if it means giving life itself, @mamakirbs no doubt that is a super mom. Thank God everything went as expected, Luke's face after anesthesia, causes hug and pamper him hahaha, a big hug for you and your family, God continue blessing.