A Challenging Day - Luke's New Feeding Tube
It was an emotional morning preparing to send our child into a surgery to alter how he would intake nutrition perhaps for the rest of his life.
Sure, there were plenty of medical professionals stating all the many benefits of the procedure, and other parents of special needs kids sharing how this changed their lives positively...
But it doesn't seem to completely settle the deep hurt that resides in your gut, the fears that occupy those dark places in the back of your mind when this is your child that is about to go under anesthesia to be altered (potentially) forever.
Luke was a rock as he was told what was about to happen. He seemed aware of the need and was steady all the way up to the point where he was being taken into pre-op for anesthesia. At that point he let mom know that he wanted to go home. This, of course, broke mom's heart.
The procedure itself isn't a "big deal" from a surgery perspective. It takes about 15 minutes for an experienced surgeon to install the Percutaneous Endoscopic Gastrostomy (PEG) tube. The special challenge with Luke was, in part, the fact that he was still battling the trail end of his pneumonia infection. Anytime there are airway limitations it complicates surgeries.
We were assured at the last minute by a team of professionals that it ok (though admitting increased risk for insurance purposes). Mamakirbs and I were escorted to the waiting room right after friends of ours joined us in prayer over Luke.
The wait in the lobby was not comfortable, but true to their word the procedure was short. When the doc came out to let us know that all went well we were relieved.
It took Luke a short while to come out of the dizzying haze of anesthesia. He did not like the sensation of the drugs wearing off nor the new equipment sticking out from below his ribs. We had to remind him over and over to leave the affected site alone.
Once back at the room we got Luke settled in. Mamakirbs hung out for a couple hours before she needed to head back to the farm. Luke will now spend about 30 hours without any input other than the IV fluids.
Now our task is to just wait, recover and to learn how this new feeding hardware will change our lives.
My prayers stay on your family...
You should look into one of these
It makes it more comfortable. I know of another but will have to dig deep to find it. But it helps so that the plastic doesn’t rub and cause people to fuss with it. Will post it when I find it.
Thank you for that. It looks like it be useful.
Sorry I can’t do more.
Early today I sent Luke mail, before I knew about this.
Keep an 👁 out
I'll have to have Mamakirbs check the PO Box. I haven't been home for a week. Never worry about doing "more". Just sharing here with me is very encouraging. Thank you.
I responded to @crowbarmama s post about perspective with this.
“I’m just glad the glass exists!
I was raised to drink from your hand.
It could always be worse.
When I found out about my kids, I was told when it rains it pours. I cried because the saying is always used badly, I already lost a lot of children. Then he counted. Then I understood.
I started to say “if you make it your hell it will be, but if you make it your heaven it will be”. I have triplets. They are my heaven.
I am very glad the glass even exists.”
It is what you make it, perspective.
Just breath, don’t look at the monitors and count each heart beat. Look at him, be there for him.
I had to be reminded of this when my babies where in the NICU. Presence is key, show him it will be all right and this is not the end.
He is now part way to being a cyborg or something extra special and cool now. 😊💗
Thank you :)
Praying for Luke and the family!
Prayers for the Kirby family, I hope the transition is smooth for Mr Luke!
Both David and I are praying for Luke and for your family. Rest in the arms of our Lord. He has everything in his hands and is working together for the good of us who love him.
Think that this is temporary, so that he can heal completely.
You are in my prayers.
God bless you.
It's hard for what you're going through.
We here still praying.
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Looks like Luke will be on the mend soon and everything will be back to normal, whatever that is. Prayers being sent from here in Colorado.
Of course he does not understand what was happening to him or why he had to be there, that is normal that he does not understand it. Good thing that everything went well from the operation, we continue praying for this treatment to improve the life of Luke and his family
From Venezuela our blessings