So yesterday Jack underwent Gtube surgery as he begins to lose the ability to chew and swallow. By far one of the hardest transition as Jack has progressed in this disease over the years.
He has tolerated the liquids and currently he is receiving formula feeds. His body, so far, is doing pretty well. He definitely had a sleepless night of trying to get comfortable and not getting there. He decided to wait till sunrise to shut his eyes while I cleaned his bed for the 4th or maybe 5th time.? I have witnessed a lot of stomach contents that leaks that I just had no idea I would be viewing. And now on a regular basis. Thankfully I was so tired it didn’t phase me.
Today we have our training on care, usage, and troublshooting with his new medical devices (Mic-Key button, tubes, pumps, bolus, syringes…). And hopefully he will be able to taste some food by mouth today. His blanket has not been cutting it. Jack loves food and it’s so heartbreaking to neglect him of it. Thinking pancakes, sausage, strawberries and yogurt will be ordered up, his fave foods!
I like to think he understands all of this, that he walks so closely with his God that it just all make sense to him. And as far as my journey with him, I continue to be amazed at his bravery, strength and continuous laughs during Disney movies (the best). Moms broken heart repaired by a single smile or giggle.
Thank you all for the prayers and please keep them coming as he heals and I adjust.
Juliet continues to share her journey, “my brother has a YouTube. And I get to feed him with the YouTube!” She’s amazing.