A little piece of heaven

Last Thursday marked our 4th urgent visit to ER because of complications with Nathan’s g-tube. A week after he got it he pulled it out. Then we got a defective tube that landed us back. Next we accidentally used the balloon port for medicine, and finally last week he pulled it out. The journey with the Gtube has been wrought with difficulty, pain, and discomfort. Nathan’s been very unhappy, not himself, and not tolerating feeds. In the meantime we’ve been stuck in countless loops as GI doesn’t know what to do, Surgery doesn’t know what to do, his doctor wants us to feed him all night long which means he wont’ sleep, and nobody wants to take responsibility.

This Saturday I finally said, Enough is Enough and started feeding him by mouth again. And lo and behold, he ate and ate and ate! He’s been eating like a champ for the past several days. We continue giving him liquids through the tube as that’s where he is at aspiration risk, but pureed and soft foods are okay for him to eat.

He hasn’t gained weight yet, in fact he’s lost a pound since this journey started. In 3 weeks we’re heading back in for hip surgery. I’m hoping he’ll continue to eat by mouth. Then we’ll augment his feeds with one night time feed, and continue hydrating him through the tube.

What a journey this has been!

As I type this, Nathan is sleeping peacefully. He is eating while he sleeps through the G-tube. Which he happens to be tolerating beautifully. While off oxygen. While also eating and drinking orally.

Nathan never ceases to amaze me. He is so strong!

He’s had an excellent day so far. He is relaxed, out of pain. They lowered the dosage of the pain meds and he’s doing well.

I think the worst is over and now we’re starting to prepare to return home.

I spoke at length with a dietician today and schooled her on blenderized diets (thanks Pam!). She is using the concepts that I gave her to create a customized nutrition plan for Nathan. We will eliminate casein, gluten, soy and eggs from his diet, and do a 4 day rotating diet. But I’m getting ahead of myself, I’ll share more about it soon.

For now the excellent news is that Nathan is doing well, is on the mend, and on his way to recovery.

Grateful, we are so very very grateful! And so appreciative of all the kind people praying, visiting, and wishing him well! We love you, thank you!

Mr. Smiles is on his way back. We haven’t really seen a full smile yet but we’re hoping to get there soon.

Yesterday’s surgery was tough for him. They’d hoped to do the procedure laproscopically, but when they went in, they saw that his intestines were plastered against the wall of his stomach and his anatomy was all out of place. According to the doctor, this was a result of his shunt infection when he was a baby. Thank you Dr. Jorge Lazaref, more damage to my son thanks to your negligence and incompetence.

They had to make quite a large incision above the “mess” as the doctor called it, to avoid creating any problems. The surgery was a bit more complicated as they had to work around body parts that weren’t where they were supposed to be, causing more inflammation and issues. Additionally, while in there the doctor did a bit more to his pylorus to improve his rate of gastric emptying. In the end the procedure took about 4 hours and was more difficult, invasive, and painful than anticipated.

The good news is that he’s now on his road to recovery. They took out the NG tube which was an important first step. He is on room oxygen and they’re starting to reduce the morphine dose. Today will be the worst day for him as the effect as the anesthesia fully wears off and he will start feeling all of the differences in his anatomy.

He’s been awake most of the morning and watching movies, so at least that’s a step forward.

Thanks for keeping Mr Smiles in your heart and prayers! And if you want to stay informed on an ongoing basis, friend me on Facebook or follow me on Twitter!