After we got home from EIRMC from our 4 day stay things got a little better and then worse.
We ended up back into the hospital due to possible dehydration. His wet diaper count had dropped significantly and on Saturday he hadn't had a single wet diaper. He had stopped wanting to eat or drink, so whatever nutrition he was getting was because we were syringe feeding him. We were so tired of everything by this point. It was getting ridiculous! No one could tell us what was going on.
We stayed in the hospital the third time over night and were discharged with again no answers.
We got discharged on a Sunday and saw our pediatrician the following Tuesday June 25th.
Up to this point Trenton had been very inconsolable, he would cry constantly and also would tighten his body and throw himself into an arch.
Trenton was still asleep when I left for work Tuesday morning, (which was not normal behavior for him the past several weeks). He ended up sleeping in until Mike went in to check on him at 8:30. He was awake but had contorted his body into a weird position, and his left eye was way off to the side while his right eye was straight. He wasn't crying, and almost looked drugged.
Mike took him into our appointment, they weighed him and found that he was down 4 pounds. His poor little body was only 16 pounds and he looked weak and frail. Our pediatrician was concerned about Trenton's eye as well as his weight. He recommended that we have some labs done, and that we head to SLC to PCMC to be treated.
Mike called me at work with the plan, and we were on the road with-in the hour.
We arrived at PCMC Tuesday at 4:00pm and were admitted right away.
They ran some more labs and then we waited for awhile. About 12:00am they placed a feeding tube in his nose. The next morning we had several consultations with different specialists. It all kind of ran into a blur after this.
We sat around while they did lots of labs, we talked to lots of doctors, and ate lots of junk food.
Mike had to go back home on Thursday morning to work...someone had to pay the bill! But my mom stayed with me and we talked to MORE doctors, and sat around some more.
Trenton was a champ, and after getting some calories into his system started acting slightly better.
We received a few packages from family and friends while we were there, and are so thankful for thoughtful people in our lives!
We met with a GI specialist, a Geneticist, a Pediatrician, a Nutritionist, a Rehab medicine specialist, a Physical Therapist, an Occupational Therapist, a Speech Therapist, etc.
We were able to get out of the room and take some much needed walks...
We had an EEG done, to check for possible seizures, after Trenton displayed some weird behavior. The results came back negative, but only really mean that while the test was being preformed there was no seizure activity.
We also had an MRI done of his brain to see what was going on. The results showed us a lot. It was found that Trenton's brain has what they call "Neurological Digression". Which means that since his first MRI back in December 2012 his brain has regressed even more. There were also more abnormalities found in his brain. We don't know much about this but we had some more in depth genetic testing done to look farther into a possible diagnosis, but there still is a 60% chance that we will never know exactly what, why, or how this all happened. And what the future looks like, but we will pray we are in that 40% chance of getting a diagnosis.
Through the OT we got Trenton a sling for his hand, so that he would learn to keep his hands open instead of closed.
Going for walks in the wagon from Aunt Tami, Uncle Vaughn, and family!!!
By Sunday things started turning around and looking upwards and Trenton started to look more like himself. He started to throw out little giggles and sly smiles and out hearts were on cloud nine!
We were scheduled to discharged that following Tuesday July 2nd, but before we could I had to learn how to place a feeding tube in Trenton's nose since it would be a permanent thing from now on. It was scary, but not has hard as I thought it would be.
And finally the moment came, we got to go home!!! After a week of living in a hospital, even a fantastic one like PCMC, I was SO ready to be home!
Once we got home life started getting back to a more normal way. Trenton has done very well since being home. He's on some medication to help relax his muscles, and it seems to be doing such a great job. He is more loose and able to finally start to hold on to things and bring them to his mouth!
The feeding tube is a permanent thing for now, he still doesn't have much desire to eat with his mouth, even though he is totally able to. They guess that he probably will never make it back up to even 30% by mouth, but we will work with him daily and see where we get. We are hoping to get on the schedule to have a G-tube placed. A G-tube is more discreet and is just right in his belly, and not through his nose.
We couldn't have asked for better doctors while we were at PCMC, and consider ourselves extremely lucky and blessed! We truly believe that things happened for a reason, and happened in the order they were meant to. We continue to work and pray daily for answers and results, but only time will tell.
We are beyond grateful for my mom to drop her life for a week to come be with Trenton and I. We also are so thankful to our Heavenly Father for the love he has given us, and for trusting us with such a special spirit! We have a long road ahead of us, but we are ready to get things going!