Updated: Aug 19, 2021
The day after our evaluation with Early Intervention Axel's P.T. calls us about 2pm. She said she had been on the phone all morning with all of Axel's doctors trying to get information as to why no one was doing anything about this major decline, the fact none of them could provide answers but also did not refer us to somewhere that could help was highly irritating. After she got the run around she finally got the OK from his neuro doctor that we needed to go to the Peoria Children's Hospital E.R. right away for an emergent swallow study. Colby and I being completely blindsided we rush up to the E.R thinking this is going to be a quick in/out trip but boy were we wrong!
We end up getting admitted, we see about a million different doctors and therapists all asking me the same questions, timelines, etc. There was multiple different teams of doctors such as the neurology team, physical therapist, occupational therapist, feeding therapist, nutritionist, all sorts of pediatric doctors plus all the students that follow them around there was a good 6-8 people in our room at all times just getting as much information possible because they've never seen something like this. Unfortunately the pulmonary doctor and the genetic doctor were out of town during this stay so we had to wait to meet with them.
They finally get us down for a swallow study, and Axel fails it. It shows he is definitely aspirating while eating and drinking. For those like me who didn't know what a swallow study was he sits in a chair with a machine like an Xray machine where we can see inside his mouth/throat and we feed him bites/sips of things and are able to watch it go down his throat on another screen and it shows where each part of food is going and what types of movements are going on inside his mouth.
Immediately they say he is done with the eating and drinking and he has to get a NG tube placed, which is a feeding tube through the nose that goes down to the belly and his toddler formulas get fed to him through a machine so that way he still gets the nutrients he needs but doesn't danger himself trying to eat. To me, at this moment, it's the worst news I could hear.. I mean, eating is our favorite hobby this is traumatic in that way and in the fact that literally four nurses had to come hold him down while they shove a tube down his nose and throat. It was terrible. They gave me hope in saying that it's just temporary and can be removed at any time but wanted us to think about a G-tube surgery, which is a surgery that installs a feeding tube into the belly. It is a little more permanent but also smaller and less of a hassle with having tubes and shit taped to his cute little face. That was even more traumatic to hear.. having to put my two year old into surgery?! However with him not having a diagnosis they were unsure how long he would have to rely on the feeding tube for nutrients.
As an added heartache during this time, Colby's dad had passed the weekend prior so they're in the process of planning and attending funeral services and events so Colby had to leave often to be with his family and be able to have that closure he needed while I stayed in the hospital with Axel. My parents were coming up from Florida to attended the services for Colby's dad and now they were being suckered into dog and house sitting too, haha. Meanwhile, Ryder is just living his best life hanging out with all his best friends, swimming at Grandmas house being spoiled by Mimi and Papa, doing literally whatever he wants! Basically at this moment our family is not catching any breaks.
And additional side note, Axel is also happy as can be. He is LOVIN' all the nurses going goo-goo over how cute and cheesy he is, he really put the charm on them, he is being so silly and cute. During his walks around the floor he has to yell HI and wave at everyone, it's crazy how resilient this babe is when I on the other hand have spent literally the whole stay just bawling my eyes out.
After this 5 or 6 day stay in the hospital, I don't remember how long it was honestly my days are all smashed together, we were discharged with a plan to get the G-tube surgery the following week (less than 5 days away). Within those 5 days of not being admitted into the hospital we did have an appointment with the genetics doctor who was gone the week we were admitted. So we go there they take all of our bloods and send it off to get tested (about an 8 week long wait). Mind you, this genetic appointment is the one we originally had scheduled for the end of September!
The day after his genetic appointment his doctor calls and says after speaking with the other docs they would like to do some additional testing before the surgery just so they can confirm there will be no complications with the anesthesia seeing as he had major loss muscle control since the last time he went under (MRI in May).. Also since we would be admitted the 8 week wait for the genetic results were able to get tested at rapid speeds (5ish days). So instead of 5 days home we got 3 before we had a 12 hour notice that we had to check ourselves back into what feels like prison.