After 21 months of countless appointments and surgeries and every thing that we've traveled through on this journey I would think that I could better handle the guilt of accidentally causing the baby to get sick.
He's not supposed to be able to throw up. After all that he's went through-nine months of seizures, 2 surgeries, months and months behind developmentally-he's not supposed to be able to throw up.
A couple of weeks ago I took the girls in for their dentist appointment. Our dentist came out in to the waiting room to meet the baby and talk with us. While out there I asked him about the baby's teeth, or his tooth rather. He said that he would have to study up on the baby's condition but the biggest issue is keeping his teeth clean all the time.
Well, any time the baby gets something put in his mouth he gags. So, needless to say, I haven't done any kind of oral care with him because it's just devastating to see what he goes through from being gagged by things in his mouth. And besides, he still only has one tooth so it's not like I'm completely neglecting his teeth.
Today, Big Wade had a job one of his customer's house who happened to be a dentist too. So, he and Wade were talking about the baby and he also said how very important it is to keep his teeth (tooth) clean.
So, while bathing the baby tonight, I decided to see if I could get his little baby rag on my first finger and onto his tooth to at least wipe it off. He did his usual turning his head away and tightening of his lips to protect his mouth from anything coming into it. But mommy was more determined. I swooped in, wiped his tooth and was out in 3 seconds.
Three seconds was too long. He started gagging and coughing. Nose started running, slobbers going every where, and his trach needed suctioned. I leaned over to turn his suction machine on and looked back just in time to see him actually vomiting baby formula.
This isn't any thing too terribly new. October 30th of this year was the one year anniversary for his fundoplication (fundo) surgery. That was the surgery that Wade and I did everything we possibly could to prevent. A fundo is where the doctor wraps the stomach around the esophagus essentially stopping any kind of reflux-at all. Before the surgery the baby would always spit up, more than spit up-he didn't hold down any fluid. So, Wade and I thought for 9 months that acid reflux was what was causing the baby to stop breathing all the time.
We had the baby on three different medications, one of which I was self dosing meaning I was giving him what I thought was the proper dose of Prevacid, with the doctors consent of course. We had him on a feeding pump at night, and feeding him very, very slowly during the day by g-button, and there were even times that we had to put him on oxygen and even a ventilator because we thought his reflux was so bad. We did test after test that confirmed the presence of too much acid in his throat. We had him sleeping, and sitting and eating-24 hours a day- in an upright position all so we could prevent him having to go through at least on of the surgeries. As if the surgeries were the enemy. And not to mention all the countless hours we went without sleep for having to give him rescue breaths to keep him alive for sometimes hours at a time.
All of this because I couldn't hear my heart telling me that it wasn't the reflux that was the problem. All of this so he wouldn't have to have one more surgery.
When I looked back at my sweet little boy sitting all grown up in his big boy bath seat, unable to control his urge to stop gagging my heart cried. I remember being angry at God because the baby had to go through things like teething and such. I felt that he should be exempt from life's little bothersome attributes like that.
But this time it was my fault. I felt that I had ruined his fun bath time. Because of me he was having to gag and retch and try his hardest to clear his airway.
I wish I knew what he was thinking. That has to be one of the hardest things about taking care of him is that I don't know what he's thinking. I ask him different things all the time, give him choices on what he wants to wear and what he wants to play with. And I usually make the choice for him eventually, because my minds too busy to slow down and listen.
I took him to the neurologist the day before yesterday. It has been 6 months since our last appointment. During the visit she asked me what was he doing now-a-days. He's sitting up for up to 30 minutes at a time, he rolling over to his belly and almost the rest of the way over, he's 'talking' over his trach, he's tracking objects with his eyes, he's following commands, he goes all over the house in his gait trainer, he actually hits his toys, he laughs and interacts (for the most part), he's doing all kinds of stuff. It was so neat to be able to tell her all of the things that he is doing now. There was a time not too very long ago that he couldn't even hold his head up. She was very impressed with him and how much stronger he is all around. She did tell us to take him off one of his seizure meds. He was taking such a small amount that it was doing anything either way.
We are going to have another EEG done in December when we go back to Dallas for all of his other appointments. She said when he is 2 years free of seizures we can take him off the meds.
So, anyways, I guess I'm just rambling. Things have been great around here. The baby is doing incredible since his last surgery. When we go back to Dallas we will have another MRI, Sleep Study, swallow study, and everything else to follow-up from his last surgery.
Hope y'all have a great night!
Love,
Becky
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