For lack of a better title for this post, I wrote “Setbacks…” as in the plural form.
We brought Isaac to the emergency room on April 2, Sunday, the day of his party and just a day before his birthday. We got admitted and had to stay until Thursday of that week. It was the most gruelling 5 days of our lives! I couldn’t leave Isaac’s side and he would cry every time he saw someone come into the room. I was glued to his bedside and honestly probably got to take only 2 showers the whole time! TMI but true…so sad.
Turns out the three weeks that we were trying to treat his “allergies” at home, we should have brought him to the clinic because it wasn’t a bad case of allergies anymore. It probably started as one but went on to become an infection. As most infections for trache babies go, we got Tobramycin and two other IV antibiotics that just about wiped out his stomach flora. We ended up with loose stools at home and an excoriated butt! Ouch!
After a few days we went back to the doctor and he was impressed with how much progress Isaac had made in the few days we were home. He was so impressed that he wanted us to start weaning him off the ventilator right away. I was impressed with my son’s strides myself so I went along with it. He was okay with getting off the vent for a few hours a day and then when he was off for most of the day they decided to wean him off the vent at night! And that’s when everything started falling apart. He did not respond well to a heated trache collar during our first attempt months ago and I did not have much confidence it would be better this time around. But I have to try him on it because this isn’t about how comfortable I am with it. It was about how beneficial the heated trache collar is for him. I decided to try it during nap time and the nurse and I agreed he liked it judging by his O2 saturation and heart rate. Putting him on it at night was a different story. He would wake up at the unholy hour of 3 or 4am either crying, desatting, or pulling his legs up because of gas. Sometimes, all of the above at the same time! We had to ambubag him a couple of times. After almost a week of this his pulmonologist asked us to visit the clinic for a more comprehensive examination. We did a bedside bronch where he viewed his trachea with a camera down his trache. We saw that whenever he would get upset, his trache would collapse by about 30%. It wasn’t bad but it explained why he would desaturate every time he would get mad. The problem is, keeping him on the vent is deleterious with this condition but he also needs the support of the vent to help him breathe when he is upset. It’s a catch 22. So now we have been given the go ahead to put him on the vent when he needs it at night.
My nurses who have had a lot of experience with children on the ventilator and trached have assured me that weaning Isaac off the vent is not going to be achieved overnight. That it will take time and patience. Well, this momma is running out of it! I told one of my nurses that I am starting to get annoyed with all these beeping machines and noises througout the night and she mentioned that we are already nearing the end of our journey. I honestly do not feel like it. But I know that this is just a temporary feeling. All I need to do right now is focus on Isaac and continue to pray without ceasing.
As a mom of a trache child, we have different coping mechanisms at our disposal: there’s wine, shopping, working out, eating, reading, coloring, fighting with our spouses, venting to others and cleaning like a crazy person. I just have to choose my poison. I happen to love shopping but my bank balance forbids it right now. So for me that leaves out eating and working out. Two things that do not go together, I know! But it is what it is! We may fail today but we live another day and we try again…
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