Day 789 - Scariest Day Yet! 😭 & The Best News 😁 (Rollercoaster of Emotions 🎢)
Monday, February 27th, 2023
It started out that any other morning. Mom was doing his morning care getting him ready for PT at the hospital. Then it turned into a morning Mom will never forget.
Below is the post mom shared with the Trach Mom community to help others be more aware...
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I almost accidentally killed my son this morning.
I was hesitant about posting this for several reasons but I know that posts like these have helped me become more aware of how a situation can happen and overall more on alert.
This morning I had put my son on the ventilator quickly to do his nebulizer treatments because that is the only way that we are able to do them. He is off the ventilator otherwise and is very stable. When we were finished I took him off of the ventilator and put on his red cap. He was still fully cuffed! I completely skipped the step to deflate his cuff (and we have been doing this for a while). I proceeded to put away the ventilator circuit, still standing right there. He was tossing and turning like one of his typical 2-year-old tantrums. He grabbed the crib railing protector and violently ripped it off of the medical crib, which grabbed my attention. I said, "James, what's wrong?" and then saw that he was blue with white lips. He was fighting for his life. I immediately took the cap off and realized what I did! He stopped moving and his body laid there completely still. It was taking too long for him to come back, so I quickly turned the ventilator back on and connected him.
After I realized he was okay I just held him and started hysterically crying. My husband was upstairs, heard me, and was running downstairs asking me what's wrong. I couldn't even breathe to talk so all he saw was me holding our son's body and crying over him saying, "I'm so sorry, I'm so sorry". I managed to get out that he was fine and told him I forgot to deflate. I don't think I will ever get the image out of my head of my son being blue struggling to ask for help.
Even though I was still standing right there and the whole thing was probably was less than 30 seconds, it was still terrifying. This was much different than when he was unstable and having episodes in the hospital; this was completely my fault and didn't have to happen. What a roller coaster of emotions today!
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Shortly after that was posted 190 trach moms showed their support with 28 people sharing stories of something similar. Incidences like today really resets your perspective on what's important. ❤️ Mom was glad to share even if it will only help one mama think differently tomorrow. Being on alert 100% of the time is nearly impossible, but man we sure are the best at trying!
We still went to PT and Dad went with us because emotions were high. While we were at the hospital, Mom asked Dad if he could use his magic with this lady who manages outpatient therapies. We were trying to "get back into" speech therapy and unfortunately sometimes it takes a man vs a woman for someone to listen. Dad informed this lady that we had been in therapy but then our therapist ended up going to inpatient and we got covid. Eventually no one called us. Somehow we ended up back on this huge waiting list. It's nuts, especially since James had been a patient for 8½ months. When we got home, Mom cried the rest of the day. She gave James the day off. We were going to take it easy.
J/k That's not a thing Mom can ever do... Mom ended up being on back to back phone calls with doctors for a few hours. One phone call in particular was from his ENT. This wasn't our ENT doctor but the ENT doctor that James had while we were in the NICU/PICU. She's pretty intense with a very straightforward personality. She said, "I was just calling to follow up regarding his airway evaluation next week. Pulmonology said they talked to you about how we are going to also to attempt to decannulate him as well". Mom said, "No, they didn't mention that specifically". She then asked about what he is currently doing. Mom let her know that he is currently capped during the day and in the evenings he is on the HME (only as of Thursday night). The doctor told Mom that James needs to be kept 24/7, so she should start doing that now. She asked if we were okay with moving forward with the decannulation and we said absolutely!
The evening we kept James capped as he drifted off to sleep. Unfortunately he was having bad lung retractions as soon as he went to sleep. He is fine during the day being capped but when sleeping the lung retractions are intense. Dad came downstairs so he could evaluate with Mom and they took videos comparing the two. One video of his lungs while capped and then another video of his lungs on the HME instead. There was a huge difference. The problem is is James still has a trach in his airway and it is a 3.5 which is rather large. The trach is still an obstruction. The brain also functions differently when sleeping. So we don't know if over the next week James will be able to tolerate sleeping capped. Sleeping while capped is not a common practice in the trach community! Very rare. We wonder if this will be at hindrance to him getting to decannulated, or even just getting his airway evaluated. We will see!
Today marks the 10-year anniversary of Pop pop's passing. Although this morning was super scary we wonder if he had intervened in getting mom's attention. She could have easily walked away and after only 60 seconds James would have been unable to flail his arms laying there still and unnoticed. It is super terrifying when you think about it. Hold your babies close today! ❤️
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