Three years ago I wrote a post about "why we don't have nursing", which is similar to this one in some ways, but leaving Emma at school (even with a couple nurses in the classroom, provided by the school) is a whole different type of situation with all of her medical issues. The option had been brought up a couple times in the past month since Emma was supposed to start her Homebound program again in the middle of August, but we only had the teacher for one day before we needed the program coordinator to find "a better fit" for Emma's specific needs.
I know I haven't posted any updates in a long time, but Emma finally started school in March. After filling out several documents, submitting proof of residency to her zoned school, and having her pediatrician fax over more documents, I was able to enroll her in our county's Homebound program where a teacher comes to our house for one hour, three times a week. She had that teacher in March, April, and May. Then she had a different teacher for six weeks in the summer, Dawn, who blew my mind! She brought so many fun learning toys, books, writing materials, games, and she even used a lot of sign language!! Unfortunately, Dawn was only filling in for the summer and she was not able to continue being Emma's teacher for the regular school year. This morning I got an email from the Homebound coordinator saying they had found a new teacher for Emma!! Hopefully she is similar to Dawn. :)
I'm not sure all who have noticed, but Emma's toes on her left foot are closer together, always pushing that "ring toe" up. I think it's the cutest thing. :)
I walked across the house to her bedroom after hearing her music books singing over the baby monitor, which is how we know she is awake each morning. I stood in her doorway with a big smile, like I always do. "Good morning, my beautiful woman!"
A few months ago, Michael converted the crib into more of a "big girl bed" with a partial railing. As I knelt down next to her bed, Emma did the gesture: holding the trach and tubing under her neck, which tells us that she wants to "sprint" (breathing without being attached to the ventilator). She does this many times throughout the day, including shortly after she wakes up. Sometimes when I just disconnect the tubing to get the condensation water dumped back into the humidifier, she will sign "all done" a bunch of times, or lean forward and hold the tubing with her arm out, preventing me from plugging it back in to her trach: another way of communicating non-verbally that she wants to sprint.
On Monday, Emma sprinted for two and a half hours, which was her longest time all year!! She used to be able to sprint up to four to six hours at a time, but the time has shortened since her left lung closed up a couple years ago. We are not sure why that happened. But this morning, after I turned off the ventilator and suctioned her, she started crying about wanting to be plugged in again, which has also been common this year. She was on the floor at this point because I was about to change her diaper. As she cried, she rolled from her back to her right side and aggressively kicked the baby wipes container. "Crabbins, my goodness. What is the issue? I'm plugging you in right now!"
I picked her up and immediately saw that there was a real issue. I noticed that her skin was turning gray and her lips were purple. "What happened?" I asked her rhetorically. I stood up with her in my arms and turned up her oxygen to one liter. When I saw that her color was not coming back, but instead quickly getting worse, while still holding her, I switched the oxygen tubing on the side of her ventilator from to the air concentrator to the tank tubing and "blasted" the green oxygen regulator up to four liters (the highest it goes). Her face was pretty gray and her lips were dark purple at this point, but I was glad that her eyes were still open. I rubbed her back hard while looking at her. I assume she passed out for a second or two because suddenly she started to slip down my body, instead of having her hands on my shoulders. I pulled her up again and continued rubbing her back and finally (this was all probably within one minute?) the color returned to her face. Her cheeks and lips turned their usual bright pink.
I placed Emma on the floor in a sitting position in front of the little piano and all of her toys, and laid on my stomach in front of her, gently holding her legs. And then guess what she did..? The sprinting gesture!! That was also not surprising though, as she often will ask to sprint in the middle of a coughing fit. "No ma'am! You almost passed out! We might not do any sprinting today. We need to rest for a little bit and start your treatments." Her oxygen was still at four liters, so I turned it down slightly to three liters.. and noticed that the oxygen tank was empty!! I didn't notice if it was like that before I turned it on, or if running it at four liters for a few minutes had drained the last of it. (The needle on red reads "refill".)
During her treatments, I said to her (and God), "Thank goodness we got to month nine before this happened again!" The previous time, before Christmas 2022- a worse, much scarier time, where she did fully pass out, Michael noticed that the oxygen tubing had gotten bent/ kinked, so she possibly didn't even get any of the oxygen from the tank! (In that post from December, it says the regulator opened up to eight liters, but usually it only goes to four.)
Today, Michael told me, "I'm wondering if the valve wasn't open enough, so the oxygen didn't have enough space to flow through. I assume there is a ball valve inside the very top of the tank where you open and close it with the key." (He checked online later and found that it's a screw valve instead, and in the diagram, the "key" is called a "tank wrench".) Michael loosened the top and the tank fully filled with oxygen. And this is why we have guardian angels!
So as you can see, this is one big reason why we don't send her to school. Bad stuff can happen to Emma so quickly and unexpectedly. I always remember when my dad was teaching me how to drive, he told me to "expect the unexpected", such as a car slamming on their brakes in front of me, or someone suddenly swerving into my lane. So with Emma, while most days are "normal" and "easy", compared to mornings like these, we have to be able to save her life in seconds!! It's a big job for us, so how can we expect a total stranger (a nurse provided by the school for the special needs class) who says they are medically trained to do the same? Especially when Emma is non-verbal, including most of her cries, and the class nurse is paying attention to other students in that moment. It's all so stressful just to think about.
Even later in the day, in the middle of writing this post, over the loud music of her Veggie Tales songs playing, I was able to hear her gagging. (See picture below with tears on her face, that's from all the gagging.) It's just one of many "Emma sounds" that gets me running into her room. She was gagging on a bunch of saliva, a large bubble coming out of her mouth, which happens maybe once a month. It's gross to say, but I have to swipe my fingers in her mouth to pull the saliva glob out. If I don't do it fast enough, then she will swallow it and continue gagging and coughing until she is able to "vomit" it out later.
Maybe one day I will make a full list of reasons why Michael and I never leave her alone with anyone except each other. We are her primary care physicians and respiratory therapists. :)
