At 8:45 yesterday morning I got a text from Michael's mom saying, "Touch base when you can. So sorry to hear about Emma's incident." I was instantly confused about what she meant and looked at the previous text I had sent her the night before, which was just talking about how great it was snuggling and tickling Emma on the couch Friday night. I replied, "What?" And she asked if I was with Michael. She assumed I was at home with him. I told her I was at work and asked what happened, but then immediately called Michael instead. All he said to me was, "We're going to the hospital.. I'll call you back." Of course that put me in a panic and I started crying for a second since that gave me no information on what happened or if she was okay (or alive?!).
My co-worker, Odese, quickly helped me get all my stuff to the car and I drove to Arnold Palmer Hospital. I got another text from Michael's mom saying all she knew was that Emma's trach came out. I called Michael again, after a couple calls going straight to voicemail, and basically yelled at him to tell me what was happening with my baby!! He told me that she was awake and doing okay, sucking on the blue pilot balloon. We always call it the cuff, but according to Google Images the cuff is actually the part of the trach tube that inflates inside of her airway. Knowing she was awake now and doing okay made me feel better, but still in a slight panic mode, my body in a mix between feeling like I should cry and wondering if I was going to be sick. I didn't do either, but when I went to call my parents' landline phone (both cell phones were off) I accidentally started dialing my own number first. I told them the little bit of information that I had then told my mom I needed to hang up since I couldn't even remember how to get to the hospital from work! Before hanging up, my mom mentioned how not remembering how to get to the hospital is a good thing since it's been so long since I have had to go there, after my probably 85 days of driving there after work between July 2017 and April 2018. (Other estimates include 95 of visiting on days I wasn't working, 50 days of FMLA leave between June and September, 73 of her being in the hospital in Ann Arbor, Michigan, and maybe 20 days that I didn't get to see her at all to equal her 323 total days in the NICU.)
When I got to the hospital and ran into the ER entrance, I was surprised to learn that the ambulance hadn't arrived yet. But a few minutes later the girl at the front took me back to where everyone was. The paramedics and nurses let me through to see Emma, as Michael was answering everyone's questions and I listened intently to get all the information I had been unaware of. This was around 9:30am.
Now I'm going to start the story back from Michael's version at home, in my own words, and everything that he told me during the day and later on in the evening when I asked for even further details last night.
**Disclaimer, 2/26/20 ~ Michael read this post already and said that it's not exactly accurate or the way I worded it doesn't sound as pressing and scary as how it actually happened to him. However, in the past 10 days since this event, between work, errands, and appointments, plus nightly treatments and trach care, we have had zero time to sit down together so I could re-word it or add his actual perspective to this post. So I apologize for it not all being exactly right as I wasn't there. **
He told me that he got up around 8am because Emma's foot probe alarm was going off due to a bad connection (which happens a lot so she only wears the probe at night when we aren't watching her since we're in bed sleeping), but she was fine then. Twenty minutes later the probe alarm went off again, but this time her stats were in the 60's for her blood oxygen level and 50's for heart rate, which is lower than normal. When she's sleeping her stats are usually in the 90's for blood oxygen (the alarm goes off once it hits 89 or lower) and 60-70's for her heart rate. Michael went to adjust her foot probe so it would read correctly, and saw that her toes looked darker than normal. He looked at her other foot and saw the same thing. She was laying on her stomach so he flipped her body over, felt that she was limp (normally she will squirm or push our hand away if we bother her while she is trying to sleep), moved all the hair out of her face and saw that her face was purple too. Somehow her trach had come out and she can't really breathe on her own without it. He told me last night that he honestly thought she was gone at that point.
**This makes us pretty upset that the ventilator alarm wasn't also going off, but it's possible that the outer cannula (not sure why it's called the outer cannula when it's the part that goes inside her airway) was tucked under her neck area so the vent didn't detect that each breath/ puff it gave wasn't actually going into her body. I also noticed that when we fully take her trach out to put in a clean one, which we do every Monday night, the ventilator didn't alarm then either! Well, it definitely should! **
Of course Michael sprung into action. He pulled her trach as far as he could away from her (the ties/ velcro around her neck were a little lose) in order to stick the outer cannula back into her stoma and he cranked up the oxygen. He started doing light chest compressions with four fingers, but when he saw that her body was bouncing in the crib, he disconnected her feeding tube so he could move her to the floor. He continued chest compressions for about a minute and then her stats were looking good again (blood oxygen level back in the 90's, heart rate up to 150) and he could feel her heart beating again. He's not sure if it actually stopped beating, but it was slow enough to need to wake her heart up again. He sat her up, hoping that would help Emma wake up and open her eyes, but she still seemed out of it, going back and forth between crying and sleeping. He called his dad who is an ER doctor and asked if she needed an ambulance. His dad told him to call 911, and since I work in the building where 911 calls are taken (sometimes answering them myself), he assumed I would be able to see the call and know what was happening. However, that did not happen. Without actually checking our home address or taking the 911 call myself, I would not have a way to know he called 911. So I'm glad his mom texted, even though she thought I was at home with them when it happened.
He said the paramedics arrived quickly - partly because we only live one mile from the fire station. He grabbed a lot of her medical stuff, including her ventilator and battery pack, and the suction machine, (but not all of it, since there is a lot to remember to bring, especially in a panic like this). Emma was back to being almost fully awake at this point. They did her breathing treatments in the ambulance, but didn't have all the connector pieces required for giving it through the ventilator tubes. They have the pieces used for oral inhalation in the truck, but luckily found some type of T-adapter that worked and Michael had already given her QVAR puffs as instructed while on the phone with the fire department operator. They needed medical tape to wrap their monitor around Emma's foot, but while one of the paramedics was looking for it, Michael pulled out a roll that he had. The other paramedic said, "Oh, dad's on the ball!"
All of this has been putting my mind in a race, wondering what I would have done differently (or exactly the same?) if I had been the one at home this morning if Michael was the one at work. He thinks I would have done the same since he was impressed with how quickly I "put everything back together" the morning that her G-tube got ripped out. But that's a lot different. She wasn't passed out. She wasn't blue and unconscious when that happened back in October, she was just crying a lot.
Now back to us all being at the hospital together:
A few different people asked the same questions, but the main thing was that we didn't know how her trach came out or how long she was unconscious. We don't think she would have pulled it out herself. Michael felt like it was his fault because he is the one to put her ties on every night during trach care. He said if he had made them tighter, this wouldn't have happened, but I kept assuring him that it wasn't his fault. It's possible that Emma was awake and tried sitting up in her crib, which she does a lot now (she learned to sit up on her own on January 1st!!), and that the tubing and/or the suction catheter was under her leg when she sat up, and then she turned her head or coughed really hard, and that pulled/pushed the trach out. But Michael said she didn't hear her make any noise in those 20 minutes between the times the probe alarm went off and he checked on her. She has two cries- a silent one for less upsetting things (like getting her fingernails cut) and a verbal one when something really bad happens, which we both would have expected for this. But again, if it happened while she was sleeping then we wouldn't realize it? We'll never know, we just have to try to prevent it from happening again.
I got some diapers and wipes and cream from the nurse and changed her. She cried off and on in the hospital, which was probably a mix of being tired, all the new wires stuck to her body, and PTSD from all of her previous time in the hospital. She fell asleep around 10:30am. A girl came in so I could sign the insurance forms and then Michael and I made a list of all the things I needed to get from the house, including the bucket part of the car seat, so we could take her home later. They said they wanted to monitor her for a little bit before letting us leave.
When she is sprinting, she still always has her trach in. Only the ventilator is off and disconnected from her. She still needs the trach to help her breathe because she is used to breathing through her stoma/ neck hole area. She doesn't know how to breathe through her nose and mouth since she has never had to do it before. So when the trach comes out, especially if her neck is down covering the stoma or she just inhales really quickly in a panic, the stoma hole tightens and closes, and she has no way to get air into her lungs.**
A follow up question we get sometimes: How long will she have the trach. We don't know. It could be 3 more years. It could be the rest of her life. That answer is up to her body as we see how she grows. We are definitely making some new rules for ourselves though, and we will all be tired for a while because now we are paranoid and get up at night for every single alarm. A lot of the ventilator alarms are for "high peep" or "low peep", things that beep because she coughed or laughed when the vent was trying to give her a breath. Or her foot probe goes off because she's pulling on the wire or playfully kicking her foot. But then I kept thinking, "What if she's not okay? I should check just in case."
Michael has been brainstorming a new piece of equipment for Emma. A fashionable vest made out of wetsuit material that she will wear all the time with the tubing clipped or attached to the vest somehow, that way if the tubing gets pulled, it's pulling from her vest and not her neck.
