I had been up all night with Taylor. She didn't have any other symptoms other than a higher heart rate and just couldn't go to sleep. Sometimes that happens to her and it is usually related to her gut, but she also has neurological glitches that can contribute. The nurse came on at 8am and I went to bed. At 10:10am the nurse woke me up saying he needed help with Taylor.
I jumped out of bed and went straight to her bedroom and saw her blue and her oxygen saturation monitor was reading 17%..... you and I could hold our breath for as long as we can and still not be able to get that percentage lower than 88% at the lowest. All at once it hits that if I don't do everything exactly right she will die. There is a good chance she will die regardless of what I do. All the experiences in the past come running through my mind. First thing to do is to try to pass the suction catheter into the trachea tube and see what you can suck out. The catheter wouldn't advance. With most patients, this is when you would change the trachea tube. With Taylor, if that is attempted, she will likely die while making an attempt to prep the new tube and the success is so low that it risks her even farther (she has a false track/fistual and a malformed trachea). So that is a last resort option.
My mind switches to trying to advance the catheter with first putting saline down her trachea tube. That sounds counter intuitive since it sounds like you are drowning her, but it is my best option. The trachea tube care class that the hospital had me take when Mackenzie had her tube placed just this year taught that evidence based practice says not to use saline as a flush to thin the secretions because it doesn't work. What that study fails to consider is that the goal is not always to thin the secretions, in this case it is to move them. I was desperately hoping that using 3ml of normal saline could possibly move the thickened secretions out of the trachea tube to allow me to pass the catheter down further in the hopes of clearing the blockage. The first few attempts of this does not do anything. The next thought came from when Dr. Fitton told me when they were about 8 years old that I could use the Ambu bag to "pop" their lungs open and remove a blockage. I grab the ambu bag and have the nurse attach it to oxygen at 8 liters. It isn't enough to try to remove the blockage, I need to give her enough oxygen so her brain and organs don't become damaged/fail. When I first tried the ambu bag it wouldn't easily let me give her a breath. There was too much resistance. I went back and forth between suctioning and using the saline bullets and using the ambu bag until I finally saw some color in her face (that wasn't blue). Let me tell you too that there is nothing in nursing school that teaches you how to revive your own child. It isn't just the technique of how to suction and how to bag. It takes an intuition that can't be taught. I have to know when to switch, I have to know when to stop and assess, I have to know when too much can be too much, I have to know how to not do damage, I have to know at what pace to squeeze the ambu bag with the resistance, how much of the saline to use at what interval, how often to suction before using the ambu bag. I chose to use the suction that was inline because that was attached to her ventilator and through that circuit I had 5 liters of oxygen. Using an open suction with a 14 fr could have been more effective than the 10 fr used with the ventilator since it is bigger, but it would leave her without oxygen supplementation for too long since her oxygen saturation wasn't greater than 70 yet. The downside to using the 10fr inline catheter was because it is smaller and would take longer to clear secretions but also because the ventilator would be working against my efforst by trying to push air into her while I'm trying to suction out of her. I chose to use the 10fr because oxygen was priority. I reconsidered changing the trachea tube after 10 minutes but as long as I could advance that catheter, the new tube would do more harm than good. The other lesson that came rushing back was when I had to resuscitate Mike and I deflated his trachea tube cuff because I knew that that would allow air to move around the trachea tube. I knew that that could possibly improve Taylor's chances of moving the secretions.
I worked with her for over 20 minutes. Luckily, I wasn't alone. I could give instructions to the nurse to hook things up and to get supplies and make the call to 911 without having to take my attention off of Taylor.
When the squad arrived, they knew to let me just stay on her and not intervene unless I ask. They've been there before. Finally she started to bag easy and she started getting her oxygen saturation levels in the 90s with the 5 liters. She was stable enough to transport now. Even still transport could dislodge another mucous plug so she still wasn't completely out of danger.
Upon arriving at the hospital she was stable and smiling at me. This also means that when she presented to the ED, she was no longer looked at as critical and they made the judgement to put her on the "other side". I had to argue how volatile she was and thankfully the squad medic backed me up. They put her on the critical side.
The ENT surgeon was called to see her since assessing her airway and the integrity of her trachea was important. The ENT Resident noticed that the air was out of her cuff and put 4ml in which of course brought her VTE (air measured in her lungs while breathing) up. I hadn't put the air back in because I was still thinking that the secretions would benefit from being able to be coughed around the trachea tube if the cuff was down.
Taylor was scheduled to go into the hospital the next day to be evaluated during a switch from the ventilator she had been on for 10 years that was no longer going to be serviced by the company, to the Trilogy vent that Mackenzie is on. They decided to go ahead and admit her since they were able to have the company bring the machine in early.
We get up to the floor and a resident had decided to start her on antibiotic because her chest xray showed pneumonia and she had a temperature. Sound appropriate, except I saw the film, there wasn't a consolidation. What the resident was reading was the radiologist impression that states the same thing every single time..... pneumonia vs. atelectasis. I also knew that for 20 minutes, her lower lobes were not moving (breathing) which would make the atelectasis more noticeable but yet explained by something other than a pneumonia. Also the fever they were using as a diagnosis was 100.4. Not nearly high enough to indicate for Taylor that she was ill. It was a stress response for her. I asked for some time to let her stabilize on her own and to give the attending a chance to assess her. Luckily that discussion went in our favor. The attending assessed her and agreed that Taylor did not have pneumonia. Knowing Taylor and having the guts to piss off a doctor saved Taylor from being on a heavy duty antibiotic and extending her stay longer than she would need.
Taylor made the switch to the Trilogy ventilator without any issues! That was a relief to be sure.
The next morning while doing rounds the team of pulmonary doctors came around and reported to the attending (new one for the new day) that Taylor had a hypoxic episode but that the ENT surgeon put air in her cuff and she improved........
What a misleading statement. I usually let their reports pass by without correcting them but this time I just couldn't... I heard myself say "Yes, thank God the ENT surgeon had a 5ml syringe of air available". How can they treat her if they don't fully appreciate all that she has just gone through?
I still have my baby, that should be all that matters, but sometimes I just want to scream.
