Close Call

We had a close call Tuesday night. Wyatt is fine now but I still can’t get that image out of my mind…

Wyatt had a good day on Tuesday. He was tolerating the bouncy seat and tummy time better than usual for a good 30 minutes each. We even practiced bottle feeding (a.k.a. chewing) for a good 15 minutes. Overall, his new schedule seemed to be working better for him and us, and everybody in this house had started to get into a good routine… But then came the sober reminder that things can go horribly wrong in an instant. My husband was still at work and I was eating dinner with my other 3 boys in the kitchen while the nurse was rocking Wyatt. I heard the pulse ox alarm go off which usually means he’s either having a breath holding episode or it’s just not getting a good read. When I walked in the room I heard a very distinct and familiar whistle-like noise. Wyatt’s trach had come out and the nurse failed to recognize that noise nor did she check. She just kept starring at the pulse ox waiting for his sats and heart rate to come back up. Turned out, she had attempted to do Wyatt’s trach tie change by herself. That’s why when he had his episode and the trach tie was loose, the trach ended up coming out during his episode probably when he was arching his back. I yelled at her that his trach was out and grabbed the supplies I needed to put it back in. In the nurse’s panic she ended up trying to wiggle the trach back in without supplies unsuccessfully and her hand just got in my way where I couldn’t see the trach site.  I told her to just hold him. Despite feeling a little resistance, I manage to get the trach back in. It doesn’t take long for the site to close off and I almost had to grab the emergency smaller size trach. But thankfully I managed. His sats came right back up to 100 and his heart rate was in the 150s but Wyatt was unresponsive. He had a blank stare, his tongue was sticking out a little with drool around his lips and he was completely limb. Normally after a breath holding episode he’ll have that blank stare while he’s returning to a pink color and his body will be stiff for about 15 seconds. But it was different this time. He was pink already, his number looked great but I couldn’t get him to respond. I gave him additional manual breaths through the vent because I did not want to let him ride on only the 30bpm back up rate his vent is set at And then I called 911 because he didn’t come out of this stare, he was limb. The nurse just kept saying “Why didn’t the vent alarm go off?”. She’s lucky I was more focused on Wyatt than her comments or I would have yelled at her so loud, the entire block would have heard us. I’m not a nurse trained on trachs and vents, and I’ve only been dealing with this for 3 ½ months but I recognize that distinct whistle-like noise. No matter how many times you’ve seen Wyatt’s breath holding episodes and are used to them, you never ever assume he’s just going to bounce right back. You always trouble shoot all the equipment, glaze at the vent circuit to make sure it’s all connected and look at his trach placement. And if he doesn’t come back up like he usually does, you always have to be ready to switch out his trach in case there might be a plug in it preventing him from receiving the breaths. You cannot ever depend on alarms. The pulse ox doesn’t even alarm until he’s already blue because there is a big delay. The vent won’t alarm when the trach comes out because the vent only has a disconnect alarm. Nothing was disconnected though so as far as the vent is concerned, it was still pushing air through. The air just wasn’t going into Wyatt. After the longest 5 minutes of my life, Wyatt finally come back around and started silently crying. By the time EMS got to our house, he was crying and responsive but I wasn’t taking chances. I directed the nurse to just keep holding Wyatt and trying to comfort him while I packed up all his gear. EMS wanted to ambu bag him on the way to the hospital and I had to set them straight on how this process was going to work. Ironically, the same EMS guys that came the day Wyatt was born responded to this call. Only this time they actually had respect for me and let me take the lead. You could tell they knew very little about the home vent. I had to give them the short version of Wyatt’s diagnosis and they got the point that the 911 call 3 ½ months ago after Wyatt’s birth was due to his diagnosis and not as they thought back then because Wyatt was born at home with a midwife. Even on the ride to the ER I was directing them on what to do and I what I needed. I was on the stretcher holding Wyatt in my arms to try to calm him down and the EMS guys made sure to place the vent between my legs so I could see it and work it if needed. Once at the ER Wyatt’s numbers were back in the normal range and I had to explain to the ER doctor to not be too concerned with Wyatt pupils being only minimally responsive as it comes with CCHS.  We were then transferred to Arnold Palmer Children’s Hospital for overnight observation. I must say, everyone at Arnold Palmer was amazing. As the leading children’s hospital in the region, they clearly had some experience with CCHS and were treating Wyatt appropriately (unlike the doctors at Winnie Palmer NICU across the street). It was close to 10pm when we got to APH and by then Wyatt was all smiles again and flirting with the nurses. Since we don’t have our CO2Monitor at home yet, I took advantage of our unplanned hospital stay and requested to put an in-line etCO2 on Wyatt’s vent circuit. He was reading in the low 20s which the RT was a little concerned with but I told them that before the pressure control increase on his vent, he used to be in the 70s. So I was ok with low 20s even though I guess it is considered to be the lower end of a good CO2 range. Weirdly enough, his CO2 was reading higher when he woke up in the morning, it was sitting around mid 30s. The RT said, it could have been reading a little low while he was sleeping because he has a significant air leak through his nose when he’s sleeping so it may not have been a true reading. I don’t know if that’s right or not. I have to trust the RT’s interpretation for now since I don’t know that much about CO2 readings yet. I’ll have to look into it more. By 10am Wednesday morning the attending doctor signed off on the discharge papers and we were back home by 12pm. Having only ridden in the ambulance with Wyatt so far everywhere we went, it took us a little while to get situated in the double stroller and then getting into our truck. But it was a nice first trial run - I’m trying to look at the positives here out of this whole mess. Of course, I had a stern talk with the case manager of our home nursing agency and made it clear to her that she’d better double check that all nurses coming to our house are adequately trained and that they are never to attempt a trach or trach tie change by themselves and that they are never to assume that he’ll just recover from his breath holding episodes. I expect them to always check his trach site and the vent set up during each episode and periodically throughout the day. Quite frankly, after Tuesday night, I was ready to say good-bye to home nursing altogether. I know it won’t be the last time for his trach to come out and it could have happened to anyone but for any nurse to play superhero and attempt risky things like trach or trach tie changes by themselves, that’s just unacceptable. I don’t care how much experience you have and how often you’ve done it one handed standing on your head. Wyatt is a strong kid and he’s managed to wiggle out of his trach previously even with the trach ties being thight. I don’t need superheros. I need nurses with common sense and the mind set to act when emergencies happen… Tuesday night was a close call. I know I can’t dwell on what could have happened if I didn’t step in the room but I can’t get that image out of my mind of Wyatt’s limb body with the blank stare. His sats and heart rate came right back to normal but he just wasn’t responding. There was nothing I could do but wait and hope and call 911. That helplessness of watching your own child go through that and there is absolutely nothing you can do but hope, it is an indescribably horrible feeling… But he’s ok now…