the CAMP aftermath

My apologies but this is still a recap of what happened when we returned home after CAMP. Some of it is copy and paste from my brief Facebook updates to try to give a better insight into my emotions during that time…

It’s Monday morning February 20^th and we are finally back home. It should be a relief yet I felt overwhelmed. Was the trip to Chicago really worth it? There were so many changes made and I couldn’t shake the feeling that we came home with a different child and I had no idea how to respond to that. My gut is telling me that something wasn’t right. Wyatt still had more episodes than what would be considered his norm but we were still contributing it to the stress of traveling and all the tests he had just gone through in the last week. And then Tuesday came and still nothing was calming him down when he was awake. I lost count of how many times I had to bag him since the weekend and I was quickly approaching my breaking point. This was not my son. He doesn’t normally act this way. Something is seriously wrong. When we went to the Pulmonologist appointment that day and tried to sort out all the different recommendations and assessments that were done in Chicago, we explained to them that something just wasn’t right. We told them that we thought Wyatt was getting sick in Chicago already and explained his odd behavior and the numerous episodes. After tears and weighing out our options, we made the tough decision to have him admitted to the PICU (Pediatric Intensive Care Unit) right away. We all agreed that it was safest for Wyatt to be sedated for a few days to prevent further episodes and to be able to narrow down what type of illness or infection we are dealing with. The rest of the day was kind of a blur. I remember bagging Wyatt in the ER while the resident was trying to talk to me to get his history before he was moved upstairs to the PICU. I also remember having to explain CCHS a few times to the staff and emphasizing that objective monitoring is the only way to know what his true saturation and CO2 level is. I had a hard time keeping it together. My husband was there with me and so was our two year old. Our other two kids were in school. Adrenalin was the only thing that kept me from hitting the floor and breaking down. In the middle of trying to get Wyatt set up in the PICU we also had to figure out who would be able to stay with the older kids when they got home from school since the hospital was an hour away from our house and how to keep our two year old occupied with us. Thankfully Grandma and Grandpa are always there when we need them. It was such a mixed feeling to leave Wyatt in the hospital that first night, especially just coming back from a voluntary hospital stay. He’s our son and we are supposed to take care of him and protect him. Leaving him there by himself was such a guilt trip. But at the same time it also felt like a big relief. I knew he wasn’t safe at home right now and the PICU was his best option. We were all so exhausted it was a relief to know that we could leave him where he’s continuously monitored and we in turn could try to catch our breath. I couldn’t stand the thought of bagging him even one more time.

The next few days I was on autopilot just rambling off CCHS facts and what should be done for monitoring and treatment. It was to the point that the doctor’s asked me to participate in rounds every morning so they could find out what’s baseline for Wyatt since CCHS means they can’t judge by typical physical signs and symptoms. To some degree it was liberating and comforting to finally find a hospital that was willing to listen to the parents and work together as a team. But on the other hand, I didn’t even realize how exhausted I was. Doing the doctor thing every day didn’t give me a chance to deal with the emotions of what was happening to my son. I had a hard time even being next to Wyatt in the hospital. Each day he was there it became harder for me to make the drive to the hospital. It was such a déjà vu from the time he was in the NICU. I felt useless being there because he was sedated and there was nothing I could do to make him feel better. Every morning I got myself a coffee and hung on to it to calm my nerves. I didn’t even want that coffee but it was the only consistent thing I could count on every day. Everything else was questionable and to painful to even think about. So instead I dove head first into the ongoing mess that the insurance switch had caused beginning of February and dealt with the process of switching DME companies, finding a new pharmacy, and getting the home nursing going again. As long as I kept busy I didn’t have to deal with useless emotions. Meanwhile, Wyatt was kept on sedation for several days with IV antibiotics and we were waiting to get the trach culture back. They were treating him for severe irritation in and around his trach site and determined that the TTS trach was the most likely cause for the irritation. Therefore the first order of business was to switch his trach back to 4.0 NEO flextend cuffless Bivona while we were awaiting the delivery of the custom flextend cuffed trach. This is when the anger started to set in. All along we were trying to tell CAMP that a TTS trach would not work for Wyatt but they refused to take our input seriously. Now here we are back in the hospital and every single doctor that has seen Wyatt here, including our local Pulmonologist and an ENT consult, agreed that Wyatt needs a flextend trach. Why was CAMP so adamant about using a TTS trach that obviously is not designed for infants with no neck? If that is the only method they always use to do their evaluations then maybe they should consider that their way may be ideal for their testing environment but it is not realistic for daily application and therefore does not provide a true analysis and assessment. Having a different trach now also meant that the ventilator settings had to be changed again. Wyatt being sick also changes his CO2 levels and his Oxygen needs. So basically we started back from scratch trying to figure out optimal ventilator settings and trying to figure out what the heck was wrong with our son.

Day 4 in the PICU, Feb 24th: It took a couple days of being on the antibiotics before Wyatt was starting to act more like himself again. He is still kept under some sedation but woke up enough without crying/blue spells to pull and chew on wires. His eyelids unfortunately had been swollen shut since starting the sedation and he was still on a higher pressure setting and needed increased O2. Today I finally felt like he has starting to turn the corner in the right direction. It was touch and go for the last few days to the point of me not knowing whether I was going to walk into the PICU one morning and hear that they had to do a code on him. The trach culture came back with pseudomonas so they switched the antibiotics to better treat it. They also found that he's anemic and they started him on an iron supplement. Progress is slow but we're finally getting somewhere. ENT was consulted and is concerned that Wyatt may need a small stoma reconstruction in the near future but only after his acute symptoms are taken care of and he is off the antibiotics. (When Wyatt first had his tracheotomy, a suture cut his skin and created a bigger than intended opening around his stoma.) I can’t tell you how relieved I was that we finally spoke with ENT. Pediatric surgery did the tracheotomy and ENT was never followed up with since. The problem with the suture was never addressed by Pediatric Surgery despite us asking about it in the past.

Day 5 in the PICU, Feb 25^th: I said it before, Wyatt is showing us all off. He can handle more than I thought humanly possible. No doubt some of these issues could have been prevented medically speaking but it seems we have a good team of doctors now who are willing to listen and learn. Today’s goal at the PICU is to wean him of the Medazolan drip and use only Ativan via G-tube as a mild sedative to try to cut down on the blue spells. Hopefully that will also help to cut down on the swelling in his eyelids since discontinuing the drip should allow him to start to be more active again – fingers crossed. I’m rounding with the doctors daily and it sounds like he’s back to his usual crabby stages around 530/600am and 530/600pm which for him is baseline. So they are happy to see that progress. He’s back down to pressure control of 18 and FiO2 of 30% which is pretty close to his normal at home ventilator settings that were just established at CAMP last week. The peep of 5 was never changed. So the goal for today is to get him back on his LTV 1150 home ventilator and try him on his regular settings and hopefully also get him back to his normal O2 needs.

Day 6 in the PICU, Feb 26^th: I requested that the PICU doctor speak with Dr. Weese-Mayer in Chicago to get better details on what assessments were done there, as well as get input on optimizing his ventilator settings now. Unfortunately, even though they spoke with her, I was told she didn’t really give them much advice on Wyatt’s current ventilator setting needs. My attempts of speaking with her directly were also not successful. I was only able to speak with one of her RTs who inform me that they cannot advice us on ventilator settings now that Wyatt was switched to a different trach. I was furious. I wanted to strangle her through the phone. Basically she just told me that the five days at CAMP were now useless because they used a TTS trach there and didn’t listen to us when we asked for a flextend trach, and now we were on our own. I told the PICU team that I was not comfortable having Wyatt discharged until we can come to a better understanding and agreement on what his current ventilator settings should be before discharge as well as after. I also made it very clear that I did not want him on a regular scheduled dose of sedation. A PRN order is fine for the days that he simply won’t come out of that cycle of back to back episodes but otherwise, we need him to be fully awake and functioning so he can make developmental progress as well. We are not quite on the same page yet with our Pulmonologist on what level of medication is necessary to minimize the episodes. So the plan for now is to wean the Ativan and Chloral Hydrate further but unfortunately it is still necessary on occasion to fight those damn back to back blue spells. A bronch (without sedation to try to provoke an episode) is supposed to be done on Tuesday to see if a higher PEEP might minimize the severity of his episodes. We are eager to get him out of the hospital and finally off all sedation again but are curious of the results of the bronch to finally find out if something else is causing them or if there is a way to minimize the severity. The PICU team here has been amazing and I’m grateful to have a good hospital to go to in cases like these but I haven’t seen a true wide eyed smile out of Wyatt since we went to CAMP two weeks ago. I want my son back.

Feb 27-29: The bronch unfortunately only revealed that Wyatt is simply very good at clamping off his airway when he gets mad. They increased the PEEP from 5 to 10 and it only made a very slight difference. Right after the bronch Wyatt proved to us that he can still desat just as low with deep cyanosis followed by him passing out and he still requires the same amount of time to recover. Therefore, the PEEP of 10 is simply a preventative measure so that his lungs don’t collapse during each episode and then get damaged when being forced back open during recovery. It was very disappointing to not get a clear cut answer, some miracle diagnosis and treatment that could make these episodes stop. When I saw him go through yet another episode right after the bronch it hit me how much I was hoping for some way to fix this dangerous issue. But there is no magic fix to his episodes. I guess what they said in Chicago is right, he is the worst case of breath holding episodes they have ever seen. Which brings back up the controversial question of whether to use some sort of a maintenance sedation medication, kind of like an anti anxiety drug. I honestly don’t know what to think about that. I don’t want him to have any more of these episodes but I also feel like sedating him every day is the equivalent of pulling the plug on the vent. He can’t live his whole life sedated just because we are scared of more episodes of which we don’t know the neurological outcome. How do make such a decision? Parenting kids without health issue is hard enough but damn it, no one can ever prepare you for having to make decisions like these. In the end we decided to go home on a PRN only order of 0.25mL of Ativan via G-tube. I can’t say that I’m completely on board with that decision but I also know we need to have something readily available that we can give him on his bad days. We were discharged with a fixed vent setting of pressure control of 14, peep of 10 and a rate of 20. Bringing Wyatt home again was déjà vu. It felt like the first day when we finally brought him home from the NICU. It was exiting and scary all at the same time.