Last Thursday night I came home from my first day of presentations feeling very excited and energized. Initially I had been nervous about sharing Max and Addie's story with all the students in my school but as I started, I got excited sharing how far they had come and how much our family had been through and survived. The students were so engaged and the feedback was great but most of all, I was filled with this sense that we were truly on the other side of all that now. Dialysis was part of our past and the pain and fear associated with those stories was finally numb enough that I felt I could share them with joy that we endured them rather pain at recalling them. I drove home with a smile and Al and I loaded up the kids and went to celebrate at Chuy's... lots of queso and smiles from everyone and it was a happy night.
Friday morning I woke up, changed Max's diaper while he was asleep and headed out for day 2 of presentations. My voice was hoarse and my energy draining but as I finished presentation 13, I was smiling a huge victory smile and laughing with my co workers about how we were going to get onto Ellen! I drove home and met my mom and Addie in the driveway who were coming back from a day together. I walked inside and just like that, my excitement evaporated when Al told me that Max had been sleeping all day and was turning a blueish color so he had set him up with the oxygen we have at home.
We have oxygen in our home because when Max was small he had problems with his airway shutting when he was mad and not re-opening without intervention. Until he was 18 months old, he slept with an oxygen monitor so that we had peace of mind to sleep. We used the oxygen maybe 5-10 times in that 10 months, usually for a matter of minutes to get his oxygen levels up after a breath holding incident. And in 18 months since Addie's transplant, we have not used the oxygen once. He has not been sleeping with an oxygen monitor. It was stored away in a closet with some random dialysis supplies and baby clothes, all a part of the past, things that linger past their need or use.
I include that information so that you understand that Max requiring oxygen was completely unheard of these days. Max being sleepy seemed unusual also but he has been known to sleep on strange schedules so it was more that he needed oxygen that alarmed me. Al and I talked about the best thing to do now and I was adamant he needed to go to the hospital. Al tried to see if we could Max to wake up to assess this sleepiness and although he did flutter his eyes open a couple of times and move to our touch, we could not get him to wake up. When we took the oxygen away, his saturation levels dropped incredibly low into the 40s within minutes. I was now sure this was a very bad situation so I started getting ready for the hospital. I had texted his kidney doctor and she responded and told me I needed to call an ambulance because it was too risky that he could get worse and end up requiring CPR or intubation which I would not be able to do. When she said that, it really started to sink in that this was in fact a very serious situation.
So for the first time in their very eventful lives, we called 911.
I suppose given how sick they have been and how much time we have spent in hospitals, it is actually pretty amazing that this was our first 911 call and first ambulance trip. But because it is something we have never had to do, it was extremely scary taking that step. The paramedics arrived and I am trying to answer their questions while distracting Addie who seems most concerned that they have come for her. My mom comes and gets Addie and we get Max loaded into the ambulance. I mentioned he would need to go downtown so probably better to go ahead and take him there. After a few minutes sitting in the driveway the paramedic supervisor arrives and assesses the situation and comes to tell me that we cannot go downtown because they do not think Max is stable enough to make it that far and that they want him at the nearest ER.
It has been since they were 3 weeks old that we were in a Woodlands hospital. We always go downtown. We knew he would end up needing to be there but the fact that they did not feel it safe to take him there then really frightened me. I ended up driving behind the ambulance. Emily, Al's sister, rode in the ambulance with him as she doesn't drive here and we needed someone to drive the car there. Al had a stomach virus so he stayed home. Driving behind an ambulance that has your son in it who you have just been told is not stable enough to take 45 minutes away is so terrifying, I cannot even describe it. The ambulance actually did not use it sirens until the last 5 minutes of the ride when suddenly they turned them on. I had no idea why but you can imagine the places my mind was going to those last five minutes...
We finally arrived and they wheeled Max out and they were bagging him or giving him breaths. It was a really scary sight. They got him in and set up on the oxygen and he was actually more awake and fussing and responding well to the oxygen and there were a few minutes when we thought maybe this was going to be okay and we had just overreacted. I had just started to calm down from the ambulance fear when they got the results back from his 'blood gas' or a quick spot check of his blood...
What the blood gas looks at is the about of oxygen in the blood, the amount of carbon dioxide in the blood and the pH or acidity of the blood. I wasn't overly familiar with blood gas values prior to Max's RSV drama since my kids issues were kidney related rather than lung or respiratory related. But after the month long RSV battle, I was well versed in making sense of blood gases. Which maybe was a good thing because when he told me that Max's pH was 7.11 and his CO2 was 102, I knew exactly what that meant. Then again, maybe it was a bad thing because I knew exactly what it meant.
At his worst with RSV, they put Max on a ventilator for a pH of 7.17 and a CO2 in the upper 70s. And I knew that he was dangerously sick. So when I heard that his blood gas was considerably worse than his very worst with RSV, I was absolutely staggered. And I understood that he was not just sleeping all day, he was actually drifting in a coma. And when the paramedics questioned whether we would make it downtown, they were very wise to do so because with that blood gas, he would not have survived very much longer.
And to think- what if we did not have oxygen at home? what if we decided to wait a few more hours and see how he was? what if our doctor had not told me to call an ambulance and I had been stuck in traffic? None of those thoughts are helpful because God did protect Max and we did get him there in time. But I wouldn't be human if I did not admit how many times I had thought them.
What the terrible blood gas was telling us is that Max was not exhaling enough. Well really he wasn't breathing enough period but since we had oxygen at home we had managed to blow enough oxygen at him to compensate for the oxygen at least. But while we managed to help him inhale more oxygen, he was still not able to exhale enough carbon dioxide. And so that waste product was just building up in his blood and turning his blood acidic. Which caused him to get very sleepy and head into an altered state of consciousness.
At this point, it was urgent that we get Max on a ventilator that can breathe in and out for him and get rid of the CO2 that was built up in his blood. So the ER intubated him or placed the breathing tube down his throat and got it all set up breathing for him. Once that was done, we had a moment to breathe and finally ask the question: HOW DID THIS HAPPEN???
At that point we had no idea but one leading hypothesis was that he may have aspirated or choked on some of his own vomit (a big risk for kids with CP) and that he now had pneumonia growing in his lungs. With him being immunosuppressed it could have made him incredibly sick very quickly. They got chest X rays and started IV antibiotics. But the doctor warned me that if it was aspiration pneumonia and he was already that sick, he may get worse throughout the night before the antibiotics kick in and could become septic and crash. Truly horrifying words.
I try to avoid superlatives like 'the worst ever' because there have been a lot of really terrible days in this journey. So I don't want to say it was the worst day ever but I will say it was the single most terrifying series of events. I have never before been that worried about losing one of my children. And that is saying a lot given I have watched Addie be intubated after turning blue in my arms when she was in heart failure and I have myself performed CPR on Max at 4am wearing lingerie. So... I've seen a lot of things and I thought for sure the scariest moments were past. But standing in that unfamiliar ER knowing what his blood gas told us and not knowing how the night would go has got to be the scariest night yet.
The night got better just as more time passed and he did not seem to be getting worse. They arranged to transfer him to our city hospital and my wonderful best friend Shannon came to the ER and drove me downtown so I didn't have to be alone. She stayed him me while we waited for them to get him settled in the PICU and into the early hours of morning as I waited and waited to see if he was better or worse. Finally I felt content that he was not becoming septic and I attempted to get some sleep. It was hard to believe it was still the same day as my presentations!!!
During the course of the next day it started to seem less and less likely that it was pneumonia as Max seemed stable and not like he was getting worse. They did tons of bloodwork but day by day everything was coming back negative. By Sunday evening, the doctors had decided he must have just had a random respiratory virus, essentially a cold, and it just hit him really hard. He seemed to be requiring less and less from the ventilator and seemed to be recovering. And I felt enormously grateful that he was doing so much better and at the same time, so incredibly confused as to how exactly this had happened... and how we were going to prevent it happening again.
... To Be Continued!
This has already been super long and I'm exhausted so I will finish the story of the rest of the week and where we are at now with understanding what happened and preventing it happening again in the next couple of days! As of right now, Max is being moved out of the PICU and into a normal hospital room so we are praying this is a permanent move and that he stays stable and keeps getting better and ready to come home!
Thank you to everyone for your prayers!!! It was so great that I could get on Facebook and ask for prayers for Max and know that at those moments he most needed them, he was being covered in prayers!! So blessed by all the support and love!