As I outlined here this PICU Pressure silliness will be a series of posts about my family’s time at Hasbro Children’s Hospital’s PICU during my son’s 109 day stay there. This series will not be a chronological history of our time there but instead a series of pieces about all manner of long hospital stays. Of course it will be specifically about Liam’s hospital stay but I believe that there are some universal truths in there about time in an Intensive Care Unit. Hopefully we’ll touch on some of those too. Really though its all just a game to get you to click on the banner above and give money to Hasbro Children’s Hospital.
Anyway, it’s probably best to start at the beginning and talk about what got us there. . .
Liam was born early. Real early. He was born at 1 lb. 11 oz. at a gestational age of 27 weeks and 6 days. Liam the Lion. A few weeks after he was born and after fighting off the most serious of his lifelong breathing problems Liam was diagnosed with a chromosomal micro-deletion called Miller-Dieker Syndrome. The major presenting symptom of Miller-Dieker is lissencephaly. In plain english – his brain is smooth. He will have lifelong developmental delays and low muscle tone which will always limit his movement. The lissencephaly also means that Liam will always have seizures. Let’s just say he’s got issues and leave it at that. Whatever, that’s just a bit of background for you, you might as well have it for this ride. When it all boils done to it his mom and I don’t give a shit. He’s our boy, and as long as he keeps smiling when he sees me after work the rest is all gravy. He is the most loving, and comforting force I have ever met in my life. At the same time, he is the strongest and most fierce fighter I have ever seen in this world. The kid’s amazing got it? It’s central to this story, evidenced by the fact that he seemed to make it through this journey better than his mom and I.
Anyway, now you’ve got the basics. We spent 153 days in the NICU of Women & Infants Hospital. There were ups, there were downs and we made it out of there riding high. Naively thinking that we had slayed the hospital dragon we rode our horse into the sunset of home for the first time. Sure we knew that we would be spending some occasional time in hospitals for the rest of his life but we were certain at that point that we would be home for a good long while. 14 days is not a while folks.
It all started with a cough. It always starts with a cough. About 2 weeks after coming home, Liam wasn’t sleeping well for a night or two. During those nights he was having episodes of cyanosis, (lips turning blue) but they were easily enough resolved with a little extra flow of oxygen through his nasal canular. At the time we were taken aback by the giant oxygen tanks stationed in our house, one to guard the living room and one keeping watch over Liam’s crib in our room. Little did we know what we would be in for in only a few months. His canular flow was normally set at a liter and a half. Not too bad considering what Liam had fought through initially, and before this PICU messiness we were hopeful that that would decrease quickly.
The cough started on a thursday. It was a bit too persistent. A little too often for us. His mood deteriorated throughout the afternoon and by bedtime he was a cranky mess. We had a terrible night of guessing what to do next as he cried and cried the night away. By early morning we were turning up his oxygen flow higher and higher. We knew then that if nothing else we were at least heading to the Dr.’s office the next day. Liam ended up falling asleep though, his breathing calmed down, and he seemed ok for most of that friday including his trip to see the pediatrician.
“He probably does have a cold or a virus or something but things seem ok for now. Go on home and let us now if anything changes.” and with that, the Doctor sent us home.
I want to pause now to make sure that one thing is absolutely clear. In no way am I insinuating that this doctor did anything wrong. At the time of examination all of Liam’s numbers were normal, Liam was behaving just fine and had just been given a full exam. I only mention the visit to show just how quickly a full on respiratory attack can happen. Liam was in a doctor’s exam room getting a full work-up on a friday afternoon. By Sunday morning at 3am he was being admitted into the Pediatric Intensive Care Unit and Karin and I were waiting to hear about the placement of his breathing tube.
It happens quick.
I will say that the one doctor ‘on call’ that hellish saturday night seemed more put-off than concerned when Karin called to tell him that we were putting him in the car to race to the ER. “Well it sounds like you’ve already made your mind up then. Are you sure that it’s not something that can wait until he can be seen in the office on monday?” Yeah, we were pretty sure. The blue face was what gave it away. Looking back on it now, we probably should have called 911 and had an ambulance take us in to the hospital but we made it in ok. With Liam screaming the entire ride.
We called ahead and the ER was waiting for us knowing that we were in full respiratory distress. They had a high-flo ventilator at the ready for us and although getting Liam to calm his breathing a little bit was easy enough, his CO2 numbers on his blood gas were off the charts. His lungs were not able to wash-off enough Carbon Dioxide to make room for Oxygen. Karin and I answered questions from the admitting nurse as if they were relieving us from our nursing shift. Giving them exact numbers for baseline heart rates, and blood pressures as well as med doses and concentrations without missing a beat. I heard one young respiratory therapist ask another “Why are they so calm about all of this?”
“The NICU Parents always are.” she said matter of factly. We’d been trained well.
It’s true that Karin and I were very calm and collected in that trauma room while up to a dozen medical professionals surrounded Liam on his bed. We were more than a little naive and very cocky and thought that all Liam needed was a little time on some hi-flo. He would wash off that CO2 and we would be home again in a few days. Had we known what was about to start, we would have been a mess.
Liam was in the NICU so long and had gotten so big in that time that there was talk of sending him to Hasbro just because the NICU blood pressure cuffs and pulse ox sensors wouldn’t fit him any more. One more delay by cold or pneumonia and we would have had a visit to Hasbro before ever going home. The idea scared the hell out of us. Hasbro didn’t know Liam like the NICU did. Hasbro couldn’t possibly care for him as well as the NICU had. We just didn’t want to go. But we hadn’t even been home yet at that point and didn’t even know what we were missing. Now here we were in Hasbro after all, but this time we didn’t have time to be scared.
Bright yellow and white ER bracelets were put onto Karin and I for identification while we were repeatedly asked Liam’s birthday and how to spell his last name. Karin gave admitting our insurance information and I gave the ER Doc a more detailed medical history of our time in the NICU until I was called over and given another bracelet. This time it was bright blue and we were told that it was for admittance into the ICU where they were prepping a bed for Liam. We still foolishly thought that this would be a short-term stay until we walked into The Unit alongside Liam’s bed and heard who we would later find out to be the chief resident and the attending physician debating how narrow an ET tube they would need. ET tube. We knew what that meant.
It was like getting punched in the gut and kicked in the balls at the same time watching them wheel in a ventilator and prepping liam for intubation again. Liam had already spent far too much time in the NICU intubated and going back to that was not something we were ready to do but what choice do you have when breathing is on the line? I wanted to yell and scream and tell the doctor that Liam was strong enough to beat this on his own! But I knew that we were doing the right thing and was going into shock pretty good by that time and the blur of everything was getting greater and greater.
We didn’t stay and watch them place the tube or put in his IV. Liam is a tremendously difficult stick and placing an IV that will stay in can be a very long and bloody process. Karin and I went to a strange new family waiting room and cried whole bunch. We told each other that everything was going to be ok and that Liam would make it through this just fine but for the first time that night I think doubt crept into both of our hearts. By the time we made it back to Liam’s new room in the Unit radiology was making their way in to check the placement of the ET tube with a chest film. Karin and I, familiar with the pose, helped position Liam for his x-ray and met our first PICU nurse who told us which drugs had been used to knock the boy out. Hard stuff folks, we’re talking heavy-duty narcotics. They had to give him more than the usual dose too because he fought them so hard. He was now in a medically induced coma to prevent him from fighting against the breathing tube. He would stay that way for the next 3 weeks.
Karin curled up on a recliner next to his bed and I went back to the waiting room with a pillow and a blanket that the nurse had given me. Somehow we both fell asleep for a few hours until it was time to wake up and call each of our own parents. I think it was the shock that let us sleep. When you spend as much time in hospitals as we have the stay can be like riding a bike. We knew how to play the bedside waiting game. We were freaking all-stars at that and it was time to show it.
So there you go. We were tired and sad and scared and in shock. Liam was strapped down in a big boy hospital bed and hooked up to a GE servo Ventilator (The Cadillac of big time ventilators). It is obviously on the short list for one of the worst nights of my life. But it’s the start to this story. It’s how we got here.
I doubt that the rest of the posts in this series will be this long. They probably won’t be as serious either, but every story has a beginning and this one is ours. For this story at least.