PICU Pressure is an occasional series of essays about Liam’s time in the pediatric intensive care unit at Hasbro Children’s Hospital. It was inspired as a way to draw attention to the event that is linked to the banner above so if you like what you read click the banner above and help us help the good folks at Hasbro. You can read the intro to the series here. and the first official post here.
When last we met Liam was strapped down to his bed and sedated for his first night in the PICU at Hasbro Children’s Hospital. I don’t want these posts to be a chronological play by play of our time in the PICU but rather each piece to focus on one specific topic that we were effected by during our time in Hasbro. I can’t do that though until I give you the run down of the whole shebang. 109 days is a long time for a hospital stay (especially when you just got finished with a 153 day stay in another hospital, but I digress) and not all of it is the same. Sure the first few weeks are filled with intense fear and stress which although remain present throughout, eventually your mind forces you to become bored by the stress, if that makes any sense. a few months into this craziness Karin and I were so calm and collected despite the intensity of each passing day that we became the family that doctors and nurses would come and hang out with. Liam’s room was the hangout room for residents and interns on their breaks. We would sometimes return to his room after a break or a meal to find a doctor sitting in the rocker holding Liam after their 24 hour shift on had just ended. Liam’s home pediatrician actually came and hung out with us in Liam’s room while his wife was having a procedure done in the adult hospital next door. We were the life of the PICU party and we didn’t know it at the time, but we were of course repressing some very, serious and dangerous emotions and feelings that would come close to crushing us under the weight of it all. what I’m saying is that its hard to sum up the emotions of a three-month stay. It was all of them. Every single one. In between the depression and sadness and absolute terror there were times when you might say we had “fun” which is a strange thing to say considering that we were only feet away from my son strapped to a bed and in a coma.
So let’s do this. Down and dirty. A “quick” run-through of the events of our time at Hasbro so that when I refer to these things in future posts we all know what’s going on mmmkay?
As I explained earlier Liam was brought to the hospital in the throes of a full on respiratory attack. We’ll never know exactly what caused the attack itself as it could have been anything. A cold, a virus, whatever it was it caused his lungs to weaken to the point that he needed to have a breathing tube placed and had to go back onto a ventilator. In order to keep him from ripping out the breathing tube he was doped up with enough heavy-duty narcotics to stop a lion. It was supposed to be only for a few days but the days turned to weeks and after about a month and two failed extubation attempts it was time for us to begin thinking about putting in a trach. While that decision was hanging in the air the Doctors tried one more time to remove the breathing tube and let Liam “fly” on his own. He was able to hold his sats up while on a hi-flow set-up but his wean off of that was slower than expected and so we were back to talking about putting in a trach.
It was an excruciating process. One that involved numerous discussions with doctors and nurses and a few families that had already been through it. We had an ear nose and throat specialist come in and we learned that Liam had what is called Tracheomalacia. Basically the cartilage that holds Liam’s airway open is floppy and weak. Even if Liam thrived off of the ventilator this time he would be back the next time something caused his airway to flop closed, and that something could be a cough or even a hiccup. Having a tracheostomy would secure the airway and give us piece of mind that his breathing would always be supported. Karin and I wanted to make this decision under calm circumstances, not during the intensity of a code blue. (He did code once during an extubation attempt when his saturation dropped all the way to 0 and because of his airway floppiness the Doc had a hard time putting the breathing tube back in. Since I had the sense that I was floating above my body watching the whole damn thing I can tell you it was exactly like you see on TV when the crowd rushes in surrounding the patient but I’ll tell that story another time.)
Looking back on it now I know that putting in the trach is the best thing we could have ever done for Liam it is one of the two or three major turning points in his life and development but at the time it was a difficult and heart wrenching thought process for his mother and I. The nurses of the PICU were tremendously helpful with this and answered as many questions as they could for us but it was one attending physician in particular who spent more time than we ever could have hoped for discussing all of our options and helping us to better understand what we were getting into. Our case manager and the child life specialist also helped by putting us in touch with some people who had been through this with their own children. It was the first but not the only time that the entire staff of the PICU had pulled together to assist us with something that we didn’t think we were ready for.
I’ll never forget watching Liam being wheeled back into his room after the procedure to put in the trach. Aside from a moment or two whenever we changed the tape on his nasal canular this was the first time that we were able to see his whole face without any tape on it or tubes in his nose or mouth. Just his face. His beautiful face. He looked like an angel.
Liam would need to be sedated again for a few weeks while the site healed. Then it would be a few months of learning how to clean, maintain, and troubleshoot the trach and the ventilator and additional equipment before we would be able to go home. We were starting to hit our groove with the hospital game and the routine was becoming just that. Routine. Every day started to feel like the last and we weren’t ready for any more surprises. Hospitals seem to know that though, so we would of course be in for another adventure. Liam loves to keep us on our toes you know.
Heavy narcotics can have heavy side effects not the least of which can be constipation. Liam has had a feeding tube since he was in the NICU and was receiving most of his normal nutrition through formula with the occasional stopping of feeds to let his bowels catch up. Maintenance fluids would be given through his central line and eventually he would move his bowels and formula would be given again. Another of the balancing acts that we have learned to endure. Every treatment for one symptom can cause another somewhere else. We were dealing with it just fine until the time his bowels just stopped moving.
When your constipated (or F.O.S. in PICU speak — you figure it out) it puts additional pressure on your diafram and prevents the lungs from fully expanding. A condition that really started to be a problem just when the Doctors were trying to adjust Liam’s ventilator settings for his home vent. With the pressure on his lungs because of his poop problems it was impossible to get an accurate picture of how much support from the ventilator he would need. Pulmonology couldn’t help with the vent until we got the GI problem resolved, the medical team said that it was a surgical problem, the surgeons said it was a medical problem stemming from the narcotics and the respiratory therapists were having a hell of a time just trying to keep him comfortable. Its their problem. No, its their problem.
Finally a surgeon who had known Liam from his earliest days in the NICU ( they met when Liam was having other GI issues. In a bit of a gross side note Liam didn’t poop at all for the first 43 days of his life. He had the surgeons and medical docs scratching their heads then too. We know our way around poop issues.) This Particular Surgeon thought that a bit of exploratory surgery may be what is needed. He had a couple of theories about what he may find in there and was confident that he could fix whatever it was that he could find. Yet again Karin and I found ourselves faced with the decision of putting Liam under anesthesia and under the knife again and although his airway was secure this time there are always risks with any surgical procedure. Especially one where the doctors don’t exactly know what they’re going to see when they get in there.
We opted for the surgery based on a conversation with the surgeon that I will probably write a whole post about. The procedure was a success! The best of the possible outcomes. Liam had 8 centimeters of his small bowel removed and the cuts were able to be sectioned together. Good news considering the alternatives. We were stuck in sedation mode again for a bit though while we waited for things to heal. The pain meds that he was given after the surgery were the same pain meds that could cause constipation so again we walked the tightrope between benefit and cost while we waited for poop to see if the surgery was a true success.
It took a few more days than everyone had hoped but that’s Liam’s style. Only on his terms. Anyway, once that was out-of-the-way it really was time to start preparing for home. For the next few weeks the pressure was off of Liam to get better and onto Karin and I to learn what we would be required to take home Liam with a trach and vent. Daily classes with a respiratory therapist from our medical equipment company to learn everything there is to know about ventilators and all of the other equipment. Classes with nurses on how to clean and maintain the trach. We had to take a special CPR class for people with trach stomas (mouth to mouth is very different when you’ve got a whole in your neck) as well as being quizzed repeatedly by nursing staff on every type of emergency situation that they could think of. It was intense but necessary and it was another example of the entire staff of the PICU coming together to help our family.
The very last thing needed was our overnights. Karin and I each had to spend 24 hours taking care of Liam under the supervision of, but without the aide of, the nursing staff. A practice that more than a few full term babies may benefit from. During mine I wrote the very first blog post for this blog. We finished up with our training and instead of being scared of the hospital were getting scared of home. Liam was almost 10 months old by now and we had only spent 14 days at home being parents. I often joke to my friends with children who were born full term that I don’t know how they do it. How do you just pop out a baby and then take it home three days later and know what to do? How do you learn how to feed him or change him or how to troubleshoot PIPs that are too high or a low minute volume? See that, I slipped a little ventilator humor in there. Anyway the point is we made it. We all survived our time and came out much better for it. The good people at Hasbro Children’s saved Liam’s life many, many times in those 109 days and Karin and I will forever be grateful for that. They also gave Karin and I the tools to make sure that we don’t spend more time back in the hospital than we have to. We have had to go back a couple of times since he came home last October but nothing long-term and with each short visit the staff have commented on how surprised they are that we aren’t back there more often. It’s a tribute to Liam’s strength and the training we received from them that we aren’t. Trached kids spend a lot of time in hospitals through no fault of their own or (most of) their parents. We’re just lucky I guess.
Wow, if you are still reading this I doff my cap and applaud you. Thank you for hanging in there. The writing is dry and boring but I got it all out there. Like I said, it was a long time and so difficult to summarize but with this general outline of events I will be better able to explain specifics in future posts this month. Most of these future posts about our stay at the PICU will be about how wonderful they are there. How much they deserve anything you may be able to donate by clicking the banner at the top of this post. Not much of our stay was pleasant though, and we didn’t like every person we were forced to work with but they all worked hard to make sure that my son and my family were comfortable during a difficult situation.
Thank you for reading and believe me, they won’t all be this long.