Road to Recovery
October 24th, 2016
Over our two trips to Toronto we were at about one month spent away from home. The transplant doctors had advised us that recovery could take anywhere from 3 to 12 months, but patients averaged approximately 3 months. We had packed and were ready for a three month stay, but we always had that nagging voice in the back of our minds saying: “Our daughter was lucky enough to get a disease which only affects 1 in 15,000 babies, so why would Isla’s recovery be any luckier?” I had realized this was a silly notion when I clued in that the average recovery times the doctors were providing were all based on babies with rare liver diseases. The statistics we had received since we landed in Toronto were all based on children in the same boat as our little girl. It is a weird feeling when you are surrounded by sick children; many with rare diseases. It is weird to no longer feel like what you are going through is so extraordinary when you are blended within a similar crowd. One thing is for certain at Sick Kids Hospital and Ronald McDonald House (RMH): One family’s troubles are no greater than the next. We needed to take every bit of good luck and cherish it, because you never know when that pleasant man you were sitting beside at the dinner table, would startle you the next morning when he is leaving the elevator in an inconsolable emotional fit (unfortunately this happened one morning, but I am unsure why the man was upset. Hopefully I was just reading into it, but in a place like RMH it is sadly fair to assume the worst). Let’s just say Isla got a few more kisses on the forehead that night.
So where were we? Both of my lady’s surgeries were complete and they had just entered the first part of their recoveries. It was day two and Isla was still heavily sedated; therefore, unconscious. Our day (the nannies and I) consisted of a moderately sleepless night, followed by a call into the pediatric ICU to notify of our arrival (at this time I had the number built into my phone so I had started to call in while on our way to the hospital), a bombardment of questions for the ICU nurse about Isla’s progress (they were clearly used to this and very accommodating), a quick gaze and forehead rubbing of my pride and joy, thanking the nurse, grabbing a bite to eat, and then heading over to see wifey.
Little Lady Visits
During my visits to see Isla I came to a certain realization. I never thought I would have to navigate around a butt load of cords and medical apparatuses in order to hold the hand of my first born child. I was probably being a little ridiculous, but I was always cognizant of where my body parts were in fear that I would yank a line out causing a barrage of alarms to go off and I would be pushed out of the way so that a doctor could jump on the bed and perform resuscitation (man, I think I watch too much TV dramas). The struggle was real though. Isla had infant restraints to prevent her from pulling at the cords, a urinary catheter, a ventilator to assist with her breathing (which had one tube entering her nostril which exited into two large tubes, a suction bag exiting from the same tube as the ventilator, another suction/tube draining goopy discharge from her vacuum dressing (the part of her abdomen still not closed after surgery), a SAT probe (measures her oxygen level in her blood), several leads to measure her heart rate/blood pressure, a nasal gastric tube entering her nose (eventually for feeding formula and select meds), a central line entering the neck (for medications which would otherwise be too harsh for the smaller blood vessels further from the heart. This line separated into about six different entry points for all of the medications she was on), two peripheral IV’s (one was used for anesthetics in surgery and the other one was a backup incase the central line failed), and I am probably missing a couple of things, but I am sure you get the point. Isla looked like some sort of cyborg or bionic human straight out of a sci-fi movie. I don’t know how the nurses kept all of the lines straight, but I guess that comes with all of the years of schooling and experience for which I am thankful for. The nurse provided me with her blood results, which showed that all of her liver enzymes, bilirubin, etc. were all still elevated but they were decreasing. The only concerns they had was her level of pain and blood pressure, which was elevated. I am used to packing things up and preparing for a long stay at the IWK whenever there was concerned health professionals so this news hit me pretty hard at the time. I later realized that all of this news was normal for a recently transplanted baby and that it was all part of recovery. The work in the ICU is very delicate, requires a lot of monitoring, and medications are constantly being fine-tuned. The goal during her ICU stay was to gradually take her ventilator away, wean her off of the heavy pain medications, take her off sedation, and close up her abdomen (basically make her stable enough to be taken care of on the regular transplant unit). The reason it was a delicate affair was because as soon as they lowered a pain medication, her breathing and heart rate would increase. They were constantly trying to find a balance between her pain meds and other medications so they could gradually reduce them without causing too much stress to her body. It was amazing how much my little baby could handle at eight months of age.
Finally! Katie got to see the outcome of her heroic act
My bionic baby girl. All of the tubes and things described in this post
A Loving Touch
She got plenty of hand and forehead rubs during her stay in ICU
She didn't know it at the time, but she was going to be super excited to see these two
Sexy Momma Visits
Katie was making a joke of her recovery. On the second day she was already up and walking around (very gracefully a that). She was showing that blue plastic blow-in-it-to-make-a-ping-pong-ball-rise thingy who was boss. Loving the Jell-O and tea and already making requests for us to get her some mint-flavoured lip-chap (I guess the good-ol morphine was giving her pot-lip (dry lips)). However, I completely understood her motivations. The sooner she could move to the normal transplant ward the sooner she could be wheeled over to see her favourite little gal. In the meantime, I was updating her with Isla’s lab results and vitals that the nurses in ICU provided me each day (still not much to report on day two. Under these circumstances, no news was always good news). The drowsiness still hit her like a ton of bricks so our visits were never for too long. Day three quickly crept up on us and Katie texted me to let me know that she would be transferred to the regular transplant unit that day. This was huge news, because as soon as she was settled in there, they would start making plans for her to see Isla (of course it was also good because it meant Katie was recovering very well). It was late that day before the hospital was organized enough to transfer her so it looked like we were waiting until the following day for the big reunion.
Because I’m Happy!
In the meantime, the two small town girls (nannies) were now on the prowl in the big streets of Toronto (this was mildly scary as much as it was humorous). Just as I had predicted, the scariness of the following journey was very real. I had stayed with Katie during the Nanny adventure and as soon as they returned, they had a story to tell. We were smack dab in the middle of Pride week in Toronto so there were lots of bright colours roaming the streets as well as lots of sparkling personalities. To be honest, it is a great experience to be in the midst of one of the biggest Pride festivals of our country. People partying everywhere, lots of entertainment and tons of energy in the city. On this particular day, the nannies, decided to mosey on down to the parade downtown. To my amazement, they actually had no problem navigating their way to the downtown core. The problem was that they ended up right in the middle of a battle between the Black Lives Matter movement and the police. Now I am all for equality and all, but when a group does not stick to their values and instead tries to disrupt a very important parade all in the name of awareness (publicity stunt), then I can no longer back them. They were invited to the parade in the spirit of peace and love and all they did was try to disrupt the parade in an immature rant with the police of the city. However, two things I found interesting:
1. the Toronto city Chief of Police is black
2.Toronto is probably one of the most multicultural accepting cities in our country
Let’s just say, I do not think they will be getting and invite next parade...
Anywho, picture two 50 something young women, not from a major city, going on an adventure, all vamped up, and slamming right into the center of this news worthy scene. What are the chances? Either way, they took the “smarter than Evan’s opinionated self’s” approach and decided to head back to the hospital. I probably would have ended up on the news with some headline stating:
“some crazy ginger boy’s rant to save his race” or
“ginger-boy claims red-heads are the new most racially segregated and unrecognized group.”
“gingers! They are the smallest population in the world, have different skin colour, the most difficult hair to dye, and abnormally large nether regions, but still can’t get a job!”
Ah well, another battle for another time, but I’m gonna: “keep on, keep truckin, you know? Okay, good stuff” (Frank the Tank, Old School).
Wheelin’ Through the Tunnels
The day had finally arrived! Katie was cleared to grab a wheelchair and get wheeled over to Sick Kids hospital. I can’t imagine the thoughts racing through her mind. I can’t imagine how difficult it must have been to perform such a heroic act to save the person she loves more than anything (second to my boyish good looks), just to feel like crap for a few days and not be able to see the outcome of the act. Needless to say, she was on a mission and I was pretty excited as well. Luckily the Nannies, the previous day, took it upon ourselves to preemptively navigate through the very bowels of the hospitals; otherwise known as “the tunnels.” We would have a porter (someone who knows their way around the hospitals) wheeling Katie from Toronto General to Sick Kids, so I do not know why I got it in my mind to take on this task and drag the Nannies down with me (literally). We started from the Sick Kid’s end, went down the main elevator to the service floor, cautiously navigated through the lifeless, dingy, eerie corridors while I had to duck under the low hanging pipes/ceiling. The whole time, the Nannies lost more and more faith in my assurance that I knew what I was doing: “just trust me…” We finally arrived at a double door with a swipe pass keypad. It looked to be like what I had envisioned the connector between the two hospitals had looked like, but it was locked (wah wah waaaaaaaaaahh). Luckily a nurse appeared from a nearby room, took one look at us, stopped in her tracks, and asks: “do you guys need a hand?” It was one of those “what the fuck are these people doing down here” kind of tones. We said we were trying to find our way through the tunnels towards Toronto General. She giggled (clearly because she thought I was cute), advised us that the doors were locked (thanks captain obvious), and said that she wasn’t even 100% on how to get there. I swallowed my pride, muttered to the Nannies that I had knew all of this but was just testing them, and we turned around to head back to Sick Kids (and never speak of this again).
It was about mid-afternoon and they finally tracked down a wheel chair for the very patient momma. The porter and Katie took the lead with the three of us bringing up the rear. It seemed like such an easier path to Sick Kids when we were following the porter. It was a little bizarre to watch my wife (nurse) being wheeled around in a wheelchair, wearing a patient gown and holding onto an IV pole. I guess I have somewhat immortalized healthcare professionals and tended to forget that they are human, too. As we got closer to Sick Kids, I pulled up the ICU number in my trusty speed dial list, and got the “all-clear” to head into the unit.
The Visit (seems like a horror movie title)
It was a pivotal moment of the trip. The reunion of mom and daughter. It was too bad our little lady was still unconscious, but an emotional encounter to say the least. The Nannies had to stand outside the room for the initial trip, however they conveniently positioned themselves in the pathway of the door (I noticed their peering gazes each time the door swung open and closed). Katie immediately went to the opposite side of the bed to hold Isla’s hand. It wasn’t long before she was quizzing the nurse on the past few days like a lawyer would cross examine a witness. Not much had changed since the day prior. Isla’s blood pressure was still elevated, but stable, and her liver enzymes were trending down. She was flinching a bit more (seemed like pain, but hard to tell) due to the initial attempt at lowering her morphine levels. There were still no plans to close her abdomen until after she became conscious and there was also very little treatment for her fractured bones (due to the drugs required to treat her fractures being too hard on the liver). It wasn’t ever an easy visit to the ICU, but it was nice to see the staff’s focus on her being comfortable. Things were continuing to head in the right direction, which is all that we could ask for.