Summer in the Six: Part I
September 19th, 2016
It was time. Isla, Katie, and my first big trip to the big city. Pediatric Liver transplants are not performed in the Atlantic provinces so all of us crazy Maritimers and Newfies are shipped off to Toronto for these procedures. However, this trip would not be for transplant, rather it would be to meet with the transplant team and have Isla assessed. Depending on the results for her assessment there would be three different outcomes:
|1. She would be in need of transplant as soon as possible.|
|2. She would need a transplant, but would be stable enough to wait a bit longer.|
|3. She would not be in need of transplant anytime soon.|
Baby at 39,000 Feet
You take flying for granted before a baby comes along. For most people there is enough anxiety when hopping on that tin can in the sky. Adding a baby to the mix and here comes a whole new slew of anxiety. I am far from a nervous flyer, but I definitely had my concerns with bringing an 8 month old on a plane. What if she’s screeching to the high heavens the whole time? What if she shits all over herself and me? What if she lets one of her adult farts rip and everyone thinks it was me? The anxiety arises due to worrying about all of the other passengers on the plane. Everyone is in such close proximity that you hear, smell, and feel everyone so I am always conscientious of that. People actually get annoyed when a baby is crying on a plane, like it can actually be prevented with some baby chewable Ativan or something. So, you all probably know me well enough by now, and when people are being morons I tend to fight it with sarcasm (probably why I have very few friends, but hey, I have fun). Here’s the truth though, the following clip from one of my favourite comedians explaining this exact situation, is how I got over all of my potential anxiety to “babies on a plane.”
Turns out, Isla loved flying! Thankfully she was a flying superstar so I did not have to “take her out” for the selfish passengers. Let’s rewind for a second. Who woulda thunk it, that there are actual perks to travelling with a baby? My wife and mother are keeners and assured me that we needed to arrive at the airport THREE hours before a flight, which I do not think I have ever done. Of course, I disputed this and of course I lost the battle. We arrived at the airport three hours before the flight, checked in on the airport robots, checked our luggage, they wrapped her stroller in a body bag, and we were finished stage one. The first perk arose during this stage and that was that you are allowed to bring extra baggage on the plane due to flying with a baby. The second perk arose at stage 2. I looked like an idiot when we arrived at the security checkpoint and there was a huge, slowly moving line. Katie gave me a smug, yet satisfied, “I told you so,” look. Before we lost our shit about missing our flight while navigating this maze, a hole in the ceiling emerged and a light shone down from the heavens onto a lone security guard. A choir was singing hallelujah in the background and the security officer’s teeth twinkled as he said:
“You guys travelling with a baby? Well come on down, we have a special line just for you.”
Of course I was cartwheeling down this line while waving at all the poor suckers who decided not to rent a baby for this plane ride. I looked at Katie when we arrived at the security check point in record time and proclaimed that I knew this would happen the whole time. That’s why I thought arriving three hours early was ridiculous. When Isla is too old to qualify us for this lineup then we will have to trade her in for a new baby (perk #2). The third and final perk was realized when they started boarding the plane. You know, when they call on all the fancy pants business men/women, people who need assistance and BABIES! Probably one of the only moments in my life when I would walk up to someone (airplane ushers – people who call you up to board. I clearly do not know what they are called) and say: “BAM! Yeah that’s right I got myself one of those baby thingy’s.
Katie had the smart idea to purchase the Plus seats on our WestJet flight so that we had an extra space between us. I thought it was a good idea because I wouldn’t want Isla and I squeezed up next to a ginormous sweaty Newman-like dude for the whole 2-hour flight. To all of you potential aero-baby parents out there, it’s well worth the extra money, I tell ya hwhat. As I said earlier, the flight was a breeze. The stewardess’ gawked at our lovely little gal, she had a couple of sobby moments, and then slept for most of the flight. I learned a lot about changing a baby on a plane (I will discuss this on a future post) and it turns out that our little adventurer loves landing (probably why I always risk a speeding ticket every time she is in the car with me. As stated before: “she likes to move it move it!”). One of the lovely airport personnel at the end of the flight advised us that we could actually bring her right up to the plane doors in her stroller (would’ve been nice to know earlier, but hey, yah live and yah learn).
The McChicken House
We arrived in Toronto later in the evening and we somehow half haphazardly navigated the UP Express train as well as the subway to the Discovery District of the city. Some goofball back home told us that the Ronald McDonald House was just across the street from the two hospitals (Sick Kids and Toronto General) so I set my navigation to those buildings, thinking that we would just stumble upon the house when we arrived. Well a couple blocks in the other direction, some slight bickering between Katie and I, some of Isla’s “my parents are morons” glances and we made it to our destination. Well, holy crap, this place was nice! I was thinking it would be some run down, half-way house-type place above a McDonalds restaurant, where a goofy clown statue would welcome us via a drive-thru PA system with complimentary Big Macs. Boy was I wrong… It was a beautiful, modern, 4 level, brick apartment complex tucked away in a quiet residential area behind the hospitals. When you pulled up to the main entrance you were met with a perfectly manicured property, a finely lit sign which read the words “Ronald McDonald House,” a light brick wall, leading to a black cast iron fence. The next area we began to appreciate more as the temperature became as hot as Hades. The first set of two doors would get you into the building where you would be slapped in the face with some glorious air conditioned air. I get overheated very easily due to being a big ginger constantly on fire, so I looked like the girls from those old Herbal Essence commercials in the shower having their “O” moments. At first I acquired some awkward stares from the tenants of the building, but they immediately understood as soon as that glorious air hit their faces.
The building housed something in the area of 80 families. There were two huge kitchens on either side of the dish pit, where about 4 times a week different companies would visit the house to cook a wide variety of home cooked meals. There were always things going on for the kids, such as wood-working, face-painting, and movie night; to name a few. The rooms were equivalent to a well cleaned and prepared apartment less the kitchenette. I could go on for days about how great a place the Ronald McDonald House Charities Toronto is, but I have much more to talk about in this post. I will end the description of the house on this note: They meet the mark for making you feel right at home during a potentially stressful time in your life and I cannot thank McDonald Charities and the staff enough for creating such an important place.
Assessment – Week 1
This week was fairly uneventful. The hospital mainly wanted to meet with us, educate us on the process of transplant, and gather info on Isla. The transplant team at Sick Kids were phenomenal. They were all very professional, thorough with their explanations, and clearly took their important roles very seriously. We spent most of our time with Jennifer, a bubbly nurse in the department whom would be following our little lady, before, during and after transplant. During the first week we realized that we were very fortunate to be surrounded by so much medical and scientific knowledge throughout our lives. We couldn’t imagine how overwhelming all of the information would be for people less savvy in the medical sciences. They were always very considerate of me, not knowing I had a degree in Biochemistry (and that I am generally just a genius), and they always asked if they needed to re-explain anything. I guess my occupation of Sales Coordinator and Fommy probably threw them off a bit (not many people in retail were stupid enough to bust their ass in a 4-year science degree). The first round of diagnostics included good old fashioned bloodwork and an ultrasound of her liver. If anyone ever had a choice on which organ to be diseased it would be smart to select the liver. Don’t get me wrong, it has its fair share of difficulty, but it mainly regenerates itself, can support a live organ donation, and only requires the same blood type as a prerequiite for donation. Thankfully, Katie and I have always had a strong focus on health and nutrition in our house so one of us would at least pass that requirement. I can’t imagine how guilty we would feel if we could not help provide our daughter a second chance at a normal life all because of something as preventable as poor personal health (keep that in mind all you lazy, binge drinking, smokers out there. Some day you could quite literally be hurting more people than just yourself. Well smokers usually do hurt other people, but that’s a different rant for a different time).
Perhaps one of the most interesting tests Isla had was the calorimetry test. Katie and I started laughing when the technician had explained that the test would involve a fishbowl-like apparatus being placed over her head for 30 minutes in which she would have to remain still without crying. We wished her the best of luck, but were quite surprised that she actually did a good job for the first 15 to 20 minutes. The iPad we used for distraction through the glass of her fishbowl helmet worked quite well. Nothing but King Julien was going to keep her calm and still for 30 minutes. The technician advised us that she would try to extrapolate the required data the best she could to which we later learned was deemed inconclusive. Waste of time, but definitely an entertaining half an hour. Oh, by the way, this test was to determine her calorie output/intake so as to provide her an adequate amount of nutrition.
Next, onto the GFR test. The team here wanted to determine how well Isla’s kidneys were functioning since there is a potential for kidney problems associated with Biliary Atresia. This test brought back flashbacks of the HIDA scan. If you remember from the “Bomb Drop” posts, it involved an injection of radioactive dye into her veins and being placed into a large MRI-like machine so that they could watch the dye filter out of her bile ducts into her gut. Well, this one was very similar with the exception of the organ system they were monitoring. For the GFR, in contrast to the HIDA scan, they would be monitoring the ability of her kidneys to filter out the dye. One added benefit was that I would have to come back every hour for the next three hours so they could watch and see if all of the dye had been excreted from her body. Ah well, it gave me lots of time to learn the complete blueprint of both the new and old sections of the hospital.
In conclusion, after the first day Jennifer was pretty confident that Isla would be needing a transplant as soon as possible. Her kidneys were perfect, but the kicker was how malnourished she was. The liver is a damn important organ and is required in order for our bodies to digest a lot of vitamins and minerals. These vitamins are crucial for proper neurological, organ, and bone development. Isla was severely deficient in vitamin D, phosphate, and calcium, which are all needed for bone growth. Due to this she was diagnosed with a disorder which usually only plagues third world countries; Ricketts (underdeveloped or soft bones). You can pump her full of all of the supplemental vitamins, minerals and drugs you want but if her body won’t accept them into the bloodstream then you’re just creating some very expensive pee (similar to all those beef heads out there jamming all those powerlifting supplements into their bodies. Isla is almost as strong as them, too). Needless to say, Isla was put on the donor recipient list for both Ontario and Atlantic Canada. Every few weeks or as Isla’s disease progressed, she would slowly creep up priority on that list (for infant liver transplants you start pretty far up on the list to begin with). It’s a potentially long and risky process to which one tragic event in one family leads to saving another (one otherwise healthy individual has to die in order to provide our child an extended life. Pretty morbid and not a perfect system). Thankfully, as stated earlier, Isla decided to go and get her liver sick, which would allow one of us to donate a piece of ours to her. My hope is that one-day Stem Cell research will lead to a world where it will be unnecessary for people to pass away while waiting for an organ.
Assessment – Week 2
Normally the process involves a flight to Toronto to get your child assessed, you head home, come back to Toronto for the transplant or to be assessed as an adult live donor (whichever comes first). We were 100% certain that we wanted to be assessed to donate a portion of our liver so we advised the transplant team of this and they were extremely accommodating. We saved, having to take another trip back and forth to Toronto and Katie immediately proceeded with her assessment the following week after Isla’s assessment. Again, nothing super eventful happened this week. I took Isla to a few more appointments while Katie met with the transplant team at the Toronto General Hospital. The surgery involves quite a bit of coordination between the two hospitals, so much so that the actual transplant surgeons work at both locations. There is a lot of education and precaution taken for the live donor, because the very fact that you are taking a healthy individual and putting them under otherwise unnecessary health risks, goes against everything that doctors stand for. It goes to show the enormity of benefits live donation has over deceased. They only take organs from deceased donors who have healthy organs which still have blood flow (therefore they have to be brain dead and on life support). This leads to another important issue with deceased donation, which is the rarity of this type of death occurring to and otherwise healthy individual who has signed up to be an organ donor. One other issue deceased donation has in comparison to live donation is that you really do not know what that organ has been through in the donor’s lifetime (only what has been medically recorded). All of these issues are important to note, however, if a deceased organ becomes available before you come back to Toronto for transplant, then they proceed with the transplant using the deceased organ as a standard. We would receive a call, one of us would hop on the “air ambulance” with Isla and immediately fly back to Toronto for the surgery (pretty intense stuff, which I only appreciated in TV dramas up until now). So, Katie was educated in all of the risks, what would be involved with the surgery (on her part), she met with a psychiatric nurse (to determine if she was being coerced, paid, under drug influence, and to assess her general psychological state leading up to her decision to donate), her own MRI/CT scan of her liver (she claims that the dye injected for this test lead to her feeling like she was on fire and peeing herself at the same time; lovely), and a shit tonne of bloodwork (26 vials to be exact, which would probably have killed me).
After two busy weeks in Toronto, we were to head home and await the call to see if Katie could donate. If not, I was to head back to Toronto and go through the same tests. Mothers tend to be the more appropriate candidates due to the smaller size of their organs and due to males having generally more fat on their organs (so we were banking on Katie getting approved and petrified that our girl would have to wait for a deceased liver whilst deteriorating more and more in her own health). If Katie was approved, they were prepared to book her and Isla into surgery at the end of the month (about 3 weeks away. It all happens very fast at this point). We arrived back home and in just shy of a week Katie had received the call. She was preparing to administer an interview at her work when the call occurred. She was on the phone for about 15 minutes and then she had to go into the interview straight faced and knowing that she was approved to save our daughter’s life (pretty heavy). She immediately called me after the interview, her poopy-faced boss therefore found out before I did, and I may have peed a little with excitement... just kidding, about the pee. Probably the next most emotionally taxing situation I have experienced after the birth of my first baby girl.
Next, you’ll all learn the juicy details of the most important, stressful, emotionally taxing months of my life...