Summer in the Six: Part II
October 2nd, 2016
Katie was approved to save Isla’s life! Wow, what an important call and what an amazing healthcare system we have. Isla’s and Katie’s surgeries were booked for June 30th, 2016. At this moment in time we were to prepare to fly back to Toronto next Sunday (didn’t I tell you things happened quickly?). We were both full of mixed emotions and nerves. When Katie arrived home from work after “the call,” we just stared at our swollen and yellow baby similar to how we lovingly stared at her for a full day after she was born. What kind of parents were we to be looking forward to such a large procedure and painful recovery process? But it wasn’t that; we were looking forward to getting back a normal life in which we were robbed of almost eight months ago. We were looking forward to the frequent hospital trips and battery of medications to come to an end; or at least become much rarer than they were now. We were looking forward to ending the constant: “is this fart and sniffle her disease flaring up again? Or is it just normal baby stuff?” Of course we would remain vigilant, a transplant does not take away ALL risk whatsoever, but the concerns would be less. So many thoughts running through our heads, but “shit!” we gotsta get ourselves packed...
We were super anal about cleanliness leading up to the flight, because if Isla fell ill in any way her surgery could be delayed. With how sick she was at this point in time, this was a very likely scenario and it scared the shit out of us. Turns out Katie, who never gets sick even though she works at a hospital, came down with one of the worse colds she has had in a long time. From that day until the day we left for Toronto, it was like I had a new roommate who was shut away in the basement and fed fish heads. There was no contact between Isla and Mommy, which was extremely hard for Katie. She was not able to hold her little gal right before a major event in our lives. I became fulltime “Fommy” 24 hours a day and 7 days a week, which is crazy exhausting. Let’s just say the Purell baths and the tense moments were in full swing that week. Thankfully, all of that effort paid off, Isla never got sick, Katie started to feel better, we kept Toronto in the loop, and all went as planned... “Phew!”
Love and Support
Even though Sunday was only about a week after the phone call, it felt like forever. We accomplished quite a bit in those few days (it’s amazing how efficient you are when you put your mind to it). We had limited support from the province and so there was still going to be quite the financial burden associated with our 1-3+ month stay. Katie and I are either very proud or very stubborn or both, which Katie’s mother clearly knew about us, so she set up a crowd funding online for support (Katie’s friend Tabitha also mentioned the idea around the same time). It’s actually pretty simple:
|1. You pick out a crowdfunding resource online (we chose YouCaring.com because it is tailored to health related causes and it did not charge the donators any fees. A true fundraising platform not out to make large amounts of profit).|
|2. You create an account on the page and link it to a PayPal account|
|3. Katie’s mom wrote up a nice blurb about us and what we were experiencing|
|4. Then you just shared it to social media|
|5. Then Bob is your uncle|
We expected a few bucks here and there from close friends and family (which is all we thought we needed), but I guess people around the world do not like to hear news of a sick baby and innocently burdened family. We can’t thank the hundreds of donors enough. The overwhelming support and messages sent to Katie and I still bring a tear to our eyes when we think about it. We were worried that we would get way too much money so we were planning to donate the remainder to the IWK Foundation, Sick Kids Foundation, and Ronald McDonald House Charities. However, we received just enough to make it feel like we were not even away from home financially. We still plan to be very involved with all of the foundations who aided us in our time of need and we have many great ideas on how to pay it forward (I am sure I will talk about it in future blog posts). Katie’s boss and fellow co-workers graciously kept our house tidy and they provided much needed emotional support to our three furbabies while we were away. The staff at the Valley Regional Hospital blew through all items in a bake sale, which should have lasted days, and we even had an anonymous local mow our lawn (our great neighbour from across the street, man it’s good to live in a small town). To all of you, Katie and I owe our deepest gratitude. We will never be able to thank you enough.
In the Air Again...
Again, I cartwheeled through the express security line at the airport with a dumb smile on my face, skipped up to the front of the boarding line, and wore all of the extra bags we could take on the plane. This time we brought Isla right up to the plane door in her stroller, which was glorious, and handed it over to the airport baggage worker people (again, I am ignorant to your actual job title and for that, I am sorry). The plane ride was a breeze again and “flew” by rather smoothly (my little lady was becoming a flying pro). Our intimacy with this lovely city was growing and there was no more getting lost from the airport to the Ronald McDonald House (RMHC). Up Express train from the Pearson International to Union station, TTC subway from Union to Queens Park (always needed to be an accessible stop so we could get the stroller up), cross University Avenue and walk along College Street to McCaul Street (where the house is).
Pansies and Blood
We had one day to settle into the RMHC and then Isla was admitted to the Sick Kids Hospital the following afternoon. The two days prior to Isla’s surgery were dedicated to meeting with the transplant teams, signing consents, bloodwork, ultrasounds and X-Rays (we had concerns of fractures due to her Ricketts and her increased fussiness the last few days). We joined a research study for Biliary Atresia during our assessment trip to Toronto and another research team met with us for a study on transplant patients. If there was any way we could participate in a future of better detection, treatment, and data for Biliary Atresia we wanted to be involved. The one snag this time around was that the research team wanted blood from both of the parents and if you remember from previous blog posts, this big lug is a big pansy when it comes to needles. If I can ever avoid a needle I will, but with these high stakes, there was no getting out it this time (the things I will do for my little lady). When you walk into a major blood clinic inside a pediatric centre with a giggly little 7-month old and a sexy petite wife and say: “I tend to pass out with needles;” their sadistic faces light up with glee and the teasing begins. We had to wait longer in the waiting room because they needed to prepare a bed for me to lay on whilst I get that sliver of metal piercing my flesh. If our damn blood was meant to be taken we would not have all kinds of vascular tissue, muscle, connective tissue and skin covering it, but hey, it’s for science. They laid me down on the bed, giggled some more, asked if I would like an orange juice sippy and talked to me all therapeutic-like in order to limit my chances of fainting. If you are a fellow needle-baby like I am, you know that all of the tactics they use to calm children just draw the process out and make it worse. I kindly said not to bother singing lullabies in my ear and to just get on with it. One blood tech even came over and sprayed a whole can of the cold spray on my arm to which the whole room blew up with laughter (laugh it up, fuckers!). The blood was quickly drawn (man she was good), the whole room stood there for a tense few minutes just staring at me with anticipation, and I looked back and said: “if it hasn’t happened yet, it isn’t going to happen.” Just as a precaution, they kept me laying for a few more minutes, I assured them I was fine, I sat up, and I got that damn orange juice sippy!
The Day Before the Big Day
Isla was admitted to the sixth floor Transplant unit the day prior to surgery. The preliminary results of her X-Rays showed that she had a few fractured ribs and the ultrasound showed that her ascites had returned (man that girl is tough and here I am bitching about a little needle). It explained a lot. Isla’s whole life she had always been super mellow and flirtatious. Her fussiness and cries always meant she was either poopy, tired, hungry or a combo of the three. The last few days leading up to our flight, she was cranky at the drop of the hat, she would hold her breath when we picked her up, she barely smeyesed anymore (smile with her eyes), and the only way she settled was when we held her close to our chests. The pain she must have been experiencing killed me inside. By the time we found out the news the Nannies had arrived! There was going to be no way in Hell that we were going to go through this great experience without Isla’s two biggest fans there by our side. They were in Toronto with us for two weeks, starting the day before the surgeries. We spent the rest of the day hanging out in the hospital room having some fun and trying to get our minds off of things. The anesthesiologists came in and explained the risks of anesthetic as well as the role they would play tomorrow. One of the transplant surgeons visited and explained how the procedure worked. Katie would be admitted early tomorrow morning to the Toronto General and her procedure would take about 4 hours. During Katie’s surgery, approximately 25% of her liver would be removed for transplant, but before any removal could take place the surgeons would need to be 110% sure that Katie’s liver was suitable. They would determine this by performing a cholangiogram (injecting dye through her gallbladder to identify that her liver structures were normal and safe for transplant). There is always a small risk that once the surgeons visualized her liver they would determine that she would not be a suitable candidate to carry on with the donor surgery. This would result in the same recovery period for Katie and zero benefit to Isla (needless to say, this was a scary thought). After her piece of liver was removed and deemed suitable, the transplant nurse would deliver it to Sick Kids where Isla would be waiting. If timed properly, they would be nearly finished removing Isla’s diseased liver and sending it off to pathology for examination. They would then put Katie’s piece of liver in Isla to replace her old one, connect all of the vessels, and send her to recovery. Isla already had her gallbladder removed back in December, when she had the Kasai procedure, but this process would remove Katie’s gall bladder as well (some disagreements with certain foods was a small price to pay in order to extend our little girl’s life). This is a very simplified version of the whole process, but I think you get the gist of it; a big procedure.
When the evening rolled around, the doctors wanted us to head down to X-Ray again to perform a full body scan. They wanted a good picture of her bone structure in order to more accurately treat her during and after surgery. These were not fun trips due to the excruciating pain she was in. The X-Ray techs did their best to be gentle, but when she had to sit straight up in a dunk-tank-like apparatus, pushing against her face, while holding her hands in the air; you can imagine how painful it would be. After hearing the ear piercing screams she let out during the first X-Ray, I had to tag out and let Katie jump in on this one (I still had to sit just outside the room and listen, which wasn’t much better). I do believe we figured out the results later on during our stay, but it turns out she had three fractured ribs and both of her Tibias broken (the lower right and left leg bone). Trying to settle a baby down for a good night’s sleep when they have not been able to get a proper nap all day is tough enough, but adding the pain into the mix made it that much tougher. We did manage to get her down the night before surgery and she was surprisingly well mannered (just extremely exhausted I am sure). The Nannies left for the night to stay at the Ronald McDonald House and allow us to be together as a little family.
The Big Day
The night went by pretty smooth. I do not think either of us slept much, but Isla slept well and that is all that mattered. Katie met with her mom over early at the Toronto General in order to prep for surgery. My mom arrived at the Sick Kids transplant ward to provide Isla and I with much needed support before her surgery. Isla was to be prepped for surgery about two hours after Katie went down, but let’s just say things didn’t go according to plan. The doctors did prepare us for the timeframe by saying the two procedures have taken anywhere from 8 to 12 hours in total, but it was probably one of the most upsetting four hours I have had to wait. Isla had to be fasting for about 6 hours before her surgery, but they were running a little behind (I was assured this was normal and that Katie was doing well, but waiting in these moments are very tough). With the combination of the fractured bones and not being allowed to eat, Isla was the most upset that I have ever seen. Even holding her against my chest to snuggle would not console her. I performed a combo of laying her swaddled on the hospital crib, cradled in my arms, and tight against my chest whilst navigating around her IV lines. As soon as my arms began to cease up and burn from the pain of holding her, my mom would take her for a short amount of time (I did not let her take her for very long as I did not want to let her go). It turns out that they were two hours behind (8 hours of fasting for my little lady) and the nurse ran into our room to let us know that the operating room (OR) was ready for Isla (the nurse was starting to get just about as anxious and frustrated as we were at this point). The porter (people who transport patients and materials around the hospital) was not going to let me carry her the whole way to the OR room (down a floor), but I think as soon as he saw my mother and my face, he realized that he did not want to bark up that tree. The three of us arrived in the OR holding area, I filled out a form and answered some standard questions (i.e. any allergies? Has she had anything to eat or drink?), and the anesthesiologists arrived to wheel her into the operating room. At this point I was hoping they would arrive with a needle in hand so as to ease the pain my baby was in, but I knew this was an irrational thought. I had held myself together up to this point, but similar to when I had to kiss her on her forehead before her Kasai procedure, the tears and helpless weak feeling overtook me. Mom and I held each other and walked out of the holding area. I can’t even explain the thoughts going through my mind in this moment and I would never in a million years wish for anyone to feel it. You feel a sense of relief due to having complete faith in the professionals at Sick Kids, but you can’t help but feel that this may be the last time you see one of the best things you created in your whole life. So you better make sure that damn kiss on the forehead is a good one and be thankful for having your loved ones there to get you through the day.
Next, it was time to head over to the surgical waiting room at the Toronto General and wait for the news that the love of my life had flew through her surgery with flying colours. Holy shit this waiting sucks...