Sunday, July 10, 2016
It's hard to believe we're back at this yet again. After getting our surgery date we began to get things ready for another trip to Edmonton. My brother-in-law and girlfriend recently sold their condo and are waiting for possession of their new house so the timing for them to house/dog sit could not have been more perfect. That, along with the fact that I love to clear and declutter when I'm nervous, kept me busy getting rid of things we didn't need and making sure the house was in good shape for our house guests. But as travel day began to rapidly approach we noticed we were getting more and more invitations from family and friends to say goodbye. Since we didn't have the time to see everyone individually we invited the family over on Sunday for a brief come-and-go. It was a great opportunity to get in the last snuggles and pray together before we took off for Edmonton.
This round of surgery is going to be more intense then the heart catheter James had last month as we now are faced with his second open heart surgery. Needless to say sleep did not come easy that night as I was anxious for what the week had in store for us.
It's hard to believe we're back at this yet again. After getting our surgery date we began to get things ready for another trip to Edmonton. My brother-in-law and girlfriend recently sold their condo and are waiting for possession of their new house so the timing for them to house/dog sit could not have been more perfect. That, along with the fact that I love to clear and declutter when I'm nervous, kept me busy getting rid of things we didn't need and making sure the house was in good shape for our house guests. But as travel day began to rapidly approach we noticed we were getting more and more invitations from family and friends to say goodbye. Since we didn't have the time to see everyone individually we invited the family over on Sunday for a brief come-and-go. It was a great opportunity to get in the last snuggles and pray together before we took off for Edmonton.
This round of surgery is going to be more intense then the heart catheter James had last month as we now are faced with his second open heart surgery. Needless to say sleep did not come easy that night as I was anxious for what the week had in store for us.
Monday, July 11, 2016
Travel Day
While you'd think we'd be used to this whole song and dance by now, little bits of the process change each time we go. First time around James was not even two days old so he was med-evaced to the Stollery's NICU as an in-patient. For the heart cath he had spent the previous weekend in PICU in Winnipeg so neurology to monitor his possible seizure disorder, and while he flew with me, we got to skip the pre-flight check up in Winnipeg because he'd already been cleared by the PICU. This time around we went to our pre-flight appointment and knew things would be different in Edmonton too due to the severity of the surgery and the fact that he is no longer a neonate, but a pediatric case.
We made really good time to our appointment at the Variety Children's Heart Centre and anticipated a long wait since we were 45 minutes early. But they were so on top of things we got in early for each of our appointments.
Cardiology
Stop #1 Cathy, our social worker - she gave us the details of our trip, the logistics of support, and who to contact for any additional assistance. Check.
Stop #2 Dr. Peppelassis, our cardiologist - explained to us the basics of the planned procedure with note that finer details would be explained by our surgeon in Edmonton. That being said, he suggested that if all goes well we could be headed home in 7-10 days. We were also concerned about the fact that James will be seeing a different surgeon this time around. Normally you're assigned a surgeon based on rotation, and then that surgeon follows your case for all subsequent surgeries. Due to the severity of James' condition and the fact that Dr. Rebeyka is away on vacation, Dr. Ross will be performing the surgery instead. Dr. Peppelassis assured us that we were in good hands and really set our minds at ease.
If you've seen James you probably know that he looks like a very healthy, normal, happy boy. You'd never guess he wasn't well. But apparently this is because he's a baby and not active yet. The severity of the narrowing in his pulmonary artery has caused such extreme hypertension that if he was a very active boy or an athlete he could literally drop dead one day without warning. I mean, I knew it was bad if they thought he needed another open heart surgery, but I can honestly say I didn't realize it was THAT severe. But anyway, Check.
Stop #3 Lea, our surgical coordinator/case nurse - she was there to answer any other questions we might have and was just her usual wonderful self. We've really appreciated all the help Lea has given us through our journey and just getting to talk to her in person really helped put me at ease.
Stella's
And with that we were on our way. Our flight wasn't until 3:30pm but Chris' aunt, uncle and cousin were flying in that morning from Halifax for a visit and to meet James so we were glad our paths crossed long enough to allow us to have brunch at Stella's with them and Nana in the airport. I've only met them once but it's always nice to make new connections and spend time with family. It was eerie how similar Chris' aunt and mom are in looks and mannerisms though! They're like the same person! Must be what people think when they see me and my mom! lol. Side note, Stella's is probably my favourite restaurant and I always get the same thing - the Veggie Cafe. It's SO GOOD you guys. Seriously, you have to try it. That being said, Chris got this Thai Curry bowl... and I think I may have to order that next time. I told Chris we'd have to go at dinner time though because if it was before 5pm I'd probably still get the veggie cafe.
And with that we were on our way. Our flight wasn't until 3:30pm but Chris' aunt, uncle and cousin were flying in that morning from Halifax for a visit and to meet James so we were glad our paths crossed long enough to allow us to have brunch at Stella's with them and Nana in the airport. I've only met them once but it's always nice to make new connections and spend time with family. It was eerie how similar Chris' aunt and mom are in looks and mannerisms though! They're like the same person! Must be what people think when they see me and my mom! lol. Side note, Stella's is probably my favourite restaurant and I always get the same thing - the Veggie Cafe. It's SO GOOD you guys. Seriously, you have to try it. That being said, Chris got this Thai Curry bowl... and I think I may have to order that next time. I told Chris we'd have to go at dinner time though because if it was before 5pm I'd probably still get the veggie cafe.
Folk Fest
After our visit with Chris' family we headed through security to wait there. It was almost 1pm now, but our flight had been delayed by an hour. So, we got to spend the whole afternoon entertaining a baby in the airport. The fun thing was it was the first day after Winnipeg Folk Fest so there were all kinds of hipster musicians wandering around. I'm not nearly cool enough to know who any of them are of course so I made a game out of "name that band" by scrolling through the performer playlist from folk fest and matching the people to the band photos. But then FRED PENNER walked by! Game over. He's the coolest. I then spent the rest of the afternoon singing Sandwiches Are Beautiful and The Cat Came Back to James. Fred Penner was my very first concert as a kid so I was a little starstruck. I think you have to have grown up in the 90's and be from Canada to know what I'm talking about, but he's the best.
After our visit with Chris' family we headed through security to wait there. It was almost 1pm now, but our flight had been delayed by an hour. So, we got to spend the whole afternoon entertaining a baby in the airport. The fun thing was it was the first day after Winnipeg Folk Fest so there were all kinds of hipster musicians wandering around. I'm not nearly cool enough to know who any of them are of course so I made a game out of "name that band" by scrolling through the performer playlist from folk fest and matching the people to the band photos. But then FRED PENNER walked by! Game over. He's the coolest. I then spent the rest of the afternoon singing Sandwiches Are Beautiful and The Cat Came Back to James. Fred Penner was my very first concert as a kid so I was a little starstruck. I think you have to have grown up in the 90's and be from Canada to know what I'm talking about, but he's the best.
The flight itself was uneventful, and while Uber is back in Edmonton, they don't service the airport yet. Boo. So we cabbed it up to our regular digs, The Campus Towers. Funny thing is the front desk lady and I are basically friends now. She saw me walk in and asked why we were back so soon and how James was doing. lol! Funny how it all becomes so familiar so quickly.
Tuesday, July 12, 2016
Pre-Admission
Pre-Admission days are almost just as long as surgery days. It's filled with appointment after appointment, test after test, leaving you constantly wondering when will be a good time to feed your baby, and how am I going to keep him happy and quiet all day when everyone is poking and prodding him and needs him to be still! You can only bounce them so long before that just doesn't cut it anymore! Plus your back gets tired, and your arms get sore, and your brain hurts from having to be hyper-attentive to your child and the details they're explaining to you! It's the hurry up and wait game, and it all started very early. We were scheduled for the pre-admissions clinic at 7am today where the first thing on the docket was paper work. I got half of it done while Chris headed down the hall to fill out some more out of province forms.
Once that was done we were assigned to our little cubicle and even had the same nurse we had the morning of James' heart cath last month! She's nice. I mean, they're all nice, but we really like her. After vitals the first visit was with our anesthesiologist. Chris and I had been trying to figure out if there was any difference between an anesthesiologist and an anesthetist, so we asked... no difference. Tom-eh-to, tom-ah-to. Anyway, we were asked the regular medial and health history questions, given the list of risks, signed our waivers and away she went. Next we met with the surgical fellow who again check our medical and health history and informed us that the details of the procedure would be explained to us by Dr. Ross when he came to see us later that morning.
Then came the poke. Funny enough, we had the same nurse who had poked him both times for his heart cath. The blood draw is to match James with the transfusion they'll use to prime his heart-lung bypass machine and any other blood products he may need during operation. Because she had drawn his blood before she knew exactly where to look for a good pull and had a lot of fun playing around with him. He still cried bloody murder while she took the sample but he was all smiles afterwards.
After this we were off to radiology for James' chest x-ray. This time around they only let one of us in the room for the x-ray so I let Chris go in since I'd already seen the whole sausage-tube thing before. James was not happy about it though, let me tell you. After fasting since 5am for his sedated echocardiogram later that morning, he was not a feeling the whole x-ray setup. He cried so hard that he literally pooped! So after we got him all cleaned up we brought him back to pre-admission where our nurse was ready to take us up to the echo lab.
Before we could actually go in for the echo we had more paperwork to fill out, James had his vitals taken again, and then came the Chloral Hydrate. Apparently it doesn't taste very good. But once we got him to swallow it he went to sleep really quickly. Since he had been pull around all morning he was past due on a nap and the chloral put him right over the edge. So, with James all set up to go we were given a pager/restaurant buzzer and were sent off to wait for the echo to be done and for him to be awake. An hour later we started to buzz so we headed back up to collect our little boy.
He was hungry and super groggy, but happy. Apparently he woke up smiling! And once we got the go ahead from the nurse we headed back down to pre-admissions to finish up our appointments.
Before we could actually go in for the echo we had more paperwork to fill out, James had his vitals taken again, and then came the Chloral Hydrate. Apparently it doesn't taste very good. But once we got him to swallow it he went to sleep really quickly. Since he had been pull around all morning he was past due on a nap and the chloral put him right over the edge. So, with James all set up to go we were given a pager/restaurant buzzer and were sent off to wait for the echo to be done and for him to be awake. An hour later we started to buzz so we headed back up to collect our little boy.
He was hungry and super groggy, but happy. Apparently he woke up smiling! And once we got the go ahead from the nurse we headed back down to pre-admissions to finish up our appointments.
Dr. Ross
It was finally time to meet Dr. Ross. We'd heard great things about him but it was nice to finally put a face to the name. We shook hands and sat down to have our conversation. While we were going through introductions the thought crossed my mind that I probably shouldn't shake his hand so hard. I mean, those hands are going to be fixing my baby's heart tomorrow! I probably shouldn't have squeezed so hard! The random things you think about when you're nervous and overwhelmed...
Dr. Ross explained to us that it appeared the narrowing was above the valve enough that it shouldn't affect the valve itself. Once they open him up tomorrow things could look different, but for now it looked good. If it's too close to the valve it will cause leaking, which shouldn't cause too much trouble now, but would likely require a valve replacement when he's older.
The twisting we had been told about earlier would not be corrected, but would be alleviated by the arterial augmentation. They're going to create an incision in the pulmonary artery, near the point where it branches to the two lungs, and patch it with bovine pericardial tissue since the extra tissue from his own heart had been used to patch the original arterial switch.
The procedure should last about 3 hours, plus an hour before and after surgery for the anesthesia. We're slated as the first surgery of the day again (apparently they only do two a day) so tomorrow will be another early start.
The other interesting thing he mentioned was that because he's already had an open heart surgery, there is a chance the heart healed to the breast plate. If this is the case they will have to hook up the bypass via the groin... which meant we got to add another appointment to the roster for today, since they needed to check out four different artery locations with ultrasound for this to be an option.
Apparently this kind of complication (the narrowing of the pulmonary artery after arterial switch) was very common when the procedure was first introduced, but hasn't been an issue for probably 10 years now. It comes up occasionally, but not often. They don't know what kind of long term effects these operations will have on quality of life because the switch procedure has only been around for about 25 years. When it was first performed 9 out of 10 babies died. Now it's nearly 100% success rate if pre-diagnosed. And with care continuing to improve each year there's a good chance that anything that can't be fixed now could be fixed in the future.
With the heavy conversation out of the way we were down to our last few appointments.
Back to back we saw our pre-admission nurse for instructions on the 3 antiseptic baths we had to give him before surgery and when he needed to begin his fast, then the social worker to make sure we were aware of all the resources that were available to us, and the pediatric physiotherapist who went through all the dos and don't post surgery and post-op physical rehabilitation. We were exhausted but we still had one more to go. We were told they had snuck us in for an ultrasound, gave us the requisition form and told us where to go for our appointment at 12:45.
Research
Once in the ultrasound office we had some trouble getting in since our appointment wasn't appearing in the computer system. 25 minutes later... they figured it out and we were sent in for our ultrasound. On our way into the lab we were stopped by two women from the University Hospital. They had been sent to find us to ask if we'd be interested in participating in a medical study. They're testing to see if there is any difference between the use of a fresh blood product (max 7 days old) and a stand blood product (max 42 days old). James qualified for the study since they knew for sure that he would be receiving blood products. In the previous study conducted on adults the findings showed no difference in the patients recovery, so now it was time to try it on the peds. He will be given blood products from a chance draw of either fresh or standard and then all subsequent blood products will be of the exact same period (i.e. always 32 days old). We agreed, signed the papers and were on our way.
The nurse who brought us in was this funny Eastern European woman who took one look at James and said, "Ach, he's FAT!". Then he smiled at her and she insisted she was now his hospital grandma... but what an introduction!
The ultrasound was long, and James was squirmy, but we sang him every song we could think of and got through it. Everything checked out (our tech had worked with James when we were here in January) and we were on our way. Finally, a break, some dinner, and prep for the morning.
Pokemon Go!
To end our day and enjoy our last moments of normalcy with James we decided to go for a walk around campus. We caught all kinds of Pokemon in Pokemon Go!, helped some university students find a squirttle, took some pictures and just had fun. It was a great way to end a stressful day. Sometimes I like to pretend that I know what I'm doing with a camera! lol.
After we'd caught about a million zubats we headed back to the hotel so James could have his first two antiseptic baths and then go to bed. Now, with our bags packed, it's time for us to go to bed. The thought of tomorrow still scares me but we've done it before and we'll do it again. Please keep us in your prayers.