Tuesday, June 14, 2016
All the craziness of the weekend and our trip to emerg. had me anxious to get to Edmonton and fix up my baby. I know they told us the odds of this working were pretty slim, but there was still a chance that it could work and quite frankly, we were all feeling pretty optimistic about everything. Of course all the nervous/excited energy kept me from sleeping but now that travel day had finally arrived I found myself madly cleaning everything in sight to try and pass the time until we went to the airport.
I like cleaning/organizing at the best of times (weird hobby, I know) but I've discovered I'm an anxious cleaner. When I'm nervous or upset, I clean. I don't get it, but hey could be a lot worse! lol.
All the craziness of the weekend and our trip to emerg. had me anxious to get to Edmonton and fix up my baby. I know they told us the odds of this working were pretty slim, but there was still a chance that it could work and quite frankly, we were all feeling pretty optimistic about everything. Of course all the nervous/excited energy kept me from sleeping but now that travel day had finally arrived I found myself madly cleaning everything in sight to try and pass the time until we went to the airport.
I like cleaning/organizing at the best of times (weird hobby, I know) but I've discovered I'm an anxious cleaner. When I'm nervous or upset, I clean. I don't get it, but hey could be a lot worse! lol.
James had already flown to and from Edmonton of course, but this was going to be my first time traveling with him. I'm very comfortable with travel, but holy crap is it ever different when you have a baby with you. First of all you have to juggle all that extra stuff. And even if you just bring the bare necessities, you still have a lot of STUFF. On top of all this you also are constantly trying to keep your baby happy and quiet to avoid dirty looks from the other passengers. I have a pretty chill baby to begin with, but you have to actively work to keep a small child happy and calm in constrained spaces for long periods of time.
Fortunately, James was wonderful. It was a lot of work of course, but I was able to keep him happy as we waited and by the time we were taxying the runway he had fallen asleep while eating and napped/ate for the entire flight. All around a good experience.
For the record, I highly recommend flying WestJet when traveling with children. They were so wonderful, and patient, and accommodating. So impressed.
Fortunately, James was wonderful. It was a lot of work of course, but I was able to keep him happy as we waited and by the time we were taxying the runway he had fallen asleep while eating and napped/ate for the entire flight. All around a good experience.
For the record, I highly recommend flying WestJet when traveling with children. They were so wonderful, and patient, and accommodating. So impressed.
Wednesday, June 15, 2016
James had slept surprisingly well considering the change in routine, location, and everything else. After a quick breakfast at Starbucks we headed to the hospital for an echocardiogram and pre-admission assessments. We started out in 4C3 for the echo and after filling out a bunch of paperwork and release forms we were in for the initial assessment. Weight, hight and vitals were checked and then we were sent to the waiting room to wait for the technician. After about 30 minutes we were taken in for the echo and A) our technician was the most patient and wonderful woman ever! She was so kind to James, even when he was making her job very difficult by squirming all over the place. B) it was the longest echo of life. She ended up capturing over 85 images and then after meeting with the doctors came back to take some more. In total this process took 2 hours to complete at which time we rushed down to pre-admission where we then sent to admitting to sign release forms before heading back to pre-admission for the rest of the process.
We met with a nurse who again took James vitals, confirmed which procedure we were having done, gave us the details of when and where we needed to be the next day, and then brought in the rest of the "crew" one by one to get all our ducks in a row. As it turned out we were again scheduled as the first procedure of the day, but since we were not being admitted prior to operation, we had to be in at 6am for yet another vitals assessment before being prepared for surgery. After giving us all the information we met with a tech from hematology who took a blood sample so they could have a matching transfusion ready to go if needed during surgery. Next was the anesthesiologist, who went over James medical history and got me to sign the release forms in the event that something happened during the procedure. And finally the surgical fellow (I have no idea if that's the proper way of describing him. I know he's a fellow and he's helping with the surgery... I'm not familiar with how the education side of things works. Feel free to enlighten me in the comments if you know!). He also got me to sign release forms and talked us through the procedure.
You know, even though you learn to handle these kinds of conversations, and you recognize that the chances of something bad happening during surgery are quite low, I don't think I'll ever REALLY get used to hearing a surgeon tell me all the possible ways my little James could die in operation. It's... eerie. Necessary of course, but eerie.
The interesting thing to come from these interviews was that the procedure we thought we were there for, wasn't actually what was happening. We had come to Edmonton knowing that there was severe narrowing of the pulmonary artery and that they were going to perform a valvuloplasty to try and dilate it. What we found out in the pre-op consultation was that yes there was narrowing, but they didn't know exactly WHERE the narrowing was in the pulmonary artery. So the heart catheter was actually being used as an exploratory procedure to actually look at what the issue was and IF it seemed feasible they would attempt the balloon dilation. We also found out that our cardiologist from Winnipeg had flown out to be part of the procedure! It had said in our initial letter that he was going to be involved but we assumed that meant in a consultation for the procedure, and not actually in the OR. It was nice to see a familiar face. And we were also excited to learn that our head surgeon was Dr. Coe. I professor at the University Hospital who is leading some very interesting research at the moment.
So with our heads full of new information, we headed back to the hotel for a very late lunch (3pm Edmonton time... which is 4pm back home) to try and unwind and get things ready for the next day. This included packing an overnight bag for myself since the ward we would be in post-op had a cot for me to stay with James over-night. Our last little bit of good news for the day was that apparently breastmilk digests very easily and quickly, which meant James didn't have to be NPO (without food) for very long. Our last feed needed to end at 3am with surgery slated to begin at 7am. Not nearly as bad as we had anticipated.
But before we called it a night we decided to go join the Running Room on 109 for their Wednesday night run to burn off some stress. We decided to run with the half marathon group which happened to be training for the Edmonton Marathon in August which I'm registered for anyway! Turns out it was hill training... 2km run, 4 hills (which were monstrously long and steep to prairie legs) and then a 2km run back. Hills aren't easy at the best of times. Add in a stroller and my goodness! My butt is still sore!
The interesting thing to come from these interviews was that the procedure we thought we were there for, wasn't actually what was happening. We had come to Edmonton knowing that there was severe narrowing of the pulmonary artery and that they were going to perform a valvuloplasty to try and dilate it. What we found out in the pre-op consultation was that yes there was narrowing, but they didn't know exactly WHERE the narrowing was in the pulmonary artery. So the heart catheter was actually being used as an exploratory procedure to actually look at what the issue was and IF it seemed feasible they would attempt the balloon dilation. We also found out that our cardiologist from Winnipeg had flown out to be part of the procedure! It had said in our initial letter that he was going to be involved but we assumed that meant in a consultation for the procedure, and not actually in the OR. It was nice to see a familiar face. And we were also excited to learn that our head surgeon was Dr. Coe. I professor at the University Hospital who is leading some very interesting research at the moment.
So with our heads full of new information, we headed back to the hotel for a very late lunch (3pm Edmonton time... which is 4pm back home) to try and unwind and get things ready for the next day. This included packing an overnight bag for myself since the ward we would be in post-op had a cot for me to stay with James over-night. Our last little bit of good news for the day was that apparently breastmilk digests very easily and quickly, which meant James didn't have to be NPO (without food) for very long. Our last feed needed to end at 3am with surgery slated to begin at 7am. Not nearly as bad as we had anticipated.
But before we called it a night we decided to go join the Running Room on 109 for their Wednesday night run to burn off some stress. We decided to run with the half marathon group which happened to be training for the Edmonton Marathon in August which I'm registered for anyway! Turns out it was hill training... 2km run, 4 hills (which were monstrously long and steep to prairie legs) and then a 2km run back. Hills aren't easy at the best of times. Add in a stroller and my goodness! My butt is still sore!
Thursday, June 16, 2016
I may not have slept well that night but my little monkey sure did. Set my alarm for 2:30am to sneak in one last dream-feed before going NPO and then cat-napped until 5am when it was time to get ready to go. We packed up and headed over to pre-admission where a nurse got him dressed in his miniature hospital gown while we waited for confirmation in the Cath Lab that they were ready for us.
When we got to the Cath Lab I was a little surprised that James was the only baby on the unit. I guess it was kind of a holding site for all heart caths, so the majority of the patients we saw were middle-aged or elderly. Of course that meant we had a flock of nurses Oooing and Awing over how adorable James is, because compared to a 70 year old man, he's pretty stinking cute. lol.
We had to wait quite a while for the surgical team to be ready, but at 7:45am we got the green light. This time I didn't just get to walk beside an incubator until we got to the doors. This time they let me carry him right into the OR and I held him as they gave him the gas to get him ready for the anesthetic. It was the strangest thing. At first he was just really calm and then he start grunting, and his eyes rolled back. Then he continued to kick and squirm for a while even though his eyes were closed, but then he was still and it was time for me to go while they put in his IV. Back at the Cath Lab I was given a "pager" (which was actually one of those vibrating coasters they give you at restaurants to let you know when your table is ready. No joke.) and told to anticipate 2 hours if it went quickly but not to panic if I still hadn't heard anything in 3-4 hours.
Waiting is always the hardest part. You don't have anywhere to be or anything to do really and even if you did you're just not in the head space to get anything done. So after breakfast in the atrium with my mom, and a quick visit with her friend Heather, I took off to wander a bit before making my way to the waiting room. I distracted myself with some journaling and pinterest to try and keep my mind from wandering too much.
Results
Finally, at 10:45am my "pager" went off. My mom had joined me about half an hour before this so together we headed back to the cath lab where we were direct to a conference room to await the surgeons report. Dr's Coe and Pepelassis came in with both good at bad news. The good news was that the surgery was uneventful, and there were no complications. They were able to get a good look at the heart and were able to better assess the situation. The bad news was that the surgery was unsuccessful. Turns out that the narrowing was in the pulmonary artery above the valve in a section that could be ballooned, but that this process was unsuccessful at dilating the artery. They also discovered that his Left Pulmonary Artery (LPA - the section of the pulmonary artery that leads to the left lung) was narrowed as well, but also appeared to be twisted. I don't know how that happens - whether he was born that way or if it happened during his initial surgery, they didn't make that clear - but it obviously restricts the flow. So, it looks like James is going to have to put on his boxing gloves because we'll be coming back to Edmonton for his second open heart surgery. When this is going to happen, we don't know yet, but they seemed to indicate that it would be soon.
After our surgeons left my mom and I began to notify the immediate family, and of course Chris, of the results. This helped to kill some of our time, but after waiting an hour I was beginning to wonder if someone had forgotten I was still waiting to see my baby! I popped over to the front desk down the hall and caught a glimpse of James in recovery and was told they were just finishing ups we still had to wait. Finally, I got to see my bloated, groggy, still heavily sedated baby. We walked him over to the ward and got settled in for what I didn't realize would be a very, very long night.
And this is where I'll stop for tonight. More to come tomorrow...