John's Heart Surgery Diary:
John originally was to have his surgery in Toronto, Ontario. But due to the SARS concern, his - and others, surgery was cancelled.
We did get the chance to have the surgery done in Edmonton, Alberta at the Stollery Children's Hospital - as it turned out, a week earlier than our original surgery date in Toronto. We decided to take the earlier date, otherwise, it may have been in the late fall before John could have his surgery. This wouldn't be too good - Wendy may have been back to work at that time and would have to take a good month off of work (2 weeks for the surgery, and at least 2 weeks after we got back home to give John a chance to heal), and also - after 6 months of age, a Tet baby's health begins to deteriate.
Below, is the diary as written by Wendy. I do have several photos of John before, and after the surgery. Some of these photos may be found disturbing by some, which is why I placed them in a different location other than the Friends and Family gallery.
If photos of a baby with lots of tubes and machines hooked up to him disturb you, don't look at them! I am posting them to maybe help some people that may have to go thru this with their baby. To give them a chance to see beforehand, what they may see with their own baby after his or her surgery. Maybe they won't freak out so much out when they see their own baby, after seeing John's photos. It still may be hard to see your own child with lots of tubes and machines hooked up to him/her, but I'm hoping that seeing photos of John like this will help de-sensitize you some, to allow you to cope better when seeing your own child for the first time after he/she returns from the OR.
Below, is what Wendy wrote in a diary to help us remember what happened. After you can check out Johns Surgery Photos gallery for the photos.
John's Heart Journey:
John was scheduled for Tetralogy of Fallot repair on Apr. 17/03 at Toronto's Hospital for Sick Children. We were all set to go when a mysterious flu-like illness called SARS appeared in the Toronto area. The illness was spread from a passenger travelling from China where the illness originated. Elective surgeries were cancelled, so needless to say, Toronto was not a possibility. Due to back-logs in the surgery schedule, the surgical co-ordinator in Winnipeg offered us a booking in Edmonton instead. We quickly accepted because we understood that Tetralogy of Fallot patients generally did very well up to about six months and then their hearts began to have more problems.
Lea and Garry (the social worker in Winnipeg) booked us for Tetralogy repair on Apr. 11 at the University of Alberta's Stollery Children's Hospital.
Apr. 9/03 We left home at about 6:45 a.m. for our drive to Winnipeg. John slept all the way to Kenora. We stopped for a snack at McDonald's restaurant. John was happy and doing his usual flirting with the staff and patrons.
When we tried to put him back into his car seat, he quickly became very fussy and then worked into crying for about 40 minutes. It didn't help that the sunshine was glaring in his eyes and I worked hard to shield him. He finally fell asleep again.
We had lunch at Taco Bell when we arrived in Winnipeg, where John spent time banging on the table.
Off we went to Variety Children's Heart Centre where we met up with my mom. She amused John while Derek and I viewed a movie about Edmonton as well as going through a photo album of what to expect. John smiled and flirted with everyone while they measured his pulse-ox. He especially enjoyed ripping the paper on the examination table.
John's fun ended when he had to have a chest x-ray across the street at the Children's Hospital. He screamed bloody murder as they restrained him in the device for the x-ray. It looked like a bike seat with plastic shields designed to hold his hands/arms still above his head. I quickly worked to soothe him and he finally took his "soo-soo" (soother). I walked him about 2 blocks to where the car was parked and then off to the airport.
We took West Jet to Edmonton. John was not bothered at all with ear pain on the flight, however, the changing pressures in the plane caused my tooth that was on the verge of a root canal to flair up (ouch). The stewardess loved John and he was relatively quiet and even had a bit of a sleep.
We arrived at about 5:30 and got our luggage. We took the Sky Shuttle to our hotel (Campus Tower Suites) and settled in. John had a good night. We grabbed take-out from Wendy's.
Apr. 10/03 Today was John's pre-admission clinic day. We arrived at 8:00 a.m. to where John had an echocardiogram. The technician was very good with John and he did not have to be sedated. Luckily she had the right video to play for him (Baby Van Gogh) and he lit up when it started playing in the overhead T.V.
He then had an ECG and tried to rip off the wires. An overhead mobile amused him long enough for them to get the 10 seconds necessary. It was then down to the PAC clinic where we met our nurse Peggy who did a bit of an orientation and took John's vitals. He stayed asleep through the blood pressures.
We then met with Lois (Dr. Ross's nurse clinician) who examined John and answered any of our preliminary questions. She was excellent with John and took her time to speak quietly to him while she examined John in the stroller.
We then had to go for blood work and once again John screamed bloody murder. It wasn't even the needle stick that bothered him as much as me having to hold his arm still. John then cried himself to sleep in the stroller.
We then had a tour of the PICU with Pat the surgical co-ordinator. She showed us children who had the same sorts of illnesses/tubes as John would have.
We met with Dr. Ross who explained the surgery and its risks/benefits. I signed the consent forms.
It was then back to the hotel. John had to have 3 baths with a special soap to prepare him. We tried to have dinner together at Earl's Restaurant, but I left with John as he was far too wiggly and cranky. He was really missing all of the devices like the jolly jumper, exersaucer. He doesn't much like rolling around.
It's a little sad to see John's friendly nature around strangers change. He's becoming more clingy and when someone new approaches him, he now buries his head into my shoulder. I don't blame him!
Apr. 11/03 John had to fast from 7:40 a.m. with clear fluids until 9:40. Mom and I took him for about a 2 hour walk to try to distract him from his hunger.
We went to the hospital @ 11:30 a.m. and John was admitted. We then went to the PAC clinic where Cindy put EMOL cream on John's hands to numb them for the IV. He once again screamed bloody murder because I had to hold his hands still. They even wrapped gauze on them to prevent John from getting the cream off.
Luckily they had a T.V. and VCR and we played Baby Mozart and Baby Newton. John was an extremely good baby through all of this waiting. I would have expected him to scream from being so hungry and thirsty!
At about 3:00 (surgery was supposed to be at 1:40), they moved us to 5F5, a day ward as the PAC was closing. We waited there for another hour with John playing in the unit's exersaucer.
Then a nurse came in and broke the bad news to us. John's surgery was cancelled. Apparently (we learned from Dr. Ross), the ventilation system in the OR was broken. It would have increased the chance of infection. The surgery was postponed until Sunday at 8a.m. I cried at Dr. Ross and poor baby John starved all day for nothing. I immediately asked the nurse for some formula. John drank about 12 oz and ate a bunch of solid food too!
Apr. 12/03 We took a trip to West Edmonton Mall with Eric, Derek's boss. A big place - very crowded. John liked looking at the (over priced) puppies in the pet store. Mom and I felt like slaves toting away the baby, his car seat, my pack sack etc. John quickly got very cranky, although enjoyed sitting by the fountain.
I had a big long cry at night with the stress of anticipating yet another long day of anxiety and waiting. Apr. 13/03 We were very surprised that John didn't wake up for a bottle before midnight. Poor guy got ripped off! He was so thirsty and trying to swallow - nothing there!
When we arrived at the hospital, we went to admitting and then to 5F5 again. They put on the EMOL cream again and John tried to wipe it off. They have him medazolam (spelling?) a sedative to calm him and he was one stoned baby. He kept yapping at Derek and gooing. I walked him down and put on a gown/cap. I met with the anaesthesist and John went into the OR suite. I had a short cry and then went for breakfast. I spent some time in the chapel praying and saying my rosary. Derek and I walked to Tim Horton's and then walked around the hospital. Mom and I went to a prayer service for Palm Sunday.
At about 11:45 a.m. (John went in at 8:15), Dr. Ross came out to the fish tank in the PICU waiting area. The surgery went very well. They were able to save his pulmonary valve. Dr. Ross's favourite thing to say is "'He looks good!" He later popped into the PICU with a bag of cheetoh's so Derek nick-named him "Dr. Cheetohs" (cus when ever I saw him eating, it was junkfood).
John came rolling by 30 minutes later. At first view of John in the PICU, I shed a few tears of relief and pity for my poor baby hooked up with all those tubes. The PICU is a busy place with the nurse continually writing and adminstering something.
I spent the afternoon at the dental clinic. The tooth needs a root canal. They gave me some penicillan and tylenol 3. Derek and I had a very nice Italian dinner at Fiore's to celebrate. (the surgery not my tooth!)
Apr. 14/03 I was up very early and headed to the hospital for 7:30 a.m. John had a good night. He's on less paralyzing drugs and is moving around some. Initially he had some bleeding from the chest tube but that quickly resolved itself. By afternoon he was kicking and pulling at tubes. He had to have hand restraints. They gave him more sedation. The surgery resident took out John's chest tube and John made it bleed when he was thrashing. John's temp was up to 38.5. The nurse (Rita) was very good and nice. He's going to need some major comforting as they wean him from the ventilator. We had an excellent Chinese dinner at the Mandarin.
Apr. 15/03 John's done very well. They extubated (Wendy likes big words) him at about 4:30 (took him all day to come off the sedation and be awake enough). The tube was wedged in very tightly. He was very agitated as they let his morphine wear off. It was hard to see him flailing around and so confused. He had that "scared animal" look in his eyes. I got to hold him and he settled but got upset again when I went home.
Apr. 16/03 John was initially very upset (HUNGRY). I argued with the intensivist Dr. Joffe to bottle feed John instead of dropping an NG tube. They finally let me, and John took 5 1/2 oz. I also got them to up his codeine. He was very settled when I snuggled him. He proved the doctor wrong by eating fine all day long. Continuing to improve although still in pain. They kept giving him the codeine all day.
Apr. 17/03 According to the nurses, John had a big scream at 3 a.m. I personally think it's gas/needs a poop. John was moved to the children's cardiac ward, an excellent facility although less nursing care! It's pretty empty here because they're working hard at discharging people for Easter. John keeps trying to claw out his oxygen tube. His nurse isn't very busy, in fact, John's her only patient. John had a good night, but I didn't sleep much because they moved in a roomate at about midnight. The nurse was very noisy and turned on the overhead light! John only needed pain meds (codeine) once.
Apr. 18/03 John surprised me by eating a few solids today. He's even offering a few smiles., They took him off oxygen and now he gets to go in the stroller on the 4th floor. Unfortunately, they did a blood test and chest x-ray and made John very upset. When they were trying to flush out his IV, they lost the line and said they'd have to re-start it. I refused because the only reason they wanted to have it in is because of his pacing wires. They moved my roomate out because John was so upset. He made himself throw up and finally with the help of gravol he fell alsleep. The nurse was way too loud and scared John when he was eating in Grandma's arms.
Apr. 19/03 John had another chest x-ray in the torture chamber and blood work. It took the technician about 5 stabs to get a vein! Then Dr. Kantoch came in to take out the pacing wires. This looked very painful and John broke out into a cold sweat. He cried for a very long time afterwards. We got discharged from the hospital at about 2:30
Apr. 20/03 Easter Sunday - John was extremely cranky and irritable. We spent all day just trying to make him somewhat happy. Thank heavens mom was able to rent a VCR to play his Baby Einstein movies.
Apr. 21/03 We headed up to the hospital for our final echocardiogram. John began to whine at first sight of the hospital. He cried very hard during his echo. there's still excess muscle on the right ventricle and narrowing of the artery, however this should not be a concern for some time (if ever). Dr. Kantoch changed John's meds from aldactacide (which he pukes up and cries everytime I give it) to lasix, which he has taken quite well since birth.
We walked around a bit in the afternoon and then Jan (mom's friend) drove us to the airport. We flew to Winnipeg. John had a major fit when I put him on the paper-lined change pad in the airport terminal. I think the paper reminded him of the paper-covered examination tables at the hospital. He also cried everytime someone looked at him. This is the saddest for me because John has always been so friendly. I had to work hard at keeping him from crying during the flight. I even resorted to making a barf-bag puppet! John had a very restless night at the hotel.
Apr. 22/03 - John woke up very irritable/cranky. He fell asleep immediately when we went in the car to Variety Heart Centre. He had his one stitch removed. He fussed some. We met a couple from Red Lake who are headed to Edmonton for the same surgery. I can safely say I don't EVER want to do this again, but am grateful that the skill/technology exists to save our baby.
All photos copyright © 2018 Derek Kennedy