Tuesday, August 30, 2011

Noah's operation

I thought I would share some of Noah's journey, since everyone has been so supportive and kind. It was a tough week - but we are very thankful for the doctors and nurses who cared for Noah. We can see a difference in him already and I finally feel that he will be ok. We have had a sense of dread hanging over us for the past three years - knowing he was walking around with a partially repaired heart. We were always waiting for the other shoe to drop. It is very hard to relax in that situation!

Tuesday August 23rd: The night before surgery
We had a hotel room booked, a 5 minute walk to the hospital. We had to be at the hospital for 6am and since we live an hour away, it was easier to just sleep 5 min's away. My mom had come to stay with Layla and I was worried about leaving her but she smiled and waved as we left the house. Pre-op, Noah couldn't eat past midnight, so we wanted to make sure he had a good dinner. Keith made a favourite meal of his and he sits down and pushes it away. Keith and I were terrified - Noah was booked for surgery at about 1pm the next day. If his last meal was lunch, rather than dinner....we were scared for the following day with a starving preschooler. Luckily Keith bought Boost (disgusting meal replacement beverage) and protein "chocolate bars". So on the ride down to the hotel Noah munched and drank. Not a lot but enough to keep us happy. We think he knew something was up and was just too nervous to eat.
Driving into Toronto was awesome - he was enthralled with the tall buildings and general bustle of the downtown core. I didn't really think our hometown was a "small town" but now that I see his reaction to Toronto, I suppose I have to face facts.
After a particularly stressful parking event which involved a very large Buick Enclave and a very tiny parking garage with minimal turning room, we arrived at our hotel which was just FILLED with children. I have never seen anything like it. They even had a check-in desk for kids where they get a toy and a book. Our room was nice with a king bed but we didn't have time to enjoy. We had to get Noah to have his bath with the special scrub brush for the OR and get him to bed! Sadly, the mixture of the strange bed and having his parents in the room with him made him wide awake! It was nearly 9:30pm before he fell asleep and hogged the bed for the rest of the night.

Wednesday August 24th: Surgery day
We left the hotel bright and early. Noah led the way with his Cars backpack filled with toys and us with a bag filled with games and toys to keep us occupied until the afternoon call for surgery. When we arrived on the floor we learned he had been moved to first case and another child had been cancelled. So we were taken to get Noah's vitals done, his weight and height and give him yet another bath. All of this went ok except when weighing him in the hall, another child (post-op) was walking and moaning down the hall past him and I think this scared him. I was never aware of this stuff when I worked as a nurse, but as a mom I was a bit angry that the weight wasn't done in his room so he wasn't scared of what was to come. Regardless, we got him weighed and then all he wanted to do was play with a train set in the playroom of the cardiac ward:

All too soon we were called to the operating room. We had to give him some medication to make him a bit loopy so he wouldn't be scared of going into the surgical suite alone. Keith carried him down and we got him to a bed just as the medication was kicking in. He kept insisting on holding James (his train from the Thomas set) but he also kept trying to watch an infomercial that was inexplicably playing in the holding area before the OR. I tried to recite his favourite bedtime stories but was way too teary to do so. He looked at me clearly at one point and I was trying so hard not to cry. I didn't want to scare him. Keith took over the story telling. After meeting the OR team, they wheeled him away (with James!). I can't tell you how terrifying it is to send off your seemingly healthy child into cardiac surgery where you know he will be on bypass. We were both very upset, but got it together after he was wheeled away and we settled into the waiting room for a long wait. We anticipated we would be seeing our surgeon around 1pm. It was now 8am.

Time passed and aside from being disgusted by the family beside us who felt that the table I had my coffee on was their personal foot stool (they had bare feet!), it went relatively quickly. Around 11 or 12 (i lost sense of time) I saw our surgeon. He brought us to the back room to tell us good and bad news. Good news: They cleared out MOST of the tissue that was blocking his outflow tract - there was some on the aortic valve that he couldn't get off without damaging the valve. His pressure gradient had gone from 120-150 down to 15. His valve no longer was leaky. He received no extra blood products (other than those needed for bypass) and he was extubated (this is a change from even his first surgery - they extubate in the OR which speeds up their discharge process by many days). Bad news: there is a tear in one of the leaflets of the aortic valve. He admitted that he thought he did it at first but upon examination saw the stress on the valve was too great and this tore it. He could have fixed it but it isn't leaking so he left it alone. This probably means another cardiac surgery down the road.....5 years or 40 years from now....we have no way to know.

The wait between knowing the surgery is over and going to see him is excruciatingly long. Luckily, we had a friend sitting with us to pass the time. Once we got to go in to see Noah, I was shocked by two things: 1) he was on no other medication other than morphine. For some reason I expected some sort of cardiac medication; 2) he looked like he did before he went into surgery. He was pink and not puffy or sick looking. he just looked like he was sleeping (minus the tubes, drains and IVs).

We were moved to a private room within minutes of seeing him because a sicker child needed his bed spot...so off we went to our own room with a nurse who was just fantastic. She really valued family-centered care and a few hours after surgery, helped Keith hold Noah, which really was amazing. As soon as he held him, his heart rate dropped and he seemed more stable.

As Noah became more and more conscious as we weaned morphine, he also became more and more hysterical. Not in a thrashing kind of way - he was just very weepy and easily set off by things. So, for example, if he didn't have his James train he would be very inconsolable. We knew we wouldn't be sleeping that night, so we chose to sleep in shifts. Keith went 9-2 and I went 2-7 back to the hotel to sleep. Since we didn't sleep the night before, we were exhausted. Sitting in a dark room with a lot of white noise is hard to stay awake in! Noah would wake on my shift and cry for his pillow or his daddy. It was very hard. Keith said his shift involved him sobbing for me and for his sippy cup. He was so thirsty but we didn't want to push it too much because the morphine made him feel ill.

Thursday August 25th: Post-op day 1
Getting through the night was ok, but getting through the next four hours until he was transferred to the cardiac ward was really tough. he remembered the train set on the ward and that is what he wanted. He wanted to get up to the unit and play. We endured hours of sobbing for that train set, or to go home, or to watch Curious George. It was very hard to see him so upset and not be able to explain properly why he had to be in pain and couldn't play.
Getting up to the cardiac ward around 11am, we got settled into our room and Noah fell asleep around 11:30. I went out to tell the  nurse practitioner admitting him to take her time as he just fell asleep and she got very confused. You see, I used to work on this very unit, and talking to her like I normally would have as a nurse threw her for a loop. It took her some time to piece it together - very amusing! As Noah slept, Keith did the same and I played look-out to ensure Noah didn't roll onto his tummy or need anything.

Hours passed and he woke up a bit happier but still determined to see that train set. So, with the NP's permission, we unhooked him from the monitors and he walked all the way there! We expected the typical "old-man post-op shuffle": the hunched-over slow walk to the play room. But Noah just got up and marched to the room. He walked normally! Even the cardiologist was shocked at his abilities. I mean, he wasn't even one day post-op!

He looks less than thrilled, but he did well playing with the trains and then asking to do puzzles.
The challenge for the day was getting him to eat/drink. He wouldn't do either...can you blame him? Except with cardiac kids their fluid intake/output is very important so I drove him mad with insisting he drink to get him to pee. It was our ticket out of there!

Night was hard this night because his Tylenol and vital signs were staggered...so every 2 hours he was woken by the nurse for one of those things. Which meant, he called out to us and we would go lie with him. Noah seemed content though. At one point the nurse came in and he was just laying there awake and agreed to have his vitals done with no complaint. That is so very Noah....

He kept desating with his oxygen levels over night, so he did need a bit of oxygen. I had a hard time with this because I kept seeing it as a set back but thanks to the very lovely Lisa, the charge nurse that night, she assured me that being only one day post-operative, this most certainly wasn't a set-back- more of an expected outcome. We spent the following day blowing bubbles with him to get those oxygen sat's back up:

Friday August 26th - Post-op day 2
Noah was told he may be able to go home at rounds. This felt CRAZY fast to me. I worked on this unit 5 years prior and I don't think I ever discharged a child this fast. But, once his drains and pacing wired were removed there was no point in sticking around. This was a very busy day: drains/pacing wire removal, chest x-ray and an echo all needed to be done. He was still desaturating with sleep so we needed to figure out that as well.

We gave morphine before the tube got pulled and it was BAD. He got very very nauseated, sweaty and fidgety. He was feeling miserable and that was evident by him curled up into the fetal position moaning while I put cold cloths on his head and Keith rubbed his back and waited for him to be sick. I insisted they give an IV med to settle his stomach and they agreed. Just as they were about to pull the tube, the nurses listened to his chest and noticed he had decreased air entry to his right lower lung. So, we had to do an x-ray first to see if that chest tube could come out or not. All day Noah had been very lethargic and not himself: "Lack of affect" as we say in the health care world. So he went in a wheelchair and watched Toopy and Binoo on the iPad as he went down to x-ray - let them do their thing and came back up for an echo. He was so quiet and still the technician kept commenting on how good he was. Once the xray was back we found out there was some mild atelectasis in his right lobe and his lungs were a bit wet - so with a dose of lasix to pee off that fluid, they pulled the drain anyway. Sadly, we had to give more morphine - which bugged me but he still had the IV meds to keep the nausea at bay. This was a hard time because pulling chest tubes and pacing wires hurts like hell. He also needed his sternal dressing removed and his IV's taken out. So we did it all at once. He is a trooper though, and did quite well with it all.

Taking off the sternal dressing though, we thought we saw some pus - bad news - so we had to watch him overnight for a fever and had a doctor come and assess it. We had to redress it just to see if it would start oozing from an infection, however, no one thought it was infected (thank goodness) so we were able to plan to leave the following morning.

Because Noah was acting off all day, we had asked that we stay the night - and shortly after requesting this, he was acting normally and playful again. This coincided with a visit from his Uncle Nik. He loved Nik and finds him hilarious so that raised his spirits. My friend, Jen & Roula, also visited, as did both my sisters and their partners. It was nice to have people to visit with.
As Noah was falling asleep, he desat'ed to 86% so we were told to take him on another walk but I was afraid he would need oxygen over night again. For some reason, one more walk did it - and he was saturating 97% all night on his own!

Saturday August 27th: Home time!
Overnight Noah did great and we knew we were going home. It was a Saturday so things move slower in the hospital. We had to wait for our Nurse Practitioner to be free to discharge us and to get the OK from the doctor on daily rounds. It took until noon till we could go home. Yet to me, this was still very early post operatively. However, the reasoning was that he would probably do better at home and get up and move more to get rid of that atelectasis. To pass time, we watched the elevators - which at Sick Kids are fun to watch because they aren't in an elevator shaft - you can see them going up and down. He kept saying he didn't want to go home because of the elevators!

Around noon we packed up, took off his dressing and went home. Layla was soooo happy to see him. She kept waving and saying "hi" as she stared at him on the couch. Noah was happy to and shared his snack with her:

Every day Noah is getting better and better. We learned quickly that we have to stay on top of his pain meds - advil and tylenol...that's all he gets! He must feel great because he keeps doing more (physically) than he should be doing - and then he pays for it around bedtime when he gets upset with the pain. But overall I think we are both shocked at his resilience.

Thursday, August 11, 2011

2 week countdown

Noah's surgery is in 2 weeks. It is coming way too fast for my liking. Next week he has his very long pre-operative clinic day (x-rays, blood work, child life, surgeon) and then he is being pulled from school to keep him as healthy as we can.

So I thought I would just post on how we are doing: On the whole we are actually functioning ok. After the initial shock wore off, I think we just fell back into our normal day-to-day rhythm. However, that said, we also have moments of grief overtake us. I have to admit I get very sad when I wonder why Noah has to endure such things. I also wonder why kids have to be sick ever...doesn't seem very fair to me.

We bought Noah a book about staying in the hospital. He likes to read it and he asks us lots of questions about the hospital but overall he is quite oblivious to what is going on. I do, however think he senses "something" is going on - as he is more clingy to us.

Today Keith booked our hotel room close to the hospital so we don't have to wake up super early to get down there. For some reason, hearing of the booking made it seem real and I became a blubbering mess. I cried so much that I can't leave my office now or I will draw a great deal of attention due to my puffy and red eyes. I also only just realized that we won't see Layla for quite a few days and that made me equally upset (we plan to have us both by Noah's bed while he is in the ICU and then when we get to the ward take turns staying with him). She is too young to understand and I can't help but wonder if she will wonder where we are. That breaks my heart.

Tonight is DQ Miracle Treat Day - raising money for local hospitals. It feels fitting that it falls so close to Noah's operation. We will proudly buy blizzards and feed those sugary treats to our kids tonight to support a good cause. Quite frankly, when you are in our shoes, it seems like feeding sugar to children is the last thing to worry about right now...I am sure they will love it!