Sunday, May 29

For all the things I share about our journey with Walker, there are many, many things I don’t share. Sometimes our days are so full and my emotions are so all over the place that it feels too hard to accurately portray them. Thursday was one of those days.

I was exhausted from spending 12 hours on my own with Walker in the ER on Tuesday night and then his dilation on Wednesday. Thankfully, Andrew came to spend Wednesday night with Walker in the hospital so I could get a good night of rest at the apartment. Thursday morning, Walker’s nurse practitioner came to say that they were going to try very hard to get him in for his CT scan at 1pm, but that they were squeezing him in so they couldn’t guarantee the exact timing. This was stressful because Walker needed to be fully asleep for the scan, otherwise they would have to do it again another time with him sedated. This would have meant us coming back to SickKids on a different day just for that, and CT scans are not so easy to get a spot for. Well, I don’t know if you have ever tried to keep a baby on a nap schedule while they are being constantly woken up and bothered in the hospital, but it’s not an easy feat.

I had him down at the perfect time for his morning nap so that he would sleep at 1pm for his afternoon nap, and in walked his nurse at 10:30am all noisy and excited that they were ready for him down at X-Ray. Somehow, no one had told me he was even going for an X-ray. I was frustrated that he was woken up and that they had forgotten to tell me he was getting an X-ray done that day. But, off we went to get a chest X-ray in preparation for his heart surgery. They put Walker into this kind of hilarious contraption that was like a floating bicycle seat surrounded by a plastic, see-through tube. He had to sit on the seat with his legs hanging down and have the tube closed around his torso with his arms above his head. He looked a little terrified, but was a champ and didn’t even cry. We were back up in Walker’s room by around noon, and they immediately started getting him ready to go for his CT scan. The good news here was that it looked like his scan was actually going to happen right around 1pm as scheduled. He got wheeled back down to the exact same place he had just had his X-Ray. The CT nurse brought us to a “quiet” room where I was supposed to get Walker to sleep, and then I needed to bring him over to the CT room and transfer him to the CT table while keeping him asleep. Walker was tired, but was fussing in my arms because he likes to be put down when he’s ready for sleep. I asked the nurse if there was any way I could put him to sleep on the CT table. Normally, they never allow this because they need the CT machine for other patients and can’t waste time, but the patient who was supposed to come at that exact time had just got cancelled. She said the radiologist was willing to give me 15 minutes to get him to sleep in there, but after that I’d have to do it in the other room. I put him down on the table and got him to sleep within about 5 minutes. Honestly, he is a great little sleeper.

When they put Walker into the CT machine, he stayed asleep. About halfway through the scan though, when they put the contrast dye into him, the CT nurse said he wiggled a bit because he must have felt it go in. I was watching from behind the lead screen and couldn’t come out or hear what was going on, but could see the nurse tapping his leg and saying, “Shhhh.” Afterwards, she said she wasn’t sure if the pictures would be clear enough since he moved a tiny bit, but within a couple minutes the radiologist reported that they looked good and Walker was done. I was so relieved. Walker’s cardiac surgeons are going to use the images from the CT scan to create an exact 3D replica of his heart. Isn’t that amazing? The model will allow the surgeons to test out their plan for his surgery to ensure they can actually physically do what they are hoping to do to fix his heart.

When the CT scan was done, we were brought back up to Walker’s room. He managed to stay asleep on the ride and I was so thankful, because he was exhausted and needed a good rest. He had just had his dilation procedure the day before and was still recovering from that, and then had all this happening on top of it. It was round 2pm by this point and I hadn’t eaten lunch, so I ran out quickly to go get some food.

When I came back into the room about 30 minutes later, there were three nurses around Walker’s bed and he was crying. They had woken him up to do bloodwork. Poor kid. In the hospital, things happen when people show up to do them, with no regard for if a baby is sleeping or awake. I understand it has to be this way, but as a mom it’s hard. On Tuesday night when I was in the ER with Walker, they woke him up in the middle of the night at 2:30am to try to put an IV in him, and again at 3:30am to try a second time unsuccessfully. When we were finally up in his room (they moved us there at 5am), they woke him up again at 7am and poked him three more times to get an IV in before they were finally successful. It’s extremely difficult to get an IV in him, and he screams and screams every time. I dread it every time I know he needs one because it breaks my heart. Needless to say, walking into the room to see them poking him yet again for bloodwork definitely upset me. No one wants to see their kid go through all that. It had also been a very long few days and by this point, I was just ready to go home.

Now let’s rewind back to Thursday morning, so you can understand why I felt like such a mess that day. First thing on Thursday morning, after a very stressful couple of days, the cardiology coordinator came up to Walker’s room to talk to me about his heart surgery. Since our appointment with cardiology the week before, and even earlier than that to be honest, I have had this gut feeling that things were falling through the cracks and something wasn’t right regarding Walker’s surgery. I had even told Walker’s NP the day before that I was feeling this way, and she was doing everything in her power to check that things were all on track. Well, this coordinator walked into the room that morning and told me there had been a mistake with the booking of Walker’s surgery, and he was not going to be having it on June 3 after all.

My heart sank, and to be honest I felt angry. Sometimes it feels like people in the hospital don’t realize the impact that these seemingly insignificant things have on a parent and a family. This was a day we had prayed for, waited 7 long months for, and felt so relieved had finally arrived. We had decided to keep our rental apartment after being discharged since we knew this date then already, and it was only a few weeks away at that point so we could manage it. We had arranged for family to watch our kids on that date. We had wrapped our minds around this huge, scary surgery happening for Walker on that day. It felt like this day, which was extremely important to us, was not important to them at all. It was not a good feeling.

Walker’s new surgery date is set for June 16. I have had a few days to adjust to this news now, and despite my disappointment I am trying my best to shift my perspective on it. Hopefully Walker will be even bigger and stronger by June 16. Hopefully his surgeons will have had extra time to put very careful thought and preparation into his surgery. Hopefully things will feel much more organized and I will feel more confident that nothing is being missed or rushed. Plus, it’s two extra weeks of prayers lifted for his protection and for the success of his surgery. I feel very sure that this was meant to happen, and that God’s timing is perfect. We don’t get to know the reasons right now, but we can fully trust that God is in control and that in the end it will all work out for our good. His plans are far, far better than my own.

So, the last month has been a huge whirlwind. Since Walker’s original discharge on April 26, life has not looked anything like I had expected. I had put so much hope and excitement into the big “home day.” I had longed for it and prayed for it every day for 189 days, or 27 weeks, or just over 6 months. I feel a bit naïve now, looking back on things, to have thought that once we finally made it home, we would be home for good. Of course, I realized we would be back and forth to SickKids for appointments and check-ups, I just didn’t anticipate all the other issues that would arise and send us back there.

Since originally being sent home, we have been back to SickKids for his first dilation (which required us to go to the ER and was a week-long stay), to replace his GJ tube when it popped out (that’s a story for another day), for a neonatal development appointment, a general surgery appointment, and a cardiology appointment (which included a sedated ECHO and EKG), and for his second dilatation (which unfortunately also required a trip to the ER the day before it was scheduled). This week coming up, we have a neurosurgery appointment and another general surgery appointment (thankfully these are on the same day this time), and since Walker’s heart surgery has been pushed back to June 16, he will need to go for a third dilation before then (which we don’t have a date for yet).

When I write all of these things down on “paper,” it seems impossible that we have somehow managed to get through it all, plus take care of two other little ones as well. Not only have we gotten through it all, though, we have also somehow found the time to make very special memories together as a family-- Jordynn’s birthday party, trips to the park, bike rides, an afternoon at the fair. What seems impossible to us is more than possible for God. He has sustained us. He has carried us. He has given us the strength to get through each day. And on top of all that, He has been gracious enough to give us moments of joy in the midst of it all. While this season of life is very challenging, there is beauty to be found within it.