Tuesday, July 12

It’s been one month since Walker’s open-heart surgery and I currently find myself sitting in the same surgical waiting room, staring at the same surgical board, anxiously looking up every time someone walks into the room to see if it’s Walker’s surgeon.

When it finally is his surgeon, my stomach will drop for a minute as I make eye contact and wait for him to give some sort of affirmation from across the room (which is hard through a mask), that Walker is okay. Then he will bring me into a little private room off the main waiting room, where he will sit me down and explain how the procedure went. This will be my eighth time in eight and a half months sitting down on a chair in that little room. That little room and this big waiting room feel far too familiar.

I will be honest, the first couple weeks post-heart surgery were hard. Walker was not himself, and we had to adjust to a new normal for him-- one with much more fussiness, crying, and difficulty sleeping. We didn’t know if he was in pain from his surgery, if there was some sort of surgical complication happening, if there was something wrong with his GJ tube, if he had another stricture in his esophagus, or if he was just doing regular baby things. When Walker cries and acts out of the ordinary, it’s hard not to jump to worst-case scenarios and assume something must be wrong. My confidence often goes out the window in those moments and I question and doubt my own instincts. I feel afraid I might be missing something, but at the same time have anxiety over the SickKids ER and want to avoid it at all costs.

I did end up taking him to the ER to be checked once, and Andrew had to make an extra trip back to SickKids the day after his post-op appointment because of a complication with his incision, but since then things have settled down. We have learned Walker’s new cues and adjusted to his new normal and I am starting to feel much more confident again. A month post-op, and we are starting to see more and more of the Walker we know.

After today’s dilation, I feel like I can finally let out a big breath I have been holding for over a month. We were worried after Walker’s heart surgery that he was badly strictured again, and that was why he was so upset. We had no way of knowing what was going on in his esophagus until they actually went in there, and the date they gave us for this dilation seemed way too far away. Over these last few weeks, time has dragged very slowly as we waited for today. We are so thankful it went well and there seems to be some improvement, and we are praying that Walker gets a good break from any procedures for a while now. Up to this point it has felt like one thing after another for him and we so desperately want him to have some time to just enjoy feeling well and to grow and develop.

So, what’s up next for Walker?

The surgeon today was hopeful that Walker would be able to go a bit longer this time before needing another dilation. The road to him being able to swallow and eat by mouth will be a long one. The biggest barriers for him to overcome are his severe reflux and the dysmotility of his esophagus. The first step is for us to start working on feeding him solids again, which we can hopefully try in the next few days after he has recovered from his dilation. The more he can practice swallowing, the better. If the process of learning and wanting to swallow food is slow, there is also the option of trying to give him solid feeds through the G (stomach) port on his tube. If his tummy could handle solids through his G-tube, that would mean we could give him some real puréed foods and he could start getting some of his nutrition that way. If his reflux continues to be terrible and he can’t handle any food going into his tummy, he will need to continue to be fed solely through the J (intestinal) port on his tube. This would mean he could not have “real food” but would need to continue getting his nutrition through breast milk and other fortified formulas. The reality is that it is very likely that Walker will need to be fed, at least partially, through a feeding tube for at least the next couple of years.

In terms of Walker’s heart, he will continue to be followed closely by the cardiology team at SickKids, who will determine if everything is functioning as it should or if any interventions need to take place. He does still have some small holes in his heart and they will need to keep an eye on his patch and his artificial valve. His next cardiology appointment, with an echocardiogram and ECG, is scheduled for the end of this month. Eventually, Walker will outgrow the artificial pulmonary artery in his heart and will need to get it replaced, but it’s likely that will be quite a few years down the road.

Walker has also recently started occupational and physical therapy. So far, we are working on flexibility in his hips, knees, legs, and neck, which are very stiff from all the time he has spent in a hospital bed. Once he gains some more flexibility, he will hopefully be able to improve his tummy time and sitting. He is doing a great job rolling from his back to either side and reaching for and holding toys. It is amazing to see him using his “lucky fin” to grab at toys and play, and he loves to put those little fingers in his mouth. We are excited to see the ways he will adapt and overcome his physical challenges. He amazes us every day. I wish you all could meet him in person and see how amazing he is, too.

The next couple of months hold lots of appointments for Walker, but hopefully no more procedures requiring anesthesia. He goes to the neonatal development clinic, the plastic surgery clinic (just to look at his arm and his function, not to do any type of surgery), the ophthalmology clinic, the hearing clinic, the general surgery clinic, and the complex care clinic all in the next month or so. He is also waiting for a date for a spinal MRI and a consult for his plagiocephaly (which is also the result of all the time he has spent in a hospital bed). 

Life is definitely busy, and it is far from easy, but we continue to see God’s goodness in the life of our family and this amazing little boy. Right now we don’t get to know the “why” in all of this, and maybe we never fully will, but we are learning to take one single day— sometimes even just one single hour— at a time, and trust that God is perfect in all of His ways. His strength and grace will continue to carry us through.