Monday, November 15

Walker had a good day on Friday. On Saturday he was struggling a little bit with his replogle (the tube in his nose that suctions out his esophagus). I took the train home on Saturday evening to meet Andrew and the kids for the rest of the weekend. On Sunday we did some family things and were planning to head back into the city on Monday morning, but we got a call from the hospital in the early evening.

One of Walker’s doctors called to explain that there had been some changes in Walker’s condition. Since Saturday he had been struggling with his replogle tube and on Sunday he had some episodes where his oxygen levels declined and they had to intervene to help get them back up. Despite all they were doing, they weren’t able to keep his replogle tube from blocking and his oxygen levels from dipping. They ordered a chest x-ray and found that the pulmonary edema in his lungs had gotten a bit worse again since the previous x-ray. They consulted with the cardiologist about what was the best plan of action for Walker. He ordered that Walker be started on a diuretic to try to draw the fluid out of his lungs and that his oxygen levels be kept above 90%. He also explained that because of Walker’s heart condition, he needs to be given as little extra oxygen as possible. The extra oxygen can change the way his heart is shunting (because of the large hole in his heart) and can cause too much blood to flow to his lungs, which can cause his lungs to get even more fluid in them. So, the plan was to give him the diuretic and then to use an oxygen mask on him anytime his oxygen saturation went too low. He also ordered that Walker’s replogle get flushed out every hour in order to try to stop it from blocking. When his replogle gets blocked, the secretions in his esophagus don’t come out and can aspirate into his lungs, again causing more fluid in his lungs.

Needless to say, our plans changed and we quickly packed up and headed back into the city with the kids on Sunday evening. I went to the hospital as soon as I could and spent some time holding Walker. He was doing a bit better, but his replogle continued to block and his oxygen saturations continued to dip. While I was there, they thankfully only used the oxygen mask on him once. Every other time he was able to come back up on his own.

Today the struggle with Walker’s replogle continued and his oxygen saturations continued to dip. The nurses spent a lot of time pulling his replogle out, trying to flush it clear, and putting it back in, but it continued to get blocked with really thick secretions. His nasal cavity ended up having some trauma from all the poking and prodding, which caused bleeding. In the end they decided to remove the tube from his nose and insert it through his mouth instead. This would hopefully give his little nose some time to heal and help the replogle block less often.

The good news is Walker has seemed better since they moved his replogle tube to his mouth. His tube has not been blocking as often and his oxygen saturations have not been dipping as often. He doesn’t love having the tube in his mouth, but it’s what is best for him right now. Through all of this, the nurses and doctors have continued to remark on how calm and content Walker is. He handles all of this with such resilience and he amazes me every day. I thank God for giving him such an easy-going demeanour and such strength.

Through all of these ups and downs there truly are moments of joy in our days as well. Jordynn and Easton riding up and down the escalators at the Eaton Centre a hundred times with the hugest smiles on their faces. Watching them laugh and play with daddy in the pool. Giving Walker his bath at night. Laughing with the nurses when he projectile pooped across his bed and onto me. Seeing his little face without any tubes or tape on it for the very first time. Feeling him breathe as he sleeps on my chest. God shows us His grace in these simple moments. He is good.

If you could pray for our sweet Walker, we would really appreciate that. Pray that God continues to protect and sustain his little body. Pray that the fluid in his lungs clears up. Pray that his replogle tube functions well and does not block. Pray that his oxygen saturations stay above 90% and he is able to breathe well on his own. Pray that he feels comfortable. Pray that despite all the poking and prodding, he knows our loving touch. Pray that despite all the voices he hears, he recognizes our voices and they will bring him comfort. Pray that when we can’t be there to touch him or talk to him, he knows how loved he is and feels the comfort of Jesus.