Surgeries and Singings

Well, I'm sitting here in the hospital room watching Avery who has sat up for the first time today. He had his surgery Tuesday; both procedures went very well. He now no longer has a tube in his nose, which is great. They placed a g tube in his stomach. There are several techniques to placing one, apparently, but due to Avery's esophageal issues, his was done laparoscopically. They also removed his central lines and placed a mediport on the other side of his chest just below where his last port was. So the poor kid has four different incisions on his belly and chest. Needless to say, he has been lying very still. He uses his abdominal muscles to compensate for his weaker arms and legs, and he realized very quickly that being still feels best.

Now we just have to stay here another day or so to get antibiotics since he is at risk for infection. With this hurdle behind us, our next step will be getting home. We're hoping that the next couple weeks will go smoothly so we can keep that June 5th date.

My mind has starting scrambling to all the things I need/want to do in preparation for bringing Avery home. I've slowly started packing up some of our things at the RMH; we sure have accumulated a lot of stuff there in 7 months! I bought a waterproof pad for Avery's mattress since tube feeding has proven to be messy at times and ordered him a new car seat since he has officially outgrown the one we brought him here in, but he still needs more support than a booster provides. I'm planning to clean the carpets in his room and buy an extra long bed rail for his bed so we don't end up with any more fractures in his osteoporotic bones. The list goes on and on: disinfect all surfaces, change furnace filter and clean air returns, replace my living room rug that he likes to sit on, make room for all of his medical supplies, etc... I'm excited and nervous at the same time. It's been so long since we have all been together that I worry we won't know how to function as a family again. I'm sure it will take some adjusting, but we will eventually find our new "normal."


Last night, I went to Bryson's Spring Concert at school. He was so excited and did so well! As he and the other few hundred kids were walking down the aisle toward the stage, he stopped and said, "High five, Mom!". Then he sang so seriously, doing all the hand motions that went along with the songs. He looked at me after each song to make sure I was clapping, because he gave me orders to do so, and at one point during a song, he gave me the thumbs up. As I watched him, I got a little teary eyed. He seems so grown up sometimes, but as I watched him clap his hands, point his fingers, and do all the other hand motions, he looked so small up on that big stage. Some kids were talking and pushing, a couple were crying, but he was enjoying every moment.

As I was lying on this vinyl couch last night attempting to sleep, I was thinking about what Paul said: For I have learned in whatsoever state I am, therewith to be content (Phil. 4:11). You know, that's pretty easy to say when things are going well in life, but when you consider that Paul had been shipwrecked, imprisoned, beaten, plagued with a thorn in the flesh, and who knows what else, that's an impressive attitude. I have definitely struggled with being content with recent trials. I'm so thankful for God's grace and strength, which is truly the only explanation for how I have survived the last 7.5 months. I'm so looking forward to the future!

Love to you all,
Bethany