We had quite a full day with Julie’s surgery and meeting our new music friend…
On Julie’s 3 month birthday, she celebrated with her 4th surgery. She did very well and is
sleeping comfortably. Here are the details:
Monday ended at about 4 am this morning, so we slept in fairly late. I was able to put in some time for work before going to the hospital, but we were fairly rushed getting out the door. We were pretty sure we would be late, but we didn’t get any frantic phone calls from the hospital, so I figured we had dodged a bullet.
The surgeon came by after noon. He had prepared some drawings of what he planned to do. He saw a potential problem in Julie’s x-rays after the wine tasting (swallow test) that caused him some concern. I think the other doctors saw the same thing, which is why they scheduled the upper GI. After listening to him, I realized that we absolutely needed to address this problem, so Sarah and I were finally/completely at peace with the surgery.
Then we waited, and waited, and waited, and…well you get the point. Sarah held Julie for almost five hours while we waited for the anesthesiologist to show up. Julie had the best afternoon of her life. She was so content to sleep in Momma’s lap. Sarah was very content, too. After the confusion of the last few days, it was good to just sit and chat with the staff. The hospital chaplain came by and prayed with us. The nurses’ boss dropped in, too. We joked with the nurses, RTs, the OT, and doctors in between some new arrivals and their various trials.
Just before five o’clock we learned that our operating room had only just then become available. Another surgery went 6 hours longer than planned. I think I heard that our surgeon was going to have procedures scheduled all the way until 3 in the morning, so we considered ourselves lucky when Julie was being rolled down to the surgical floor quarter after five.
Our new friend, Joe DiMarco, was flying into DFW at 6 pm, so we asked our mutual friends to pick him up until we were done with the surgery. Joe is from Haiti and is a world-class musician. (As I write this, he is singing his own songs and playing his guitar with Sarah in the other room. Wow! So, beautiful!). Joe has graciously agreed to come and train Sarah in her piano compositions. Although you may be thinking that the timing might have been better, at least, Julie is being taken care of at the hospital and Sarah can focus on music rather than on diapers. But I digress.
It turned out that Julie didn’t need the Ladd procedure that the surgeon had suspected. The x-ray “problem” is something that she will grow out of eventually. He confirmed that everything is in the right place. The g-tube is smaller than we suspected – we are grateful. The “nissen” procedure went perfectly – not too tight and not too loose. Our surgeon told us that he is probably now the senior surgeon in this part of the country because of his years of experience. He was a joy to talk to!
We saw Julie briefly before going to pick up Joe from our friends. She was knocked out from the drugs, but looked comfortable – much better than previous surgeries. Her color was good, the wounds were manageable (the surgeon literally extended the first surgery’s incision down to her belly button) and she looked fine. She had her old reliable friend – the ventilator – at her side. Oh, and she topped out this morning at 10 lbs 2 oz, so she is a big girl now. The feeding tube is gone, but she will have the breathing tubes in her mouth for a couple days.
Recovery will be fought simultaneously on several fronts: breathing, pain meds, feeding, and incisions. Julie needs to be back to the low-flow nasal cannula and 0.3 liters/minute before she comes home. She will need to be off the pain meds and have the incisions healed. The g-tube will continue to require cleaning and extra care for weeks, so we will need to learn how to do this including reinserting the tube should it come out. As for the feeding, she should be able to feed through the tube within a couple days since there was minimal trauma done to the digestive tract. I don’t have all the details straight in my mind, but 2 weeks to come home is a good guess for planning purposes.
Thanks to all of you for your prayers for Julie and her parents.
It’s been a good day.
Andy and Sarah Horn
Despite all my misgivings (then and now) the surgery went great and we had a plan to bring Julie home. Our friend came into our lives in the middle of this (poor man didn’t realize what he signed up for).