It was decided yesterday that Ned will need a g-tube to assist with his feedings so that he can go home pretty soon. A g-tube is basically a feeding tube that is surgically placed directly into the stomach. It just looks like a little plastic button on the baby's tummy from the outside and we'll just hook-up his feeds through that once we're at home. The benefits are that we'll be able to control his nutrition intake and get home sooner where we can continue working on his ability to feed by mouth and the g-tube will be removed when it is no longer needed. There is alway the added bonus of being able to set him to receive continuous feeds throughout the night so we can all get some much needed rest. The downside for me is, of course, another surgery! During the surgery they may also tighten the sphincter between his esophogus and stomach to held reduce reflux issues and the pulmonary docs may run a little camera down his airway to check for any narrowing places due to scar tissues since he'll be sedated. We're still waiting on the formal results of some testing today, which completely zapped Ned of all his energy, to determine what all will be done during this surgery. I'm not sure when the surgery will be performed. They had originally said it would be this Thursday; however, Dr. Adamson, who performed two of Ned's previous surgeries, said it wouldn't be on Thursday. I'm not sure if that's because he isn't in the OR on Thursdays and he wants to perform the surgery or what? We'll just see today.
I had to meet with the early childhood development people at home yesterday morning who will provide therapies to Ned to keep him on track devleopmentally once we're home. By the time I got back to Chapel Hill, Ned had already gone through a swallow test to check his refulx and he had fought them every step of the way. To say the least, the child was exhausted. I tried to wake him up to make an attempt at nursing, but he wasn't at all interested so we gave it up for the day.
Please keep this surgery in your prayers and that Ned's body will heal to a point where we can return home. Also, I am seeing God begin to perform mighty works up here amont both RMH residents and people at the hospital. It's just the beginings of some things, but I am praying that I can remain focused and alert and not get my sights set on home too quickly. I have been reminded of the disciples when they fell asleep in the Garden the night before Jesus' crucifixtion and His heart wrenching words, "could you not watch for me even for one hour". I realize that God may be wanting me to be here for His purposes and even in times when I'm tired and just burnt out with being here, the time we remain here will seem short in retrospect. But if that time could change the heart of someone or just plant a seed in someone's heart, it would be well worth all our time and suffering. I mean a little earthly inconvenience compared to an eternal life.....no comparison. Please pray that I will be able to keep all of this in perspective.
I love you all so much and I again, the gratitude that I feel for all the prayers I have received cannot be fully expressed.
Betsy, Travis, Jack & Ned