Home again, Home again...

I am very happy to report that I am typing this from our living room and not from a room on 6 or 7 Children's. Clark did a fantastic job on the ride up yesterday morning, especially considering she wasn't allowed to eat in preparation for the Upper GI. She was actually asleep when we got there and we had to wake her up to start the x-rays. Fortunately, the study showed no obstruction in the esphogus and that the barium was passing through the Nissen site correctly, so that was good news. If either of these had been the case, she would have had to have some level of corrective surgery. One of the residents did the study, (one we hadn't seen before), but Dr. Bidgood saw our names on the list and came in to visit and give us his take. I mention this because he is one of the neatest people we have met at UNC, although we have met many great people there. He is an extrememly accomplished radiological doctor, but also has a Doctorate in Divinity from Duke. Because of this, when he is taking to us about the medical findings of the many different studies Clark has had, we also get a mini-sermon. He has the most calming, reverent spirit and voice. The only way I know how to explain it is that it is almost like having Mr. Rogers as your doctor. Anyway, we always love seeing Dr. Bidgood because it instantaneously puts us at ease, reminds us of God's presence and brings us down from any level of heightened anxiety.
After the Upper GI, we stayed in radiology to get a modified swallow study with Leah, one of the speech/feeding therapists. We had not had one of these before, so we weren't really sure what to expect. The x-ray tech began to "transformer" the room as we waited, and when Leah arrived, we learned that Clark was going to be sitting in a small chair and that she would feed her a bottle and some cereal and applesauce and that we would all watch this go down from the side via x-ray. We were a little taken aback because Clark has not had any solid foods up until this point, and solids can be a scary thing for EA/TEF kids, so we didn't know what to expect. Sure enough, though, Leah started to feed her, and , although Clark gave her some funny looks, she went right to eating. After a couple bites, though, she started coughing some, so Leah stopped with the solids and started giving her the bottle instead. I have to say that it is quite surreal to see the food travel through your child's complete digestive system, but is also a great sight to see. I regret that I didn't take pictures, as I have pictures of the other two girls as they ate their first solids, but I guess maybe we will "pretend" later that we gave her her first solids at home. We won't tell her if you won't! ;)
After the study. Leah basically explained that, although Clark has every reason in the world to have severe feeding problems, she has very little physical problems with getting food down. There was a small amount of pooling of her formula in the esophogus just above the suture site where it was reconnected, but after a few seconds, it would go on it's way. She explained that this could be causing some of the issues with the coughing, especially is she was drinking her bottle in more of a lying position, as the pooled formula may be reentering the throat before it has time to go all the way down and her cough keeps it from aspirating into her lungs. Even so, she felt like her reaction to the feeding was more severe than the physical symptoms {imagine that! One of our kids overdramatizing!?! No way! ;)} and that she could be experiencing some true neurological reactions that makes the pain seem way worse than it is in her mind. She explained that this happens to kids who have had multiple GI surgeries very early in life, as their nervous system in these areas are "tampered with" before they have even finished developing, so they sometimes experience "mixed signals". We will just have to keep an eye on her level of discomfort while feeding to see if her reactions improve.
We then went to see Lynn, on of the Peds surgery NPs, Christi, one of the dieticians, and had a quick chat with Dr. Champion, her pulmonary doctor. The plan, for now, is to continue to feed her through her g-tube for most of her feedings. We will attempt one bottle feed a day so that she doesn't lose her oral skills for feeding. At night, she will be continuosly fed through a feeding pump. The hope is that these will give her upper GI area a break and that this will help her to eat more comfortably later. The biggest fear is that she will begin to completely refuse food and we don't want that to happen. We want to make sure eating is a good experience so she will want to keep doing it.
The big girls were so glad that we were back home and we had family movie time last night (although Mommy watched her eyelids through some of it). This morning, we are waiting for the medical supply company to bring and train us to use her pump and marveling at our to-do list that we made on Monday, and at how little we have actually accomplished, although it's FRIDAY! AHHHHH! Even so, we are SO glad to be back home, to be able to continue our way down said list, and to start 2012 in a "happy place".