Surgery follow-up and surprise swallow study

This morning Kinley had her scheduled follow-up visit with the surgeon who did her repair surgery. He looked Kinley over very quickly and could tell that she was doing well. He said that she was healing nicely and he would like to see her again in another 6 months. It was a pretty painless and quick appointment once we got in. We did have to wait for about an hour because the surgeon got called into the operating room for an emergency.

While we were waiting we received a call from the radiology department at Children's Mercy. There was a cancellation today and they were wondering if we were free to do Kinley's swallow study at 1:00 PM. That worked out great since we were already in the building. The surgery appointment was done around 11:15 AM, so Kevin and I went to get some lunch, stopped by the NICU to see some friends and we even got to see Kinley's nurse Katie even though she was not working in the NICU for the day. Then around 12:50 PM we headed off to radiology and were right on time for our 1:00 PM appointment!

The swallow study was very interesting. There were several people involved in the study, a speech pathologist, a couple of occupational therapists and a radiologist. Kinley sat in a chair while one of the occupational therapists fed her barium liquid and we were able to see her swallow on the monitor live. The OT started out by feeding Kinley barium that was nectar thick and room temperature. The speech pathologist said that Kinley was "penetrating" with the liquid. Penetrating means that when Kinley swallowed most of the liquid was going into her esophagus (good), but a little was spilling over into her trachea (bad since it leads to the lungs). The good news is that Kinley was able to recover and redirect the liquid that started going to the trachea back to the esophagus before any got to the lungs. When liquid swallowed does go into the lungs that is called aspiration and it is not good because it makes oxygenation harder and makes a person more prone to lung infections, like pneumonia. Since Kinley does not have as much lung tissue as a normal person we obviously want to avoid pneumonia, especially now with cold and flu season fast approaching. We want to do everything possible to keep her healthy!

After the nectar thick-room temperature barium liquid, the OT tried feeding Kinely some nectar thick-cold barium liquid. Kinely was able to swallow that liquid without any problems. The speech pathologist explained that Kinley seems to have a slight lag in her swallow which is causing the problems. The cold liquid helps because it is another sensation in her mouth that will trigger the swallow. She explained that if we keep feeding her room temp liquids Kinley doesn't pay much attention to it, but the cold liquid kind of shocks her and stimulates a swallow a little sooner.

Even though Kinley was penetrating on the nectar thick-room temperature liquid, the speech pathologist wanted to try a couple of swallows with thin (regular consistency) cold barium liquid. Kinley started to penetrate with this liquid pretty quickly, so they stopped the study.

The speech pathologist and the occupational therapists took Kevin, Kinley and I to a conference room to discuss the results of the study. Basically, we will be thickening Kinley's milk to a nectar thick consistency at least through the winter months and probably into spring. We are also supposed to try and give Kinley her bottle cold, right out of the fridge. We were told to make sure Kinley gets plenty of tummy time because that helps to strengthen muscles that help with swallowing. The speech pathologist and the OTs think Kinley will outgrow this little problem fairly soon, as long as we help her by encouraging tummy time. We also need to keep Kinley's reflux under control. What happens with reflux is that the acidic contents in the stomach come out of the stomach and up the esophagus and that acid can damage some of the nerves that help her swallow. As long as we keep Kinley's reflux meds going we should be OK and we were told the nerve damage will heal over time.

We were also told that while Kinley did not aspirate during the study, she most likely has been aspirating a little. The speech pathologist said that since Kinley was penetrating on cold-thin liquids, she most likely was aspirating some of the time on the room temp, or slightly warm thin milk that we had been feeding Kinley, especially when we were feeding her and she was getting tired. Luckily it doesn't seem to have bothered her lung function much.

The good news from the study is that Kinley will now be on thickened liquids which should make swallowing easier for her and prevent penetration and aspiration. I feel much better now that the study is done and we know for sure how to help Kinley. I had asked about a swallow study a few times when Kinley was in the NICU and was told that she didn't need one because her heart rate never got elevated when feeding and her oxygen saturation stayed the same. I can understand not wanting to expose Kinley to all that radiation if it wasn't necessary, still, in the back of my mind I thought maybe a swallowing problem was a possibility. From this incident I have learned that maybe I have a few motherly instincts (who knew?!?) and I should be a little more aggressive next time.