Hello all! As promised, here is an update on Mr. Colin:
We headed down to Richmond, Virginia a few weeks ago to have Colin evaluated by the team at the Pediatric Feeding Institute. This has been one of the biggest challenges for him and myself since he's come home from the hospital. It's not that he isn't interested in food, it's that he has a very severe oral aversion and is trying to protect himself. There is also a psychological aspect to it as well, so we will be working with many different people in different fields. When we went for our consultation, we met with a Nurse Practitioner, a dietitian, a psychologist, and a therapist. I'm not going to lie, it was very overwhelming. We had to answer many questions and by the time we got to the point where they observed Colin's eating habits, he was exhausted. He just sat in the high chair and cried, so the therapist and psychologist concluded that he wasn't ready to be offered actual food and that we should just be offering him a dry spoon for five minutes, three times a day. Now when we see Occupational Therapy, Colin is very interested in eating what is offered to him, and he's interested in eating at home as well. So we are doing a combination of things for now. If he doesn't seem interested in eating, we do exercises to help with his oral aversion, and when he is interested, I let him eat what he wants. We have been put on the waiting list for their day program where we will go for 6-8 weeks, we will go from 9am-2pm and they will feed him three times during that period. We will most likely stay at the Ronald McDonald House while we're down there. Actually going down for our evaluation was a little overwhelming, reality hits when you realize you will be away from home for that long, but this will be the best choice for Colin and helping him overcome his oral aversion and start eating by mouth.
Then today we had Colin's Aerodigestive appointment. Over a month ago, Colin had his hernia surgery and while he was under, his ENT doctor checked his airway and reported that all looked "fantastic". She wanted us to come into clinic as soon as possible, and that was today. We met with his pulmonary doctor, his ENT doctor, and the GI doctor and the appointment went amazingly. They are happy with his growth, with his respiratory status and they want to go ahead and do a sleep study. This entails Colin coming into the hospital overnight, they will cap off his trach, attach all sorts of electrodes and sensors, and monitor his sleep. After the study, the results will be sent to his ENT doctor and if all looks good, we will come in for an overnight stay where they will remove his trach and monitor him overnight and if all is good, send us home! The stoma (or hole in his neck) should close on its own, however, if it does not close within six months, they will have to surgically close it. This is all very exciting for us, but also very scary. We haven't known anything other than the trach, so we will have to adjust. Please pray for Colin over the next few weeks/months as he has the sleep study and, Lord willing, the decannulation. Thanks!!
Krysten
