Disappointing news... :(

Hey everyone....

So we had our swallow study today. Here's the little man as we're getting ready to start. :)

I was so thankful that I had managed to time everything for his appt.- so that Jackson was a little hungry, but not starving and screaming....and awake enough that he could do the study. :) Always tricky. I tried to alter his schedule a wee little bit so that it would work out and it seemed to go okay. Yea! :)

Anyway....Jackson started out goofing around, he kept smiling at the O.T. He's such a little charmer. :) He finally got down to business and they started the X-ray. We started out with a thickener that was a little thinner than what we are on now, the nectar. We figured we'd progress down to normal thin liquids as we observed how Jackson handled each one.

Unfortunately, what we discovered was that Jackson, although somewhat improved from the last time (last time I believe that Jack aspirated a time or two on the nectar) didn't handle the nectar well enough in order to be able to come down on the consistency he is on now. About 50% of the time, he did what is referred to as "penetration" which means that he still had a delay in his swallow, allowing the liquid to pool in one of the two areas of concern. As Jackson swallowed, most of the liquid was going into his esophagus, but some was spilling over into his trachea, which leads to the lungs. Fortunately, he was able to trigger his swallow after a while, even as it was pooling there, and never fully aspirated into his lungs with the nectar but did progressively worse as he became tired during the study (as short as it was). This raised concerns as to how well he would tolerate the change, and possibly how well he is tolerating the level of thickener he is on now when he gets tired. We didn't even attempt the thin liquids because he was having such a tough time with the thickened liquids.

So....what does this mean? Well, because Jackson is at an increased risk this fall/winter for getting sick, and that is their huge concern, they don't want to introduce any of these changes at this point. If Jackson gets sick, clinically it is difficult to tell whether or not he is sick due to aspiration (and liquid gathering in his lungs) or what the issue is. In addition to that, if Jackson gets sick and for some reason has aspirated anything into his lungs, this creates a very serious issue. Unfortunately, this means that we definitely aren't going down on the consistency of the thickener at this point. We will still be giving it to him with the same ratio to milk and chilled, so that it gives him even more awareness that it is there and he needs to swallow.

They did say that as he continues to progress in his gross motor skills (tummy time, head control, crawling, etc.) he will probably strengthen those muscles involved in swallowing and hopefully this will help him for the next time and over the next few months. Over time, hopefully his swallow muscles will improve and he will be less likely to aspirate, which will be a sigh of relief as we enter the winter months. We probably will be having another OPM at some point in the future, but for now Jackson will probably be on some form of thickener (probably the thickest) until spring of next year.

While I am extremely disappointed, I am so thankful for Jackson and the blessing he is in our lives- I'm so thankful at all of his progress thus far in so many other areas. Joe and I are trusting that the Lord isn't surprised by this latest turn of events :) and He has allowed it for some reason. I'm thankful that we hopefully have more of an accurate representation of what Jackson is actually doing, as disappointing as it was. This will enable us to use greater wisdom in his care and feedings. Thank you for praying for him and the study today. :)

Please continue to pray for healing and strengthening for Jackson. Pray for health this fall and winter- please pray that he doesn't get sick. We don't want to live like hermits :) but we also know this is a season of time (especially the next few months with his swallowing issues) that could be critical for Jackson's health and progressing forward. Pray that we use good judgment even when it's not convenient for the safety of Jackson.

And please continue to pray for the Lord's hand on him. So far we've seen no indication of hearing loss or anything that we've been watching for that is common with ECMO babies or babies who have been intubated for long periods of time, but we are continuing to pray. We know that the Lord is in control through whatever may come.

Thanks to everyone for their prayers and encouragement. Love to all,

Melissa