Nothing goes into the balloon port but you can access it to either inflate the balloon or deflate it. The purpose of the balloon is to hold the GJ tube in place. Yesterday, his medication port kept popping open and as a result, Jacob lost a lot of his tube feeding. Although the med port and the feeding port are different, they both connect to the same place. In other words, there is equal access to each port. So, when his tube feeding goes through his feeding port and the med port opens, the tube feeding will leak through the med port back out of the stomach.
There is no way to replace lost feedings, all we can do is try to replace the lost feeding with Pedialyte. Usually when we have a problem with the med port opening we replace the ports. However, our shipment for some odd reason didn't come on time. We got a call from the company that the order was never written down. Even after I specifically talked on the phone with the manager of the company and placed the order myself because mom was out. And I even had the manager read it back to me....but we won't go there. Nope.
The significance of all of this is since Jacob didn't get a lot of his feeding yesterday due to the constant leaks he was more dehydrated than usual. Lately, as soon as his day nurse leaves we run a full bag of Pedialyte through. But since he he was already dehydrated, he was already in trouble trouble before we could get that in. In addition, as I've mentioned before, he cannot cough like the rest of us so we have to help him cough up secretions in his lungs. When Jacob becomes dehydrated, those secretions get hard and don't come out as easily; this then causes what we call a mucus plug. These are quite dangerous as they can block the airway if not noticed in time.
I've talked a little bit about oxygen saturation and heart rate; what's ideal and what is a sign for trouble. Yesterday evening, Jacob could barely hold a sat of 93 and his heart rate was around 165 and climbing. At that point my mom was by his crib and my dad and I were fast approaching; I noticed that his nostrils were flaring (one of the sings of respiratory distress). Just by looking at him you could tell he was working really hard to breathe; he was sucking in his ribs and using every abdominal muscle to suck in air. Evidently this is just an estimate but I'd say 30 seconds after realizing he was in distress he desatted. His oxygen saturation continued to fall and reached 81. His lips turned blue and his eyes rolled back into his head. My mom, dad, and I were scrambling around getting all of these different machines to try and get him breathing again. The one thing that we rarely ever result to (it's been years) is something called an ambu bag:
If you've seen any type of medical show then you know the term "bagging." This is what they are referring to. The only difference for Jacob is that it goes on his trach and not his mouth because the trach is his main airway. We rarely have to result to this type of life-saving technique. We have certainly had our fair share of medical emergencies at home with him but they have never been quite this bad. We can usually bring him back a lot quicker than we were able to yesterday. The ambu bag essentially breathes for him. You manually have to squeeze the bag of course but that replaces the air that he can no longer take in. However since he had a mucus plug, it did no good for the ambu bag because air couldn't get past the plug. There is another technique and it's called "lavaging." When you "lavage" Jacob it's nothing more than putting a little bit of saline down his trach to moisten the secretions, which then allows someone to suction out the plug, and that is exactly what happened. We were able to suction the plug out and got him to breathe again.
But his struggle doesn't end there, this morning my parents found a problem with the balloon (mentioned above). It wasn't holding which caused it to come out and spread open his opened wound on his stomach. It had been doing so well and the dressings were staying dry but because of this obviously unexpected issue with the balloon, his hole that was healing so nicely has now reopened. For now, there are no gastric secretions leaking out on to his dressing so we count our blessings there. But that doesn't mean, like I always say, that it cannot happen. Again we sit here and wait, hoping and praying for the best. He was supposed to go back to school next week, it's been months.
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