Today is our third wedding anniversary, and while we would have loved to have had Elias' first full day home today, things just did not work out for that to happen. Tonight, we will actually be doing a nurse interview at the hospital then spending some family time together. We got official word today from the case manager that as long as Elias can conquer the Heat Moisture Exchanger (HME) for a minimum of four hours we are targeted for Tuesday October 14th for the car ride home!!! An HME is a humidifying filter that fits onto the end of the trach tube (there are photos of his first trial in yesterday's photo post). It helps keep the secretions thin and have the ability to be more mobile around the house and for doctor trips. Up until today Elias had been doing fair with this. The first day was 30 minutes with oxygen flow going through and yesterday he did an hour without oxygen flow. He did not seem to be too bothered, until today. Today he only lasted for about 15 minutes and began to lose his color, but not quite turning blue. His nurse quickly took it off and put his trach collar back on and he quickly recovered. They are talking about trying again later this evening after he wakes from his nap. Hopefully, it was just a fluke because Elias must be able to tolerate this HME in order to go home. Otherwise, he will remain hospitalized until he can. That was slightly disappointing to hear, particularly today. We will attempt to remain focused and positive remembering that everything has happened for good reason.
As for the good ole G-tube, well nothing would surprise us at this point. Of course after three consecutive days of significant leakage, it just stopped again, back to nothing. AMAZING!! There is absolutely no rhyme or reason to how this thing functions...it is a creature with a mind of it's own. So of course that stalls any thoughts on what next. We are just waiting for tomorrow or Friday to watch it come pouring out again. We pray we are wrong, but do not be surprised.
One of the reasons for such a brief update yesterday was our complete and overwhelming feeling of anger. We have never lost it, until yesterday...and even then we managed to reign in the wrath of mom and dad. When we arrived yesterday Elias had one of our least favorite nurses. She is competent, but in our opinion takes short-cuts too often. Elias was in his crib with his boppy pillows creating a "chair" for him to sit up and watch some Baby Einstein videos. He was attempting to push his legs to lift him out. The video was no longer running, but the television was on with static (makes you wonder how long the video had ended). He was obviously upset his stimulation had ended and was trying to get out of his get-up she created. That wasn't even the part that made us angry, we were not happy about it, but what dad saw next sent us through the roof. Dad asks the nurse, "what is this red stuff in his trach tube?" It was dried blood! She told us the respiratory therapist went down too deep. This was more than just a little blood, there was a significant amount in the suction tube as well! There is also a sign beside Elias' bed that says do not go any further than "5" on the catheter, as well as on literally taped to his bed. We spoke with the resident, and showed it to her. Thankfully, there was no more reported in his secretions, but this is one of the things we saw just before Elias got his respiratory infection. We were less than pleased and made it a point to make everyone aware of our displeasure even into today. Our blood was boiling! Otherwise Elias is doing better.
Again we are not getting our hopes up for discharge next Tuesday just yet...cautiously optimistic so we do not get disappointed. We will keep you updated!!