This morning started off pretty rough. The ENT team rounds around 645, so we knew the trach change would be early. So we had a game plan. At 6, Will was to receive his oral pain medication and just before the team started to work on the trach, he was to receive a different narcotic in his IV. Well, apparently he did not actually go to sleep until 4 am, so rousing him at 6 was a challenge.
So, the team came in, IV pain meds were administered, and the smaller diameter, shorter trach was inserted in place of the first one. Everything was fine. For five minutes. The team left. Will moved in bed. I noticed that an awful lot of the tubing was visible. Hmmm...I head for the nurse. By the time I am back in the room, the tube is totally out. This is not the way it is supposed to be!
The nurses and RT arrive quickly. They reinsert it and call the ENT team. The fellow arrives and decides that a longer trach is needed. Ya think? :) There is a discussion as to which new one to choose. The diameter needs to remain the same, but it needs to be longer than the current unstable one. They finally decide, replace it again, and we are finished. A little excitement goes a long way.
And then there was tonight. Almost exactly 12 hours after this morning's fiasco, the trach is again out. Apparently Will has a significantly sized trachea, the stoma (the hole that they made for the trach to go through into the airway)is large, and the trach is small.
Needless to say, Anna, our nurse from earlier in the week, popped in and said, "So ya wanted to end the day the way you started it?" Um, it wasn't OUR plan. :)
The trach is back in. The ENT fellow arrived...again...and scoped his airway...again...and stated that there was some trauma (meaning irritation: bleeding and redness) in the airway from the irritation. The decision to remove the trach will be made in the morning.
Will is still on TPN for nutrition. He just is not taking in many calories. There is discussion on whether he will be discharged on TPN or whether he will stay inpatient til he chooses to eat. Once the trach is out, we will be moved out of our very nice spacious room to the regular neurosurgery floor. From there, the endocrine doctors will begin to follow Will's progress. Dr. T at home has sent a note to Will's physicians here, and the ICU physician wants more than a pediatrician to follow him once Will leaves her jurisdiction.
So, at the moment, we have no clue when we will be moved from ICU but anticipate it to be Monday or Tuesday. Being discharged from the hospital is not even being discussed right now, so I have no clue when we will be home. Until then, we hang out in the hospital room, I sleep at RMH, and we wonder why we are so tired. :)
We are thankful that this has been a fairly straightforward hospitalization. Progress may be slower than anticipated, but I can only imagine how slow it would have been if the full scope of the surgery had been performed. We are very grateful for cautious physicians who respect the typical instability of William's metabolic balance and are doing their utmost to avoid an epic crash.