Zach has had some major issues this past week. It all started out with a routine visit to his pulmonologist on Tuesday. All seemed fine at that appointment, but because Zach hadn't had a brochoscope exam done in a while, the doctor wanted one done.
So, rather than waiting to do one at the hospital, Janine was able to get one scheduled at the office of Zach's ENT. During that exam, it was found that Zach had some granuloma tissue building up internally at the bottom of his trach tube. Basically scar-type tissue building up from the trach tube rubbing the inside of his trachea. Some ways to try to address the issue were discussed, and a follow up appointment was scheduled for a couple of weeks away to see if there was any change in the situation.
About 4:30 the next morning Zach's oxygen saturation monitor started sounding its alarm. When Janine and I went into Zach's room, the monitor was picking up no reading at all for Zach's oxygen level, and a minimal pulse. He wasn't breathing at all.
I began giving him breaths with the ambu-bag, and Janine suctioned his airway in case there was a mucous plug blocking it. Zach's pulse picked up a little, and his oxygen level came up into the 70's-80's. (For the uninformed - this is NOT a good sign when 100% oxygen is being forced into your lungs.)
Every 30 seconds or so I would check to see if Zach would start breathing on his own, but after a few minutes of no effort, we called rescue.
By the time they arrived, Zach was beginning to take a few week breaths. We were transported to Joe Dimaggio Children's Hospital via ambulance. Once we got to the ER, Zach was breathing on his own again.
Doctors suspected an issue with his airway, so Zach was placed on a ventilator to provide pressure to keep his airway open. This went okay for a while, then Zach stopped breathing again and had to be given breaths via an ambu-bag. After a few minutes, he started breathing and was placed on the ventilator again, this time with it actually breathing for him. (I have philosophical issues with him being on the vent in this manner, but more on that later.)
After about 10 hours in the ER, a bed was finally available in the ICU. We made a quick stop for Zach to have a MRI, and then up to the 4th floor we went. It was about 5 or so when we got up there.
Zach's ENT met us there and did another scope of his airway. In addition to the granuloma tissue, he was concerned with increased weakness in the walls of the trachea below the trach tube. (Your trachea should be rigid. Zach's is floppy, which can block off the airway. This is the reason he has a trach. The condition is called tracheomalacia if you want to look it up.)
Zach already has an extended trach tube. There isn't much more room for a longer one, so that really isn't a long term treatment option. Since we are not willing to subject him to further surgeries, the only real option at this time is to keep his airway open using air pressure provided by a ventilator.
Janine and I have decided to go ahead with this course of treatment as long as Zach is breathing on his own. We aren't willing to use the ventilator to keep him breathing.
It was a very difficult decision, but given all he has been through, and how it has affected the quality of his life we have decided the choice to remain in this world should be Zach's to make. As long as he is trying to breathe on his own, we will support his efforts, but we will not force him to breathe.
Given his physical and neurological condition, his doctors have agreed with our decision. We have signed a DNR order for Zach. He has been sent home under hospice care.
On a good note, Zach actually seems to be doing fairly well at this point. He seems comfortable and is breathing on his own. I guess that's the best we can ask for at this point.
I'll update when there is more to tell.
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