Michael failed his bronch/airway totally closed m

[Michael's mom]

We could use your good vibes and positive power of prayer. Michael is the 10 month old boy on a vent. He has a trach so he can breath and needs breathing assistance at night. Recently he has been turning blue ALOT so we asked that they look above the trach. No one thought that we would see anything..perhaps a small amount of scar tissue from the tracheostomy. It turned out that his upper airway is so obstructed/occluded that the camera (the size of a piece of spaghetti) could not even go down. They're going to let him rest for a day, then put him under anesthesia and do a rigid bronchoscopy to determine what is going on and if it can be fixed. Four people had four opinions, from allergies (like a bee sting can close your throat off) to deformed/overgrown cartilage to "no clue". If you could please think of us on Friday and hope and pray that they can find what it is and fix it, we sure would appreciate it. Thanks!!! Susan

[Michael's mom]

Thank you! Here are the results of the bronchoscopy on Friday: Our prayers were answered and most of the swelling was down, so they were able to get past the voice box and vocal cords. What they found was the first ring of cartilege below the voice box was smaller in diameter than it should be, then the next two rings were totally collapsed - probably due to the tracheostomy. This is why he couldn't get any air past his vocal cords to make sounds on the passey muir valve and why he could collapse and turn blue so quickly once the trach came out. No one is sure if this is a recent thing or if he's always been that way. They call it "subglottic stenosis". They changed the diameter of his trach from a 4.0 neo to a 3.5 pediatric, which would allow the trach to "leak" air upwards, in the hopes he can get some air past to open up the rings. The good thing is that there is a fix - if they do not open on their own, we can have surgery on the throat once he turns 2 years old. There was some scar tissue - granulation - near the trach site, which was removed with laser surgery during the bronchoscopy. The malacia below the trach is moderate. It collapses to 30% of capacity when he coughs or cries, which is why he's fine off the vent during the day, but when he gets upset or sleepy, we must have him on the ventilator. We will bring him in for sleep studies in the next two months, but it looks like we're in this for a little longer than we hoped. Thank God that the swelling was not cancer or permanent deformity of the throat or anything worse! Thank God. Anyone have any success stories with subglottic stenosis for me??? Thanks, Sue

[dc-b]

Hi.
My son Jet was born with long-segment tracheal stenosis, so his whole airway was tiny, from below his voicebox all the way down to where it branches off into the lungs. The doctors said his tracheal cartilage was like a "spine," the size of the part of a pen you click to make the point go up and down. At about 5 months old, he had pericardial patch tracheoplasty, which meant that they cut his trachea vertically and patched it with pericardial tissue. Because the pericardial tissue is filmy, his airway has been floppy ever since, and he's had a Bivona hyperflex trach. He's now 3 1/2 years old, and his airway is "80% normal," according to the latest bronch. No more collapse. The ENT said he can get his trach out if he can tolerate capping. We can't seem to get the right trach, though; they don't make a trach like the one he's used to any smaller than a 3.5).

Anyway, my point in writing you is that my son was as sick as he could be--on ECMO (a heart-lung machine) for ten days, as well as on a ventilator for 5 months--the doctors at Loma LInda told me that he would never get off the vent, that he needed to be institutionalized. If they could see him now! He goes to school, he talks (even with a trach, and without a speaking valve). I have supreme confidence that he is going to get his trach out soon and safely be able to do things like swim, shower, and play in the sand.

Keep listening to your mother's instinct and know that there is life with and beyond a trach and the hospital.

My husband and I used to keep ourselves sane by imagining ourselves walking along the beach with our two kids. Now it happens. The hell of living with a child in the hospital is over, and it will be for you, too.