The fear of the "unknown"

There is a lot that goes into being a trach baby Pfamily.  There is equipment, monthly supplies/organizing, daily cleanings, weekly trach changing, nursing care, emergency supplies EVERYWHERE, travel equipment that goes everywhere you go and of course, suctioning secretions as often as needed.  Brody is not one that needs a lot of suctioning.  Think of it as blowing your nose.  Some people do it all day every day. Some, in the morning when they wake up.  Some, only when they are sick.  Well same goes for a trach baby, and suctioning is like "blowing his nose" and Brody falls into the "when you wake up" category.  He usually has really icky secretions in the morning when he wakes up, and thats it.  During the day, we maybe suction him once or twice, and usually NEVER in the middle of the night.



Tuesday during the day, he just wasn't himself.  He was fussy.  My mom was here for her weekly visit, and that usually involves lots of cuddle time.  When I called to check in from work, she said that he had been asleep in her arms for over an hour!! He never takes that long of a nap.  When I got home, about 2 hours later, he was ready for another nap and just cranky.  We chalked it up to teething, because he was also drooling like there was no tomorrow.  Then, later that night, he started spitting up his food.  I knew from there it was going to be a LLLLOOONNGGGGG night.  And sure enough, I got up about 3 or 4 times because I heard him having difficulty breathing through the monitor, and his secretions were horrible, every time.

Needless to say, it has not been a good 2 days.  His secretions are so think and green, his cough is horrible, and for the first time since being born, he is needing the oxygen machine at home to help him breathe.

Then it got me thinking...  What if this is the "trachea sleeve" issue.  Is this what happened to the other 12 kids that had this issue?  Is his trachea going to collapse?  Is it closing?   Is this the "unknown"?  The fear has me so worked up.  Being 1 of 13 in the world with the "trachea sleeve"  means that there is not much literature on what happens.  We have no signs to look for, other than difficulty breathing.

 Im scared.

We took him in to the doctor yesterday and his diagnosis was 1. Ear infection 2. Respiratory infection 3. Tracheitis (inflamation of the trachea).  He is on a pedialite diet, because he cant keep food down, (which means I can build my milk stash up some more...bonus for me) and like I said earlier, he is using the oxygen machine at home to help him breath. He is also getting albuterol treatments every 4 hours. His oxygen stats are ALWAYS 99-100, but they have been in the low to mid 90's, which means he is working extra hard to breathe, aka difficulty breathing!  My heart has been racing for 2 days, and Im trying to keep calm.   But the fear of the unknown is taking over, and now I am getting sick.  I went to bed at 8pm yesterday. And just feel mentally and physically run down.  All I want to do is hold my baby.  Im so sad for him.   And wish I could take his place.

I pray that this will pass quickly and that Im over thinking the situation.  But with out knowing what actually happens, the only thing left for my mind to do is wonder.

I think it may actually be time to go to Cincinnati or Chicago and see the trachea experts and get a second opinion or try to find some kind of answer!   Or, do I want to know what happens?

But for now, all I can do is pray, and give him extra love.  Lots and lots of hugs and kisses.

http://www.gofundme.com/58c7p4

Till next time,
-S