My New Life

Well quite a bit has happened.  Last week as most of you probably saw I had my 2nd laser/dilation and change of trach. They increased my trach from a size 5 to a size 6 and boy could I feel the difference from all the extra air!  I have attached pictures from surgery.  I was opened from being completely closed to 1cm.  More open than I have been in a very long time!  Right away when I was discharged she already had my next surgery scheduled for July 7th.  She scheduled it so soon because she didn’t want it to close completely again as it makes it much harder to open back up.  They were all so amazing at the U!  I would recommend them to anyone!  So, while I was there, I actually had to go to surgery twice because the first day they tried to do the surgery I bled too much so she wasn’t able to do it.  She called in another surgeon to come in for the next day to help and it worked! When I had my video conference with her after surgery I a...

When I posed about my ENT contacting a provider she knew, I said it was at Mayo, Rochester.  I was wrong, it was at the U of M.  So, here is what I know as of right now: She spoke to an ENT she knows personally at the U and discussed my case with him in detail.  This was his suggestion.  He suggests a tracheal resection and possible gastric bypass.  Two MAJOR surgeries.  She asked me my thoughts.  I have in the past looked up stuff on tracheal resection.  Since my area of blockage is so "thin" but all the way across (thus blocking) I would be a good candidate for this.  They would go in and literally take out that part of my trachea and reconnect the gap.  I would probably be in a C-collar for a while, and recovery will be a while, but in all the statistics that I have looked up, it has worked!  I am also in a group on Facebook for people with Idiopathic Subglotic Tracheal Stenosis, several people have had this surgery done on th...

Happy Memorial Day!  I haven't updated on here in quite a while, so I figure it is time.  So the surgeon that my ENT wanted to do my stomach surgery for my flap that isn't holding my stomach bile in doesn't take my insurance....of course with me nothing can be easy.  So she asked him for his recommendation on who to do it.  The doctor he recommended is at Marshfield Hospital, in Marshfield.  Well my ENT said she doesn't know a thing about this doctor, and wouldn't have rights at that hospital she is going to look into another option.  Because I am a complicated case (like I said, nothing can be easy with me) she wants someone she knows to do this surgery.  Her original plan was going to possibly be to have the general surgeon do my stomach surgery and while I was still under do her part on my throat (kill two birds with one stone).  She called on Thursday I believe and said she had a call into a surgeon she knows at Mayo, Rochester I believe....

So, tomorrow will be 4 months since I got my trach.  It’s seems like I’ve had it for 4 years!  On the 11th it was 8 months since I got sick and was put on the vent!  Last night I couldn’t sleep so I jumped on Facebook and went back and read all the posts from people who were/are praying for me since I got sick!  Wow!  I have an army!  Now, during this pandemic my surgeries are on hold :(. And yes, I thought selfishly for a couple of days and thought to myself  “this needs to go away so I can have my surgeries!”  Well, a couple days later I had a little coming to Jesus talk with myself.  I have an airway, I can breathe, I tested negative for carona.  I wasn’t getting out of pajamas, I wasn’t putting on makeup or even combing my hair.  I was sick of gaining weight being on the Prednisone because I’m supposed to be loosing weight, so like the terrible patient I can be I quit taking it.  I figured well I’m completely closed already...

Well, today is one week post op for me!  Yay!  I feel great!!!!  I have a voice, I can smell, I can blow on my food to cool it off!  I have been going for daily walks, each day going further and further.  You may wonder if I am worried with all of this Carona Virus stuff.  No, I’m not.  I definitely am one of those people at high risk but, I’m not scared.  I’m being very careful.  I’m not going to any stores or really out in public.  The only place I go is for walks outside:). And, now that I have a voice again I’m able to read with Jack!!  What I worry about is all our local small businesses!  If you are able to, please get to go orders!  Homeschooling, well this is another fun subject. Lol.  Jack who LOVES school I thought would be excited to do homework. Well you know those memes you see on Facebook about homeschooling and your student is expelled or in detention lol, I can relate haha.  It will get better and...

Well I’m finally back at mom and dads!  I had my laser and dilation and steroid injection surgery yesterday. Surgery time took double than what it was supposed to, around 4 hours instead of 2.  I was 100% closed when she went in, as we saw on the CT scan done.  She was able to make a 6mm hole opened up.  When she started, she put an NG tube in and BAM the stomach bile started flowing and flowed all through the surgery.  There shouldn’t have been any because I didn’t eat since the night before surgery.  So, in easiest terms...there is a flap that is supposed to hold all that stomach fluid in, well mine is obviously not working.  So all this stomach bile reflux stuff  is coming up my esophagus and spilling over into my trachea creating all the scar tissue!  This she feels is the whole problem after doing the reflux probe thing down my nose about a month ago and the findings during surgery.  So, she will have me do a consult with a surgeon ...

I have been thinking a lot about what to write on here.  And, I've been trying to decide if I should even write anything at all or not.  But, oh well here it goes lol.  First, I'm going to give you an idea of what my typical day is like.  I'm not sure if people really truly know what I do on a daily basis, or if they think i'm just sitting around all day doing nothing.  So, here it goes.  At 6am my alarm goes off to do my morning nebs and tracheostomy cares.  I have 3 nebs I do in the morning.  The nebs take me about 20 minutes or so.  After my nebs I do my shaky vest, and this is 20 minutes.  Then I do my tracheostomy cares.  This I can get done pretty fast in about 15 minutes.  Then it is time for breakfast and my morning pills.  On Mondays, Wednesdays and Fridays I go to Pulmonary Rehab from 1030 to 1130.  On Tuesdays and Thursdays I go to the Wellness Center at the hospital to exercise.  My alarm goes o...