My New Life

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...

So, if you looked at my Facebook page yesterday, it was a terrible day for me.  I was down.  Wednesday I went to see my ENT because i had completely lost my voice, and my breathing was getting faster, my chest hurt and I honestly felt like shit again.  She used a scope and looked at the bottom of my trach and saw big time inflammation and terribly red right bronchial area.  So, it hadn't gotten completely to my lungs yet, but she said was the start of pneumonia.  She tried using a scope down my nose into my throat but I gagged too much.  She wanted to see if the stenosis has gotten worse and that is the reason for no voice.  So, I was started back on stronger antibiotics and steroids again.  Yesterday, I still felt horrible.  Slept most of the day and coughed and coughed.  I was pale as could be and completely run down.  Not only philysically did it take a toll on me, but also emotionally.  I felt like I couldn't be a good mom ...

Yesterday I saw the pulmonologist.  And he has added a diagnosis of bronchiectasis.  He also added 2 more nebs to my routine (that makes 5 nebs) some 4 times daily, some 3 times daily and some 2 times daily.  He also is ordering me a vest that I will wear 3 times a day that will shake me to get the secretions loose in my lungs.  So last night before going to sleep, I went to go stand up and of course my back pinches and locks up and I can't move my left leg.  Ugh.  Someday this all has to get better but today, I'm rotating ice and heat between my lower back and chest  (hurts from coughing so much) and resting.  Rest and drink water!!!! 

Well, to say I'm ready for a new year is an understatement.  I am so thankful to go into this year being able to breathe.  Although,  learning to live with a trach is NOT the easiest.  I can't talk quite yet, which is really hard.  Christmas day we had a scare.  I started coughing, a lot.  There was some bright red blood (maybe a little more than a little) that was coming out of my trach and I couldn't stop coughing and catch my breath.  Mom called 911 and thank goodness for the Cumberland Ambulance and first responders that came out.  I was greeted at the Cumberland ER with many people waiting to take care of me.  It was decided that with me having a trach and the bleeding I had to go back to sacred heart.  So, off I was on an ambulance again, the last thing I wanted on Christmas Day.  At sacred heart I was diagnosed with pneumonia.  So back on steroids and antibiotics I went.  But, the good news was there wasn't...