My New Life

The last two days had been something of a blur.  I felt like I did nothing but sleep.  Did labs, and cortisol levels were very low.  So, endocrinology got involved and figured it was best I get on a low dose of steroids.  So, today I'm more awake no nausea and got up for a walk!  Thank goodness I got switched to a regular diet so I have a few more options for meals.  But I do understand why they have you start on soft and bite sized.  I think it would be very hard to swallow hard foods.  Yesterday I got some visitors ❤️.  Mom, Dad and Jen came.  And, so did my friend Chelsea and her daughter!  It's a nice break in the day.     I have the absolute best nurses and aids here.   Drs do rounds a couple times a day.  This morning they said hopefully the cortisol levels won't keep me here any longer than the planned discharge Tuesday.  So, fingers crossed it stays that day!  The boys are enjoying som...

Today hasn't been exciting.  I've pretty much just rested all day long.  Tuesday the plan for discharge is to leave the hospital, and Benji will pick me up at the door, then we will head straight to the clinic, a block up the road.  There, Dr. Gray will scope me to make sure all is looking good and she will then take the drain and chin-stitch out.  Thank goodness!!!  We did find out today that they also took out the Hyoid bone, or part of it.  I was having quite a bit of pain in one particular spot, and thought it was an odd spot but, that is why.  Not because it's where my trach was, but because of the Hyoid bone. My blood pressure has been running a little low here and there, so Dr. Gray contacted endocrinology to check in on my adrenal insufficiency.  My labs came back on the low side, so we will see tomorrow what they decide.   Fingers crossed that tomorrow I get on a regular diet.  Hallelujah...

Today has seemed like kind of a lazy day for me.  I feel like it was a day I needed to rest, and that's okay.   I was up in my chair most of the day, but dozed off and on.  I didy walks, and took one pretty hard nap in bed.   I feel like I've been through so many of the dilation/tube exchange surgeries that I should just be able to pop right up after this one as well.  I often need to remind myself that this was a WAY more extreme surgery lol.  And, well I guess Im not as young as I once was.  Today when I did one of my laps, I remembered showing my mom the first time I could walk around the nurses station after I got my trach put in.  I could walk all the way around the desk and I could breathe, it was like it was the best thing in the whole world.  Then, today I thought about that and I was like hey, I'm doing it now with NO trach and I can still breathe!  It was an amazing thing to remember.  I shared a picture with the...

I figured I would update here and post the link on Facebook.  That way if people want to read, they can just click the link...if not, they can just scroll on by.  And if I forget something I can a little more easily look back through this.   Today was another great day!  It's Wednesday, surgery was Monday.  Dr. Gray did stop in to see me in-between surgeries she had going on today.  I asked her how many "C" rings she took out, and she said she honestly couldn't tell me because there was so much stenosis.  So she said she took out about 5cm.  Wow, that's quite a bit when you look at it lol.  She also said how I'm doing really, really well.  She wants to see me in clinic to scope me on Tuesday with possible discharge after that!  I feel so incredibly grateful!!!   I went for a lot of walks today.  Yesterday my step count on my phone was like 835, today was over 3,000!  I'm still having ...

I know I posted on Facebook what happened with this last surgery, but I know I haven't posted on here in quite a long time.  And, since it's (fingers crossed) nearing the end of this particular journey in my life, I thought I'd hop on 😁.   I hady last surgery on Wednesday Jan 8th, where we chose to put the "other type" of trach back in.  I guess when she asked me about it, it was all so fast I didn't have time to process much.  I know this type needs to be in for a little bit before she does the resection surgery, so if we are going through with this soon, hell yes I'll take whatever type you want to give me! The last time we had this type of trach in for a trial, it was very short lived.  It didn't sit right in me, it hurt, I had a very hard time breathing, so she put the T-tube back in.  This time, after so far it's only had the "pain" from surgery.  And whatever it is I'm pushing through it because I want this dang thing out!  I...

It's been a really long last couple of weeks.  I went and saw the ENT that is filling in for Dr. Gray while she is on Maternity leave.  She had a baby boy, all is well but gosh I wish she had been back for my appointment to clean my trach out.  The fill in Dr was an older Dr who has been in on my surgeries before because, well I'm a fun case of course.  He scoped my trach, and said "wow, you take really really good care of your trach!" Yes, yes I do.  I'm kind of OCD about it.  I've seen really bad ones at work and in clinicals 😂😂.  He said, just some minor daily cleaning and it looks great!  Well, what he didn't know was that we had just done deep cleaning at work, and I was literally on the ground dusting.  I offered to do this because I knew I was going to go and get my trach cleaned out GOOD that day 😭😭😭.  Before he left he said make sure you have an appointment scheduled with Dr. Gray for when she comes back. I sure do!  S...