2 epis, swelling, and the TUBE IS OUT

-


 Lets start with the wins! I was able to maintain a calorie count and body weight for 10 days with feeds turned off so a few days ago I was able to have my NJ tube out!!! This has helped me so much!!! I was having mild swelling on and off the last 3 weeks in my throat as a reaction to the tube itself (thank you MCAS) and had to use my EPI PEN 2 times the day before because the swelling was affecting my ability to breathe. I was so relived when it ended up being just a few hours in the ER for that one! I was given fluids, iv steroids', and iv benedryl and thankfully sent home because they didn't want to mess with my tube without my GI approving and thankfully the next day I was given the okay to remove it. I started losing my vocal range about 2 weeks into having the tube due to swelling and tension so I am so excited to get my voice back into shape and singing as much as possible now. Now as much as it caused issues I was able to be out of the hospital and it saved me from passing out due to malnutrition so I am very grateful as well! Now I still have trouble eating all foods and some days are better than others. Thankfully Kate Farms makes several drinkable versions of formula so my doctor ordered that for me to use as needed. its great to be able to drink it myself and if its a bad day I can live on only drinking it!!! 

So it was mentioned by some that I shouldn't record my singing, or post pictures while I have the tube in because it would scare kids or makes other adults uncomfortable..... That really hurt, and really shook my confidence as I was battling through something so hard already! I will keep fighting and posting about awareness because when you get this sick you need someone to fight for you sometimes! We are all in this together! Here is a video I was encouraged to sing in (didn't matter to LBCC, thank you Skye Angulo) and the lyrics are beautiful! I hope it inspires anyone going through a hard time right now! Remember there are seasons and though some seem to go on and on longer than we would like they do change. 




Comments

Post a Comment

Popular posts from this blog

How to make a Blessing Bag

-
Image
Why? Mathew 6:3-4   But when you give to the needy, do not let your left hand know what your right hand is doing,   so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you.
Read more

My diagnosis so far in more details

-
Image
 I’ve mentioned Addison’s before but I want to go into more details on what exactly this is. My body stopped making enough of stress hormone called cortisol. Those that know know the last two years I have have to fight for my youngest in what was a never ending battle to get him medically stable. Earlier this year he had a central line and was in and out of the PICU. I find it kind of funny for all things to not work in my body is that fact it’s not making the stress hormone. I joke with my doctors that I used my life supply already!  So cortisol is something my body produces in response to physical and emotion stress on your body. Without it you can go into acres all crisis and slip into a coma and die. It’s not to be taken lightly. Things I have experienced this summer they have linked to my low cortisol levels are, nausea, rapid weight loss ( sounds great but actually miserable) hypoglycemia, hypotension, tachycardia, vommiting, abdominal pain, chest pressure, weak limbs, f...
Read more

God is like a pencil sharpener

-
While I was driving my 3rd grade son to his 2nd day of school he looked at his new sharpener and came up with what I think is a great analogy. Children can just blow your mind away with things that they say. What would your child say God is like?
Read more