Saturday, June 2, 2012

Dear Tessie,

Dear Tessie,

I don't mind your questions at all! In fact, I like having people ask questions, especially children. A few weeks ago I was visiting teaching and the lady had her kids there. Her little boy whispered to her, "Mommy, what's wrong with her face?" The mom knows but said, "I don't know. Why don't you ask her?" I LOVED this! It allowed him to talk directly to me and to hear my explanation. We laughed together at how silly I look and I let him touch my face. He knows now that I may look different but that doesn't make me scary. And I'm so thankful to his mom for not being embarrassed and instead used this to teach her son.
Also, those of us going through these hardships have to stick together!
Here are my answers:
Q. If you were fine mentally to go to your home, why did you have to stay with your mom for so long?  A. I had all my mental faculties but I had been a patient for so long that every bit of "grown up Jodi" was gone. One therapist calls it learned helplessness. My whole identity of wife, mom, neighbor, adult, had been stripped away as I was at others mercy and had to rely on them for everything. Yes, everything. Getting "me" back was a very gradual thing.  I remember when I first spent a full day alone with my boys I felt like a little girl playing house. When I finally moved home and my in laws moved out, and it was just our family, the process had only started and is honestly still going on. Having my mom leave on her mission was a giant push in the right direction. I am sure I have been blessed by her service.

Q.   Where were you at in all aspects when you were released from the hospital or rehab or wherever you were last at? 
A. I was in an in house rehab center at the University of Utah. After too long in the ICU and then Neuro Accute, I was wheeled down to the rehab wing. While there, my peg tube came out inside my abdomen, causing sepsis and three additional surgeries. My stomach stopped working at all so I had an NG tube for a while. All of this required a three week stay in the IMCU. After I returned to Rehab, I was there for a long time, monitored closely, but three days before my release date, I aspirated after throwing up and landed back in the ICU. I went home but was VERY fragile. I had a portable suction machine (Don't you love their noise?), peg tube, my eye was still damaged so I had a patch, my voice was uncontrollable and monotone, I was still too weak to move a lot on my own, couldn't even attempt standing, and even a little cold was life threatening. After a few months I had surgery on a foot contracture. He put a "halo" contraption on my leg that had bars that hooked into three points of my bone and had smaller pins going into muscles all over my leg and foot. You should see the scars! Every day my mom had to turn each pin according to a schedule to slowly stretch my leg. It was very painful so in addition to the many many meds she was already managing, she had to administer high doses of oxicodone every few hours. I was totally non weight bearing for 3 months for that. So while I was well enough to leave the hospital, I needed around the clock care. I was still faaar from going home. :(

Q. How long did you have the trach for? At what point were you able to get a speaking valve to talk with the trach?
A. I got the trach just a couple of days after the stroke. It was a big, inflatable kind so I couldn't have a speaking valve. After a few weeks, I got it replaced (fun) with a smaller one and then I got a valve. That thing was super hard so I had to do only a few minutes more each day. I would often pull it off in my sleep. I hated it but it was just one of a million things I hated. About a week and a half before I was to be released, my therapists and Doctors had heard (or seen) enough of my complaints and finally put in a trach button. This was a really small button that kept the opening for a real trach and allow me to try out breathing on my own for a few days before doing anything permanent. That very night I coughed and it came out but none of us caught on until my trach cleaning. By then the hole had already started to close and my Doc just smiled and said to leave it. HOORAY! So I was trach free before leaving the U.

Please feel free to ask away! Others may be private about this, but I want to share it with everyone. The Lord has chosen me to show what he can do and I feel a responsibility to share!!

1 comment:

  1. Thank you again!! It really is so interesting because I understand it ALL! Not all the feelings you felt but the medical terms and situations. I can't believe reading all this how much you have endured and continue to and how well you are doing! WOW!! That is so cool about your friend letting her child ask you directly...LOVE it! I wish more parents taught their children to be so open and understanding to people's differences so they wouldn't be afraid.

    So another question from that...I hope it's not too personal. How did your children do with the changes? I'm sure now they are so used to everything but from everything from not having you there, to looking different, to strength differences?

    That is interesting about the Mickey button. Dakota has a full cap on his trach most the day. The only time he struggles breathing is when he is crying really hard he kinda closes of his airway and stops breathing through his mouth and doesn't get a lot of air. If I can get him to calm down he can catch his breath again but if not I have to pull it off. The doctors said it may be harder because the trach is in his airway so he has a little less room to breathe. He is coughing pretty strong but doesn't seem to clear it all so I have to still suction him a couple times a day. I sometimes wonder though if the trach is blocking his coughs from completely clearing because it seems to get caught right around the trach. I had no idea they could put a little button in to test it. I have wondered that because the doctors just talk about taking it right out but it worries me a little ife he isn't fully ready...I don't want him to have to go through that surgery looked very painful!! That is so cool about how yours came out and you did great!

    SO new question...if you had a suction machine when you went home but didn't have the trach...did your mom suction through your mouth and nose? How did that feel?! Yes that thing is so loud...we used to try and cover it up but now we are so used to it it doesn't seem as loud.

    So how long did you have your peg tube? Did you ever have to get vented? How did that feel? What did it feel like going in? Dakota has a you know how they are different?

    You are truly amazing for sharing...I can't thank you enough...for opening my eyes into my little boys world through you!! THANK YOU!!!