Ironically, we were listening to this part of HP-7 on our road trip today. George gets his ear cursed off and says he is feeling "hole-y." Me, too. The trach is out, leaving a pretty sizable hole to close up on its own. It is currently covered with gauze, so not too scary looking. Both drains are out. The one on the left is fine. The one on the right went into the fistula, so it didn't close up when he pulled the drain out. Also covered with gauze. The Dr. feels the fistula will close on its own in a few weeks. So, yes, I am hole-y.
There is some concern with the gastric distress the tube feeding has been giving me. He is stopping both antibiotics and hopefully that will help. I will continue to bomb in probiotics, which probably will work better if they aren't being ambushed by the antibiotics as soon as they get in there. I also read that the pectin in banana flakes was shown to be as effective as treatment with medicine, so I put some dried banana chips in the herb grinder and made banana flakes. We'll see how that goes. I'm guessing it can't hurt. If things don't shape up in a couple of days, I have to give a "sample" to be checked for C- diff. I tested negative in the hospital, so he really doesn't think that is the issue. I hope not.
We met with the speech path and the Dynavox rep. I got to try several devices. I really like the tablet device, the T10, but typing on the touch screen is rough for me. Fortunately, I had my personal tech support with me. Kelly asked lots of good questions and the rep got their tech support on the phone to figure this out. I can get a T10, which is basically a tablet. It has pre-loaded phrases which are easy to access and will work in basic situations (going to the bank, for example). It also has whiteboard, which is the high def version of the magnadoodle. It works well for quick communication I don't necessarily need said out loud. Kind of high tech note passing. Finally, I can add on a full size keyboard, either via USB or blue tooth, for situations when speed is important to me. I can type about 80 wpm on a regular keyboard, but on the touch screen it was more like 8. Maybe a stylus would help. Maybe ever having used a touch screen would help. Did I mention our cell phones are 7 year old flip phones. I can text like a maniac on that thing...
We met with the other speech path. She was amazed by how well I am speaking. Seriously? I sound like a Wookie with a pillow over his face. But she said, "It has been a rough day. I could cry right now at how well you are doing." Clearly she has no idea how much exercise I've given my vocal cords over the years.
Healing of my neck overall is going slowly because of the radiation from five years ago. I am again amazingly thankful that they did not have to saw through my jaw. Shudder. The doctor seems confident it will heal, little by little. Well, it isn't like I have anything else to do:)
Thank you to Aura for picking Karissa up and entertaining her and seeing that she got to Talmud Torah. Thanks to Angie for picking her up and feeding her dinner. Thank you to my husband, who continues to amaze me more and more each day. Thank you for all of my friends near and far, who have given me their love. It is a precious gift. Thank you!
Wednesday, November 6, 2013
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5 comments:
Thanks for all the updates Kiara. Hearing you speak last Friday brought tears to my eyes. I can only imagine how much more you will improve and be able to say with time. Sounds like you have a wonderful husband by your side. What a blessing!
Hugs,
Tamara
Regarding typing on a tablet, you adjust and get better at it. Bob gave me an iPad for Christmas last year and I use the on screen keyboard all the time. You will soon be up to 80 wpm on it. Get it. You will love it, or course the regular keyboard is still my preference. :)
We need a full count of scars. How many do you have and yes, you need to include childhood ones.
Love you!
My favorite line: "Maybe ever having used a touch screen would help." Snort. Oh I had C-diff after I had Elizabeth. It sucked. You do not want that to be the cherry on your cake of suck. Sounds like you're doing great, if you made your speech person want to cry at your wookie noises.
Hooray!! No more trach tube. We are all amazed at how well you are doing. You just may re-write the medical books.
Counting the days until I see you and Kelly and the girls. I have always said that in a tough situation, you want Kelly there with you.He has always had the ability to calm me down better than a Valium. The guy is pretty
amazing.
See you soon.
Love & hugs
xoxoxoxo
P.S. Wookies rock!!!
And you, my dear, can best be described as a "tough cookie". You are loved and admired by all who carry the Wolf name.
See you soon.
Love & hugs
xoxoxoxo
P.S. Wookies rock!!
Those touch screens are frustrating to type on. Fine for touching icons, not so much for accurate typing. I suspect, as time moves forward, the technology will become mmore precise. Until then, glad you are looking at the keyboard accessory.
I've been silently following your saga. You have an amazing wealth of spirit and positive attitude. You have kept your sense of humor through one of the most trying times a person can ever have. Thank you for being an inspiration to all of us. And Kiara, if you need a hand with something that I could help with outside of school hours, please let me know! I would be more than happy to pitch in.
-Susan
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