October 2, 2009

Johnny,

Mom said she came to visit you tonight and she was about to leave and said, "Johnny I'm going to go, bye" and you said "bye". Mom said well crap...I can't go now, you might say something else. So she said, "Johnny do you know who Jackie is?" and you said, "yeah". Then she said, "Johnny do you want me to tell Jackie hi for you?" and you said, "yeah". Then mom said, "Johnny, do you want me to tell Jackie you love her?" and you said, "yeah". Mom said, "what's your name?" and you said, "Joh". Mom said, "I love you!" and you said, "I looo". She said you lost interest after that.

I am so proud of you!!! You are one of the toughest people I know!!! Keep pushing Johnny!

Last night, the nurse said that your heart rate when up some so they took the plug off of your trach and gave you some oxygen. Mom told her that your heart rate tended to go up and down and that she didn't feel like it was because of the trach plug. The nurse told mom that the doctor was still planning on taking the trach out this weekend.

Jerry said that he asked you, "what do you want Johnny?" and you said, "water". Oh man! You know, that's one thing I've been wondering about...it's been so long since you had anything to drink.

Your case worker at Texas Specialty told mom that your Dr., Dr. Goff, said that he will have no problem getting you in to UT Southwest to get the pump and then they will transfer you to rehab. Mom said that she swears when she went over your benefits book that UT Southwest wasn't covered. But, when she looked them up again recently, they were there and they are covered...I told her it's God's time. He wasn't ready for you to go to UT Southwest so He took care of that, now he is : )

***Update***
You are approved to stay at Texas Specialty until 10/7. On the morning of 10/8, you will be sent to UT Southwest for the trial pump. It's the first step in getting your pump. You will stay there over night and they will make sure that it works on you. You will also be tested for infection in your blood and urine. If the trial pump works and you are found to have an infection, you will still be able to get the pump but it'll have to be after your totally infection free. If you are infection free, you are already scheduled to get the pump on 10/13. On 10/9, you will go from UT Southwest to skilled nursing until your 10/13 appointment. After you receive your pump, you will be moved straight to a rehab facility to start therapy.

As far as botox goes, the pump is first priority. You can't get both the pump and the botox at the same time because you can't have anesthetic and botox at the same time so you'll get the pump first and within days, you'll get botox.

***specific prayers for Johnny***

It is so important that Johnny stays infection free.
Please pray that Johnny stays infection free, that he tolerates the pump during the trial and that he has a successful surgery while the pump is being installed. Pray that the pump is all that it promises. Johnny has come so far and I know that it's because of your continued faithful prayers. Johnny's family can't thank you enough for lifting him up!

Love you Johnny! xo Jen