So somone please tell me the reason for my daughter being in 10++ pain last night. SCREAMING, SOBBING, SHAKING, HYPERVENTALATING pain.   Since you are all such loving sensitive people, you may want to grab a kleenex before reading.....

 

As I said, she was in 10++ pain.

 

FROM. THE. WAIST. DOWN.

 

Not just the feet.  Not just from the knees down.  From the waist down.  Or technically the groin down.  She felt like someone was cutting her legs (at her groin) off with a saw.

 

Let me go back.

 

She went to the first treatment and was doing "OK" (no better, not worse).  She and I got on the freeway in our little red sports car so we could do 80 (and feel like we were going 100!).   San Bernardino is having a Route 66 Rendezvous car show this weekend.  We have seen many many cool cars driving around here.  So we drove around a little bit and decided that we would go on Sunday because Susan needed to take Sunday off.

 

Then we went back to the hotel for lunch and my mom and Sweetpea went swimming while I took a nap.  Sweetpea was due back at the clinic at 4.  We went an all seemed fine.  I got to meet "H" and her mom Chris (who live in Kenmore, the neighboring city from us at home).  Chris and I sat there and talked for about an hour.  It was so great to talk in person to someone who is going through the same stuff.  H recognized the story.  She thought many things sounded just like what she has been through.  H was waiting to see the Dr as she has been sick and was going to get another shot.

 

Then Sweetpea came out, seeming fine - or the same as she has been.  We got her in the car.  She complained about the car vibrations bothering her legs.  We only had to drive 4 miles.  We got to the hotel and she snapped at me that she needed OUT of the car now!  I got her in the wheelchair and in the room.  As soon as we got in the room she started sobbing.  Harder and harder.  I got some morphine and a muscle relaxer in her.  I was waiting for a call from Susan.  She thought Dr. Underwood would want to give her a prednisone shot or pills, but he was with H when we left so she was going to call and we'd come back since we are so close.

 

Sweetpeas pain just kept getting worse and worse.  I was holding her in my arms, trying to rub her back.  My mom was trying to rub her back.  She was screaming and squeezing hands.  This was the worst episode she'd EVER had. 

 

Susan called and said Underwood wanted to give her a shot.  At first I said there was no way I could put her back in the car.  After I hung up I realized that we could be sitting just like this for hours and that shot was a chance to lower it.  So we convinced her that we needed to get back in the car.  I called Susan back.  She sat in the back seat with my mom and screamed over every spead bump or crack in the road.  Every time I braked it hurt her.

 

We got her in the clinic, but then she was too worn out from crying and didn't have the energy to scream. 

 

The Dr gave her a shot.  Then I gave her some ativan and hydro.  She lay in the leaned back chair for awhile.  Finally she said her 10++ pain was down to a 10+ 1/2.   We got her and we were all EXHAUSTED.  and STARVING.  We had planned to eat when we got home before and now it was 2 hours later.

 

Oh, I forgot to mention that her legs are totally sensitive to touch and even the sheets hurt it touch them when she woke up yesterday morning.  When we went back to the clinic she had to keep a blanket on her legs because the air hurt so bad. 

 

Then Susan tells me that she may have to go through this a couple more times.  (sigh) 

 

 I don't know if any of us can handle going through this a couple more times!!!   I am scheduled to leave this evening but am most likely going to leave Tuesday morning now.  I thought my mom was say "No, you go home" but she was quick to take me up on my staying longer.  I would feel better about leaving if I stayed longer.

 

There are several things it could have been or just the combination of them.  It might have been the air flight that made it spread so fast.  It spread to her left foot after she flew in April.  She also had to 90 minute treatments instead of the usual  60 minutes so it may have been too much for her.  She also went into a cold swimming pool yesterday and that might have been bad. 

 

She is getting another prednisone shot at 4:30 today. I don't know if she is getting an HBOT afterwards or not. Susan had planned to take the whole day off. 

 

We are getting ready right now to go to Target.  Sweetpea is craving to go and she thinks it will take her mind off things.  We just have to try to not over due it.

 

I will check in later.