IT'S BEEN A HARDS DAYS NIGHT

It has been a rough couple of days and night.  Poor Shira is so dizzy, from her dysautonomia that it has been hard to sit up, making it hard to stand up.  ( of course every time she says how dizzy she is, I start to sing her theme song, "I'm so dizzy, my head is spinning..." which does not help in the least.  As she constantly reminds me,  I was told by a deaf person not to sing with my voice, just sing with my hands.   Of course, I figure, that by singing as bad as I do, I am distracting her from her pain and dizziness.  I guess this isn't true.

Yesterday was rough, last night a tiny bit better.  Today, we are changing her meds around to see if this will help.  We were able to get her up in a chair and she was able to walk a bit today also.  This is huge progress for us.  She is trying to stop using the Dilaudid pain med anymore if possible, as this probably is adding to her nausea and light headedness.  They are also talking about having to start a new IV tomorrow morning if she isn't able to eat as they will want to start giving her PPN (peripheral parenteral nutrition.  While I know this could possibly help, her poor arms are so bruised from the IV pokes and IV's gone bad, I hate to think of them having to put yet another one in her. 

Mike has had a head cold so we have had to keep him away.  He has been great about coming in the morning to bring coffee, or evening to pick up a bite to eat.  Having said this, I haven't gotten to leave the PICU (Shira's room basically) since Saturday evening.  No shower, no change of clothes , nothing. I have brought a whole new meaning to wearing clothes that go from day, to evening to night.  A couple of really good things about the PICU is that there are no mirrors, so one has any idea how bad they look.  The other is that there is a vending machine right down the hall, that has almost every snack/meal one could desire; barbecue Frito's, bbq chips, peanut m&ms, nut mixes and the list goes on.

Today, Mike was feeling a bit better and wearing a mask, so her relieved me so I could go to the hotel and get a much needed shower and change of clothes.  I promised myself that I wouldn't look into a mirror until after I had showered, but when I sat down down to eat at the desk in our hotel room and looked up, into a mirror.  All I can say is Thank G-d I had no idea how bad I was looking.  I am impressed that any of the Doctors/nurses have been taking me seriously.

The neurologist who is consulting with us re: Shira's dysautonomia and possible mitochondria issues has been great at thinking outside the box.  She is guessing that Shira may need to stay in the hospital another 4-5 days.  I am hoping for 2-3 max, but we will see.  Shira is so very determined to get out of the hospital, but her dizziness and nausea and stomach spasms are making it exceptionally challenging.

As much as I can't wait to get out of the PICU, the nursing staff have been amazing.  The kitchen even found tofu and made up a special meal for Shira as she hasn't been eating.

Shira's nurse for this evening came in and said that Shira's goal for the night is to get a good night's sleep, as she hasn't been sleeping well.  I then asked if they had started one of Shira's new meds and she said "yes and I will wake you for your 2nd dose at 1:00) That is what I love about being in the hospital, they want you to get much needed sleep and yet they wake you ever couple of hours to take meds and/or vitals.  So looking forward to this becoming a distant memory.

Again, thank you for your concern, prayers and healing thoughts

hugs