Major Improvements and Big Changes!

Well the past few days have been really wonderful for Sylva and the progress that she has made is fantastic!

Today Sylva is getting ready to finish up her time in the PICU!  Her progress has been miles ahead of what the doctors expected.  Each one has expressed great satisfaction and some surprise at her daily improvements.  Here's a brief summary:

Things that have changed this week

  1. removal of an arterial line and 3 iv's (still a pic line to go)
  2. removal of last 2 chest tubes & 1 feeding tube
  3. weaning off 6 different meds (or more - we have lost count)
  4. discontinuing of the paralytic drugs
  5. music therapy
  6. and the beginning of light liquid foods. 

Physically Sylva is now awake most of the time and has been able to start using her body.  She started the week unable to even hold her head up and she looked like just a tiny version of herself.  She began physical therapy with just the tiniest moves but now she can sit up and do a few activities and when she is really motivated she can even wrestle against anyone who wants to do an uncomfortable procedure.

 As the week progressed and she had more and more strength as well as an increased awareness of all that was going on .  Sylva used her knowledge of sign language to let everyone know just what she was thinking.  Unfortunatly not all of the time are we as adept at reading sign as she is at signing.
When she was extubated she was anxious to begin speaking right away and we were looking forward to some improved communication however it didn't take long for her to realize how painful a throat could be after so long on an ET tube so we are back to signing again.  Occasionally she will attempt to speak and she has such a weak and different voice.  It is hard to tell if she is bothered by the new sound of her voice but like everything else in this adventure it will only be a matter of time before even her vocal chords change.  

Thursday was a day to catch up on REAL sleep. With all the meds and paralytics we are told that the normal sleep cycle is really thrown off and true restful sleep usually doesn't happen during this time so finally Sylva was able to have some dreams.  Her body has been working hard to throw off  all the effects of so many medications and one of the effecs is her very peel-y skin. 

Friday included lots of steady small improvements.  The goal was to get her Peep setting on the ventilator down to a 6 or even 5.  For a while she was able to hold a 6 but it may have been too soon and she was moved back up to 8.  She needed to get it down to 5 before she could be considered for extubation.  For the most part Sylva felt good and even decided to help the respiratory therapist by doing some of her own cpt. (chest physical therapy).

Saturday was a good day with lots of 'trials' of breathing with less and less aid from the ventilator.  Her color and demeanor were good in terms of healing and she spent most of the afternoon sleeping.  During the night they continued to do many breathing trials.

Sunday she was extubated around noon.  Even though we had been trying for days to stop her from removing the tube herself when it came time for the big event she was having second thoughts as the 'dreaded tape' would have to be removed from her face.  She thought she really liked her RT and was having a good rapport with him even to the point of joking but it wasn't long before she changed her mind - there was a lot of suctioning that needed to be done and it is much more uncomfortable without the ET tube.  Also she had an official negative result on her virus test and the hospital agreed to let her off the isolation restrictions!  The night started off with a struggle and lots of adjustments - there was concern about her needing to be re-intubated but as the night continued she began to do fabulous.

Monday was the fist day in  5 1/2 weeks that were able to hold Sylva!  She had a great day and it was also the first day since being at PCMC that she was able to eat real food.  She still has a feeding tube in but this day was a trial to see how well her GI tract would work after being intubated.  If all continues to go well the tube can come out soon. This will be very welcome because she has already had to have it replaced twice from her accidentally pulling it out of position.

Mike & Julie  – (July 5, 2011 at 1:31 PM)  

Great news! We are so pleased! We will continue to pray and look forward to improvement stories in the near future. Keep up the good work Sylva!
Love, Uncle Mike and Aunt Julie

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