Saturday 7-4-09 3 am – Ally CELEBRATING in the hospital ; )

Ally ready for 4th of July - breathing again on her own!!!

 

 

  

Super, Super, Super GREAT NEWS!!!

Ally was extubated (had her breathing tube taken out) on Friday 7-3-09 at 2 pm.  She is doing absolutely WONDERFUL!!!!   So we are truly CELEBRATING this success and the 4th of July at the hospital.  I am also continuing my prayers and thanks to our AMAZING God!!!!   IF – things continue to go this well, my new goal is to wean bi-pap settings and treatments and go home in 2-4 days, all depending on my little Angel Allyson (and how well the docs agree with me).

  

She was put on bi-pap immediately after the breathing tube came out (to be extra cautious since the docs were super careful/cautious with higher settings 22/8 and some oxygen at first 35%), and continued with her treatments every 2 hours.  By 8 pm, her food was restarted since the docs on wanted her off her food way longer than I was comfortable with (Ended up 16 hours from start 4 am to finish 8 pm off food since they were worried that her tummy needed to be empty if the breathing tube needed to go back in. She did have TPN -Total Parental Nutrition thru her IV to give her something , but I don’t know if it was the right ingredients for Ally with SMA on an amino acid diet and not able to tolerate high protein or fats. I was soooo worried that without her food for more than 4 hours she wouldn’t have enough energy to breath with just her bi-pap and might crash before they started her food.  In the past, we only stopped her food for about 2-4 hours total since she is fed into her jejunum at a slow rate of 50 cc/hr when in the hospital.)  But all ended up okay.  She started her regular food at her regular rate at 8 pm into her j tube.  Oxygen was weaned to room air by 10 pm!!!!  A special thanks to the hospital staff and Dr. Rosenfeld for talking and working well with me to make these additional changes in the evening and establish a new, better working relationship of willing to try things a little different than the ‘norm’.  Also a HUGE thanks to our absolute favorite respiratory therapist Loretta for a smooth transition of breathing treatments!

Late this evening, Ally got a really good bed-bath with a great hair washing at 11 pm.  Ally was able to be off her bi-pap for about 40 minutes for the bath with NO de-sats (breathing trouble) at all.  Super RN Sarah and I got her all cleaned up and dressed into her new 4th of July dress.  We changed all of her bed linens and set up her AMAZING new holiday pillows and blanket from Grandma Carol.  PLEASE see the pictures below.

So now my goals are — wean bi-pap setttings to 18/6, tolerate treatments every 4 hours or less often,  xopenex every 4 hours or way less, more mini-bipap breathing machine breaks (like she did during her bath), re-do blood work to check her white blood cell count to see if we will re-start her hydroxyurea, MAYBE try out using a vent non-invasively instead of a bi-pap machine, update her PICU Plan of Care some more, share concerns and praises with the hospital staff/administration, visit 11 month old Mariah who has SMA 1 and just got her trach last week,  and get the heck HOME.

So hopefully, my next post will be from HOME  (maybe Sunday/Monday or Wednesday the latest).  Ally will let us know when she is safely ready.  Prayers for things to go smoothly with the hospital staff and her continued recovery.  I am very hopeful that she will be completely at her baseline very soon and we can safely continue on with a FUN-Filled Summer staying away from crazy, insane germs. 

My little girl is just sooooooo AMAZING, brave, inspiring….. wonderful!!!  She teaches me and others so much.  I am also so thankful to the hospital staff and our Wonderful God!

Another special thanks to all of our friends and family for your well wishes and prayers.  The power of prayer does work!

Hope you all have a GREAT 4th of July Weekend!

Tina, Ally, Billy and Family

Look at my cool pillows and blanket from Grandma Carol!

 

Look at my cool pillows and blanket from Grandma Carol!

Ally ready for 4th of July – breathing again on her own!!!

7-3-09 intubated

7-3-09 extubated to bi-pap

Ally with Super RN Sarah – after bath

6-19-09 FSMA Conference – the girls and Taylor

6-19-09 FSMA Conference – Family 1

6-19-09 FSMA Conference – Family 2