Thursday 6-4-09 Ally hospital update 11 am

THANK YOU sooooo much for all the supportive emails, posts on our website and prayers!!!  Sorry I can’t respond to each, but please know they mean the world to me and our family.

 

Things are going well at the hospital and Ally is improving quickly with LOTS of TEAMWORK!  I am very happy and I’m praying to be home by maybe Saturday or Sunday.

 

We are still doing treatments every 2 hours — pretty much 1 hour of treatment, one hour break and restart the shaking up the mucus with her chest vest, coughing with her Cough Assist machine, suctioning, IPV (which is a nebulizer that shoots burst of saline/air/meds into Ally’s lungs to break things up), tons more coughing and she is in postural drainage position (head lower than her butt to encourage the secretions to come up) 24 hours a day since she tolerates it with her GJ feeding tube.  This is VERY intense and tiring for Ally and all involved, but it gets her well quickly and back home where she belongs.  We’d rather be very intense for 3-7 days and get Ally healthy, happy and home quickly than stay here for a month, or struggle at home.

6-3-09 hospital bi-pap 1

6-3-09 hospital bi-pap 2

We made one big mistake the first night.  I did not insist on deep suctioning to get the mucus in Ally’s lungs out and quite a bit built up (even know she seemed to be doing fine with us using a little sucker).  During the first respiratory treatment on Wednesday morning, Loretta (our absolute favorite Respiratory Therapist) did deep suctioning, extra IPV… and got TONS of mucus plugs out.  This caused Ally’s oxygen saturations to drop into the 20s (goal is 100) and her to have major trouble breathing for a short time – but this is what can happen while getting it all out.  After the first treatment, things got easier on Ally and we just continue to clear her airway every other hour.  The chest x-rays are remarkably better already.  Loretta even worked a 16 hour shift to help Ally out (7am-11pm).  Then we had another friend Trish overnight.  We had 2 new nurses (Vera and Rene), but they did WONDERFUL with Ally.  Things are going smoothly with the doctor team too since they all agree with the “Ally PICU Plan of Care” that we created together and have in their computer system. I highly encourage other families of chronic kids to create one of these for when your child needs to be hospitalized.  It includes room set-up, weight/height, medicines, machine settings, detailed breathing treatment plan, feeding/nutrition details, past intubation details, possible team of nurses and respiratory therapists, numbers and emails of doctors involved with Ally’s care, goals that need to be met to get Ally home and continue care from there….

 

So as I said, we hope to have Ally better and home by this weekend.  On Monday, we are doing more training with her Dynavox computer and I highly think we will still be able to do this with all her new therapists and teacher at Stock School. We will need to be even more cautious of germs as we venture out of our bubble, but I don’t regret any things we have done with Ally this spring.  Unfortunately children get colds/bugs and for Ally this often can mean a collapsed lung.  As she gets older she is getting better at handling and having less illnesses, but hospitalizations (since I need some help) will sometimes occur.  I am just VERY grateful for the teamwork that we have established at Children’s Memorial.  It is truly a GREAT hospital that continues to grow in their care for Ally and SMA children.

 

Hope you enjoy the new pictures (on her site or at the bottom of my email).  There is also a link at the side of her website http://AngelAlly.com to a new you-tube video of Ally driving her loaner powerchair on Monday.  She did amazing driving for over an hour and proved she is completely ready for her own.  The paperwork has begun and it will be submitted to the state.  My guess is 3-6 months, or longer, and Ally will be driving her own wheels. 

 

Okay, time to eat.  I am eating lots of fruit, stepped out for a walk with Billy (while Loretta was with Ally), and slept 3 hours the first night and 4 hours last night.  This sounds crazy, but that all is very good for me.  Thanks to Service Decorating for being accommodating to Billy’s work schedule.  Also thanks to Auntie Janice and my mom for helping with the older girls.  We don’t need any extra help with them now, but thanks for the offers.  We will let you know if things change. 

 

Thanks again for everyone’s prayers and support.

It really helps during these more difficult times.

 

Have a great day!

Tina, Ally and Family

5-28-09 school

5-29-09 Franklin Park FD MDA Bootwalk

5-29-09 Franklin Park FD MDA Bootwalk

 

5-29-09 Franklin Park FD MDA Bootwalk

5-30-09 Ally and Melissa

5-30-09 Ally and Melissa 2

5-30-09 Ally and Melissa 3