Wed 6/24/09 Ally back in the hospital ; (

I am sooooooo sad and very, Very, VERY frustrated to write that Ally is back in the hospital at Childrens Memorial.  We admitted her about 8 pm Tues night since she has most likely a very TERRIBLE cold that has affected her lungs quickly and turned to pneumonia.  I haven’t even had a chance to write about about the ALL the wonderful things she and our family have been up to since we got out of here June 8th (school, church, my b-day, MDA Lock-Up,  International Families of SMA Conference in Cincinnati….) and here we are in PICU Room 30.  I do not regret doing any of our outings as they are all an important part of the life we have chosen for Ally and she was doing very well until Monday.

It started with a cold in our immediate family.  Melissa got a cold that was manageable in a non-sma child.  Then, I started to feel crappy Saturday afternoon at the Families of SMA conference so kept myself in the hotel room away from others Saturday evening and barely said goodbye to other families on Sunday for fear I would spread germs.  Billy did his best to help with the older girls and with Ally’s treatments but being in a small hotel room and over 6 hour drive home in our van didn’t help manners at all.  This cold was SUPER tough on me and had me hacking coughing, sleeping tons, cold/hot flashes starting Saturday night and just began winding down Mon/Tues (luckily I had some help from Billy and 2 great home nurses Lucy and Rosalyn).

I really have not regained the mental strength to be here again.  Although Ally pulls through like a trooper, hospital stays really stink for her and all of us.  I was determined that we would handle this illness at home when she started having some trouble, but when desats start going into the 50s (out of 100 for oxygen) and I’m bleeding in lots of oxygen into the bi-pap/cough assist and IPV, doing coughing practically non-stop, fevers almost to 102, I have to admit that we need hospital help.  I just don’t understand why Ally’s left lung collapses so quickly.  We still hear some air movement, but the xray was junky on both sides. 

So we are here again, hopefully for only a short stay.  We are doing treatments every 2 hours, using only a little o2 with higher bi-pap settings, general antibiotics until we see if she has a clear infection….  Things are going smoothly thanks to some great staff and Ally’s plan of care.  She was only in the ER a short time, they got blood and a line on the first draw and we have a regular room even though the PICU is filling up quickly!

I’ll update Ally’s website (http://AngelAlly.com) when I can and possibly email.
In the meantime, we appreciate your prayers and well wishes.

Tina, Ally and Family