7-8-10 10 pm — Ally hospital update

Ally has had a crazy day at the hospital.  We admitted her Thursday morning at 1 am since we needed help with treatments and serious desats due to lots of junk in her lungs (probably a cold turning into pneumonia). She is tolerating her breathing treatments (every two hours) well enough without life threatening desats, but her co2 levels have been horrid.  Normal is 35-60 and she has ranged from 60s-103.  She is currently too weak to pass off the carbon dioxide her body is making and since she has needed oxygen for about 6 days, it makes the problem worse. Normally these dangerous co2 levels would mean she has to absolutely be intubated, but I’m not ready to do it since she is not having regular desats and is barely on any o2 now.  Dr. Lestrud, her regular pulmonologist and also a PICU attending is working very well as a team with me and other staff members to make decisions and he nicely respects my input as a parent.  We are holdin off intubation for now, but the next 12 hours or so will either lead us to inserting a breathing tube, or her finally turning the corner.  The good news is that she is on barely any oxygen, except for treatments and that the junk is finally breaking up and coming out.  We need her body to get rid of the posionous carbon dioxide though, or she will crash bad soon.  She also has fevers again, ranging from 100-102*F, so we need to get rid of those too.

On a positive note, things are going very well at the hospital as we coordinate Ally’s care.  EVERYONE is truly working as a team, with me as an equal part of that team.  A HUGE thank you to Lora for working hard today to create a team/schedule of nurses for Ally for the upcoming days here.  The respiratory department is also coordinating therapists that know Ally best.  This means the world to me, Ally and our family.  It is sooooooooooooo stressful being in the hospital, but it goes much more smoothly when working with strong team members who already know Ally and me.  I pray that it will continue to go well and that we aren’t here too long.  My guess is minimum of a week, but it may be longer depending on which direction Ally goes.

Thank you for your prayers and well wishes.  Your messages help brighten my day, even though I am unable to respond to each.  If you’d like to create a FREE e-card for Ally, please go to Order a free Children’s Expressions greeting card. I read each card to Ally and decorate the room with them.  There are also links if someone wanted to send Ally a tiny get well gift or balloon order online for in-room delivery or to speak to the Gift Shop, call 773.880.4601.  Most important is just your prayers.

Here are a few pics of Ally doing her breathing treatment and enjoying music therapy today at the hospital.  I’ll also try to post some from June too.