10-2-12 11:30am — Gift Shop and Ally update/ Room Views

For those that were wondering, the gift shop at Lurie Childrens is NOT set up online yet, but they can do orders over the phone and send to room. At this time, they are no longer doing FREE cards (which we loved reading to Ally). If anyone wants to send her a pic or message on facebook, I will show her them on her ipad.

Gift Shop is open M-F 8am-8pm 312-227-3400
Allyson Krajewski – Room 1626

Please do not feel obligated to get Ally anything. Your prayers and well wishes are most important.

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Ally overall had a good night and has had a GREAT morning (waking up at 4am and taking a nap now).  We had a new nurse and new RT last night, but the nurse was wonderful.  I trained another RT on Ally’s treatment last night and another this morning, so I’ve needed to teach 3 Respiratory Therapists on Ally’s unique treatments and signs so far.  I’m hoping that the same ones come back, or ones who already know Ally well.  It’s just hard having new nurses and new RTs every shift and today is only day 2.   We are lucky to have two nurses during the day (spliting a shift) today that have had Ally MANY past hospital stays and this rests my mind some.  I continue to express this concern to the hospital that we (Ally and I) need consistency with care and to see the same faces who know Ally’s unique qualities as best as possible.

Another GREAT note, there is a new doc who is  head of the picu, Dr. Leah Harris, and she seems phenomenal!!!  She has a ton of knowledge of SMA and seems very up to date on current practices (including using higher setting for cough assist).  She even took some time during rounds today to talk about SMA with the team.  She is a very positive addition to Lurie Childrens 🙂

Surgery will be about 1-1:30 starting with her foot release, then her port for IV access, and her broncoscopy.

I will update when I can 🙂

Thanks again for your prayers and well wishes!!!

PS — Here are some pics of Ally’s room at the new hospital and our view of downtown Chicago.  If you click on the photos they will get bigger and have a description.