Ally is finally all settled in her PICU Room 1626 at Lurie Children’s Hospital in downtown Chicago. We got here at 2 pm and I’m just sitting down finishing my one meal of the day after organizing her things and educating the staff on her. Unfortunately we have already had 2 new nurses, a new resident doctor, a new attending doc and a new RT to Ally. They are all GREAT people, but its hard starting from scratch. I’m begging for consistency of a primary care team even if its all the same new people for a few days in a row. Ally already had a drop to 40s out of 100 for her oxygen sats when they started her breathing treatment and I demoed how she is used to things and coughed her back up quickly. This just shows how important it is for people to know Ally and her unique needs and signs. Tomorrow, surgery for her port (that will be used for bone infusions), foot release, and broncoscopy (checking her airway and trach) is scheduled for about 1:30pm.
Thanks in advance for your prayers and well wishes.
It means the world to us!
I am trying to find out information on the gift shop and online free cards, but haven’t found that yet (since a couple of people asked). I will post if I find it, but most important are prayers and positive vibes 🙂
11:30 pm update — Ugghhhhhh, just trained another RT on Ally’s bedtime breathing treatment. Overall, everyone who has stepped into our room in brand new (to Ally although we have seen 100s of staff here) and the RTs didn’t even show each other the treatment, they just think the next person can handle it or I will show them. I’m here for that, but miss our tried and true RNs and RTs that we have had over the years. Something needs to be done on consistency of care. I cannot do this for 4 days and I hope we have some familiar faces tomorrow for the stressful day of surgery. Thanks sooooo much for everyone’s comments and prayers 🙂
Angel Ally Blog - SMA Type 1 
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