As some of you know from Facebook, Ally’s spine surgery scheduled for 3/16/16 has been postponed once again due to bacteria in her urine (UTI). She is NOT sick and has no symptoms, but we tested BEFORE traveling 5-6 hours to Cincinnati since this is why it was cancelled in November and it is common for children who have chronic conditions (using briefs) to get UTIs.
The hopefully good news is that we might be able to do it as soon as next week, Wednesday 3/23/16! Ally really needs this surgery since her spine is curved so much!
For those familiar with the medical world — Just got details from our spine nurse — Dr. Sturm would like Ally to continue antibiotics for the UTI till Friday 3/18. He would like a urine analysis ordered STAT on Saturday 3/19 after the antibiotics end to check for bacteria. It is okay to order the culture too, but they only need the analysis. If clear, we will travel to Cincinnati on Monday 3/21 early afternoon and admit Ally to the hospital early evening Monday 3/21 for spine surgery Wednesday 3/23 at 9 am.
We are on the waitlist (which sounds quite long) for Ronald McDonald House for when we are in Cincinnati and also have a tentative discounted (but still expensive) reservation for the Kingsgate Marriott half a mile from the hospital. I will stay with Ally in the hospital the entire time, but this is for Billy and my mom to easily come back and forth. My mom will come with us for the initial days in Cinci and then return to Chicago to take care of Melissa. If surgery occurs, my mom will be in Chicago for her 60th Birthday on 3/29, but we GREATLY appreciate her help!!!! We will also be celebrating Easter in the hospital away from Melissa and Kristyn.
I am trying to find out if JourneyCare or an alternate nurse from our home nursing agency can do the urine catherization for us since we do not have a nurse this Saturday 3/19, or we might have to bring her in to the doctor’s office (or maybe find a mom of another medically fragile child to help us).
Ally will stay home this additional week from school to avoid any additional germs. There are soooo many going around that we need to be cautious. Her stomach is also already upset from the antibiotic and we have doubled her pro-biotic to help her.
Thanks again for everyone’s support and PRAYERS,
Tina and the Krajewski Family
Angel Ally Blog - SMA Type 1 
Praying for Ally to be healed of the UTI and be able to have the surgery. Praying for all of the family and the Surgeon.
Thank you very much 🙂
We are leaving Monday for Cinn too! Let me know if you need to share our RMH room! All in God’s timing!