These pics are of a very special butterfly/angel hanging out in Ally’s HOSPITAL ROOM. It landed on Ally’s foot while walking to the hospital from our parking spot a few blocks away Monday at noon. It was still on her when I transferred her to the hospital bed. Tuesday, early evening, Billy saw it sitting in the window while Ally was having her bronc procedure done. I’ve always believed butterflies are angels and this one is definitely looking out for Ally and our family.
Ally had a super successful, yet LONG day. They re-did her blood cultures and we should have some better results tomorrow morning, but we are treating her with IV antibiotics just in case she has an infection (it may have been a contaminant though). In addition, cultures are still growing to see if she has a urinary and/or trach infection. They are also treating these, just in case. Her MRSA nasal swab was also positive, which overall she has colonized, but the antibiotics she is on will help treat it if it is flaring up. What’s complicated is that cultures take a few days to officially grow and so its better to treat pro-actively and then see the final results than to wait. Some of the above things could have been the partial cause of Ally’s fevers, or they could have been breathing related.
Ally was scheduled to do a broncoscopy at around 3 pm (as an add on) to check her airway and trach size (making sure she was not leaking too much air to allow bigger pressures and volumes in her lungs). We needed to stop her food 4 hours before, but unfortunately she did not go in till around 5:30, so she went 7.5 hours without food. This could be dangerous for a type 1 SMA kiddo since they have a fatty acid metabolism disorder and should never go more than 4 hours without food so the body does not break down any muscle it has. Regular IV fluids are not enough, but a special IV fluid called TPN is needed to sustain the kids if they need to be off feeds. It was too late to order this when the procedure was scheduled, so Ally had to be without feeds. Overall, she seems to be doing very well though and food was re-started immediately upon returning to the room. Ally’s procedure went well and she did go up a size in trachs to help control her leak. Another positive is that Ally participated in music therapy before her surgery which calmed her down as she was getting a little cranky.
Tonight at around 10pm, after Ally’s bedtime breathing treatment, she was switched back to her home ventilator (breathing machine). She is doing EXCELLENT so far on her new settings!!!! The docs wrote the orders and a great RT and I fine tuned the smaller settings together to start things off. Soooooo far, no alarms, GREAT pressures/volumes, and Ally is sleeping, so that is a VERY good sign.
We need to see what is going on with Ally’s blood, sputum and urine cultures, but there is a chance we may get to go home sooner than later. I’m not positive if there is a chance of going home on Wednesday, but maybe. I think the latest would be Thursday, earlier in the day. I am very happy with how things are going and think this will be an EXCELLENT tune up for Ally. Overall, we have had some decent consistency with nurses and respiratory therapists this hospital stay too. The orthopedic surgeon even stopped by to talk to me about Ally’s curve in her spine (scoliosis). He has reached out to other surgeons for their opinions (and is in the process of resending emails with her xrays), but still is hesitant to do a spine surgery on a type 1 SMA child, even though it is being done at other hospitals with large SMA populations (especially in Madison and Cincinnati), Unfortunately Ally cannot have surgery in these places since she has state insurance. I did reach out and scheduled a consultative appointment with an excellent doctor at Lutheran General this week. Ally has an appointment in October, but they might get her in sooner. They also encouraged us to get a consultation at Shriners Hospital too, which is 5 minutes from our house. Surgery is scary, but it will most likely be the next step to keep Ally as healthy as possible and give her the best quality of life without pain and being able to sit up and drive her new powerchair. I’m excited and nervous as I explore surgery for Ally, but know it is absolutely needed soon.
Well, that’s a pretty long update. I better try to get a few hours sleep.
Thanks again for the prayers and well wishes. I truly believe they help a TON!
Angel Ally Blog - SMA Type 1 
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