Please say a prayer or well wishes for Ally. She now has a bug (after over 2 weeks of severe strep, cold, flu) going around our immediate family. I’ve begun treatment every 4 hours or sooner, but we may have to go to the hospital if it doesn’t get better. Yellow secretions and now a fever of 101.3 and very irritable.
My poor baby/big girl, but she is a fighter. Soooo many kids and grown ups are sick, but for sma kids it can be life threatnening.
Update sent to Children’s Memorial 2/10/10 6 am
Hello Children’s Friends,
Attached is Ally’s updated PICU plan of care.
Unfortunately, Ally is sick right now and we might need to come in within the next couple of days if she does not get better. So far, she is okay and I’m able to handle treatments , but wanted to update her care plan and send a quick email. I have also been talking with Dr. Lestrud’s APN Jenny Beier and will call her again in the morning to see if we should do cultures/x-ray or be admitted. We have had strep and flu in our house over the last two weeks (everyone except Ally and my husband), including me needing to go to the ER last week since I was so severe. She has been doing well with us taking lots of precautions, but thick/yellow secretions have begun. She also had her first fever of 101.3 Tuesday evening. I am currently doing q4 treatments and using o2 during treatments, but no o2 while on bi-pap. Starting last night, she will be on bi-pap 24/7 and drops during treatments without o2. She finished her 28 day cipro on Friday 2/5/10. We also did tamiflu pro-actively and she finished that on 2/8/10. Currently we are doing xopenex q4 and pulmazyme BID.
I plan to talk to Jenny Beier or Dr. Lestrud in the morning and will notify the hospital if we are headed in.
I’m most nervous about spending too long in the ER at a critical moment. I know it is busy though and it might happen as a room is prepared. Not sure if direct admission could ever happen or cultures and xray done on the pulmonary floor?? If in the ER, we might need an RT to assist me with a treatment for back-up. Also if admitting, would like to do a PICC line asap, if a line is needed and while Ally is semi-stable.
Thanks for everyone’s help in the past and for future help.
I’m praying things turn around at home, but wanted to update while I could.
Tina
Angel Ally Blog - SMA Type 1 
Heavenly Father I ask that You place Your Healing Banner over Ally at this time and heal her body of this infection. Lord I ask that she and other children suffering from SMA be healed from this devastating disease and not be made to suffer from any more infections. I ask also Lord that for Ally’s family to be healed and strengthened to provide the care they need for Ally. I pray this also for other families with children like Ally. I ask all this in the Name of Jesus Christ our Lord and Savior. Amen