Before going to sleep (for hopefully at least 6 hours) thought I’d do another quick update.
Ally had a good day with her breathing treatments every 2-3 hours and maintained her oxygen sats in between really well. Unfortunatley this evening she began a fever again (highest 101.8 and that was about an hour after 100.4 and motrin). The docs ordered another sputum culture and we did another strep test. We are waiting to see the “rapid” result of the strep and the cultures will start cooking to see what grows (plus we are still watching the other ones grow). My mommy gut says the strep will be positive (even though she was negative 5 days ago. My mom and I were positive for strep as well as Tammy’s kids, our MDA director (a couple days after seeing us), the older girls had symptoms and were treated and today, one of our favorite day RNs who has been following Ally tested positive and went home early to rest. I can only predict Ally has it since she has fevers and has been trying to cough and show discomfort. She is mostly happy and enjoying cartoons, but it is difficult when she attempts coughing. I guess we will find out soon or in the morning.
I would like to share an AMAZING Respiratory Presentation presented by pulmonologist Dr. Schroth. She often travels around the US to different hospitals that would like to hear her experience with over 70 SMA patients and her successes and recommendations. Recently she presented to the medical proffessionals at Nationwide Childrens in Columbus, Ohio. I am praying and hoping that one day Chicago Childrens Memorial will invite her to come here to present/share her expertise with SMA and the Neuromuscular Protocol that Madison WI has developed. In the meantime, maybe some of the staff will take some time to see this video and slide show. It’s also great for families to look at and learn from too. The link is http://nch.dataserv.tv/NCH/Catalog/ and by clicking on Respiratory Care Options For Children With Neuromuscular Weakness Let me know what you think about it, if you choose to watch it.
Hope you enjoy the following photos albums of Ally before and during this hospital stay…
Click on the album cover to see all the pictures
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| 2010-02-14 Ally Feb hospital |
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| 2010-02-08 MDA Shamrock Kickoff |
Angel Ally Blog - SMA Type 1 
Continuing to pray for Ally. I know strep can be pretty serious as I have had it many times throughout my life and being one with asthma it really gets bad. So I know how serious it is for Ally and other children like her and also for adults with neuro muscular and neurological diseases.
Tina,
Havn’t seen an update. How are things going at the hospital? Better nurses now that the weekend is over? give Ally XOXO.
As far as help with sleep at the hospital….I don’t sleep much there. Maybe a nurse has a good resource.
Take Care!! Let me know if you need anything. I saw Kristen afterschool today across the street with Gabby & Courtney. They were so happy & sillly!!