10-2-09 at 11 pm – VERY rough morning for Ally, but things improving greatly!

Wow—- It was a SUPER rough morning for Ally and a very emotional roller coaster for me. Things have improved though throughout the day, so I can take a few minutes to share what happened.

As I mentioned in my last post, Ally started having some breathing trouble Thursday evening. Well, it got worse and worse overnight and into the morning. We went from treatments every 4 hours, to 3 hours, and then had to do it every 2 hours (1 hour treatment, 1 hour break) and bleed in 50% oxygen through her bi-pap to keep her at a semi-safe breathing condition. This isn’t safe though since SMA kids have a hard time getting rid of carbon dioxide when they are sick and especially if given so much supplemental oxygen. We do tests to check the levels and they were in the normal range of 35-45, but then at 9 am her carbon dioxide level was 106 and this was before and after a VERY rough treatment with desats into the 40-50s o2 out of 100. Her secretions were very dry and thick with barely anything coming up. This means she could get a plug and stop breathing completely at ANY minute, so we most likely needed to intubate/put a breathing tube in to help her. This is so scary for an sma kiddo, but sometimes needed.

As a last ditch effort, we did a second pulmazyme treatment through Ally’s IPV machine to try to thin the secretions, tons more coughing and deep suctioning… for about 2 hours straight. Then, for the first time ever, I agreed to try a full face bi-pap mask on Ally before intubating her since with her nasal mask we were not getting high enough pressures and she had a significant leak. I have always fought this for fear she might aspirate on her secretions or choke since she cannot swallow, she cannot communicate with a mask over her nose and mouth, and she might just be so afraid and hold her breath. So I agreed to try it for at least a few minutes before intubating and IT WORKED wonders!!!! Ally went from 106 carbon dioxide to 70, then 60 and now at 9:30 pm is at 43 (completley safe). She has also gone from using 50% oxygen down to 30% and we should soon be at 21% which is room air. We have been doing treatments every other hour also, but I really attribute a ton to this full face mask giving her the extra support she needed to keep her lungs open. We haven’t had any big desats since this morning (knocking on wood right now).

So, God has answered my prayers again. God is in control of all of this. There are many times that I fear it may be time for Ally to go to heaven and she might not make it through one of these illnesses, but then she pulls through with more courage and strength than anyone I’ve ever met. She is a champion warrior and God is in control. I am just so thankful that she has more to do on earth and that I can be a part of that and share her life and story with others. She teaches me and soooo many others sooo much every day.

Okay, I’m getting a little/lot emotional, but it has been one CRAZY rollercoaster day.

Few more positives….
I talked to Patient Relations today and shared my major concerns about their new food company/policies of NO guest meals can be delivered to the room under ANY circumstances unless you pay $6-$10 even if you only need an oatmeal to sustain you and you are providing your own child’s meals that are very expensive. And there are no more meal tickets or garage parking passes since they have run out of donated funds. Nothing has been solved, but the communication has started that they have taken many steps backwards in meeting families needs. I also had an amazing friend who they allowed to call in a credit card to cover several hospital room meals in case I do not have CASH on hand and can’t leave the room to eat or get money (like I couldn’t from midnight till 1 pm today until Ally stabilized).
Another positive, Maribel (our home nurse and employee here) was allowed to come in on her days off and worked yesterday 3-11pm and today 7am-7pm to take care of Ally and the little girl next door. Since its been two rough days, this did make things MUCH better. I was able to take a shower in the hospital at 3 pm today (first time since Monday) and go out for an hour to get dinner with Billy (today and yesterday). I would have never left Ally with anyone else. Thank you Maribel (Ally’s Angel) and the hospital for allowing this.
The respiratory department did a wonderful job re-arranging things so Ally could have her own therapist today and tonight to do treatments every other hour to avoid intubation and work on clearing out her lungs and/or popping them back open. Special thank to all in the RT department (especially Avin, Helene, Catherine, Loretta, Kylie, Kellianne….).

Questions to other SMA families —
1) Have you ever used a full face mask for bi-pap during an illness and can you share a little about the experience? Or why haven’t you? Do they ever use it to avoid intubation in Madison?

2) If your child has used Tobi nebs, did they use 40, 80, or 300 mg? Did they use a 14 or 28 day cycle and how often are you doing the cycles? Do you do 1-3 times a day?

3) Do you deliver Tobi nebs through a nebulizer, nebulizer connected to bi-pap, and/or IPV machine?

4) Can Tobi nebs be mixed with any other medicated neb, or must it be done separate?

I am going to post this and try to add some pictures tonight or tomorrow. Scroll down on her blog to see them, or come back later if they aren’t here yet.

Thanks again to all of our friends and family!!!!!
Tina, Ally and Billy