Ally additional updates from 7/8 and 7/9

From an email I sent to family and friends……. to make it easier to share here…..

This email is to share Ally’s hospital updates (in case you didn’t know she is at Childrens )  I added some to yesterdays blog to share the lasted news with family and friends…

I don’t forward all updates, so if you want to stay up to date on progress, you can sign up on her website to get an email when something new is posted.  There is a link to get automatic email updates in the upper right corner of her website – www.angelally.com

Be sure to notice in this email that FREE cards can be sent to Ally’s room using the link Order a free Children’s Expressions greeting card and there are links if you’d like to send her a tiny gift for her courage. Ally is in Room #217.

7-9-10 9 am update — Ally had a little bit of a rougher night.  Her carbon dioxide levels have begun to go down, but she is now having some regular desats into the 30s during treatments (and even a 12 out of 100) for oxygen.  She comes back up quickly, but 5 times, her heart rate has also begin to drop from 140s to 90-100, which is not good and scary since her heart rate has rarely ever dropped during treatments.  Between treatments, she is resting well and barely using any o2 at all (25% and room air is 21%). Heart rate is also good between treatment (about 140s which is amazing for an illness, but the drops are scarier than it raising). We haven’t done morning rounds yet, but we are now most likely planning a pro-active intubation to give her some rest during these treatments.  Positive note — Carbon dioxide levels seem to be coming down and staying down.  They are at 57-60 (with a goal of 35-45).  So, next time you hear from me, she will most likely be intubated and we will be waiting for her to regain her energy and for the virus and fevers to pass.  Ally will most likely be okay within a week or two, but this is part of living with SMA with a weaker type 1 kiddo.  It’s probably a simple cold that has become a pneumonia again (still waiting on test results to know for sure).Ally is a trooper and angel through this all though!   She is fighting hard so that we can have those happy times again. Mommy has needed to take two stress bills in the last 24 hours, but all will be okay in the end.  God is in control and Ally has many angels at her side too.

7-9-10 2 pm update – Ally was intubated at around 11:30 am this morning since her energy was almost completely gone and her body was REALLY beginning to struggle and crash.  We did it pro-actively and it went SUPER smoothly with amazing teamwork amongst the Children’s Memorial staff.  We decided to lightly pull a very loose tooth before intubation, so it wouldn’t fall out and be aspirated.  This is Ally’s second time the tooth fairy will be visiting her and I’m excited to show her what she might bring.  She deserves more than $$ for this one.  Ally should be waking up soon from the sedation drugs they had to use.

7-9-10 11 pm – Ally had an overall good afternoon and evening after get intubated (temporary breathing tube).  She is much more rested and can tolerate her treatments better.  Unfortunately, she has still had some desats while coughing and suctioning through the ET tube, but this is because the junk is breaking up and causing mucus plugs.  She recovers very quickly with the help of amazing respiratory therapists and nurses.  We are very fortunate for all the excellent staff who are working with Ally and me this hospital stay.  This afternoon, after being intubated, Ally went to Interventional Radiology and got a PICC line and her tummy GJ tube changed.  She was a trooper.

Alright, I am off to nap on my chair/couch at the bottom of Ally’s bed.  I am very, very behind on sleep and just took an ambien to maybe sleep soundly for a few hours.  Luckily I can do this since we have an excellent nurse and RT helping Ally tonight.

Thanks again for your prayers, friendships and continued support.