12/26: Intubated and doing well

Emily's had a good day today despite having been reintubated. She seems relaxed, for the most part, and has started to bounce back. We do not have an expected extubation date, but I'd guess a couple of days. This time we will make sure that TPN has been ordered so when they want to fast her she will still have some nutrition. Best case scenario would be that they fast her for 2 hours before extubation and 2 hours after, MAX. I think the fasting issues are the only remaining beef we have with Hopkins - well, that and consistency of care with SMA kids. I hope they've been taking notes about the things we have been fighting for so future SMA families do not have to recreate the wheel, per se.

At this point we are keeping the option to transfer to CHOP open, but we feel like things are under control. They wouldn't let us mix Emily's food here for a day, but that stupidness ended quickly. DON'T MESS WITH AN SMA KIDS DIET if the parents say so, period. It is a serious thing to mess with an SMA child's diet b/c many parents like us have spent countless hours dialing in the nutrition per our child's particular needs. For some kids changing things around is deadly! No kidding.

So, the fact that we are pretty much in control of Emily's routine here says a lot. Change is happening, but there is still a lot work to do. Hopkins needs a protocol for SMA kids that is followed by every PICU doc so all of this teaching/showing the doctors and RT's isn't needed.

Thanks for your thoughts, prayers, and encouraging notes! We are blessed by you!!

Peace <><


Sky said…
Nate Im so glad to hear Emily is doing well! Im sure you guys will be there 24/7 to make sure the RT's, nurses and doctors follow all the rules... Were praying for all of you and wishing for a fast recovery :) Hugs Sheila
Corinne said…
Hey there Lee family! A late Merry Christmas to you all. We're home in Canada right now and I'm catching up on "my" blogs. I had over a week of your blog to read up on...and I'm glad to hear that the latest news is that Emily is doing well. We're thinking of you all and will keep you in our prayers. May the peace of Christ be with you.
Corinne & Patrick Fletcher
Anonymous said…

I am sorry Emily's RSV hit her hard again and she had to be intubated again. I am glad that Hopkins is responding better to your advocacy for her. We are praying for you guys, and for Hopkins to be the hospital you need. We are also checking the blog regularly. Thanks for keeping it up.

Steve Green
Anonymous said…
Remember, to call if you need us. Glad Emily is staying strong.
Mike D.