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Sunday, January 20, 2013

Two weeks....January 20, 2013

The past few nights Ian has decided to play games...he would desate around the 6 to 7 o'clock hour, however he would recover quickly and get his levels back up...last night Ian decided to play his game a little earlier...around 5:15 I got a call from Brian that they needed to intubate again....his levels dropped again and this time he did not recover as quickly as they were hoping as well as it being the 3rd night in a row he did this, the MD's felt that he needed more support then what the bi-pap was providing him. His current settings on the vent are the same as what is one the bi-pap except he is getting more pressure into the lungs. Here s a link to what another mother wrote when explaining respiratory issues with her child who has SMA 1. Please remember that because of Ian's variation of SMA, somethings are similar but not everything and there is no way to really know....
http://www.smasupport.com/sma_treatments.htm#Respiratory.

So as of now, Ian is intubated again....we don't know what this means or does not mean for him...Brian and I have some things to think about and more tough decisions to make....we have had some discussions with the MD's regarding this....

One step at a time and we will figure it all out....thank you for all the wonderful support....

Many of you have asked how Becca is doing....so far she seems good. We have been keeping her updated at her level and her language. We are taking it one step at a time with her and will figure it out as well....just like we have with everything dealing with our "Normal"....

1 comment:

Anonymous said...

KC Levy Saying prayers for you all.

Lanaye Hoover Keeping you all in my thoughts and prayers.

Carol Zika My heart is with you.

Heather Lev Thinking of you all. Keep up the strength! ! Xoxo

Samantha Gitli Schaefer Our thoughts, prayers and love are with all of you.

Dave Collins Tons of prayers for you guys. God Is Good and is with you.

Lauren Kemp Thoughts, love and prayers to all of u!

Kristine Freda Bennett xo

Jessica Woolf Dorsey Thinking of you guys! Sending healing mojo Ian's way!

Kendra Bober Our thoughts and love go with you...

Emily Michelson Levin Keeping you all in my thoughts and prayers.

Stacy Glick Alperstein Thinking of everyone! Lots of prayers.

Julie Goldman Egleston Hugs to you all and lots and lots of well wishes!!!! Thinking about you!!! <3

Traci Kodeck Thinking of your family today! Thanks for the info on SMA!

Rikki Ziman Thinking of you and sending positive thoughts .

Kelli Maples Bethel Thinking and praying for all of you.

Carye George Everett I am thinking of you. If you need anything, please let me know. You are amazing.

Jay Weiner Thinking good thoughts for you!

Paige Weinberg Schwartz Sending lots of love and hugs!

Sherri Eisenberg Flaks You continue to be in our thoughts and prayers!

Debi Gersh Van Camp Xo

Stephanie Leibowitz Weinstein You all are in our thoughts and prayers. Give that little man a hug from us!!!! xoxo

Amy Eisenberg Samay Thanks for the link to the very informative website. Ian is in our thoughts and prayers!

Helen Weisman Dagilis Keeping you all in our thoughts and prayers.

Rose Muhlhausen Kendig Thanks for keeping us informed. My prayers are with you all.

Tamara Jayne Flax You are in my thoughts!

Kerri Hayman Farrell You continue to be in my thoughts and prayers!