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Tuesday, April 8, 2014

Rough Nights - Possible "New" Normal

The last few nights have been rough for Ian...well for the most part he is sleeping through them ... his saturation levels have dropped below what doctors as well as us are comfortable with...his levels should not go below 92-90, once this happens for about 10 minutes it is time to bring out the oxygen. Well the past 3 nights, Ian has decided to play let my numbers drop...oxygen sounds like a good thing. In the past when this has happened, he has only needed the oxygen while he was sleeping and then it is back to room air. It has not been that easy to get him off of the oxygen this past 3 days. We are looking at lunchtime before getting him off, actually today he was off for about 30 minutes, after some suctioning, he decided to drop into the mid-80's. So back on to oxygen it was. In addition, we have added a new pain medicine into Ian cocktail of meds...when asked if it is helping he will say some but it could do better. So we are continuing to increase it in order to get to a therapeutic dose. 

Last night Becca told me she was worried because Ian needed oxygen more recently. I told her we all were worried and that we were going to just continue to work through it hoping that it did not become our new normal but there is a chance it could be. Today after school, I asked her how her day was, she said okay. I asked how Ian was, she said okay but mommy he is still on the oxygen. I said I know...he was off for a little bit today but needed it again. I checked in with her to see if she has told any of her friends about the hard time he is having, she said no, if it becomes our new normal then I will but I am hoping that he is just going through a difficult time right now....

Us too baby girl, us too....

2 comments:

Amy Marie said...

Sending prayers for your sweet family.

Anonymous said...

Kristine Freda Bennett :(

Stephanie Rabinowitz Becca is the best sister <3

Ezra Aaron Buchdahl Thoughts and prayers are with you all

Leslie Kapper Sands Prayers on this end too ! Call me if you need anything at all!

Sherri Asher thinking of you and sending prayers

Lauri Harf Greenberg Thinking of you...always!!

Elena Lucini French Thank you for yet another reminder of how grateful the rest of us should be for the things we take for granted. Hugs to all of you, and hopes for a more restful night for everyone!

Denise Winegard Kremnitzer Thinking of you guys. I'm here if Becca needs to talk.

Shelly Thompson Thinking of you!

Sheri Pazornik Goldscher As always, thoughts, prayers, and big hugs!

Marlene Ettlin So sorry the last couple nights have been rough. Thinking of you and sending prayers.

Sherie Bober Rubin Stay strong girl. You are the rock

Helen Weisman Dagilis Thinking of you

Jessica Woolf Dorsey He needs a dose of Eva! Is he ready for her yet?

Marci Weinberg Scher Yes Jessica Woolf Dorsey we can have a date.

Jessica Woolf Dorsey :). Finally!! She is available Thursday night or we will have to wait a week since it's not my weekend this week

Melissa Klawans Cohen Thinking about you

Wendy Elover Love, hugs & prayers for peaceful nights headed your way.

Samantha Gitli Schaefer Love to all of you!

Jennifer Simkin Mekiliesky Aww sorry to hear about your nights , hope all gets better for you all ❤

Leslie Middleman Toll I hope things improve.

Karen Unger Frazier We wanna stop by at some point before we leave is that ok ?

Nancy Polack Kaplan Hang in there. Hope the Po2 goes up

Karen Garelick Wolfe I'm so sorry for everything your family has been going through. My thoughts and prayers are with you.

Erika Agetstein Buchdahl Ok. How do you and Karen Garelick Wolfe know each other??

Karen Garelick Wolfe Erika Agetstein Buchdahl I know Marci from Randallstown Elementary.

Erika Agetstein Buchdahl Wow. Small world

Tamara Jayne Flax My thoughts are with you.

Marci Weinberg Scher Thanks all...hoping for no oxygen tonight but we will see...as we have been told by a wonderful nurse....oxygen is the best medicine we have in the home and trust me we have lots

Annelise Sullivan Praying it's just a temporary setback.

Alexandra Kaplan Pratz Thinking of you

Sara Alima Ostrow Hoping for a good night.

Carolyn Hack Kaplan-Solomond Sending positive thoughts

Emily Michelson Levin Positive thoughts and prayers that this is just a little bump in the road and you'll be back to your "old normal" sooner than later.

Michelle Kampler Schwartz So glad, so honored, to have spent time with your sweet boy this evening.

Lori Kaplan Hugs to all of you and hoping that it is a positive and restful night.

Melissa Leon Hope this is a better night for you both.

Gina Cohen I hope this is just a temporary set back. I had the opportunity to have Becca in class today & she seemed to be in good spirits. I also had a chance to see my super hero & he stuck his tongue out at me & smiled. I cherished the moment. Thinking of all of you, always.