Sunday, March 15, 2015

A Small Difference Goes A Long Way….

WOW! Yikes! I always reread my last post to see where I leave off at…. I was in a dark place when I wrote that last one.

So much has gone on since… and of course in my fashionable writing skills Im going to copy/paste from FB!! lol

March 14th - Morning/Afternoon Update (Post-Op Day 3) - Last night was a good night, pain was controlled even better (after having a talk with her and a little toy bribing)… she wasn't telling the nurses her pain level, b/c she was not liking them flushing the IV before starting the pain med. (There are no needles involved, just her being scared). They added an oral Tylenol to her list of meds, but she vomited it immediately, that happened around 5:30am… then around 9:30am they gave her oxy (orally) (we are trying to get on oral meds)… she did well, kept it down… but at 10:15 was give colace.. only got half of it in till she threw it up, that was a big mess. Her taste is VERY sensitive right now. But at least she is getting her pain meds, and keeping them down. After all that we bathed her, and got her into her own jammies. Neuro came by, talked about getting her moving more, we said our goal today is to sit in a chair. They put a collar on her (for her age)… but it was way too big, so they had to get a smaller one… she says it feels good when it is on. I think she is feeling very "head heavy" b/c her neck is now in a correct position, and her muscles in her neck are very weak. She did eat 2 ounces of applesauce this morning, and we showed her pictures of the Child Life playroom… hoping to entice her a little to start moving around. She has lost a lot of weight, not sure how much… but the pjs we put on her, fitted her back home… and today I could probably take in a couple inches to make them fit right. I went back to the house to shower, and clean up her favorite pillow and "cowy", she is napping right now, but when she wakes up, hopefully we will get her in a chair.

March 15th - Morning Update (Post-Op Day 4) - there was no afternoon update yesterday due to some craziness. Not kaylie, but with mommy. Kaylie afternoon was uneventful, she ate more, had a jello cup and 2 mini muffin bites. Ben said she slept threw the night, no problems.
After lunch yesterday I went back to RMH to shower and grab a few things. When I came back to the hospital I got severely sick. I went back to RMH to rest, and then just stayed the night there. I think it was a mix of something I ate for lunch and much needed rest. I feel great this morning, was back over here at the hospital early. Kaylie was up when I arrived, getting meds on board... This morning she will get in a chair! Here is to having a good day!!!

Then…. my most favorite update post from Facebook:
Afternoon Update (Post-Op Day 4) - I LOVE "turn around" days!! Today has been great…. after getting pain meds on this morning, she sat up in bed to get the collar on, walked to her bathroom (in our room) (has been using the bathroom in there now since), we walked two doors down to a chiari family (Not sure what I would do without you Laurie!!), walked to the playroom, Laurie helped clean up her hair a little, and put it in pig tails (there was a lot shaved off, and shaved hair mixed in with prep = massive mat mess)… AND she has eaten 2 whole large croissants, along with lots of water, and a Capri Sun!!!! We are doing good! We will be discharged tomorrow!!!! I am so unbelievable happy, proud of her and my husband Ben!!!! He was an awesome daddy nurse last night when I couldn't be there, and he must have the "turn around magic"!!! Hope everyone is having a great day…. B/c We Are!!!

Im SO grateful to so many things… my husband: for always being there, and picking up the pieces when needed. My family (especially my parents): yes, I love them for being there to take care of my other two little ones… but their support ceases to amaze me… when I got sick, I had to walk back to RMH (Ben was where he needed to be, with Kaylie…I would have had it no other way)… but my mom… was there. On the phone with me, make sure I got all the way in the RMH door, OK. I love their support, their love, their endless nurturing. I truly hope I am that type of parent with my kids. 
Our Team of Doctors: My kids seriously have the "PERFECT" team of doctors… I love each and every one of them… they are supportive, caring, compassionate, praying, smart, amazing, … the list could go on and on… we are lucky to have found all of them. 
Our Friends/Supporters - Wow, just wow… thank you for everything, and every prayers… you help us get through these difficult times… Its Love! 

And I wanted to leave this post for now with this… one of my favorite quotes, in times like these: 

No comments:

Post a Comment