Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, October 26, 2013

Dare I Say

I almost don't want to type it so I don't ruin anything - but I will anyway.  Meagan had a great day today.  She woke up a bit fussy and was a little off.  She seemed like she was having pain from yesterday so the PICU nurses gave her some pain meds and she calmed down and fell back asleep.  After she woke up the second time, though, she seemed really content. A content I haven't seen last week.  She was happy and smiling and eve n starting to be a little bit silly.  When she would try to move her head of course she would wince, having forgotten about her incision site, but as soon as she would lay still again she was in a great mood.

Watching a little Monsters Inc. in the morning

It was a bit of a crazy weekend as my older girls had a Feis (Irish dance competition).  We were debating with pulling out of it, but with all that has gone on with Meagan, Brian and I decided they needed to go as planned. Dance, have fun, hopefully win some medals, and get a little boost after their 9 days away from me and Meagan.  So Brian took the four girls on his own and the three older ones competed in the Feis.  They had a blast - and on top of it all did awesome! They each won a ton of their dances and ended up having a great day. So hats off to Brian for "dad of the year" for taking the girls on his own to make sure they could stay in their routine and do something fun in what has been a rather hellish 10 days. Best dad ever!

The girls with all their medals - it was a great day! 

Meanwhile, Meagan had some visitors come by today - her buddy Claire and her parents - unfortunately since we were still in PICU Claire could not come back but her mom and dad came back and said hi to Meagan and were ever so nice to lend Meagan Claire's fashionable hospital gown to wear instead of the plain ones provided here. Now that's a good friend! She also had visits from L, a friend of mine I know through our children being involved in activities/school functions together. She was nice enough to bring me some lunch (fresh food.. yay!) and chatted with me for quite a bit.  The afternoon got even better when I was told that Meagan was doing so well they were going to transfer her out of the PICU.  I was very happy to be going to a regular room.

Meagan is so thankful for a buddy with awesome fashion sense

The rest of the night has really gone the same.  Her oxygen went a bit down again, but, it stopped around 93 and has held there and then will go back up - so no desats into the 80s like before. I'm hoping that doesn't happen again.  Otherwise she is doing really well on minimal pain meds, and seems so happy.  She is the best I have seen her in over two weeks.  Matter of fact, the nurses who saw her come back to a regular room even said "wow, she looks so much better!"  I agree.

Because she looks so good now, Dr. R seems like he's going to wait on doing anything else surgically.  It seems flushing out her shunt and shortening her catheter so it could be repositioned back in the correct spot to drain fluid has helped a ton - I think for now as long as she continues to improve, we are going to stick with that and save the external drain experiment for the next time we may have to deal with the symptoms of her small ventricles.  That leaves us with an approach in our back pocket, per say, to pull out when we may need it if she becomes symptomatic again.  Dr. R did swing by tonight late to just check on her head and incision - he said he would be by bright and early to talk.  I'm hoping that means we will be talking about discharge plans.

You can see Meagan's forehead is filling out more and puffing up - normally this would be concerning, but in her case we need more fluid back in there  - as crazy as that sounds.

That said I do have a lot of unanswered questions for him that have been mulling about my head today.  I want to make sure I have all my answers clear and explanations thorough so I feel comfortable taking her home especially with her new symptoms that have showed up this week.

I was laying with Meagan tonight playing and talking with her. I told her "You are doing so awesome."  She looked up at me and watched my mouth when I was talking to her just smiling and studying my movements.  Then, this happened:

Yep. I'd say I agree Meagan!

1 comment:

  1. You are awesome, sweet girl. :) So glad she is feeling relief.