Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, June 20, 2014

Not The Same - EVD/Shunt Revision Homecoming

Dr. R made rounds on Thursday and chatted with us a bit that morning.  We all agreed that if Meagan did well, we would probably take her home that day.  While he is careful with his patients, he is also really good about getting patients home to recover, which I love.  As the morning went on, Meagan slept.  She slept and slept until about mid day.  She started to stir, so I looked over at her bed and saw her holding her head - my heart sank because I know that behavior so well by now - she was going to get sick.  Sure enough, within seconds, Meagan projectile vomited all over the bed.  The nurses came in to help me and noticed Meagan was really lethargic.  Her eyes were glassy and she just looked "sick."  I began to worry it was going to be a repeat trip to the OR.  We tried to sit Meagan up, but she would only say "no no no!" and keep her eyes closed.  She drifted off back to sleep, even when we were cleaning her up.  She slept and slept again.  The nurse was very good about coming back to check on her.  She just didn't like Meagan's overall behavior, and neither did I.  She decided to give Dr. R a call and just let him know.

It was now the afternoon.  Within a few minutes of the page, Dr. R was coming down the hallway.  As he turned to come in to our room, Meagan literally woke up, sat up, and pointed at him with the most ornery grin I have seen to date.  Dr. R immediately smiled knowing it was going to be ok, but at the same time, he and I were also both so frustrated with her! "Meagan!" Dr R said in a 'scolding' yet humorous tone.  I was right there with him. He did go ahead and look her over and what he noticed was her belly was distended.  It was quite large and also tense.  Dr. R concluded that her belly was just adjusting to absorbing the new fluid levels from her new shunt system... and had also just had over a week where it was not doing so since we had her on an outside drain.  He said he would watch her for the afternoon and if all went well, that was probably the culprit and we could still go home.

Meagan did great the rest of the afternoon.  She was happy, smiling, being silly, babbling, and sitting up all over her bed.  Dr. R and Blair came back and it was obvious we were going home that day. They were all smiles as they came in and Meagan was completely happy.  Dr. R said he knows me well enough he was comfortable letting us go home if I was comfortable, and that her belly should regulate soon enough with time to all the changes with her new shunt.   He said if anything were to happen to of course come right back in and he would look at her.  I was completely fine with that and so we started packing up to go. Before Dr. R and Blair left, I had two thank you cards for them.. and of course those weren't complete without holding up our Hershey bar tradition.  (If you aren't caught up on that tradition, click HERE and it is explained at the end of that entry.)  As they left the room Meagan frantically waved good bye.  Meagan said loudly "Bye Elsa Blair!" to Blair... and waved and blew a kiss to Dr. R.  I asked her "Can you say Dr. Reisner?" Meagan said, in a barely audible whispered voice "Reisssnerrrr."  It was hilarious. I tried to see if I could get her to say both names on video to show them at her follow up appointment - she did pretty well, but she still whispers Dr. R's name.  Why, I have no clue, but it makes me smile.

Since coming home, Meagan is right back in to her normal routine.  She is playing with her sisters, exploring her toys, scooching around on the floor, and chatting up a storm.  Her speech is still really taking off. Physically, she is still recovering from a 2 week hospital stay and two brain surgeries... so I'm not evaluating any of her motor skills as of yet.  But considering all she's been through these last two weeks, overall, I do feel she is stronger.  She is back to drinking her bottles, and is even drinking an ounce or so more than she used to the last few months.  She seems to be wanting to do more on her belly and her knees and is trying to even pop up onto her knees.  More importantly, I have seen no pain episodes since she has been at this new pressure....I'm praying hard that they stay away for good.  So we will see where this leads in the next few weeks when she is even further through recovery and back in to her PT schedule.

Megs playing with her toys.
One thing we always learn after lengthy hospital stays is what an important piece of our day to day Meagan is.  To all of us.  With her gone and me with her, it's just not the same.  The girls don't feel as much peace at home, I don't feel as settled being out of our routine, and Brian is more stressed trying to hold the fort down without me...and of course misses his little Megs.  It's always such a wonderful feeling to get home and watch Meagan get back in to her comfort zone... and watch her sisters relax and just emit the happiness they feel that Meagan is finally home.  Kaitlin said to me, "Mom, when Meagan isn't here, nothing is right.  Things get crazy, and I get scared, and I miss her......it's just not the same........."  Boy isn't that the truth.  And are we ever grateful that she is right back home with us where she belongs.  Hopefully, for a very long time.

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