Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, January 4, 2015

Snowball: Melt into Faith

Meagan did pretty well  through New Years Eve... she was a bit restless but slept on and off.  By New Years Day, I decided we needed to be a little more aggressive in waking her up and making her try to be up and about even if she didn't want to be.  She was still resistant, but, she seemed less groggy when I did try to wake her up throughout the day.  She played a little bit and seemed to show glimpses of herself again, but she still asked to go "goodnight" many times.  She still slept a lot.  By evening, it was clear that hopefully we were on the mend and could hopefully go home the following day. 

Waking up!

By later that evening, Meagan started to breathe heavily in her sleep.  I started to watch her and she would almost get so asleep she would stop taking a breath for a few seconds, then gasp, breathe heavily, and wake up only to try and fall asleep again.  I knew something was up because when she did this last time, we had the events of Saturday night unfold.  The nurse suggested we try to wake her up and keep her awake for a bit since her respiratory was falling so low - I agreed.  When we tried to wake Meagan up, though, she was resistant.  She just didn't wake up.  After several minutes of moving her, rubbing her hands and feet, picking her up, and basically disturbing her any way we could, she finally woke up and kept her eyes open.  But that's when I noticed the shaking - her eyes were constantly shaking..again.  She also was trying to speak to me and once again, just noise.  No words.  No clarity.  Just trying to speak and no success.  My radar immediately went up because this is exactly what had happened on Saturday.  The nurse came in and called in another nurse who luckily had been there the previous Saturday night and she said exactly what I was thinking "Oh my gosh, this is just like last Saturday."  We propped Meagan up, tried to talk to her, yet comfort her at the same time, and I noticed when I lifted her she barely had any head control.  She was trying to sit up but could not move her head or arms.  At that point, the nurse said she was going to page the on call Neurosurgeon. He of course wanted a repeat CT immediately.  We rushed Meagan down to the scan and then waited.  In the meantime, we gave Meagan more Motrin for any possible pain, and administered her seizure meds. (she had two seizures upon returning from CT).  I kept waiting for the thrashing to start - which was her final symptom the previous Saturday before she was externalized, but luckily, it never started.  Over the next several minutes, she seemed to calm down and just rest.  Her eyes were still insanely shaky, but her body seemed to relax.  She seemed like she wanted to pass out, so I let her.  I figured if it was just a "glitch" she needed the rest.  Dr. B came by after seeing another emergency and said that since her body seemed to be calming down, he was going to leave her to rest and re-evaluate in the morning.  He said on her CT her vents looked smaller so that was good and we would see if she stayed stable through the night.  Of course I did push back and question the smaller vents - which is actually NOT something you want in a slit vent kid - but Dr. B wouldn't budge.  Since Meagan's vitals were fairly stable and it was obvious he wasn't grasping her condition very well, I decided to let it go and see how she did.  I figured if she got terribly bad, he would be paged to come back.  If she didn't, then at least we dodged a bullet with another neurosurgeon diving into unknown territory and could talk to Dr. R at Meagan's follow up once he returned.  

Maybe not...wanted to lay down and cover herself with a pillow or sheet!

I'm not sure if it was just a recovery "hiccup," or a fluid adjustment, or all the prayers I said that night - but thankfully, Meagan woke up the next morning much much better.  Her eyes were still shaky, but her other symptoms seem to have subsided.  She had speech back and she had regained her head control again.  She did look a little puny, but after throwing up twice, she seemed to perk up.  Sometimes we will never know what was bugging her, but I was just glad to see her back to "baseline."  At that point we decided to really push her to get up in a wheelchair and go play - to see how she did with toys, interacting with others, and if we could get her to eat. 

It was fairly clear we weren't going to get her to eat much at that point - she still looked nauseous.  Child Life came in and got us a wheelchair.  They helped get her to the playroom where she perked up a little bit.  She became interested in the ball and basketball hoop so they wheeled her right in front of it.  She started to say "ready...??? go!" and then she would throw the ball in the hoop.  After a few times, however, she started to look a little 'green'.... she then threw up a little bit so we decided maybe she had enough basketball. :)  We cleaned her up and wheeled her up to the table where Ms. K and Ms. K (yep, two child life specialists whose names begin with K!) brought light up and music toys to the table.  Meagan was able to play there a bit more and her stomach seemed to calm down.  Before we knew it she was bossing everyone around asking for this toy, or that toy, or getting mad when a toy didn't work the way she thought it did - yep, Megs was on her way back.  Ms. K and Ms. K were getting such a kick out of Meagan - when they started laughing at her antics, I knew Meagan was probably on the road to going home.  

Looking a little puny when forced to sit up

After two pukes, she wanted to play

After the playroom, we saw "Elsa" Blaire (as Meagan calls Dr. R's PA) and we both decided if she continued to improve, we would be discharged.  Then at her follow up, we could talk about any lingering concerns or a few of the episodes Meagan had experienced during her stay.  I was comfortable with that and decided it was time to take Meagan downstairs to see if she would eat some food.  We made our way downstairs to the cafeteria where she promptly asked for chicken - when Meagan asks for chicken, I know she is starting to feel more herself.  It's one of the few solid foods she will eat fairly well and fairly often.  I decided to take her up to the lobby to eat because they have small tables just about her size where I could pull up her wheelchair.  She was very serious trying to sit up and nibble on some chicken.  I was talking to her about the different lights and colors around the lobby and Meagan was being her usual silly and cute self.  Next thing I knew, the family that had been sitting next to us approached me - the dad put a bag in  Meagan's lap.  I looked up and he said "just a little something for your sweet girl."  I thought it was so nice - I did tell him it wasn't necessary but he insisted that the gift was for Meagan.  Meagan opened the bag and found a little sock monkey inside.  She loved it and started to put it next to her in her chair as she continued to eat.  I told the dad thank you and thought his little act of kindness was so genuine and sweet.  After Meagan was finished eating, we made our way back to her room, sock monkey and all, and started to pack our bags. Meagan lounged in the bed and even snacked on some popcorn - all the while laughing and giggling.  It was so good to see those smiles. 

A very serious chicken eater

All smiles while snacking on some Cartwright's Popcorn 

Meagan's nurse went ahead and removed Meagan's IV so she could get dressed.  We packed our bags, and waited for the wagon where we packed all her stuff.  I picked Meagan up, and we said our goodbyes.  We have a running saying with a lot of the nurses and staff there when we leave in which we say "Hopefully we don't see you for a long time!"  We don't mean it in a bad way - but anyone who cares for medical kids, or has a medical kid themselves gets it.  We love love love Meagan's caregivers at the hospital - but really, we hope we don't see them for a long time because that means Megs is home with us thriving and doing well. :) 

We have a follow up with Dr. R soon in the coming week to have Meagan's staples removed and chat about the events of the last last few weeks.  Of course as soon as Megs got home she was incredibly happy to see her sisters.  She just smiled and loved on each and every one of them and melted into their hugs and kisses.  She also spent a lot of time getting reacquainted with her dog.  He still was in his cone for one more night, so she found it difficult to snuggle him, but she found ways to lean on him, pet him, and just love on him.  Unfortunately, we found out from the vet yesterday that we are probably looking at an 8 month window give or take with our sweet dog.  So seeing Meagan giving him so much love made me happy - with all she's been through, she must know more than anyone to never take a moment for granted.  She truly lives for every wonderful moment she has - she doesn't know any different. I love that about her because she reminds me how new and fresh every moment really is and how important it is to enjoy them to the fullest.

Meagan snuggling her puppy

We are hoping we have a long stay at home this time with Meagan.  She is so complex that this last trial has really taught me how wonderful Meagan's long term providers really are.  A very special thank you to the neuro floor nurses and techs - you know Meagan just about as well as we do and it is such a comfort when we are in hospital to have you at our side. Thank you to the Child Life specialists - you go out of your way to always bring Meagan something special to help her stay be as "fun" as it can be and help us to get her back to her "normal" so she can have a successful transition home.  And finally thank you to Meagan's neurosurgery team - of course Dr. R for her long term management (which goes without saying), but also to the two Dr. B's and Dr. S and Dr. M who all helped us manage her case during these last two consecutive stays.  We fully understand it is not easy to jump into any case, but especially a little complex miracle like Meagan and we appreciate you sticking with us, listening to us, and most of all, working with us to try and tackle what was best for her when Dr. R was out of town. 

Meagan back to her goofy self - it's what makes her so infectious!

Anytime Meagan has problems arise, it is always concerning and worrisome - but having problems arise with her usual trusted surgeon out of town was especially nerve wracking.  It was more of a test of our faith because the one person we trust most with her here was absent.  But then that's what faith is, right? Trusting even when we don't exactly see what the plan is - believing even when we don't know the outcome, and giving our worries to Him when we are in an unfamiliar situation.  At times over the last few weeks, Meagan felt so far from me.  The night she was the worst I had ever seen, I honestly was at a loss - it was the first time I felt fearful for the outcome.  We were so far from an answer, Dr. R was so far from her, and I felt far from grasping what was going on.  But then, as St. Monica said, "Nothing is far from God."  If nothing is far from God, then He is not far from us.  Which means our faith is there always to get us through.  I have learned in the last few weeks that when the snowball starts to build, we can conquer it through faith. We may not have the answers ourselves, but by melting into our faith, God will provide the clarity, the comfort, and the peace we need to see it through.

From our family to yours - we wish all Meagan's family, friends, and followers a happy and healthy New Year......

"We are at Jesus' disposal. If he wants you to be sick in bed, if he wants you to proclaim His work in the street, if he wants you to clean the toilets all day, that's all right, everything is all right. We must say, "I belong to you. You can do whatever you like." And this ..is our strength, and this is the joy of the Lord."    -- Mother Teresa

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