Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, June 14, 2014

EVD day 6 - Waiting... and Hoping

I think sometimes it's hard for those outside of the "brain injury" world to understand exactly what people go through who struggle with brain issues.  Sometimes people look just fine on the outside, but have a hidden injury or condition they live with daily, and this is certainly true of children like Meagan who have hydro.  I think those outside our day to day hydro world also don't realize what a true roller coaster this is - especially when in the midst of treatment for acute issues that are happening.  People often say pictures speak louder than words - so keeping that in mind, this was Meagan yesterday:


And this is how she woke up this morning:

Dealing with a brain condition or injury is truly a process, in the most literal sense of the word.  Meagan had a GREAT day yesterday (for which we are very thankful).  It was the first full day we had no vomiting, and the first full day we really had a basically good mood the entire day.  It was also the first full day we saw her take all her feeds well and she even had a bottle for the first time in almost a week.  Brian, his mom and the girls stopped by to visit.  Meagan had a blast seeing her sisters, and the girls of course immediately jumped on the bed with her to hug their baby sister.

It's times like these that I really notice how close they all are to each other.  There just isn't "normal life" with one of the 5 missing.. and I love that.  Of course, visits like this are also "real"....and we still have giggles and sibling rivalry alike, listening and disobeying at times.. just like at home..but I love that too because it's life.  Matter of fact our nurse walked in just as I was talking with Maura for not listening - hey, welcome to a big family! Always lots going on at once :)  I will say, though, that the girls were overall very well behaved.  They haven't seen me or Meagan in a week - they have been working hard at camp and dance class - they have missed Daddy at work and had Grandma home with them all week.  It is a LOT of adjusting for 4 little girls under 9. I'm always impressed how well they do, though.  These times, although inconvenient and difficult are how they learn what it is to be in our "new normal."  It's how they learn that sometimes life throws you curveballs and you just have to go with it because in that process you know something good will come out of it - in this case, help for Meagan, their baby sister (whom they spoil by the way, and, rightfully so).

(These two - inseperable.  All the girls are close, and close to Meagan.  But Maura is closest in age and home with her most often during the school year.  Everytime just like clock work, Meagan always asks for Maura ("Mo-Rah", as she says), by name.  She absolutely loves her big sister.)

The rest of yesterday went well.  Dr. Reisner was happy with Meagan's scan - her ventricles have opened up a little bit, so he is glad we have something to work with.  Lots of decisions for him to make as to how to keep it this way over the weekend, so keep him in your prayers as he decides what is best for Megs next week.  He stopped by last night to say bye to Meagan.. he just rubbed her head and said to her "I'm so glad you are here."  He is truly a special soul.

Later on, Child Life came by and offered Meagan a new toy to play with. She had a blast.. she chose the pink computer that interacts every time a button is pushed.  She was pushing buttons all afternoon making letter sounds, numbers, and seeing what noises and music would play because of her actions.  It was very nice to have a different toy to look at after a week with her toys we had brought from home.  She seemed to really enjoy herself.


Fast forward to today.  As soon as Meagan woke up, I just knew.  I knew it was going to be a very rough day, at least at the start, for her.  She looked exhausted even though she had slept well.  She whined and seemed lethargic and acted like she was in pain. We tried laying down, sitting up..etc.. but she was just miserable. Before I knew it, she was crying and then came the throw up.  It wasn't as much as two days ago, so that's good, but, still, I hate to see her get sick.  Afterwards she was pretty irritable.  Crying, hitting her head, and acting up... We finally just laid her back down.  She looked at me and said "Mama, ug." (Mama, 'hug').  So we did that.. just hugged and snuggled for a little while.

Meagan not waking up well

I did call in the nurse and she gave Meagan some Zofran to help stop any more vomiting... she also gave her some pain meds and Meagan calmed down in a little bit just in time for my friend, Lisa to visit.  She brought me lunch (yum!) and a sweet stuffed dog for Meagan.  Soon after Megs dozed off to sleep again and slept for a long time.  

Meagan slept and slept the afternoon away. It's actually a good thing because I would rather her sleep with meds and be pain free to let her body adjust to the new pressures than be awake and uncomfortable.  

The ups and downs may seem crazy but it just is what it is.  This is the waiting...and waiting for the body and brain to adjust to totally new sensations can sometimes mean temporary pain or discomfort.  It is hard to watch your child hurt, but it is easier knowing this is on the path to better long term management of Meagan's hydrocephalus and subsequently her symptoms we have been having these last few months.

Once she woke up from her long sleep, she seemed content.  She opened her eyes and looked around.  Then she spoke.  What she said surprised me for two reasons. First, what she was asking for cracked me up - I had to ask her again what she said so she would repeat it, and yep.. it was what I thought I heard. I grabbed my phone and then continued to ask her and record it.  I found what she was wanting hilarious! I hope it makes you smile as much as it did me.  
Secondly, as funny as it was, the more amazing thing about what she said was the fact that she was almost using a full sentence.  What I'm about to say may sound silly or presumptuous, but, I think we are turning a corner.  If you remember last October, when we finally fixed her shunt issue she woke up from surgery and immediately said "Aweshum!"  Speech was the first indicator we had alleviated the problem, and that was really the start of her speech taking off these past 6 months.  Today starting from waking up, I noticed she has been using longer phrases and almost sentences.  It's amazing.  I think we are going to see some big changes in her speech over the next 6 months.

What Meagan said when she woke up:

From that point on, she did very well for the rest of the day. She was happy,  content, smiling, and enjoying reading books with me or watching cartoons on TV.  At one point, when I got up to use the bathroom, I actually turned around and caught her sitting up for the first time on her own this week!  In true Meagan style, she was also almost getting herself into trouble.  She was leaning over trying to get to her pump and was even saying "Beep! Beep!" in the tiniest little voice.  Luckily, I caught her before she could actually touch any of the buttons......but it was quite funny.

At that point I called in the nurse back in and had her go ahead and clamp Meagan's drain for a while so she could sit up and explore. (When she is on the drain she has to stay in one position so the results are not skewed).  I was happy Meagan seemed interested in looking at things and sitting herself up for a bit.  I had baseball on the TV and she ended up sitting for about 10 minutes switching between looking at a few toys on her bed and then going back to look at the TV.  She even started muttering and singing to herself.  She is such a ham. (And yes she is trying to sing "Let it Go")

After those 10 minutes, Meagan started to topple over onto her head.   I went over and laid her back down in bed. Even just that short time upright in bed completely exhausted her.  It surprised me at first, but, I have to remember she's dealing with a lot more fluid in her head now, so the slightest activity is going to tire her out until we can build back up some strength.  I told Meagan we had to stay laying down now because her body was tired and she was falling... and we also had to reopen the drain.  She showed me how she felt about that....

Overall, today in and of itself was quite a roller coaster... but so is this whole process.  Waiting is just part of life, but waiting always brings joy.  Sometimes it's the hardest thing to do, especially in a situation like this where I see my baby going through pain at times, but, I know it is going to open up so many more opportunities for her both with comfort and development.  I'm amazed at the things I heard her say this evening - I'm seriously wondering if the relief Dr. R has started this week with equalizing her pressures is sparking yet another jump in her speech.  Considering all her delays, her speech is her strongest skill - so it wouldn't surprise me if that's where we see the first signs that she is in fact at a better intracranial balance.  I don't want to count my chickens before they are hatched... but I'm willing to bet (a little) that it is in fact directly related to this week long shift we are trying to enable between her brain and fluid.  

Monday can't come soon enough! I'm anxious to get her repeat scan and have a sit down with Dr. R about what the surgical  plans will be for maintaining these new settings.  As it stands now she is 3 levels above where her current shunt can be turned... so I'm interested to hear his ideas on what kind of shunt system he will construct for her.  Until then, I will keep waiting... but now I am waiting and hoping... because there's just really no other way to be. Meagan showed me that today.

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