Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, June 18, 2014

EVD day 10 - Surgery Results - Uncharted Territory

Meagan decided the night before surgery was the perfect time to party.  I was of course glad to see her so happy, but, the 20 hours days she was pulling were definitely taking a toll.  I was exhausted! It was great though to see her so carefree and silly.  I hadn't seen her be like that for so many hours at a time in months.  We had lots of snuggles and lots of laughs... it was a long, but, rewarding night.

The good thing about her being up all night is that she slept a good part of the next day.  This was a blessing in disguise because Megs had to be NPO (no food/formula) after midnight, so the longer she slept the next day was actually better.  Then she wouldn't be up and hungry all day. Dr. R spoke to me briefly about the plan for Meagan's surgery.  He would put in a high pressure valve to keep her pressure level consistent with the level we had on her EVD but in succession with that he would put a programmable valve.  He mentioned her possibly needing a third valve but said we would play that one by ear based on how she did.  We didn't chat long - he had some emergencies come in that had bumped our surgery back a few hours.  As frustrating as it is to wait, emergencies are never fun and of course our hearts went out to those families.  We hope all is ok with their children.

 Brian made his way over from work to wait with me.  We talked and sat and enjoyed time with Meagan.  She even got in a quick nap with daddy.  Finally around 4pm we got the call that Dr. R was ready for Megs.  She got her Versed from the nurse and we made our way to the pre op room at the OR.  Meagan was feeling relaxed by then from the Versed and noticed the large screen in the pre op room.  She looked at it, and said in the funniest voice ever, "Mama, I wanna watch Frozen."  It was so cute - I wish I had caught it on camera! Our nurse that day got such a kick out of that and promised Megs she could watch Frozen after surgery.

Megs giving us all a heart attack trying to go after her EVD drain. 
Um, no Megs.

Chillin with daddy before her big afternoon. 

Once we met with the anesthesiologist and the OR nurse, Dr. R came in one more time.  He asked if we had any questions and chatted with us a bit more about the plan.  He was very straight forward with us about the unique case Meagan presented and we appreciated that.  He may have not seen a kid like Meagan before, but, we had full trust in his skills and knowledge to handle her case.  Soon the OR nurse came back with the stretcher, and Meagan was off to surgery.  What was so interesting about the time between pre op and her going back to the OR was the amount of fluid that built up in such a short amount of time.  Meagan of course had to be clamped off the drain for the time being, but even in those few minutes she had gone from full soft fontanels and a happy mood to bulging hard fontanels and literal dry heaving.  It was an eye opener as to how reliant Meagan really is on that shunt, and also good to know her severe reactions for any problems in the future.

While she was in surgery, Brian and I decided to walk around.  We went to the gift shop and found the perfect balloon for Megs - one with Anna and Elsa from Frozen.  We walked it back to the room and then decided to go sit outside and eat ice cream while we waited.  We needed to pass the time somehow and that sounded like a great idea.  We made our way to the cafeteria, got our ice cream, and sat outside.  We had some good conversation, and also some nervous laughter.  Meagan has had much longer and more invasive surgeries in the past, but it's funny how nervous I felt for this one.  Probably the idea that this was all new along with the fact that the results are such a toss up got to me.  I'm normally pretty stoic but I was definitely feeling butterflies in my stomach the whole time Meagan was in surgery.   Brian and I captured a moment on camera (as we rarely have pictures together lately!) It wasn't until I looked at the picture after the fact that I noticed the real exhaustion and worry in both of our faces.  I guess we don't hide it that well all the time.

A few hours later, as we were sitting in Meagan's room, we saw Dr. R come by the window and into our room.  He said the surgery had gone well and he was happy with everything.  We were very relieved to hear that. He also told us he was astounded at the amount of fluid little Megs produced.  Besides lacking a proper way to drain her fluid, (her problem from birth) it appeared Megs was also a huge producer of CSF - all of this makes a lot of sense as to why she ended up with the problems she did.  Saying she's a tricky kid to balance all this out is an understatement. Balancing both kinds of hydro in a super sensitive kid like Meagan is definitely a challenge.  No wonder the slightest changes would produce such symptoms in her daily life.

Dr. R said because of the nature of the shunt system he designed, and Meagan's size..etc..etc.. he felt she was too fragile to stay on the Neuro floor post op.  He said he would feel better if she were in the PICU, and we were in agreement with that.  The Neuro floor nurses were disappointed they wouldn't have little Megs that night, but understood it was safer for her to be upstairs.  They were very nice, though, and said as long as they didn't get really busy they would hold our same room for us.  

We made our way upstairs to wait for Megs.  As soon as she was settled, the nurse said they would come and get us.  Well that happened a little sooner than we thought.  Apparently, as they were trying to get her settled in, Meagan woke up and asked for me, so the nurses complied and came and got me early.  Stubborn Megs - knows what she wants even post op! Megs was resting comfortably when I saw her and looked great for just coming out of surgery.  She peeked her eyes open a few times but mostly stayed asleep.  Her head incisions looked great, but everytime she tried to shift herself, she wimpered and acted like she was in pain.  Her hand would go up to her right shoulder and try to hit it.  When I looked over at it, I noticed she had a neck incision.  Dr. R explained that due to her small size, a neck incision was needed to help place that second shunt valve properly.  The skin there is just very sensitive, and it's an odd position, so I asked the nurse for Meagan to have some pain meds so she could drift off to a better sleep.  As soon as Megs had her pain meds, she fell asleep and slept the next 8 hours.

Meagan woke up whimpering again.  Her pain meds had lapsed so I called the nurse.  Meanwhile, Dr. R stopped by and said all looked good to him so he would release us back to the Neuro floor.  I was very glad to hear this and off we went back to our room.  Apparently the nurses were competing to see who got to come back and take care of Meagan - as a parent, you like to hear this because when you cannot help your child, you want people with you who truly care about your child.  The nurses here do and have been really wonderful.  As soon as we were back in our old room, Meagan seemed to almost relax a little bit.  I think it really helped her mental recovery to be back in the same place she had been for 9 days.  She even recognized her nurse and when she was finished giving her meds, Meagan looked at her and said "Fank you," even adding on the nurse's name.  She's just too much.

Later in the day, we had a visit from Meagan's Aunt and two cousins as they made their way out of town.  My mother in law was leaving from helping us the past week and she was riding back with them.  They stopped by to say hello and visit Meagan.  Immediately Megs lit up at the sight of her cousins and really enjoyed her visit.  She also got some more balloons from a far away Hydro buddy in Texas and loved playing with the strings.  Matter of fact, she even fell asleep holding on to them.

Waking up in her old room

 Sitting up! Loving her cousins!

Lots of special balloons for a special girl

Out...with the balloons... :)

As the day went on, the nurses and I decided to switch Meagan completely off of the pain med and go with Motrin only.. just to see how she did.  That way if her pain was in control with the Motrin it got us one step closer to going home.  Meagan did great with the Motrin - she was happy, sitting up, interacting with us, and being silly.  You could tell her incisions still hurt if she turned too quickly, or tried to use her arms to scooch forward and would stop and wince, but, overall she was very happy. 

Not long after Meagan woke up, her nurse came in and said she had a surprise for Meagan.  From behind her back she pulled out the movie "Frozen" and asked Meagan if she wanted to watch it.  Meagan lit up and was smiling.  I was smiling too at the fact that her nurse had remembered her pre op request from the day before. 

Meagan continued to be happy the rest of the evening.  I was glad  because her best friend Claire was able to come and visit!Brad and Amy, our friends here ( who you remember from many blog posts ago who first held Megs for us in the NICU) stopped by for a visit and brought dinner.  We sat around and chatted, enjoying our meal, while Meagan and Claire had a slumber party watching Frozen.  Meagan was even excited to show Claire all her balloons and was sharing very nicely. 

Brad and Amy left after a little while to get Claire home for bed just as it got near the end of Meagan's dosage.  It was actually good timing because it was  like a switch was flipped in Megs.  She got extremely irritable, started crying, and was almost "frozen" on her pillow and couldn't move.  It was clear although she was good on the Motrin, she could not stand any sort of lapse.  At this point the nurses decided to go ahead and continue the Motrin, but alternate it with Tylenol so she had better more consistent pain control.  She seemed to do well with that, so the plan is to continue that through the night.  

When Dr. R stopped by earlier in the evening, we had a long conversation.  Overall, he was still very happy with the result - her fontanel was full now, but soft... Meagan's mood (taking out the post op pain) was consistent with her mood over the weekend, and the incision sites looked great. A lot of the true result will be revealed once we get Megs back home and doing her normal day to day things.  These next few weeks will be a big tell tale time for Meagan.... surpassing the post op pain, bypassing any infection risk, and ultimately, getting back in to her routine and seeing how she does.  I'm very hopeful we turned a huge corner with Meagan these last two weeks.  We learned so much and the EVD revealed so many details about how specifically Meagan's hydro has manifested, that I think even if we have future bumps in the road, they will be more navigable because of this process.  

This was definitely a journey of uncharted territory, admitted honestly by me, Brian, and Dr. R alike.  But isn't that just life?  Anything we do is uncharted territory to a degree.  Going to school, getting a job, getting married, having children, starting a business, believing in a friend..etc..etc.. the list is endless.  But we do all these things anyway not sure of the outcome.  The situation with Meagan, albeit a little more intense, is really no different.  This is just our version of uncharted territory.  But when you have faith in God and rely on Him, you can find the support of family and friends and expertise and trust of a good surgeon to have a really great team can come together to navigate the unknown together.  We are so lucky to have such wonderful faith, family and friends who have lifted us up and as importantly, an incredible Neurosugeon who was willing to step outside the box and take a chance on Meagan.  I know the mental stress this particular process has caused him,  and the fact that he stuck with it and came up with an idea is not only impressive, but humbling.  

As parents, we know our children rely on us for everything. Feeding, clothing, medical care, comfort, safety..etc.  With a child like Meagan, yes, she relies on us for those things, but through us, she also relies on her neurosurgeon to help her get through life successfully.  It's part of our responsibility as parents to find the right surgeon with whom we can trust Meagan.  We had a hunch this would be the case from his first phrases to us when we met him  "She has a problem.  Here's how we navigate it.  And we see what she can do...."  Dr. R has proven that he is that person over many occasions, but especially these last few weeks.  Diving in to a case of a complicated kid like Meagan isn't easy, especially when she has already been through so much,  but he did.  Spending time with our family on hospital stays is hard with a busy schedule, but he does. Answering our questions is repetitive, but he answers them. And sometimes, you just need that "down time" with your child's doctor - the almost nonsensical and serious conversations all at wrapped in to one, to connect to your child's surgeon on a human level and realize the importance of the relationship.  The medical professionals with whom you trust your children become more than just "this doctor" or "that surgeon"... they become almost like family.  And Dr. R is that to us.  

We know this may not be "the" answer to it all - but it's a great start.  For the first time in forever,  (don't worry, I won't break into Frozen songs)... I feel like we are all, as a team, really getting to know Meagan's tendencies and how her hydro will have to be managed long term.  These last few weeks have been tough and drawn out, but in my opinion, very successful.  Navigating uncharted territory is tough and taxing.  It's lots of ups and downs and bright moments with dark moments intertwined.  But I know we can do it. With God's help, Brian, me, and Dr. R can tackle this together as a team.   I wouldn't have it any other way. And I don't think this little face would either.......

Meagan says "Bring it on." She's ready!

No comments:

Post a Comment