Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, June 9, 2014

EVD Day 1 - Black and White

Whew. It has been quite a long day.  Meagan's surgery is done and now starts the "harder" part.  I'm too exhausted to write anything profound but wanted to update our friends and family, so here is our day in black and white.

Waiting with Mommy

- This is how our morning started out.  I woke up to Meagan screaming and saying "ow" over and over again.  I have never been so glad to know that today was surgery day and the start of (hopefully) and new (and better) plan.

What I heard in the dark this morning

- Meagan was fairly upset all morning.  She typically gets upset at the hospital but today she had started off that way and was obviously uncomfortable.  What a day to have a pain episode - "bring on surgery" was all I could think as we made our way to the hospital.  We checked in. All registration went smoothly and she was whisked back quite quickly to the nurses to check her in.

Not happy about her surroundings

- Once we were in our room Meagan was hysterical - in the upset sense, not the funny sense.  She was crying still, fussing, flailing and just about every other behavior you can think of.  She finally pointed at her chair and said "CHAIR!! CHAIR!!"  I sat her in her chair and she calmed down.  She then said "ok bye"... I will give it to her - the kid is smart.  She assumed sitting in her chair = moving = going.  Even though we weren't going anywhere, I sat her in her chair for a while to help keep her calmer and let her relax a bit.

Thought she was so smart asking to go back in her chair

- Dr. R came in and explained what he would be doing.  We signed the papers, we discussed what our hopes are for the outcome of this procedure and the following weeks and then off she went to the OR. There was an emergent case that came in so she got bumped for a little bit, but soon enough she was moving right along.

Getting in a last snuggle with Daddy

- Surgery took a bit longer than expected.  The OR nurse said Meagan went down ok and was doing well but Dr. R had to go slowly.  He said that Meagan's ventricles were so slit like that Dr. R was being extra careful to not slip the catheter out of the ventricle for fear he would not be able to reinsert it.  I will admit, that was quite scary to hear.

 So tired but ready for this step

- Once Meagan was out, we were sent off to her room to wait for her.  After over an hour had passed we finally got a call from one of the nurses that Meagan's IV had crimped and stopped working so they were waiting on the IV team to come and re-stick her in a more sturdy place.

- About an hour later Meagan got up to the room.  The external drain didn't look too bad - the tricky part is going to be keeping her from grabbing or pulling at it accidentally.  We have arm braces just in case they are necessary but for now we are just watching her closely.  She is very sleepy/lethargic and goes between that and suddenly holding her eyes and being really fussy.  We will see how it goes through the night.

Stitched nicely so it's not bothering her too much

- Lastly, we already got a lot of information about Meagan and her particular situation.  Not only do we have the problem of the slit ventricles, but Dr. R said that now it appears Meagan has both forms of hydrocephalus (communicating and non communicating) going on, not just one. Dr. R said that because of the enormous pressure Meagan's brain was under at birth, and subsequently how it has fluffed out and the problems she has encountered along the way, there is scar tissue along the outside of her brain and also within her ventricles.  I actually found relief in this revelation because although a nightmare to tackle treatment-wise, it gave me an explanation for Meagan's "see saw" type of reactions we see.  Her trying to balance two types hydro now made sense. Dr. R also said that Meagan's catheter is extremely fragile in her ventricles - her ventricles are so slit like and collapsed that we need to be very careful it doesn't slip out for fear it may not be able to be reinserted.

Dr. R explaining Meagan's complications and 
what he hopes to do with the EVD

- The plan for now is to slowly increase Meagan's drain each day by a little bit in hopes we can pop open those ventricles more and more while maintaining a balance of tolerance behaviorally.  Once she reaches a pressure setting Dr. R feels is a good balance for her, he would then need to reinsert a shunt system that can handle such a setting.  He told us straight forward it was highly likely she was going to have and need at least 2 valves, if not 3.

Resting after new meds
- If Meagan's ventricles do not expand at all, then we are looking at true Slit Ventricle Syndrome.  This would be the hardest to navigate because since her ventricles do not move at all, it means we cannot manipulate symptom control or comfort through increasing or decreasing her fluid level.  The typical "immediate relief" fix for this issue is a CVR, which Meagan already had done in 2012.  So in her case, we could be "stuck" with quite a dilemma if we are truly looking at full on Slit Ventricle Syndrome.

Not draining too much yet after a few hours...we will see...

- Dr. R plans to continue with the increased pressure and recheck her ventricles as we go along.  He expects it to take one to two weeks.  He said, rightfully so, we are "in a marathon right now, not a sprint."  Boy is he right.  Lots of information and lots of outcomes to ponder.  Hoping the ventricles open up nicely and we see my sweet girl starting to get some long term comfort.

Snuggling Bear. Bear makes it all better.

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