What A Difference

If your child has a typical illness, you generally see the gradual decline.  The fussiness, the not eating well, then comes the cold symptoms, possibly fever, they are down for a few days, and then they groggily recover and a few days after the illness they are finally back to themselves, albeit tired and run down.

Just 3+ weeks ago, Meagan was solidly sitting in PT.  She was (much to her dislike, but nonetheless) being made to work on straightening her legs to start putting weight through her feet.  Her language skills were still taking off and she was a shimmying, active, wiggly little girl.  Yes, before this she had over a month of her episodes...but... she still basically stayed herself until the last 3 weeks.  It was rather quick in hindsight how she changed.  No more sitting at PT, having fits with her therapists and people who know her best, hitting her head, not babbling or talking as much, losing interest in doing things she used to seem driven towards.  Along with the vomiting and the general malaise, Meagan was really not herself.  Problem is she's a pretty resilient little girl - so when Meagan is "off," she may seem "normal" to an outsider, when in fact, I know she is not herself.

Resting

The reason I bring that up is because it amazes me how long it takes Meagan to recover from a cold or ear infection...but this week enduring a brain issue didn't impede her from bouncing right back once the root problem was relieved.  I was almost afraid to write yesterday's post worried we would wake up today not as good - but sure enough, Meagan woke up today in great spirits! She has been happy, smiley, and back to her wiggly self all day.  She even tried to roll around the hospital bed, wrapping and tangling herself up in wires.  Dr. R was about to make rounds and I knew it was our day to go home! But first I wanted to go over all my questions with him so we had a good plan laid out.

As the morning hours passed and Dr. R wasn't showing up, I got to the point where I needed some coffee.  I walked down the hall telling the nurse I would be right back.  I happened to run into Dr. R and told him I was getting some coffee... he said no problem.. he would be by in a little bit.

When Dr. R came into the room, Meagan was initially sleeping.  After talking a bit, she must have heard him.  She woke up, turned to the left and leaned up with her arm to give Dr. R a high five.  He laughed and said "oh she's feeling better." This was the first time all week she had acknowledged his presence in the room.  I explained to him the incredible change we had seen quite literally overnight since her surgery. I showed him the "awesome" video of her new word, and he observed her being so much more active and more of her personality showing through.  We were definitely ready to go home - but I wanted to know what next.


To recap,  in our 11 days inpatient, we found out the following things:

1. None of Meagan's issues are GI related.  Her GI system and gtube (thankfully) are working perfectly.
2. Due to Meagan's symptoms being episodic and intermittent, given the nature of the symptoms, and her ventricles being very tiny on her scans, Dr. R is fairly confident we are dealing with SVS (slit ventricle syndrome) at this time.
3. My hunch that her immediate issues stemmed from a shunt problem were correct.  Meagan's catheter had been pushed too far into her ventricle - thereby collapsing her vent and/or hitting the wall causing pain leading to her episodes.  Dr. R was able to go in surgically and flush out her shunt, stop it from dripping and stopping,  shorten the catheter, and reposition it so it was back in the fluid pockets in her ventricle in a much better place.

The left is the night she was admitted. The right picture is Friday night post-op. 

The catheter is in a much better fluid pocket now!

A 3D scan where you can see Meagan's open vaults (openings in her skull) 

and also the tip of the catheter on the inside.

The most long term issue is going to be that of managing her SVS.  Dr. R and I had a very long talk this morning before we were discharged.  We talked about what the next steps would be - revision, changing the valve, putting in that second catheter, totally changing the shunt, doing nothing, doing a combination of all these things - and basically the answer is we will see when we get to that point.  Dr. R said we just have to stay in good communication - watch Meagan for any recurring or new symptoms, and when it reaches a threshold we feel is impacting her quality of life again, we meet with him and all decide together what the next step will be and how to best execute it. He did sent us home with pain meds as well in case episodes start up again.  That way it gives us a buffer to watch and see if they escalate like this time, or if they are just a random occurrence due to weather or some other cause without making her suffer through them. Dr. R answered all of my questions about Meagan's condition and future management thoroughly and I felt really good that we both had a good grasp on what she would need in the near future.  He also said that the new placement of the catheter shouldn't move that much because he feels Meagan's brain growth is really at a standstill at this point - so he said any more drastic changes pushing that catheter out of place again shouldn't happen.  But of course we will keep a close eye on it.

The 3D scan on video

If you will remember a while back, Dr. R had given me a Hershey bar at an appointment because he thought I looked tired and needed some caffeine.  Since then, it's been an "inside joke" to bring him a Hershey bar as a token of appreciation.  So of course, this time, especially after the crazy ups and downs of the last week and a half, I had a Hershey bar and thank you card for him.  I gave him the gift and jokingly told him it was my "peace offering" for such a crazy few weeks and how we had butted heads a bit on what path to take.  He laughed and gave me a hug and said "it's like family - it's a give and take relationship and ultimately we work as a team for the best outcome"  I'm extremely happy that we went in almost two weeks ago - to finally figure out what was going on and have them see first hand what Meagan and all of us were dealing with at home.  As it turns out, my gut instinct was correct from the beginning - the shunt was the culprit. Dr. R agreed that moms know best and told me "I trust you a lot - so please let me know if she starts to show signs again of being symptomatic."

In hindsight and now finally on the other side of the crazy few weeks, I can understand the hesitation.  Meagan didn't present typically.... but to be fair,  since when does she present typically with anything?  This is what Dr. R had to struggle with as the surgeon - was there really something going on with the shunt? I think deep down he knew, as did I - but he also knew it would be a complex "answer" instead of a "quick fix" and probably wasn't sure the direction he wanted to take.  Even though there were tense and frustrating moments, Dr. R held Meagan's best interest at heart - being she does have other issues, we had to rule out the "easy solutions" first.  I knew that, but I also knew when those were cleared, we needed to look at the shunt.  Luckily Dr. R was willing to talk it through with me, and ultimately did do the very surgery she needed on Friday.   Finding that willingness in a surgeon to openly discuss and debate options for your child is one in a million. I am so thankful and blessed we ended up with him as Meagan's NSG. Now we watch and see how Meagan does with this new change to her shunt - Dr. R said it is unlikely Meagan will have this as a long term solution, but it is the first step in managing the small ventricles to bring her some relief.  We will keep in close communication with Dr. R's office if she becomes episodic again and I know we will figure out the perfect solution at that point for her symptoms.

 As we were wrapping up and getting our discharge papers, Dr. R was talking about how he had been operating since the previous day at lunchtime and had been on his feet so long.  He mentioned in passing how he was "getting too old for this."  I stopped and looked at him and said "Oh, no you aren't.  I don't trust anyone else to touch Meagan - you know her so well and all her complexities now, I don't trust anyone else!"  He kinda of smiled and said "Ok, so I will retire when she goes to college."  I told him "You have a deal."  In all seriousness, I would completely and quite literally sob if he ever retired before Meagan was an older teen!  I realize he's "just a doctor," but since my pregnancy, he's been the only doctor who ever offered a glimmer of hope for Meagan and that means a great deal to us.  He is more than just one of her specialists.  Dr. R walked by our room one more time on his way out ...he came in and set a KitKat bar down on the counter by me.  He said "I just want you to know you are a good mom.  A really good mom."  What a nice compliment that was after what had been an 11 day roller coaster.  We need a lot more Dr. R's in the world. At least Meagan thinks so, and I agree 100%!