Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, October 27, 2013

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.


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%!

Saturday, October 26, 2013

Dare I Say

I almost don't want to type it so I don't ruin anything - but I will anyway.  Meagan had a great day today.  She woke up a bit fussy and was a little off.  She seemed like she was having pain from yesterday so the PICU nurses gave her some pain meds and she calmed down and fell back asleep.  After she woke up the second time, though, she seemed really content. A content I haven't seen last week.  She was happy and smiling and eve n starting to be a little bit silly.  When she would try to move her head of course she would wince, having forgotten about her incision site, but as soon as she would lay still again she was in a great mood.

Watching a little Monsters Inc. in the morning

It was a bit of a crazy weekend as my older girls had a Feis (Irish dance competition).  We were debating with pulling out of it, but with all that has gone on with Meagan, Brian and I decided they needed to go as planned. Dance, have fun, hopefully win some medals, and get a little boost after their 9 days away from me and Meagan.  So Brian took the four girls on his own and the three older ones competed in the Feis.  They had a blast - and on top of it all did awesome! They each won a ton of their dances and ended up having a great day. So hats off to Brian for "dad of the year" for taking the girls on his own to make sure they could stay in their routine and do something fun in what has been a rather hellish 10 days. Best dad ever!

The girls with all their medals - it was a great day! 

Meanwhile, Meagan had some visitors come by today - her buddy Claire and her parents - unfortunately since we were still in PICU Claire could not come back but her mom and dad came back and said hi to Meagan and were ever so nice to lend Meagan Claire's fashionable hospital gown to wear instead of the plain ones provided here. Now that's a good friend! She also had visits from L, a friend of mine I know through our children being involved in activities/school functions together. She was nice enough to bring me some lunch (fresh food.. yay!) and chatted with me for quite a bit.  The afternoon got even better when I was told that Meagan was doing so well they were going to transfer her out of the PICU.  I was very happy to be going to a regular room.

Meagan is so thankful for a buddy with awesome fashion sense

The rest of the night has really gone the same.  Her oxygen went a bit down again, but, it stopped around 93 and has held there and then will go back up - so no desats into the 80s like before. I'm hoping that doesn't happen again.  Otherwise she is doing really well on minimal pain meds, and seems so happy.  She is the best I have seen her in over two weeks.  Matter of fact, the nurses who saw her come back to a regular room even said "wow, she looks so much better!"  I agree.

Because she looks so good now, Dr. R seems like he's going to wait on doing anything else surgically.  It seems flushing out her shunt and shortening her catheter so it could be repositioned back in the correct spot to drain fluid has helped a ton - I think for now as long as she continues to improve, we are going to stick with that and save the external drain experiment for the next time we may have to deal with the symptoms of her small ventricles.  That leaves us with an approach in our back pocket, per say, to pull out when we may need it if she becomes symptomatic again.  Dr. R did swing by tonight late to just check on her head and incision - he said he would be by bright and early to talk.  I'm hoping that means we will be talking about discharge plans.

You can see Meagan's forehead is filling out more and puffing up - normally this would be concerning, but in her case we need more fluid back in there  - as crazy as that sounds.

That said I do have a lot of unanswered questions for him that have been mulling about my head today.  I want to make sure I have all my answers clear and explanations thorough so I feel comfortable taking her home especially with her new symptoms that have showed up this week.

I was laying with Meagan tonight playing and talking with her. I told her "You are doing so awesome."  She looked up at me and watched my mouth when I was talking to her just smiling and studying my movements.  Then, this happened:

Yep. I'd say I agree Meagan!

Friday, October 25, 2013

Shunt Revision #1 - well, sort of......

After much back and forth and weighing options as to where to turn next, Dr. R ended up taking Meagan back for exploratory surgery today.  We butted heads a little bit on the plan as he is very conservative surgically.  Don't get me wrong, I'm completely ok with that - the last thing a hydro parent needs is a "surgery happy" neurosurgeon. However, with a kid like Meagan who is pretty complex, when she presents with repeated symptoms and all other logical causes have been dutifully ruled out, my feeling is surgery to explore her main issue (brain and shunt) cannot be ruled out.  Dr. R and I differed on this a bit and I could definitely feel tension in the room before he took her back.  I stood my ground, however, because I truly felt in my gut we needed to look into her head - I felt this is where the true root of her recent symptoms stemmed from and warranted surgery.  Initially this was not my idea - he had said a few days back if all her other tests came back clean, the next step was to explore the shunt.  My guess is that his hesitation today was simply because Meagan was not in acute danger - she wasn't crashing or in an immediately threatening situation so he hesitated.  I understand, but ultimately, Meagan is my child.  She has been hurting. Throwing up. And now this week losing oxygen at night and having new strange tremors (which happened AGAIN last night by the way).  It's my job to push for what could possibly provide insight into relieving these things, and unfortunately this time, it seemed the answer was a shunt surgery.
Another night of desats and tremors

Another puke and pain episode

Dr R's plan was to possibly revise her shunt if hers proved to be not working correctly and also to place a second catheter in the back of her head, as that area has a lot more fluid than the front.  In a simple visual, there is a lot of brain in the front of her head, and a lot of fluid in the back of her head.  The brain in front has very little fluid - which is actually not good. We do need a certain amount of fluid in our brains to keep our brain tissue moist and things flowing properly.  So Meagan went to surgery around 1530 today.  About an hour later I got a call she was still being operated on but things were going well.  I was anxious to hear the results of what Dr. R found.

Snuggling Daddy before surgery

Dr. R came into Meagan's hospital room to chat with me.  But in Meagan, her insides have done essentially the opposite of what most Hydro kids who are shunted do - her ventricles have shrunk so much that they have almost collapsed.  Therefore, when the catheter sucks fluid from her ventricles, after a certain amount of time there is so little fluid there that instead of CSF, the vacuum from the shunt simply pulls the ventricle walls in on each other and they collapse.  This causes extreme discomfort, pain, and can definitely account for Meagan's behavior before she vomits.  Once she vomits, the forceful nature of it pops those ventricles open temporarily, thereby relieving the immediate pain, also explaining why she was happy after a vomiting spell.  Dr. R also noticed that at the back there was so much fluid it was really imbalanced with how the front of the brain needed to drain.  It's like the front has too little fluid, and the back has too much.  Essentially, to make an easy visual, imagine Meagan's head like a big circle.  The back half of the circle is filled with fluid and the front half with brain tissue.  The top of that circle is open (from where she had her cranial surgery last year)... these spaces provide pressure relief, but in Meagan's case, it's almost like her brain tissue is "running" for those vaults - craving that space, thereby leaving a big vacuum in the back.  On top of that, add her collapsing slit like ventricles, and the fact that she has very little fluid to drain, and we have a whole big mess.  People may initially think too little fluid is good - as her whole problem at birth was too much. But it isn't so.  Just as too much fluid can cause symptoms and brain damage, so can too little.  It all has to be in balance, like most things in our bodies.  So it presents a whole list of new problems and complications as to how to "fix" this.  

The clinical term for some of what Meagan is experiencing is called Slit Ventricle Syndrome.(This is also an excellent article).  And for lack of a better word, this is an absolute beast to deal with.  Because of all the push/pull, back and forth, too little/too much fluid, it is a nightmare to manage.  Many times, kids are left to "band aid" solutions - medicines for the pain episodes, and no way to really "pop" those ventricles back open. Sometimes there are ways but it cannot be done at the time, or cannot be done immediately, and sometimes no matter what, symptoms continue to recur.  However, this is where my thankfulness for Dr. R comes into play.  He refuses to let Meagan just sit and be a victim of SVS.  He, instead, wants to fix it.  That said, it is not an easy fix. And certainly not a fast one, nor a guaranteed one.  But at least he wants to be proactive.  

Meagan's MRI - notice a lot going on up front (your left) with little fluid and a lot of fluid towards the back surrounding the back 

 Meagan's CT scan is on the left below - notice her shunt catheter almost sticking "in to" the tissue and the lack of open ventricles in her brain (as opposed to the typical scan below where you can see the black "butterfly" area in the center which is what normal fluid filled ventricles should be.  In Meagan's scan, you can't really see her vents at all - which is what Dr. R found in surgery today - hence the term "slit like").

On the way up to the PICU after surgery, Dr. R had Meagan go to CT to obtain a 3D scan of her head post-op.  This, he said, will provide him with the "road map" he needs to start putting together a management plan for Meagan.  Sometimes it will mean watching and monitoring and sometimes it will mean possible revisions or extra catheter placements, but overall, we need a plan.  For tonight, his goal is to just see how she does following this initial surgery.  He ended up not changing Meagan's shunt - but he did notice it was not dripping evenly.  The CSF would drip, drip, drip, and then stop, and then flow, and then drip, drip drip.  This is not ideal at all.  He cleaned out her shunt, flushing it to flow more evenly and measured all the pressures in her head to bring things more to a balance.  Next, he noticed because her ventricles were so slit, the catheter was not in the right place at all.  It was too close to the ventricle wall, thereby sucking it in intermittently, and contributing to Meagan's symptoms.  He shortened the catheter and re-placed it more central to her ventricle so it was in a better spot to minimize collapse.  He was happy with this and felt now that he knew a lot more about how complicated Meagan's situation was, we could stop at this point.  If by chance she doesn't do well the next day or so, he is considering putting in an EVD (external ventricular drain) into the back of her fluid space.  He would let it drain and watch over a certain amount of time how it drained and how she handled it.  If it seemed to help, at that point he would consider putting a second permanent catheter into the other fluid space in the brain. So for now it's watch and see and if he needs to take her back to the OR tomorrow he will.

Bloodshot eye - always gets this way before an episode.

I'm sure it seems like practically a book I just wrote above - but, that's how tricky Meagan's case is.  Dr. R said in doing over 10,000 shunts in his career he's never had a case like Meagan. Go figure. :)  He said she is just so incredibly complex and tricky that the simple answer just never seems to fit with her as it always has a domino effect. It was wonderful to talk with him in detail, and really have a heart to heart about the situation.  The conversation was informative, extremely detailed, and also light hearted.  We seemed to get back on the same page and agreed to work together as a team to manage this new situation with Meagan and get her the best relief and best improvement possible.  We joked a little bit about the tension earlier in the day, both realizing we had been stressed about Meagan's situation and had been unclear with each other about what the expected outcome was.  I reiterated how grateful I was for such a good doctor looking out for Meagan and her needs, and he repeated how glad he was I was such a good advocate for Megs and stood my ground when I felt something was wrong.  I know he truly cares for her - the way he snuggles her, the way he so passionately wants to do his job, down to the way he even makes her incision crooked so her hair doesn't grow back in a straight line and never shaves her hair - every way he deals with her is with love and wisdom, and that is irreplaceable.  

Meagan's incision - such care taken to not shave any hair 
and make a crooked hairline so things grow back naturally.

So that is basically where we stand.  Your thought now may be "uh, exactly where do you stand?" LOL... it's a ton of information to digest.  Dr. R said if I read on everything going on with Meagan I would probably never stop - that's how much information is out there, and how varied and complex her situation is.  I am honestly not surprised - Meagan has never been a "by the book" kid, and so why would she start now?  I'm very hopeful we can get this under control and also very hopeful we can see her new symptoms (her desats and tremors) subside as we move forward.  It has been quite a crazy 9 days getting to this point, but I feel like we are finally at the top of the mountain.  As I look forward, there is a larger mountain in front of us for sure - but I don't' feel intimidated because we know now what is in store.  And with great family, great love, and great prayer around Meagan, I have no doubt she will be standing atop that next hill in no time.  Dr. R won't settle for anything less.  And neither will we.

 Resting post op...rocking out the Halloween pillow in the ICU

Tuesday, October 22, 2013

Paging Dr. R

Meagan was able to go through her regimen of GI testing over the weekend.  She had upper GI studies, motility studies, reflux, gastric emptying, bloodwork for all the digestive enzymes and important digestive organs like pancreas and liver.  They slowed her feedings down to only 40mL/hour (basically a little over an ounce per hour drip) to see if this helped as well.

All of Meagan's GI studies came back completely normal.  This is great because it means she has no trouble digesting her food, no reflux, and all her bloodwork and organs and enzymes that have to do with digestion are functioning perfectly.  It's "bad" because it only offers another exclusion for her behavior and vomiting instead of a definite answer.  But that's ok because narrowing down by exclusion is important as well.  I honestly wasn't surprised - based on the lack of pattern as related to food and her behavior with her head before her vomiting, I doubted it was GI at the root of the cause - but still was one that had to be ruled out.

GI did come by and go over all her results in detail and offered a "solution" from their end even though nothing came out obvious on her testing.  They talked about putting in a G-J tube.  Basically, Meagan keeps her g-tube (which goes into her stomach) but they also put in an additional j-tube which would empty direction into her intestines.  The point of this is to feed directly into it bypassing the stomach, and therefore, bypassing any vomiting.  The idea of it sounds nice. Of course I don't want Meagan to vomit.  However, the logic doesn't click with me.  The root of Meagan's pain/vomiting episodes are still up in the air - and GI has been ruled out.  The vomiting, as gross as it is, is her "relief mechanism" at the end of her irritable/fussy episodes. And with a J-tube inserted, she would have to go on continuous feeds all day, everyday.  We couldn't do anymore bolus feeds.  Considering there was no absolute evidence on ANY GI study to warrent this shift in feeding, considering the vomiting is her only relief, and considering she couldn't have tube meals as we have meals everyday and keep that feeling of "being full" my answer was an easy no.  If there had been a blaring GI problem of course I would have tried it - but - I refused to just put a "band aid" onto a problem we had no explanation for as of yet.

Meagan had her MRI yesterday morning.  They wanted to do the first part of the MRI and then add contrast, which would highlight certain things in the brain including CSF flow, which would be important to see in Meagan.  She was in the scan about 40 minutes when they nurse came and said they were going to have to pull her out because she was having trouble breathing with the sedation.  This was strange to me because she has had two previous sedated MRI's and several surgeries with anesthesia and had no problems.  They brought her into the room and she wasn't well.  The doctor was confused though because although she was having trouble, she sounded pretty clear in her lungs.  The nurse went ahead and gave her an Albuterol treatment and put her on oxygen.  Within about 35 minutes, Meagan looked less pale and started upping her sats (how well she is saturating oxygen).  It was disappointing because of course I dont' want her feeling badly, and also the scan had to be stopped before the contrast which was an important part for us to see.  Once she was stable we headed back to the room and waited to see what the plan was.

Despite her shaky morning with the MRI, Meagan really had an awesome day yesterday.  She was silly and smiling. She was babbling and having a blast being such a ham with all the nurses..etc.  I figured when Dr. R came back this nmorning, we would simply have a meeting about everything and see where to go from here.  Little did I know of the night Meagan would have ...

Meagan had an awesome day yesterday, playing with her Minnie and smiling

Meagan started to thrash around 8:15 pm - she was thrashing back and forth, swerving her body to the side so her head would hit the side of the bed, and grabbing at her head and her eyes.  She was obviously having pain or a headache.  I was waiting for the follow up vomit, but instead she finally ended up passing out asleep.  I was relieved so we could both get some rest.  I kept getting woken up by Meagan's alarms though - her O2 sats kept going off.  The little sensors are pretty finicky so I assumed they weren't picking up well.  After over an hour of them going off, the nurse came in to check.  Meagan wasn't holding O2 sats above 87.  First the nurse tried to change the leads and reposition Meagan to make sure that wasn't the issue.  Meagan still could only hold at 87 sometimes dropping to 85 or below.  The nurse immediately went and got some oxygen.  She put Meagan on a cpap of about a half liter of air.  Her numbers didn't change.  Finally her numbers went up to 91 with 2 liters of air.  This still wasn't satisfactory so respiratory was called.  They checked her out and found it so strange because once again, she sounded clear...but obviously her body wasn't saturating the oxygen as it should.  After some high flow and a little time, Meagan's sats started to slowly creep past 91 to 92, and then slowly walked up to 100 over the next few hours.  She stayed that way and so the nurse tried to go ahead and wean her off the oxygen by morning. She slowly turned it down and Meagan seemed to tolerate it ok so by 8am this morning, Meagan was down to no oxygen.  It was such a strange occurence.  Meagan has come out of major brain surgeries on room air and 100% saturation, so who knows what fluke kicked off last night's occurrence.

One strange new thing was her hands.  Last night during her oxygen issues, she started to have hand tremors mostly in her right hand.  It would tremor very fast and then her fist would clench up.  If I tried to unclench her hand, it was like peeling plywood boards backwards - they were extremely stiff and didn't want to relax.  This happened about 7 times over the few hours she was struggling with her oxygen and then they subsided.  Not really sure if it was seizure related, or simply oxygen related but I will notate it and be sure to update her neurologist when we meet up next time.

After quite a horrific night, Meagan woke up in a pretty good mood today.  She was herself, happy, silly and just really snugly.  Dr. R was back in town so I knew once he came by it was time to buckle down and make a plan.  Early this morning, he made his way to our room.  He was surprised we were still here but also knew we had received no answers to her issues.  He really didn't' want to believe it was neurologically related. I get it. You don't just go to the brain first. But - she's a brain patient first.  All her problems stem from her original issue. And we had done due diligence and vastly explored any possible GI or blood/imbalance issues she could have had contributing to her episodes over the weekend.  Dr. R and I went over everything together and both of us were equally frustrated.  I know he doesn't want the head to be the problem - and likewise he wants a sraightforth answer, as do I.  But being all else has checked out, we have to explore the neuro side of it.  He was very up front with me and said that he wants to complete the MRI she couldn't yesterday.  He said he wants to finish up the last half of it and get the contrast he needs to see more.  I was fine with that so that is step one in the morning.  If nothing is blaring on the MRI, the next step will possibly be for him to flush her shunt - just to make sure that from top to bottom it is flowing correctly and we don't miss any hidden clogs/kinks.  If that is ok, then what we are left with is the result of her overdraining - slit ventricles (that I mentioned in the first update a few days back).  The problem with SVS being the cause is that there's not really much we can do.  The "answer" for slit vents is to open up the skull.  Well Meagan already had that done last year when her skull had fused and Dr. R had to go in to do the cranial vault reconstruction.  So she's already had the "solution" to SVS done.  What does that mean for Meagan? That if the end result is SVS, there's really not "much" we can do about it at this point.  Perhaps exploring a different shunt..etc.. is a reasonable next step down the road, but it certainly wouldn't be now or this week.

So that's where we stand with the Megs.  We truly thank everyone who has been praying for us and offering help in so many ways - from emotional, to helping with the kids, to financial, to just knowing you are there if we need you.  I would ask as crazy as it sounds to please pray we find a definitive answer somewhere - on the MRI or on the shunt.  The "non answer" when you have a symptomatic kid is no fun.  Especially being that her problems are episodic in nature, the lack of pattern, time of day, or knowing when she will have pain and vomit again is very frustrating.
  We will see what tomorrow brings and hopefully we will have a little more clarity as to the direction we are heading.  I really trust Dr. R with Meagan - I know he is just as frustrated as I am with no definitive cause of all this - but I know just like always he will take care of her as best he can. We are very blessed to have such an amazing doctor be in charge of Meagan's long term care.  We appreciate him so much and how he listens to and works with parents. It really helps the process of working through issues, especially random ones like this, so much easier.

Yep that's a diaper on her foot. So the stinker doesn't pull out her IV! lol

Saturday, October 19, 2013

Jekyll and Hyde

Meagan has never really been a 'puker'... she seems to handle illnesses well and actually has never had a stomach bug as of yet (knock on wood).  So when she does throw up, it sends off a red flag to me because typically she seems to have a strong tummy.  In August, she had a few episodes where she would be sitting up playing and then suddenly be fussy and puke out of nowhere.  It would be forceful and go everywhere but then she was fine. And we would go days or even over a week without any other episode.  After her second birthday at the end of September, I noticed that it was happening a bit more, so I decided to keep a log to see if there was any pattern or a direct relationship to her feeds, etc...

We have been keeping this log now almost a month.  I finally called Dr. R's office last week because I was fed up.  Dr R's office said to watch and see how she does this past week and we would re-evaluate.  I was ok with that - she still had times and days where she was herself and I saw no reason to rush in.   But honestly, I was fed up with having a completely happy kid one day, to having a kid crying with pain and then projectile vomiting everywhere the next.  Now, even with Meagan's hydro, the first few times she did this we didn't go to the doctor or even the ER.  Hydro kids still get 'normal stuff'...so we waited it out to see if it was a viral bug, or a tummy ache from a feed.  But as the weeks have gone on and I have logged episodes, and noticing there is no pattern in time of day, situation, or frequency, my excuses and frankly my patience wore thin. Wednesday night was the final straw.  Meagan had three huge pain/puking episodes that night so I said that is it and took her to the ER.

Meagan post episode - totally fine and seems relieved.

Now EVERY parent will know that feeling when your child is so sick, or when they have intermittent things wrong and you finally go to solve the problem...they are mid-episode...and you walk in the doctor's office or ER and suddenly they perk up and smile or wave at people.  You are happy they are happy - but inside you are like "Really??" because you know you are back to square one with now having to explain what you are seeing at home.  Well, this time Meagan must have wanted some answers because as soon as I walked up to the ER with her, bam. She projectile vomited EVERYWHERE.  The floor, me, her clothes..I mean if you were within 3 feet of her, you were not in a safe zone.  I actually was slightly relieved because FINALLY they could see what I have had to deal with at home and I wanted answers.

The nurses saw everything and immediately assisted me in cleaning her up and got us a fast pass to a room.  We saw the doctor almost immediately and he was extremely nice and receptive.  He of course ran a CT scan and the usual checks for hydro kids.  He also ran all 'normal tests' to make sure we didn't miss anything.  Her white counts and other blood work was totally normal. No fever. The CT scans were said to not look "that" different but enough reason to investigate.  She was admitted for testing and observation. I was relieved to be honest because I can't keep going with her fine one day, and then projectiling all over my car, or the bedroom, or her clothes.  It's not that I'm complaining - I do not mind one bit cleaning up after her or dealing with the little mishaps of life. But, it is about a quality of life issue - for her and the whole family.  If Meagan wakes up one day and has a pain/throw up day, that's not fair to her - if there is a solution I can seek out to remedy that.  If she's having a bad day and it interferes with my other girls' activities, or important things to them, that's not fair to them either - we have to function as a whole family the best we can... and if there is a remedy to these episodes, it needs to be sought out.

There are a few theories circulating - some are GI related (formula intolerance, motility issues, something hidden inside we can't see that is intermittently obstructing her ability to digest all her food) and some are shunt related (it's working but I question,  is it working correctly for her?...she was over-draining causing her ventricles to be small (you can read about slit ventricles here) and cause pain episodes during which her body projectile vomits to relieve the pressure/pain...etc.).  All are viable and reasonable explanations - and all could be contributing factors.  We just have to explore each one and see where that leaves us. My mommy gut says this is a shunt issue - and mommy gut is usually right.  But going from a gut feeling to hard evidence to getting a doctor to do something about it are much larger leaps that take a lot more time.

Meagan before an episode - she seems to breathe heavily and hang her head to the right. She also gets upset. This can happen right before or hours before.

So that's basically where we are.  We are waiting on GI to come and re-evaluate her tube and site to make sure we aren't missing anything.  She has had one good day here in the hospital, and one bad day yesterday with two huge projectile and fussy episodes.  So we are still at square one.  Of course Dr. R had to leave Friday to go out of town. He was very sweet with Meagan of course.  He stopped by and snuggled her a little, rubbing her head.  He told us he was sorry...that he felt he was leaving us "midair" ... but what is he supposed to do. At this point we have no "answer"... only theories which we need to test out.  And since the problem is intermittent, we may not get that answer directly.  At least not this weekend.

There is talk of her going home today - to what end I don't know. I'm going to continue to log her episodes and what she is doing beforehand and continue to press the doctors for direction. I'm ok with the fact that this may take a while to figure out, but I'm not ok with just going home with their hands thrown in the air.  My girl deserves better and I need at least a plan of action to attempt to fix these episodes.  I promised Meagan the best quality of life I can provide - does that mean never suffering or having pain? Of course not - but it does mean trying my best to lessen those instances and remedy them if at all possible.

Snugglin my girl!