Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.
I have often thought about this post. It has one I have wanted to write for some time now, but I think it just happens when it does because God always knows the perfect timing. I would think about what to write, and then forget about it as other updates or news would trump my train of thought. And it's honestly a post I have not revisited in a while. Since coming across this draft, I have thought long and hard about the purpose of our blog. I have thought about the struggle in changing it to invite-only or keeping it opened up for the public to read. And that's when I remembered why I started this in the first place. Other Hydro blogs are what saved my life when I was pregnant with Meagan. They are what I have used to guide me, better Meagan's care, relate to on the bad days, and read over and over again always gaining new perspective and appreciation for our journey. And then I thought of the people I have heard from over the last two years that were touched by Meagan and chose life for their child. I wanted to not only share our story to "pay it foward" but also as a testimony to life. To God's plan. To miracles. And so here she is, for all to read about.
That said, I have finally completed a letter to myself below that I started some time ago in my head. Something I wish I could have read in the beginning, and something I hope will help future hydro parents when they first hear those frightening words and the doom and gloom that seems to cloud any hope they may have.
Meggy getting some smooches from her Aunt Katie
December, 2013
Dear Me,
I know it is frightening. I know it is not what you expected. I know there are so many more questions than answers. But I want you to listen to me for just a minute. Just take a moment to feel calm, and open your heart. The child you are carrying is there for a reason. It isn't by chance that at the moment of conception, you became that child's mother. The child was chosen for you, yes. But you were also chosen for that child. Out of all the possible mothers in the world, God knew you could care for this child.
I know it seems so unfair right now. There are so many questions you have. Will the child be born alive? Will the child survive modern medicine to be able to go home? Once the child is home, will she smile? Will she see? Will she hear? Will she be able to reach, grab, touch, or feel? What kind of pain will she be in? How many surgeries will she need? What other complications will she have? What kind of life will she live? How long of a life will she live? Will she learn? Will she grow? Will she be happy? Will she know love?
I want you to know that there will be hard times. There will be times of uncertainty. There will be times you have to see your child endure pain. There will be times your mind feels crazy with questions, anger, frustration and sadness all at the same time. There are times when no matter how much love you feel looking at that child, you will just want to give up. There will be times that you don't do everything you are supposed to do - miss a medication, not work with your child, just need to take a break to lay down and regroup. There will be times you really feel it is all just too much. When you ask why. Why me? And feel like your life is over. Feel like it is all just too overwhelming and you cannot possibly go on in your situation.
I want you to know that all of that.... is ok.
It is ok because the good things will far surpass any of those feelings or bad days that you have. When you are down or overwhlemed, feel it! But know that there is always good to come out of it. You will jump for joy at every tiny milestone your child makes. A smirk, drinking more than a half ounce out of a bottle, moving fingers and toes, or the twinkle in your child's eyes....and all the little quirkisms you will come to know as your child will just set you on fire with happiness. You will be priveleged to learn about the world through a very different set of eyes. You will learn to be generous and loving, even moreso than you are now. And you will also learn when to be hardened and strong. You will learn that being "Mama Bear" is not a bad thing, and your ability to teach and show others through actions will eduacate others on how to be better people, more inclusive people, and ultimately advocates for the people like your child. You will learn what true friendship really is, and just how loving and supportive a family can be. Your child will be loved. Happy. Your child.Most of all, they will be made in God's image.Unique, special, and a little touch of heaven on earth.
So hang in there. Remember a day is just a day. God always gives us hope - and the sun always rises the next morning. Teach these things to yourself and your child....the bad is there to produce more good. The tough times always produce progress. And God is always there through it all.
- Me
2013 has been good to us in so many ways, and also had its challenging times. 7 hospital stays, 4 surgeries, therapies and setbacks. But we have also seen miracles - seizures controlled, becoming a sitter, and an absolutely explosive personality that strikes through even the toughest of souls. Here's to a wonderful 2014... many blessings, many happy moments, and the ability to take anything else in stride and realize the miracle in it all.
To make it work in our family, I do a lot. Pretty much everything at home...the running around...the balancing stress of medical bills.....the daily routines of baths, clothes, feedings, education, consoling, disciplining, and loving. But there is one big reason I am able to do all that - my husband.
Brian and I met at Xavier University where we were both attending college. We lived on the same floor of the dorm and became friends with the same people. I first noticed him because he was a nice looking guy and always really funny. He always seemed to have fun and truly care about people, and he was one of the few guys I knew who I would see at Mass every week - which was a very attractive quality. After a few years of being friends and hinting around at going on a date, we finally did in February of 2000.... and the rest is history.
The two of us on Graduation Day
Brian is the best dad ever. I know that sounds very cliche, but, it's the truth. He has a very tough and stressful work environment - yet he still manages to balance it when we need him most. He never loses sight of what is important, and he is always there for our girls.
If I am at my wits end and need a break, he's the first one to offer to stay with the girls so I can have a little "girl time" with my good friends... if I am dealing with a tough situation he is the first one to stand with me and help me through it.... if we are struggling as a family, his quick wit and sense of humor make all our troubles seem like distant nothings.
Brian is very talented at focusing on each girls' particular need, and making them feel like he is right there at all times. He helps Reilly get pumped up for dance and basketball... he wrestles with Kaitlin to help harness her bounding energy....he snuggles with Anna to temper her super sensitive emotions....he talks to Maura to help open up her little preschool world....and he engages with Meagan to help her continue to grow, flourish and feel loved.
Always willing to be silly for his girls
Today is Brian's birthday. I felt compelled to write this because our whole family "is" because of who Brian is. He is our advocate, our friend, and our rock. Brian, your intelligence, quick sense of humor, and love for all make it a true blessing to have you in our lives. God sure knew what he was doing when he saw what was ahead and chose you to stand by me through it all. Happy Birthday - and don't ever change. Love you!!
Merry Christmas to all our family and friends! This Christmas has been quite fun watching Meagan explore her new surroundings, the lights, the paper, etc. With her recent sitting, it is allowing her to play with a whole new perspective. This year, although she has had her share of surprises, surgeries and challenges, she has barreled through them with no hesitation. Seizures have also stayed away for the most part - which has been a huge blessing as we have seen her blossom and progress without the epilepsy showing their rude interruptions. We pray her meds continue to work as well as they have been and we have a similar seizure-free few months ahead of us as well. I am excited to see what next year holds for Meagan.
It's surreal to think back to our talk with the specialist who after officially diagnosing Meagan asked if we wanted to continue the pregnancy. For us personally, that question was already answered when we became pregnant - we said yes from the first pregnancy test and no hurdle or condition could change that. But considering the time of year it did make me think of Mary and what she must have felt. Young, alone, and pregnant, and in a much different and less tolerant time than we live now - she still said yes. She was also accepting the unknown - a completely uncertain future but trusted for whatever reason that it was supposed to be. What courage and faith that took to not only say yes to God and the pregnancy, but to say yes to all the unknowns that come with it. In that sense, I find comfort in asking for intercessions from Mary - especially when times are challenging. Hydro is essentially the unknown as well. There is no timeline, no certain outcome, and no shortage of multiple other diagnoses and setbacks that can appear as the child grows. Yet I would not change my answer of yes. Not for a million dollars. Not a billion. Not any one thing in the world could ever make me want to rewind time and not have Meagan in our life.
Sometimes saying yes to a tough situation is a bit short sighted - we know it is the right decision at that moment, but we do not see the long term challenges that lie ahead by doing what is right. Likewise, we also don't see the long term rewards that will come into play from those challenges to keep that faith alive... and so we must focus on those to keep moving forward and realize the true blessing of this life. This Christmas, it is a perfect time to reflect on that concept. That saying yes to the right decision not only means making the right choice at that particular time, but also saying yes to the good bad and ugly that comes along with that right decision as time goes on.
Today among our gifts and festivities and celebrations, let's make sure to take a moment and remember how one little word changed humanity. One simple leap of faith... one extension of trust to accept whatever came her way....one small, yet immensely loaded word - 'yes'.... and the Savior came to save us all.
This Christmas, I relish in all the new-found strength we have found as a family pushing through the challenging times, and all the good that has come from that since saying yes to Meagan... all the rewards, the blessings and the miracles we have witnessed along the way that make the hard times seem like just a blink of an eye. I hope many more people continue to accept making those difficult yet right decisions - remember, just say yes, and you never know how it may change the world.
"Today as we gaze upon the newborn Savior, we can indeed rest knowing that God is there to calm our worries, ease our fears, and alleviate our anxieties.
He has given us the greatest gift this Christmas .... the gift of life and salvation."
Brian had been away on business for a while... I had many days in a row of 4:45am wake ups so I could make sure and get everything in order for the day - 4 lunches made, 4 bags ready, homework signed..etc. Not to mention the regular everyday stuff I had to accomplish along with teaching my music students..etc. I ... was.... tired. This was hard work and I was just ready for everything to stop.. just for a second.. so I could rest.
One day last week, as I mentioned before, Meagan just sat up. Out of nowhere... 2 1/2 years old and she pushed herself past that halfway point she always got stuck in and succeeded in getting into a sitting position. She has tried this again and again since that day. Yesterday I noticed Meagan practicing this as I was folding some laundry - the up, the down, the in between, the getting stuck and the falling to the side....... When she was finally finished she was visibly out of breath and literally passed out asleep. I thought about my tiring two weeks and realized.... ya know... my two weeks of 3 hours of sleep weren't that bad.
Here she was just trying to do what all of us don't even think about and take for granted. This was truly hard work. This was truly tiring. Every time she fell she didn't stop. She didn't take it as a defeat. She kept on going.
The whole time she kept a smile of determination on her face. I hope the next time I'm run down and tired and just feel like giving up I remember last night. Her up and down, up and down, and the way she persevered even after failing multiple times. After all, obstacles are not stop signs...only guidelines for greater effort.
Yesterday my eldest daughter Reilly had a small skit at school about the story of Our Lady of Guadalupe. If you are not familiar with this story, you can go read it here. It is incredibly inspiring and the perfect lesson about belief and faith for this season.
Reilly had expressed some concerns earlier in the week that I would not be able to attend because the incident the prior week had really rattled her, unbeknownst to me. Although I promised over and over to be there, she started to question whether I could stick to that promise, or if I would have to leave because of Meagan. This made me sad because these are not things she should worry about, nor has in the past - and certainly I did not want her to start doubting my word because of her baby sister. They are so wonderful with her, I didn't want them to start feeling resentment. No matter how many times I reassured her, she still had that hesitation as to whether I would actually make it in there with Meagan's stroller.
Before the play, Meagan had PT yesterday at the house so I made sure to be ready to leave as soon as it was over so we weren't late. The PT informed me that she was able to get Meagan a seating appointment (to be fitted for her wheelchair) the first week in January! This is awesome because it was going to have to be February or March, but she was able to pull some strings and get it moved up. Leaving the house on a high from the news, we set off to the school.
We arrived at the big school and I wheeled Meagan up to the lobby. Other parents were waiting and chatting before going in. As we walked in, I pushed the button on the elevator. The light went on, but no open doors. I tried again, and nothing. "Seriously?" I thought. How would I get Meagan upstairs to make it to Reilly's play? Then a few parents noticed me standing by the elevator and it not working and without hesitation grabbed the bottom of Meagan's stroller and helped me lift her up the two story staircase so I could make it upstairs.
The play was held in a rather small room and by the time we made it up there carrying the stroller it was already a packed house. There was really nowhere for Meagan to "fit." I became concerned I would have to stand outside the door and Reilly wouldn't see me, thinking I hadn't come. But again, parents parted the way up one of the aisles and made a space for Meagan with an open chair next to her for me. As I sat down, I could see behind the divider where the kids were waiting to start the play. Two big brown eyes looked out and I could see them perusing the crowd, frantically switching side to side as they scanned the room. I knew she was looking for me. I sat up tall so she could see me and then her eyes met mine - and I could literally see her face relax from where I was sitting... and then sport a HUGE smile. I had made it, and she knew it. And now all was ok.
The play was very cute and the kids did a wonderful job. Reilly came over afterwards and gave me a big hug - she told me "I was so worried but when I saw you I was so glad you got to come in!" She skipped off with her friends to change and head back to class and I started the process of getting Meagan downstairs. Once again, parents stepped forward and helped move chairs to wheel Meagan out of the room, and then again helped me bump her down the stairs. The amazing things kept happening yesterday... almost in a chain reaction and I saw God at work.
It may seem small and unimportant, but we miss a lot of events due to Meagan's limitations and/or emergencies....so when I promise my children I can be somewhere to see them, it is even more important that I get there to make sure they know their activities/school events/hobbies matter to us. They are wonderful older sisters - but they give up a lot. So these little events mean the world to them. And they are also important to Meagan. I want her to experience as much of what the older girls did as possible and see her sisters as much as possible in a regular environment doing everyday kid things. It teaches her necessary lessons about life and supporting her sisters....and I never know quite what is going on in that little head of hers, but I know she has to be soaking up so much of these experiences....and that is so valuable to her, and her development.
I went to bed last night thinking about what a wonderfully different day yesterday was compared to last Thursday when trying to attend Maura's Christmas party. I thought about the wonderful people in our community, the parents and students and how no matter what, we always rally around each other in tough times. How people rallied behind us emotionally last week... and how they showed this in action this week at Reilly's play. And that's how it should be. Especially in our faith community - our home - our safe place.
Today is "break day" as we call it - last day of school before our big Christmas break. And we are so excited! As we move forward with our family get-togethers, our times out with friends, our running to different stores to try and sneak in a gift here or there without the kids knowing, and our times at our churches, let us try to not forget to look out for each other. You just never know what little eyes are looking up to us and watching - and what lessons they are taking away from it all. God always has our backs, so let's have each others in the spirit of Christmas. At times, even if others fail to practice this, let us be the examples. Let us reach out in awkward situations to show support, to show love, and to show understanding - let us show others.... how it should be.
Reilly as her role of "Mary" in the skit - and Meagan taking in every second.
Hope is such an overused word. We hear it constantly in big contexts, small quotes, and even thrown around without much meaning. But I think we need to take the word back. It is such a powerful word that encompasses such a powerful notion - that yearning and seeking for better - the faith that things will in fact improve - that anticipation that something great will happen even if it seems impossible.
We had an unfortunate incident occur last week regarding handicap access for Meagan. It is not resolved as of yet, so I am foregoing details for now - but I can tell you that because of the circumstances, it was the first time I really felt hopeless in this journey as Meagan's mom. I am normally such a "pitbull" when we have faced any sort of adversity with Meagan, but this particular day, it blindsided me so much, and hit me straight in the emotional gut with such force, that for a moment, I felt defeated and couldn't fight back as I normally do. I'm hopeful for a positive resolution, but in the meantime, I was feeling pretty down.
Ironically, as the week has gone on, my mood has lifted. I have seen some amazing things happen with Meagan that have come out of nowhere. First, a few days ago, she pushed herself to sit up. All on her own! She had never done this before! She was laying there playing as she usually does, and then just pushed up on her arms. Typically she will stay in this position (we like to think she would be a "boat" champion in Yoga!) and then would collapse back onto the ground. Not this time. As she held her position, she moved her arms up a little bit and kept pushing.. and bam - she was sitting straight up. All on her own. Just beaming with pride as she clapped and said "yay!" Meagan has been trying to sit up every day since then - some days she gets up on her own...others I can tell she is really fatigued and she tries and then just lays down and plays happily on her back. However her PT said she may change Meagan's status to "independent sitter" on her report if she keeps improving! This is a huge change for her - I'm so excited to see the new ways she will be able to play and enjoy her toys now. I'm also hopeful this newfound skill will help propel her into the next stage of gaining new motor skills or at least becoming a much stronger sitter.
Another thing that has really changed this week is her sense of humor. Meagan has always been a little ham, but lately she is really belly laughing about a lot more, so I suppose "change" isn't the right word as much as I have seen it grow immensely. I have never heard her laugh as hard or purposeful as I have heard her this week. One day, Reilly was being silly with her sisters, jumping around the room like a frog. Meagan saw her and thought it was the funniest thing she had ever seen. She let out the biggest belly laugh ever! Then she would squeal with excitement as she anticipated Reilly jumping again, so Reilly continued to jump and Meagan continued to hysterically laugh. I grabbed my phone and recorded some of it. The squeals of happiness and the joy Meagan obviously felt made me hopeful this part of her personality will continue to grow.
The other big growth we have seen in the last few days is Meagan's speech. She has loved copying, trying to imitate and watching us speak for a few months now - but up until this point she had her babbling and noises...but her few words she would repeat were literally copying what I or one of the girls had said (including her favorite, "awesome".. or "aweshum" as she says...). Over the last few days this has changed. She is starting to actually say something unprompted. Meagan will now "talk" random words to the girls - almost as a way to get attention, and totally of her own accord. It has been amazing to watch this because now I am hopeful she is at the very beginning of being able to tell us something on her own. Maybe this means as this progresses she will actually be able to tell me what hurts, or tell me if she needs something since she is starting to form her own thoughts, or at least starting to be able to articulate them. The sweetest occurence was yesterday when Meagan looked at me and said "Mommy"....so I went to pick her up. As she laid her head on me, she patted my back over and over and said "Mommy... Mommy." Chills. There is really no other word to describe it.
Despite the incident last week that left me emotionally drained and disheartened, God, once again, has been able to bring me back through our little girl. Through Meagan's changes this week He has reminded me that although we may have emotionally tough times, although we may come up against walls we did not foresee, there is always hope. And Meagan's sisters remind me of this too. They had a lot of questions about what happened last week - as they should. They do not quite understand the same way I do, and it really impacted their view of being Meagan's sisters. But, just as they have in the past, they have bounced right back and have proven to be, yet again, the best advocates and teachers for their baby sister. It also warmed my heart - knowing that times I can't be there, or far in the future, I am positive Meagan will always, always be taken care of. Her sisters will always be there to guide her through those walls with solid strength and God's grace. You just can't mess with a kid who has four big guardians by her side. :)
As we approach the last Sunday of Advent, the season of hope, Meagan reminds us everyday not to lose that anticipation of what she can do next. That, I think is the best part of hope - it is never-ending. There is no last chapter, no finality. It is an ongoing desire of expectation - a trust, if you will, that things will get better...always. That circumstances will continue to improve. That new adventures are on the horizon, even if not seen quite yet.
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%!
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:
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
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
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.
