Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, January 31, 2012

I Knew It

So I ordered Meagan's full records from her Neurology practice.  After having several conversations with them where I kept getting bits of inaccurate information, I decided to pull her records so we had the freedom to look into other practices.  I was reading through Meagan's EEG reports, and found something very interesting.

The Neurology office had reported to us she was having multifocal tonic/clonic seizures.  Now, what did I know.. but.. I just didn't think that sounded "exactly" right... because while Meagan was definitely seizing, she was nowhere near having what is also referred to as a "grand mal" seizures... in layman's terms.. the typical "as seen on TV" seizure that is what one typically thinks of when hearing the word "seizure."  But I had put that to rest because the only thing that mattered was that #1 - I knew she was having seizures... and #2 - treating those accordingly.

In the EEG report, however, it said: Epileptiform activity consisting of sharp waves in the left posterior temporal region.  Discharges sometimes activated by sleep.  These findings suggest epileptic activity of a partial nature and correlate to seizures of a partial classification.

In other words, Meagan is having partial seizures, not tonic/clonic seizures.  Based on what Meagan does clinically, she has both simple and complex partials.  For more information on what partial seizures are, click here: http://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/index.cfm?gclid=CJLfgrz0-60CFY9W7AodoFCiQQ

I kind of already "knew" this because what she does clinically is SO much like a partial seizure, that was the first thing that popped in my mind.  So now I"m glad I actually have the official information confirming that thought. 

I guess the lesson is - always order the records and read for yourself. Grrrr.

Friday, January 27, 2012


Beautiful is one of those words that we hear all the time... kind of like "love."  It is often used in many contexts, thrown around like the wind and overused... and yes... meaningless at times because of these things.  But it truly is a word that fascinates me.  What is "beautiful?" Despite all its overuse, I think I found its true meaning when I looked at my sweet girl in my arms tonight.

Meagan had a pretty sleepy day.  She was awake for a few minutes here and there, and in these times was alert.  I sat her up on my knees and just looked at her.  I started looking at her hair - it is so thick.  It has a rich dark brown color and on the ends, she is even starting to get these crazy curls.  Then I looked at her eyebrows.. they are so inquisitive.  They raise up when she looks at me, and get stern when she doesn't feel well.  Her eyes of course are just like her sisters'... so big.  They seem to take in all they can from her surroundings.  Meagan has the tiniest cutest little nose... and her lips and mouth are also tiny and almost look 'painted' on her face.  Overall, Meagan has very delicate features.  I loved just sitting there looking at her face and all the stories every little part of that face was telling me.

People tell me all the time "Meagan is so beautiful."  Especially nurses or doctors that we have had to work with over prolonged periods of time.  Her Neurosurgeon said the other day "Oh Meagan you are so beautiful," following which he picked her up and gave her kisses on her head and snuggled her.  Family and friends will drop me a note and tell me "Oh Meagan is so beautiful in her latest picture."    I must say I have agreed with all of these people... a lot of that is because I'm her mom - of course I think she's beautiful, as I also think my other girls are beautiful...and as any mom would about her child. Today, out of curiosity, I decided to look up the 'real' definition of beautiful.

 According to the dictionary beautiful means: 1. Pleasing the sense or mind aesthetically and 2. of a very high standard; excellent.   I have definitely been thinking more of the first definition.  Her little features, her dark hair, her delicate being - it was aesthetically pleasing to look at my sweet baby and all the things that made her beautiful.  But the more and more I sat with her today, I realized I was ignoring half of the definition of beautiful that I read tonight.  Sure, I may think Meagan is beautiful on the outside, but I think I was missing the point.

I then started to think about everything she's been through in her mere 4 months on Earth: a risky birth, brain surgery at 3 days old, 4 shunt adjustments, seizures, 3 hospitalizations, 6 ER visits, Bronchilitis, shunt swelling, vomiting, pressure, pain and countless needle sticks. I started to think about how much that was for such a tiny body, such a tiny person....then I looked down at Meagan laying on my knees.  Her physical beauty was apparent, but then it was clear to me she embodied the whole definition of beautiful. 

Meagan is the least judgemental person I know. She however, has probably been the most judged by others. She has been doubted the most.  She has been dismissed the most.  And yet here she is.  Making her own path...working through her challenges...and surprising me everyday. The doctors who judged her life before she even started living it didnt' know what they were dealing with.  Meagan truly is the second half of beautiful:  "of a higher standard; excellent."  She is of a higher standard than those who chose to dismiss her existence...and she is doing excellent despite expert opinions, medical degrees, or doubting bystandards who said otherwise.

So as I sit here tonight, do I notice Meagan's dark thick hair? Do I study her eyes and her long lashes? Do I ponder her delicate nose and lips? Of course.  But I smile at her excellenece to push forward.  I am in awe of her higher standard of life... to take setback after setback and smile her way through them all.  And I am certainly one proud Mama of a truly beautiful little baby girl.  Next time I am curious about the full meaning of beautiful, I know I don't have to look it up, or search on Google, or pull out my dictionary.  I can just look at Meagan.

Thursday, January 26, 2012

Riding the Wave

Well it's been quite an adventurous few days for Meagan.  But when isn't it?

We were so happy last week - Meagan's seizures seemed to be under control.  It was almost 10 days with NO seizure activity! The Keppra was working!! We had the best smiling picture EVER a week ago Monday... and she was smiley the entire day.  It was such a great day for Meagan.

Meagan continued to have a great week... I did notice this past weekend, though, that her shunt site was quite poofy. This struck me as odd because her shunt site had only ever swelled before when she was on a higher shunt setting.  This time, she was back at her normal 1.5 flow level.. a setting she had always tolerated well and never swelled or reacted to.  She was still acting ok, though, so I just watched it.

Monday came and she was a bit more fussy.  She had her 4 month check up that day, and everything checked out fine.  Ears clear, overall healthy and nothing clinical that stood out to the Pediatrician.  I chalked it up to random fussiness and we went home.  She continued to be fussy that night and so we were up quite a bit with her.

Tuesday morning came - I was getting the girls ready to go to school.  Meagan had eaten at 5am, and it was about 8am at this point.  She was lounging, fussing here and there, but basically happy.  All of a sudden, I looked over at her, and she vomited.  EVERYWHERE.  Even my 5 year old said "EWWW!"  I watched her and it happened again - it literally looked like someone had a hose pointed out of her mouth... it was projectile and liquid and A LOT.  "Oh no" was my first thought because projectile vomiting is a huge symptom of a shunt malfunction or failure.... but perhaps it was just a random occurance.  So I waited... 8:35am... and it happened again.  Ok, now I was officially worried.

Otherwise, Meagan seemed "ok" ... so I piled us into the car, and we left to get Kaitlin to school.  When we got home, she didn't get sick again....for a while.  Around lunchtime, it happened again though.  Projectile. Everywhere. As a mom, especially with many kids, you never want that infamous "stomach flu" to come near your home.  But when you are a mom of a shunted baby, and the baby is projectile vomiting, you realize how quickly you actually pray it IS "just" the stomach flu.  It is better than the alternative.

I decided to call the Neurosurgeon's office that afternoon because I was starting to become concerned about Meagan's shunt now...especially with it being so puffy even on a low setting.  I continued with our day, waiting for a callback.  Finally, our NSG's PA called me back.  She talked to me about Meagan, the vomiting, Meagan's mood/behavior...etc...  We both decided that she was ok to watch for the night and come in the next day if she hadn't improved. 

Let's just say, I knew early on in the night I'd be calling the next morning. To start off, Meagan had a 4 minute seizure - after not having one for over 10 days. So I figured something was going on. Meagan had a horrible night.  She threw up a few more times, and she was extremely fussy.  She (and I) slept maybe a total of one hour.  Her shunt site was very puffy and swollen and she was eating in shorter spurts.  I dropped Kate off at school again and called the NSG office.  They were excellent about working Meagan right in for a morning appointment. 

We arrived at the NSG office.  We checked in, got called back, and saw the PA.  She looked at Meagan's shunt site, talked with me about Meagan's symptoms the day before and the previous night, and decided to send Meagan for a CT scan to double check her ventricle size.  Meagan made it a pretty easy decision ... she was fussy even in the office.....and during the PA's exam, she continued to wimper and fuss.  I put Meagan back in her seat and we headed across the street to the hospital.

After about a 45 minute wait, they got Meagan back for her CT scan.  Once it was finished, we walked back across the street to the NSG's office.  WIthin a few minutes we were called back to a room again and the PA came in.  She went over Meagan's scan with us and explained that Meagan's ventricles seemed to be stable (ie: not growing larger) and she would get the NSG to come in and talk with us further.

Meagan's NSG came in.  He was very apologetic for us having to come in - almost as if he felt badly things weren't going "perfectly".... it isn't his "fault" at all, as these things can change in a heartbeat.. however, I appreciated his sentiment.  It felt good to know he strived for 'perfection' in his work and didn't want us to be returning with problems.
  He talked about her scan with me.... while it showed no increase in ventricles, there was also no decrease compared to her scan back in October. This isn't necessarily a "good" or "bad" thing. Yes, ultimately we'd like her ventricles to shrink to allow more brain growth...but at the same time, some Hydro kids have ventricles that just stay the same.  In some kids, they are stretched so much with fluid that they reach a point where they don't shrink anymore.  However, it is something to watch because the ventricles staying the same could also mean that they are starting to grow again but we are just a little "ahead" of the shunt problem.  So it's really a toss up as to how it will play out (as is the story with Hydrocephalus.)

Her head circumference was up 1.5cm, but because of the ventricles staying the same, he attributed her head growth (for now) to normal growth and said we will keep an eye on it.

The NSG said he was very concerned about Meagan's shunt puffiness. This made me worry a little because you have to understand something - even when I *should* worry about something with Meagan, her NSG is VERY positive.  Not one time even since we met with him prior to her birth has he ever used the word "concerned" with me.  As a matter of fact, he seems very very careful as to when he applies the use of that word.  So when I heard "I am very concerned about her shunt swelling...." it did catch my attention.  I filed it away to remember for down the road.  He examined Meagan's head and shunt area....and he was able to 'milk' some the fluid out (by pressing his hand firmly on her shunt valve and pushing the fluid down into her catheter).  He asked me to continue that at home to see if I could help facilitate the flow of the CSF into her shunt tract so perhaps it will relieve some of the swelling.

The NSG also turned her down again to her lowest setting (fastest flow) ever.  Meagan had been at a 1.5 setting early on.  Last Fall he tried to turn it up to 2.  She tolerated it for a few days, but then started to not eat well and be very fussy.  Her shunt site also became really swollen so she had to have it turned down to 1.5 again.  At her last neurosurgery check up earlier this month, the NSG had once again tried to turn it up to 2 (because her sutures were severely overriding) and wanted to see if she would tolerate it this time around (to stretch the bones apart again to allow for more brain growth).  Sure enough, we were back in the office a few days later because her fontenal was bulging and she was very fussy.  Her shunt site had also swelled up a lot, so she was once again turned back down to 1.5  Now, even with Meagan still being at 1.5, which has always been her "comfort" level shunt setting, the site was very puffy and starting to swell again.  The NSG said he thinks it *may* be the start of a shunt problem.... But since Meagan is still eating ok and has intermittant smiling and alert times still, in between fussiness, and since her vomiting had subsided,  he didn't want to take her back to the OR. This is why he would turn down the shunt even further to see if that helps first. So Meagan is now at the setting of 1...the fastest flow (lowest setting) she has ever had.

The NSG said hopefully this faster flow helps. He said if by chance it doesn't, at least it buys us time so she would be that much older for surgery. He said of course if her behavior worsens a lot, if she vomits again excessively, or if she ever stops eating or becomes listless to call back and they will re-evaluate the plan. He was very thorough and said he was glad we came in. He even held Meagan for a few minutes at the end and gave her lots of kisses.  He is an excellent surgeon...and also a wonderful man.

While it wasn't exactly the answer I wanted to hear, it was also a good thing we avoided the OR for now.  I appreciate his approach with Meagan....being pro-active but balancing that with a conservative treatment plan.  I know if Meagan ever had a shunt emergency, he would act and help her immediately...but for now we're going to "ride the wave" of the shunt functioning properly and see where it takes us in the next few months.  I'm really hoping the faster flow helps - but in the back of my mind, I'm preparing myself for Meagan to possibly have another surgery.  This was not unexpected, but, nonetheless, it is a lot.  Here's to hoping that the wave takes us a gold medal distance.  I would really hate to see Meagan thrown back into brain surgery when she is finally doing so well with her seizures and other setbacks she has recently experienced. 

Love you Meagan.  Stay strong and let's hope we can avoid another surgery, and that this shunt can ride the wave for many, many months to come. 

Monday, January 16, 2012

What Have We Come To?

I read an article this week that took my breath away.  I wrote a guest blog for a Catholic site about it.. below is the link.


Thursday, January 12, 2012

Let the Hard Work Begin

Meagan had her first PT sessions this morning.  The PT worked with her a lot on arm and leg movements, and the majority of the time on head control. 

Meagan has "mixed tone" ... in that she is severely hypotonic in her trunk/back and neck (floppy)..but she has some hypertonia in her legs and arms (tense).  So she showed me several exercises and routines I can do with Meagan to help with her tone and also build strength so she can start holding her head up. One in particular she wants us to do as many times a day as possible is to hold Meagan on her tummy and massage deeply down the center of her back.  She said this is one of the only ways to stimulate those muscles and it's important because right now her trunk is like a wet noodle.

She did a lot of work with Meagan up on a rolled towel on her tummy.  Meagan of course could not hold her head up at all on her own, but the PT showed me a way to support her and also pull her head back so we could add some tension to those floppy back muscles to start working at lifting the head. 

Holding Meagan's head up and making those neck and back muscles get tense to build strength

Meagan unassisted.... she has a little ways to go :)

The PT was a litle concerned with Meagan's legs because they are pretty tense, but do not like to bear weight.  She showed me several ways to hold Meagan so we force her to weight bear on her legs.  She said especially Meagan's right leg lacked movement and muscle tone (which makes sense with everything going on in the left side of Meagan's brain) ...it rests completely bent up against her body... and the PT wants us to work on extending this.  She also was concerned with Meagan's arms because while she will bend them to put her hands in her mouth, she often lays with her arms STRAIGHT up and they just stay there.  The PT said we need to really work on this so we can help the tone.  She said she wants to really tackle these two issues with her right leg and arms because she said if Meagan is sustaining these struggles from the damage in the left side of her brain, she's still young enough where the brain could try to re-map... but if we wait that may not happen. The PT was very good about explaining everything to me and showing me in detail how to help Meagan.

A little "makeshift" reward made from a Christmas ornament....when Meagan straightens out her right leg - the bell rings!

A "new" skill she was trying to get Meagan to do today was to grasp and hold on to a toy.  The PT hoped this would help Meagan bend her arms more often.  She would put a toy in Meagan's hand .. and each time out of habit, I would reach down and help Meagan grasp the toy.  Of course Meagan would keep her arms straight and I would be helping her hold on.    The PT asked me to not help Meagn...to let Meagan do it... and out of nowhere, for the first time, Meagan grabbed on to a toy and held on to it for a few seconds!  She actually cooed with excitement and then did it again! And again!  The PT was very proud of her, and so was I. Meagan seemed happy too - she was cooing and smiling the whole time she was holding her toys! Meagan was feeling the reward for her doing something on her OWN.

YAY Meagan! She held her rings a few times at PT today!

After seeing Meagan's PT session today, I know she has a long road ahead of her physically.  The poor thing was so exhausted when it was over, she literally fell right asleep.. and wouldn't even wake to eat!! She finally woke up almost 6 hours later, ate, and then went back to sleep.  So the PT will definitely take its toll on her little body - but it's for the best.  Eventually, she'll get more used to the therapy and working hard.Overall today went well. I'm excited for her next PT session....I think that Meagan is finally at a point when PT will start helping her.... she seems to be in a good place with her shunt.. and her seizures (knock on wood) have at least started to lessen with her new medicine. 

I've spend so much of my time fighting for Meagan -- and I will continue to do so....but I realized today after the PT told me to let Meagan try on her own... at some point, Meagan also has to start fighting for herself.  I will certainly be there every step of the way...but part of my fight for her is so she learns how to push through things on her own as well.  I can encourage her, help her, and work with her - and of course I'll always be there to pick up the slack on her hard days.... but ultimately SHE is going to have to be the one that wants to hold her head up, bear weight on her legs, and do other things down the road.  I hope I can give her the best foundation possible for her to accomplish these things. 

I'm a very independent person - and I feel one of the greatest gifts I can give to Meagan is to help her realize how she can be independent in her own way.  It might be as small as her grasping her own toy..and I know she is only just at 4 months old....but I see no reason to not encourage her to start working hard now.  It is in even those smallest  moments where she will taste a little bit of freedom.  It is in those small moments when she will finally realize she decides to take steps forward.. no matter how much the Hydro wants to hold her back.  And it is in those small moments when she will hopefully feel so proud of every little accomplishment, it will propel her on to doing other great things -- something I've known she is capable of all along.  Let the hard work begin!

She was wiped OUT for a good 6 straight hours after her PT~ I don't blame her!

Wednesday, January 11, 2012

MRI results

Meagan had her follow up appointment today with her Neurosurgeon, Dr. R.  He came in and greeted us as usual, and then said hi to Meagan.  He calls Meagan his "little sweetie".. I love that.

He pulled up Meagan's MRI and started to go over the details.

He said first of all, her shunt is working great.  He said that her CSF gathered in her brain is less and that's a good thing. He was happy with the brain tissue that has fluffed out so far and is hoping that trend continues.

Now for the other issues:

1. New fluid outside the brain - Meagan has a good bit of fluid gathering outside her brain.  Dr. R said along with her sutures overlapping, this is something that while not desirable, is not unexpected.  He said unfortunately, with the Hydrocephalus, the main goal is to relieve brain tissue and salvage as much healthy tissue as possible - so by draining away the ventricular fluid it can leave room for fluid to gather elsewhere if it beats the brain's growth to fill up the space.  He said, again, that this is something he wants to watch. He doesn't want the fluid to build up too much on the outside of her brain, and also doesn't want her sutures to fuse - thereby throwing her into another surgery.   He said because of this, with our permission, he would like to set her shunt back up to a "2" from where it is currently (1.5).  This is hopefully going to reduce the fluid on the outside, and also seperate her sutures a bit to avoid fusion.  He said he was aware that last time she didn't tolerate this change so well, but, he's hopeful that perhaps now, a little older, she will tolerate it ok.  He said if for some reason the fluid starts bulging again or she stops eating and is fussy like before to just call and he'll be happy to see her right away and turn it back to 1.5.

2.  Fluid in posterior fossa:  Meagan's fluid is still present in her posterior fossa - and it is still pressing her cerebellum into her spinal canal. This is known as a Chiari Malformation.  Not unheard of in babies with Hydrocephalus.  He said something similar to his speech about the other issues... he doesn't want to "tip the apple cart" at this time. He said if, again, the fluid grew substantially on a future scan, or, Meagan started to show clinical symptoms of the fluid impacting her spinal column (ie: dizziness, balance issues, motor issues) as she grows and starts to tackle certain skills, he would again take a look at it, and consider draining it.  He said he doesn't necessarily drain ALL unnecessary fluid from the brain of a patient - only fluid that he sees is impeding brain growth and/or impacting the daily life of the patient.

Dr. R explained everything fully to us.  Honestly, it is hard to gain "closure" when so much is "watch and see"... BUT.. I do appreciate his approach.  Meagan is doing ok - her brain tissue is fluffing out - her fluid is leaving.  Have other problems arisen? Yes.  But I love that Dr. R isn't "trigger happy" either.  He told me today "I treat the patient, not the conditions." .... So when her new issues or fluid start impacting her brain growth or her clinical abilities, then treatment will be considered.  Until that point, I understand why he wants to just "watch and see."  I appreciate the fact that he is worried about Meagan as a person, and doesn't see her as "hydrocephalus, extra-axial fluid, seizures, and at risk for cranial synostosis"

He also said that since her seizures are a new thing, and not 100% under control yet, he would hate to put her in another surgery, and then have those get completely messed up again as well.  He said we will watch these other developments closely and if ANYTHING changes from our observance to call him right away.  He will continue to do his part in managing her shunt and her scans to advise from the professional view.

It's really hard being a Hydro parent.  Because everything that comes with Hydro or new problems that develop often have the same "prognosis" or "action" as the original Hydrocephalus - which is .. "watch and see"   I love Dr. R for going through everything for us.  I love him treating Meagan the person and not Meagan made up of 5 different medical issues.  I love that he is taking the approach he is -- as parents, we get so worried about our kids, sometimes we fail to see the big picture.  And today Dr. R reminded me that because Hydrocephalus is so uncertain, we have to always look at the big picture.  I love that he literally said "if it ain't broke, don't fix it."  I think I just overall love Dr. R.

So we sit in another pool of waiting, watching, and seeing what happens.  But I do know that Meagan is in GREAT hands in Dr. R.  I trust his opinion and am so thankful he is on Meagan's side.  I'm appreciative of his attentiveness to her new issues, and I trust that he will watch them closely.

As parents, we love our children.  It's a natural tendency.  But as a mom of Meagan, I do have to say, I love Dr. R too.   Without him, his expertise, or his treatment approach of Meagan, my love for her wouldn't matter because she wouldn't be here. When you have someone you rely on to keep your child ALIVE, you have to love them....because your child's life and well being is literally in their hands.  Dr. R could have easily advocated for other surgeries to drain the fluid..... but after his explanation today, I know he is thinking about the big picture.  I understand that he, too, loves Meagan the person... and wants her to be the best Meagan she can be.

So with that:

Dear Dr. R,

Thank you for being the best YOU can be.  I'm not going to lie....the "watch and see" will be tough,.... but with my love for Meagan, your obvious love for Meagan, and our family's love for you, I'm confident we can wade through these issues and take appropriate action when needed. 

Tuesday, January 10, 2012


I have no idea why, but I'm actually nervous about our meeting with Meagan's Neurosurgeon tomorrow!  I don't know why I feel this way.. I'm sure everything is fine, and the only reason he wanted to meet in person is to make sure we go over things in detail -- but I just hate that phrase "in person!"... it has such a negative connotation at times.

So, I'm enjoying some coffee... and getting ready for a long night because I do not feel I will sleep anytime soon! I can't believe I'm this nervous about a silly Neurosurgeon appointment.. after everything Meagan has been through you'd think nothing would shake me!  I have absolutely no grounds or reasoning for my nerves.. just an awful feeling in my gut....

Hoping my nervous feeling is more nerves than "mommy gut" ... hoping tomorrow morning comes soon and hoping the NSG calms my fears and gives us a great report.

Sunday, January 8, 2012

Home Again, Plan Again...

Growing up, my mom would always say this phrase.  It really went in one ear, out the other.. but it's one of those things or key phrases you hear your mother say that sticks with you.  Then one day it makes sense.  And today, it definitely makes sense to me!

Meagan slept well last night. The Ativan did in fact stop her seizing and she got some good rest.  She woke up to eat and was a little fussy, but, otherwise seemed fine.  She only had one seizure in the morning. Lately, besides her usual movements, she has been starting to pull strongly to the right during her seizures.  She will pull her head that way, her eyes will flutter that way, and her mouth will be pulled up that direction (almost looks like you "fish hooked" her mouth).  It is definitely consistent with her having more damage and more seizure activity coming from the left side of her brain.  Today, I also saw another little piece of the puzzle that may be influencing that.

I was asking the Nurse about the MRI results... she said that the Neurologist should be by later on.  I explained to her how our NSG is always so good about showing us the images so we can see the progress Meagan has made.  The nurse jumped up right after that and said "Oh, we have a computer in the hallway.  I can pull up her images for you!" I asked her if that was ok.  She said "Um, it's YOUR child! Of course it's ok! I just can't tell you anything ABOUT the images.. but I can certainly pull them up for you and let you see anything they've written so far!"


So she got the computer from the hallway.  First she looked at Meagan's birth MRI - she was shocked at how awful it looked! I told her... "I know.. it's amazing how far she's come, eh?"  She agreed.  She then pulled up Meagan's MRI from yesterday.  She scrolled down and unfortunately, the full report was NOT in yet... apparently the Neuro-Radiologist wasn't going to be in to fully read and write the full report until later in the afternoon... but there was at least a one-sentence preliminary finding.  She read it to me as the new image popped up:

"Vents smaller - New fluid and hemorrhage in left occipital lobe. Large cyst in posterior fossa region."

Ok, I knew what *some* of that meant. Basically, at this point, the breakdown is:

1. Vents smaller - wonderful!  Meagan's ventricles being enormously enlarged and filled with too much CSF is the problem and what was putting pressure on her brain restricting its growth.  So this is a good thing.  The fact that they are smaller is good. It means less pressure.. less fluid.. more brain. It means her shunt is working so far.

2. New fluid in left occipital lobe.  Well, I'm not really sure what this means - It is something I will have to ask the NSG on Wednesday when we meet with him.... why she has this fluid... what it means...and how we manage it.

3. Large collection of fluid in posterior fossa region:  Well, this isn't really 'new' news.... this showed up as a new thing on her October CT scan.. so it was new as of then. What this tells me is that the fluid is still there.  So on Wednesday, we will discuss this with Dr. R again.. and talk about how we are managing it.  He had mentioned before about either putting in a second shunt, or putting in a second catheter which he would link to her current shunt.... so we'll see what he says.  He may also just keep watching it for a while until it grows or starts to pose more of a problem for Meagan and then do the surgery.  So this is another 'wait and see'


As far as her seizures go, I had a long talk with the Neurologist before we left the hospital.  He explained to us that he wants to keep Meagan on her current level of Phenobarb while building up the Keppra in her system.  He said he would cut her cold turkey if she was monitored in the hospital for a prolonged time...but since she isn't, he wants to keep it steady until the Keppra is at a good level in her system and then once her seizures seem to be managed by the Keppra level, he will wean the Phenobarb. If we never get to that point, and she still continues to have many seizures, then we will start at square one and see what other drugs or combinations thereof we can try with her. We are somewhat limited now because of not only her age, but, lots of these meds are done by weight... and she is a TINY peanut.  So we may have to wait longer before we try any other meds besides these two she's already on.

So for now, we keep giving her old med...incorporate the new one...and log her seizures... if we see a stabilization or less, we are on the right track. If she has another bad cluster like last night where she won't stop, we unfortunately would have to bring her back to the hospital.  There are rescue medications you can have at home - but - Meagan is just too tiny.  If she needed a rescue med, it would have to be administered in the hospital so they could monitor her.  When she gets a bit bigger, he said they'd be happy to prescribe us a rescue med to keep at home.  So here's hoping we keep seeing improvement. I'd really like to avoid the hospital again for seizures!

Before discharge papers were given to me, Dr. Philbrook, one of the Neurologists came to speak with me again.  He reminded me about calling tomorrow for the MRI results.  He also said that as much as we liked Dr. Z, he'd prefer we go back and start seeing Dr. Cheng again (the Neuro who had helped us with her first video EEG when she was diagnosed with her initial seizures).  He said it would be more helpful to Meagan because he is an Epilepologist and would be much better for Meagan's long term care.  I agreed we needed someone more 'in tune with' a case like Meagan - brain condition and epilepsy - and so I said we'd call Dr. Cheng for our next appointment.  Dr. Philbrook said if we ever had any problems, to please call him as well and since he now knows Meagan, he would be glad to help us.  I felt good about our meeting and about our plan for Meagan's seizures, and I appreciated him helping us so much this weekend.

It was finally time to leave - our nurse came in, unhooked Meagan, took out her IV and also gave us our Keppra prescription.  She then realized it was Sunday and was afraid the pharmacy may have to order the med - so to make sure Meagan didn't miss a dose, she got the doctor to give us enough for 1 1/2 days so we had time to get our pharmacy the prescription. She got us a wagon, helped us load our stuff inside and walked us out.

I was so happy to get home today.  I walked in ready to tackle the laundry that had been to the top of our laundry chute the day I'd left with Meagan - and ready to clean the diapers that had been sitting around.  And what did I find? And empty laundry chute! Clothes put away! The house clean! And the cleaned and dried diapers sitting in a laundry basket.  I had the best husband ever! I then walked into the living room - the first thing I did, of course, is hug my girls so tightly! I missed all of them so much.  They missed me - but they missed Meagan too.  Matter of fact, the first thing my 2 year old said to me when she woke up from her nap was "Where baby??? Where baby??" and she wouldn't calm down until I took her to Meagan and she got to touch her and kiss her.

 When I saw Maura's reaction to Meagan being home, especially Maura being the youngest of the older four and having the least comprehension as to what was going on......I knew that even though Meagan was only 3 months old and has spent 1 1/2 of those months in Children's Hospital, the girls were lonely without her.  Meagan is already an integral part of their lives...and they missed her so much when she was gone! It was great to see. Because if they felt lonely for Meagan, then Meagan definitely felt lonely for her sisters.  My girls together again.  My family together again. And there is NO place better to be. And no better support system to be behind Meagan as we figure out together how to tackle her next set of challenges.    My mom's saying came back into my head.  It made complete  sense to me now.  Yes, we are home again...but we have more plans to make.  Meagan's is a neverending journey.. so while homecoming is a reprieve, we must continue to plan for her care so she can thrive.

I'm confident we'll figure out how to manage Meagan's seizures in the near future. I picture it like the hurdles in a track meet. You run fast...you hit some hurdles.. and you jump over them. Then you keep running and you hit another set of hurdles.. a little higher this time.. but you do your best and jump over them. Sometimes, though,  you fall.  But that's ok. Because you get up, and work on getting over that next, more challenging hurdle.

  This is like Meagan's journey.  She runs to life...and then hits a hurdle. She jumps over it.. and then keeps on running. Sometimes, her hurdles will be higher and harder than her previous ones..and sometimes she will fall.  She may get up and jump over that higher hurdle herself... but sometimes, the hurdle may be too much for Meagan.  It is in those moments of weakness, though, when God and her family will lift her up, hold her high over our heads and get her over that hurdle..no matter how difficult.  All that matters to me is that she keeps on running...because living is what it's all about.

Home Sweet Home.

Saturday, January 7, 2012

Expect the Unexpected

Another post from Children's.  I thought we'd be home by now, but, of course, that is not the case. 

They have been trying to get Meagan in for an MRI since Thursday now... I was ok with the waiting because she had to have her 2 day EEG anyway..... so today her MRI finally got scheduled.  They told me to not nurse her after 2am so she could be sedated and go for her scan. So I set my alarm for 1:30am.  I woke up, changed Meagan, and nursed her.  She went back to sleep nicely (Daddy brought her bouncy seat down to the hospital thank goodness!) and I woke up at around 5am to get in the shower. The nurses had said that MRI would probably be calling up around 6am so I wanted to be ready for the day.

Around 6:30am, the nurses came in - they actually had to draw more labs because yesterday, Meagan's bloodwork results got messed up by the lab.  Her doctor actually told us the lab had messed up about 4 kids results! So all those poor kids, including Meagan, had to get stuck again for new labs.  I asked about the MRI and they still hadn't heard. 

A little while later, lab showed up AGAIN.  My goodness, what this time.  Turns out... her previous draw that morning had clotted... so she had to get stuck. Again.  I asked about MRI again and no answer yet.

Finally around 8am the nurse came in - she said that they were ready for Meagan downstairs.  When I asked about sedation, she said actually if I could nurse her when we got downstairs and then they'd wrap her really tight, they'd just do the MRI that way so she didnt have to be sedated.  So once we got downstairs and settled in, the tech came in and told me they were ready for Meagan ... so to go ahead and feed her.  Then once she was nice and full they'd wrap her tightly and get her MRI started.

She ate really well and fell into that "full belly" sleep.  I burped her and she was nice and full and fatigued.  The tech came in and bundled her really tight and then gave her back to me and we waited.  And waited.  And waited.  45 minutes later, they came to get us.  I KNEW this wasn't going to work - they had waited too long.. Meagan was going to not tolerate the noises and bumps of the MRI this far into her sleep.  Sure enough, she woke up about 5-10 minutes in to it ... and started to scream.  They could not complete the scan because she had to be extremely still - so back we went to the room - for another 4 hour fast - so they could bring her back down in the afternoon for sedation.

Meanwhile, I was asking about the MRI results - could we get the results tonight or would they call us..etc.  The nurse came back in and said actually since the MRI got moved to the afternoon, we'd probably get the results in the morning because they had no one to come reprogram her shunt during the night.

We were finally called down for her sedation at 1pm.  We got downstairs and the nurse went to flush Meagan's IV.  No go.  She looked at it - and somehow, (how I do not know because it was wrapped and padded SO well)....her IV had become bent and came out of Meagan's hand. She needed to have another one placed, which was heart wrenching to me.  Meagan has very tiny squiggly veins - she was a hard stick in the NICU.. and she has been ever since.  It always takes nurses several attempts to get a good line in - and I hate seeing her stuck all over the place.  The nurse decided to call someone from the PIC team - they deal with hard sticks all the time and so perhaps it would be easier on Megs.  The PIC team nurse did get a line in Megs on only the second attempt .. so I was very glad for that. 

Next the sedation doctor came in and talked to me about what would go on - and then they got started.  I carried Meagan into the MRI room, laid her on the table and then as they started the sedation the doctor told me to give her a kiss and they'd get me when she was finished. 

I hadn't eaten yet all day.. so I went downstairs to grab some lunch.  I called Brian to update him on what was going on and then headed back to her room in Radiology.  When I walked in, Meagan had just been brought back to the room.  She was still out from the sedation and on the monitors.  The nurse was concerned because she said Meagan's oxygen levels had gone down quite a bit a few times until she put oxygen on her.  Meagan's heartrate was also dipping down into the high 70s and 80s and staying there.  She normally wont' go below about 115.  So this was all new for her.  The nurse called the doctor in because this pattern continued for well over an hour.  The doctor was a bit concerned that she wasn't recovering her numbers and keeping them stable so he called our Neurologist and asked him to order Meagan on the monitors for the night. Honestly, I was fine with that.  If you'd seen how she looked... it was pretty awful.  I knew I'd sleep better too if she was being monitored - and we're here another night anyway, so why not.

We got back up to our room - Meagan did nurse a little and then I put her in bed to rest.  She looks and feels just utterly exhausted.  She had another seizure cluster this afternoon - including two in front of nurses.  So I'm trying to be patient and gave myself a "goal date" of the first week in February to see if I notice a decrease in the seizures.  During one, the nurse was doing Meagan's vitals and even flashed a light in her eyes. No response.  Her head went side to side and her eyes rolled.  After about 2 minutes she focused on the nurse again and stopped moving her head. Since 9am today she's had 12 seizures, including the clusters this afternoon. UGH!  It hurts my heart to see her like that.  I'm really hoping this new med kicks in during these next few weeks and I see improvement.

So now we are settled in for another night.  Meagan is on the monitors... she is quite a bit fussy, but I'm sure it's because of her shunt.  No one can reprogram it until tomorrow morning... and her shunt site is already pretty poofy and tense.  I'm sure she's having discomfort and head pressure, so hopefully morning comes quickly.  We should also find out the MRI results tomorrow.. I'm anxious and excited.... anxious there might be something there we haven't seen before or that her extra cyst hasn't shrunk ... but excited to see how much lovely brain tissue has decided to fluff out.

   Meagan wouldn't stop seizing tonight unfortunately... so after she had over 6 in less than 2 hours, the Neuro ordered some rescue meds for her.  Once the nurse gave her the Ativan, she calmed down over about 30 minutes... she did nurse a little then, and fell asleep.  She is now resting comfortably. 

MRI fail, IV getting pulled out, IV put back in, MRI redo, three lab draws, not recovering well from the sedation, no one here to reprogram her shunt, repetitive seizures.... it was quite an awful day.  But at the end of the day, I have to say I'm thankful Meagan is snuggling here with me and that she has pulled through yet another set of challenges.  She is a pretty awesome kid.

One of the nurses brought a light toy while Meagan had her long wait.

Daddy visits and gives the best snuggles

Such a long trying day... and such a trooper she is!

Friday, January 6, 2012

Avoided a New Storm

The Neurologist finally came in to talk to us today.  Her EEG showed no Hypsarrithmia (the brain wave pattern consistent with Infantile Spasms).  This is great news!  Her other seizures are acting up, though, as they had been at home.  So we talked about upping her current med, again... or switching to new one.  She currently takes Phenobarbitol -- and although it helped reduce her seizures, I haven't been impressed with its efficiency. And it makes her tired... so upping the medication even more will not make me comfortable.  The Neuro mentioned another medicine called Keppra - we have heard lots of good things about this drug from other families (who had also tried the Phenobarb first).  Many of them have seen good results, without the fatigue - so we are hoping that we have the same luck.  Before we leave, they will start to wean the Phenobarb, and build up the Keppra.. and hopefully it will keep her seizures at bay a lot better.

The doctor was able to see her videos of her spasms -- He said even though there was no EEG pattern consistent with IS, to keep an eye on the spasms since they do look so similar. He said if we don't see those go away with the Keppra once she's on a good regimen, we may have to come back for another 24 hour EEG.  Sometimes, he said, spasms can occur before they are able to get a Hypsarrithmia pattern in the brain waves.. so it's just something we have to watch. If any of that changes, he said they will be sure to jump right on it and treat accordingly.

This is only a small sample (3 or 4) but this is what Meagan's spasms were looking like.  She would go for 2 minutes sometimes!  These start around 45 seconds.  Three bigger ones follow right around the 55 second to 1:14 mark.  She was actually in the middle of one of her normal seizures she's been having - which is quite obvious.

Although I hate seeing Meagan uncomfortable from her seizures acting up, I am VERY thankful we have no Infantile Spasms at this point! That is a great thing and one less worry.  I will continue to log her spasms, and hopefully we see them get fewer and further between as we start Meagan on this new med.

We are still at Children's for another night.  Since Meagan's seizures are acting up, they want to go ahead and get an MRI done in the morning.  The Neuro said when there is a change in seizure activity, there is always a need for a brain scan to double check if there are any changes in brain construction as well.  I'm actually quite excited to see Meagan's MRI scan tomorrow ... the last MRI I saw of her brain was when it was ENTIRELY filled with fluid.  So I am hopeful I see some lovely brain tissue in there growing out!  After her MRI results are read tomorrow, and the Neuro talks with us again, we should be able to finally go home by tomorrow afternoon or evening.  We will continue changing her seizure meds on an outpatient basis and they will just monitor her seizure activity closely to make sure it is working.

  It's ironic that today is the Epiphany - the Feast of the 3 Kings.  They came to give gifts to the Christ child - and yet I feel today Christ has given us a gift with Meagan's EEG being negative for Infantile Spasms.  We have avoided a new storm for now. Thank you, Lord, for such a generous gift on this day, the final day of our joyous Christmas season! Happy Epiphany to all!

Thank goodness Daddy brought her bouncy seat  - it's the only place she will sleep besides on me! Hoping for more sleep tonight!

As another Hydro mom said - the tests stink...but why are our kids so darn cute in their head wraps?

EEG glue hair

Thursday, January 5, 2012

Lightning Can't Strike Twice

We finally got in to see the Neurologist today.  I was trying to dig up the videos I'd taken of Meagan's newest spasms so we could show the Neuro what they looked like.  "Lucky" for us, Meagan decided to have a spasm episode right there in the waiting room of the Neuro office.  I felt badly she was having one...but was thankful because Brian pulled out his phone and recorded it - so now we could show the Neuro what she was doing as it was actually happening to explain what we'd been seeing.

Once we got back to the room, the Neuro's CNP came in.  She examined Meagan, talked to us about her meds, and looked at her charts from her seizure logs.  Then she watched the video of what Meagan has been doing ....she didnt' like the look of it at all.  She thought the movements looked way too much like a specific type of seizures called Infantile Spasms.  It is important to treat these seizures early and quickly, so she said she wanted Meagan admitted to the hospital to hook her up to another EEG.  SHe said this would be the best thing because if it is Infantile Spasms (IS), they could start treatment right away.  She also wanted a new MRI of Meagan's brain - she has yet to have one since birth...and on that scan all you can see is fluid for the most part.  SHe wants to see if there is anything else in the brain that they missed or if they can see any other malformations or "red flags" so she will have that done tomorrow.  Meagan will have to be sedated for it, but, it's for the best to make sure they get good pictures on the first time around - better than having her move, not get the right pictures, and then put her through all that exposure all over again. 

We went straight over to Children's ... a lady named Connie called us back.  She was the nicest most genuine person. As she was checking us in, she was commenting on how Meagan's face was so cute and we got to talking about our family.  She told us she was so glad we had a big family and really loved that.  She said it was so refreshing to see a family open to what God had to offer them.  She also complimented Brian on having all girls and told him he was special for being a girls' daddy.  THANK YOU.  This is one of the first times someone has found out about our family size, the fact that they are all girls, and had TWO nice things to say about us!  It was so refreshing, and frankly, very nice to hear considering why we were here.  It really lifted our spirits.  So thank you Connie from Children's!

We continued with the check in process and went back to the ER for a temporary room.  Meagan got her blood taken here (poor thing is SUCH a hard stick, I feel awful any time she has to get bloodwork or an IV).

She was such a trooper getting her IV

We waited there for her to be taken back for her MRI... after a few hours, we heard there was no opening for an MRI so we'd instead go to her room and get her hooked up for her 24 hour EEG.  It was a bit frustrating, but, what isn't on this journey!?

We got to the room later in the afternoon ... Brian was nice to go home and get things for me to stay overnight.  He came back and the EEG tech was here getting Meagan hooked up. 

Meagan getting hooked up to her EEG

Now we are waiting for the morning.. hoping she will get unhooked early and move on to her MRI ... I'm hoping we are home by tomorrow night, but, in this game you just never know. 

My hope is that we get some sort of answers tonight so we can either jump on early treatment, or feel relieved these new movements are not spasms and can simply talk about a new medication "cocktail" with the Neuros to get Meagan back on a seizure - free path.  I'm praying that she is not having the start of infantile spasms... lightning can't strike twice in the same place, right?

 A few snapshots of Meagan's EEG... no clue what they mean.... kinda looks like Maura's scribbling

Wednesday, January 4, 2012

Monday, January 2, 2012

Back Again

Unfortunately, the first post of 2012 is highlighted by another trip to Children's Hospital. 

New Years Eve started out like any other fun family night.... we had a great dinner cooked by Brian.. the girls were playing in the basement... Brian and I were enjoying time together -- but Meagan just wasn't having a very good night.  She was continuing to have her coughing spells - for over 30 minutes at a time.  Not much would come up - sometimes, thick clear mucous.. sometimes nothing.  Well this pattern continued all New Years Eve ..... well into the night. We debated about taking her in, and had decided to be "on hold" for a bit...

But then, about 1:00am, she had another horrible coughing spell. Coughed straight for over 30 minutes again ... constantly struggling and turning purple again.  This time, she also ended up coughing up blood.  I wouldn't have been concerned considering her coughing history the last few days - but it wasn't the normal pink, stringed blood I"m used to seeing in mucous when the throat is irritated.  It was bright red and perfect circles. I knew it was "probably" irritation, but, I'd never seen blood like this in my older girls when they had an irritated throat from a cold. After consulting about what to do, considering the length and persistence of her coughing spells, the blood, and seizures acting up again, whether Meagan should go in to the ER wasn't the question anymore.. it was more of a nervous energy now putting Meagan and me on the road at 1:30am on New Years.  But she had to go in - we weren't sure what was going on.

I got to Children's around 2am.  They checked her right in and got us back in a room.  She was still fussing and having a coughing spell.  The doctor came in and listened to her -- he said she still sounded congested and crackly in her chest -- he noticed they had already done an RSV test, but not a Pertussis test.  He said because of the congestion and cough lasting 9 days already with no relief in sight, he'd do a Pertussis test.  He said unfortunately, we can't get results for a week..but at least when they came back we'd know whether we were dealing with a persistant cold or Pertussis - which may require her to come back to the hospital for monitoring.

 They kept her for a bit for observation - because of her coughing fit she of course started to have seizures.  Luckily, they weren't lengthy, as some had been at home, but it still concerned the doctor. He talked with me about calling our Neurologist about getting some rescue meds to have on hand.  He said some kids, when sick, can really have their seizures act up -- Meagan hadn't really been sick yet, so this is the first time we've seen how she reacts.... and her seizures do act up big time. So we'll be calling the Neurologist about that this week.

After watching her a bit more, and her oxygen levels staying steady, the doctor decided she could go home - as long as we kept up with the breathing treatments, suctioning and saline, and followed up with her doctor on Monday.  He said if she was just as bad by the week's end, though, we may have to come back and have her admitted.


We went today for Meagan's follow up.  The Pediatrician wanted to do another breathing treatment in the office so he could listen to her before and after to have a comparison, just like they'd done last week.  He listened to her before - she sounded really congested still and her cough was very tight and persistent.  She was NOT happy at the office - I was glad at least so the doctor could see exactly what we'd been dealing with all weekend.  He gave her a treatment, and listened to her again.  She still did not sound good, so he wanted her to get a chest x-ray done to make sure we hadn't missed something.  Even though she'd just been at Children's, he wasn't happy with how she was sounding.  He didn't like how she was looking either - reddish rings around her eyes and pale cheeks.... so I agreed to the x-ray.   

I wasn't going to make it to Scottish Rite in time.. so we went to the local Children's satellite location.  It tends to be crowded, and it certainly was.  When I signed in it said there was a 4 1/2 hour wait.  Ugh.  But, it was important for her to get her x-rays done.  I'd feel a lot better continuing to treat her at home if I knew for sure nothing else was going on inside.  So we signed in and waited. 

Only about 20 minutes passed, though, before I started to get impatient.  Not because I had anywhere i mportant to be.. but because as I looked around, I noticed several toddler age kids walking around...coughing...some looking pretty rough -- and all I could think about was Meagan picking up yet another bug or her getting something worse than she had.  I was debating with leaving and just returning in the morning - but I wouldn't feel as good being at home if I didn't know what her x-ray said .... so I decided before I left to see if they'd take her faster.

I walked up to the Nurse and asked if the wait was also for those of us who were only there for imaging... she said yes, probably, because they only had so many nurses to get people registered .etc...  I then told them Meagan was a shunted baby - and while I didn't want to cut in front of anyone in line, if it was possible to at least be the very next in line for the x-ray and avoid sitting in the waiting room for long I'd appreciate it...because I didn't want Meagan picking up any other germs.  The nurse immediately apologized for not noticing that on her chart and said they'd take her right away.  They got us registered, and actually put us back in a room next to the radiology area to wait so we weren't around any of the other sick kids.  The x-ray tech came and got Meagan within 5 minutes... and we were out of there within the next 10!! It worked out really well and I was glad they were so nice to Meagan.

We got a call tonight from the Pediatrician at home about the x-ray results. I was so appreciative he called us at home so we didn't have to wait until tomorrow for results.  He said the good news was her x-ray showed no signs of bacterial pneumonia...which was a relief.  He said the "bad" news was that it did show she still had a significant case of bronchilitis.... so he said it was something we'd have to stay on top of very carefully.  He said he didn't see the need to send us back to Children's a THIRD time in 4 days since her oxygen levels always checked out ok and she wasn't in respiratory distress.  However, because of her coughing fits lasting so long(now anywhere from 40 minutes to 2+ hours), and because of the x-ray showing significant bronchilitis, he wanted to manage her closely to make sure it didnt morph into something else.  We are to continue her breathing treatments every 4 hours ... we are to continue using saline and suctioning her... continue using the vicks rub and steam at night ... and we are to go back to the pediatrician's office in 2 days so they can re-listen to her and decide if we need to stay the course, or re-evaluate since we are already into day 9. He said to always go in sooner if anything changes in her breathing, or if her eating starts to impact her making wet diapers.  (She has also significantly dropped her feedings in the last day, but she's still having good diapers, so for now we are watching that closely).

I'm glad Meagan has such good doctors watching out for her with this illness - and I'm glad that (for now) we are avoiding another hospital stay.  I'm hoping she can somehow get over the hump of this thing so we are not faced with going back to Children's on Thursday or Friday.  I really want my baby to start feeling better, eating well again, and to continue the progress she had so excitedly started to make in the last few weeks. My oldest daughter had a pretty bad case of Bronchilitis as well when she was 5 weeks old, again at 2 months, and one more time when she was an infant...but she always bounced back so much faster.  Meagan sleeps most of the time right now, except when she does wake to eat .... and she is really not feeling well. I'm hoping this is because it's taking her longer to fight this thing off and I'm also hoping at some point this week, she will hit an upward swing.

In light of not slipping off my New Years resolution on the 2nd day, I will say, that I am thankful this is not a shunt related issue.  I'm glad her shunt seems to be working well and her head has stabilized (at least as far as I know).  Also, even though her seizures are popping up again, they don't seem to be to the point where she needs emergency care (thank goodness)...so we will watch those closely too.  Keep praying for little Megs so she can get over this thing!! For now I'll be snuggling her as much as possible to keep her comfortable.  I'll be sure to keep everyone posted as we progress through the week and see how she's managing it all.

Resting on Mama at Children's

Resting on Mama at home