The good... the bad... and the ugly

So the good news is that Miss Riley DOES NOT need a shunt.  The entire probe experience really wasn't all that bad.  Riley was a champ and took it all very well.

It was an early morning!  Riley's look says how we all felt!

Pretty piggies pre probe.

We were at CHOC very early Thursday morning and the procedure took less then 45 mins from start to finish.  We were a little shocked when we went back to the recovery room to see the giant probe coming out of her head.  I was envisioning a small thing.  We nicknamed Riley the unicorn while she had the probe in.  The actual size of the probe was teeny tiny but, the entire machine was much bigger!

What is this thing???  We were promised that it did not hurt.  It just looked SO uncomfy!

REsting in the PICU.  The machine to the right monitored her pressure.

 

Riley was monitored on the PICU floor.  It was nice to be in a familiar environment and NOT be in a life/death situation.  Because really that is when you end up in the PICU.  It was a gentle reminder of how far we have come and also a reminder to count our blessings and be thankful for many things.  I've said it before but, you just don't talk to other parents when you are in the PICU.  It's sort of an unspoken rule.  Dave did speak with a mom (as she engaged him) who has a son that has leukemia and came down with the flesh eating bacteria after receiving a cut on his leg.  He's been in the PICU for 3 months fighting for his life.  We remember how it felt to be in the trenches praying for a miracle and my heart aches for all of the parents standing beside their children praying, hoping and waiting.

The PICU is home to some of the sweetest nurses.  We've met many and really they are all angels.  They remembered Miss Riley and some of them came by to peak in on Riley and see how big she is getting.  As one of the attending doctors said to a group of med students during rounds on Friday, when Riley arrived in the PICU she was on deaths door.  No one really knew what her outcome would be and if she would make it out of the PICU.  Often times once a patient leaves the floor they don't know what happens to them.  He was impressed with her progress and reminded Dave as he has said many times before.  It just takes time.  Dave promised him that in a few years Riley will come back to visit and whether she's walking with a limp, a cane or a walker she will walk on to the floor to say thank you.  It's what we often dream of being able to take Miss Riley to do.

Friday evening the neurosurgeon rounded and decided that the levels that Riley had from the pressure test were normal and that the probe could come out.  He seemed shocked.  Heck I still am.  And something tells me that even if she doesn't need the shunt now she'll probably end up with one at some point in the future.  Just a feeling that I have.

No more probe.  A few stiches and a tiny bald spot.

Finally a bath!

The bad or rather sad to me part of all of this is that Riley still has fluid on her brain that is taking up areas of dead brain tissue, hydrocephalus ex vacuo.  We've known this for a while, doesn't make it any easier.  The only thing I can say and something that has been repeated to us over and over again is that the young brain has plasticity and even if these "dead" areas exist (which they do) it doesn't mean another part of Riley's brain can't pick up the slack.  Even now as Riley is rolling from side to side, holding her head up, engaging in cartoons, interacting with her brothers and reaching for toys or her mobile we know she's reconnecting.  It's as if you can slowly see the lights turning on.  It can happen and it does.  "It just takes time....."  

Since we were already inpatient and had a bunch of time to kill we had the pulmonologist that was rounding this weekend come by to check on the pressure in Riley's trach.  It was on the recommendation of the trach nurse, who is so so helpful, and I am happy we did.  Riley has not been able to use her passy valve (allows Riley to make audible sounds and talk) and it's something that is important to us to be able to put back on.  But, the pressure (or air passing around the trach) needs to be at a certain level for this to happen.  When the RT's tested Riley the pressure again was way too high.  As a result it was recomended that we have a bronchoscpy sooner rather then later to check to see if there are any granulomas (scar tissue).  So we'll head back to the pulmonologist on Friday to have this checked out.

We were able to come home Saturday mid morning and I know Riley was happy to be back home!

Sleepy girl ready to go home!

While all of this was going on I was in email contact with the doctor and audiologist at House.  Saturday evening I received an email that I was hoping would never come.  For one reason or another the doctors and team at House don't believe that CHLA is the place to have the cochlear implants done.  I'm pretty upset about this and believe there may be other underlying reasons why this is the case.  Which is most likely fueling my frustration.  It's times like these that you realize that no matter how on top of things you are, no matter how diligent you are are about paperwork and the overall process it doesn't guarantee anything.  And I feel duped.  We're basically back at square one.  Yes, we knew this was a possibility but, it doesn't even appear that Riley's case was presented to CHLA which means we wasted weeks waiting for an answer.  But hey it's not their child so I guess I can see why the urgency and importance just isn't there.  In all honesty I'm kicking myself for even making the move to go there as my next phone call today will be back to the audiologist at Providence to see where we go from here.  We'll have a letter from the doctor at House (whoop dee doo) that we can use to help move forward with an eventual surgery but.... we've now lost tons of precious time.  Sometimes all of these hurdles really get to me.  Now, I just hope that we don't have to re do any of the exams (MRI, sedated ABR) and that based off of what we have so far we can still move forward ASAP.  We'll see. 

We're back to the "norm" this week and Riley will be back in therapies and working as much as she can.  In between the craziness of the week I hope to finalize plans for Logan's 5th birthday party in a couple weeks.  It has sort of snuck up on me!

Thank you for continuing to think of us and support us through the good, bad and the ugly!  If it's not one thing it's another these days but, like I always tell people, we've learned to just take things one day at a time!

Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley

Trying to thrive

"Make up your mind that no matter what comes your way, no matter how difficult, no matter how unfair, you will do more than simply survive. You will thrive in spite of it."

I saw this on facebook yesterday.  Posted by a friend who has been down a similar road as us.  And it just spoke to me.  I think that this is what we've sort of done naturally.  I mean yes there are tears and fears and days that leave us questioning everything we're doing or have done but, for the most part we're okay and perhaps better then okay.  Because it's a choice we've made.  It's what we do for Riley, for her spirit and her mental health and it's what we do for Logan and Mason.

With that being said we've been busy busy busy since coming home from the hospital.  Trying to thrive and soak up as much time as we can with the kids.  We're also getting ready to head back to CHOC on Thursday for the ICP.  For 48 hours.  At least this time we are ready, prepared and have a plan in place.  Makes it much much easier.  Although having to be there at 530 am will be a challenge!

I've been second guessing this procedure for the last couple of days.  Thankfully, I have Dave.  He reminds why we're doing this and also reminds me what the doctor said at the appointment to discuss this.  It has to be done.  It's for Riley's good but, it doesn't make me any less nervous or scared.

Just yesterday Riley did so so well in visual therapy and physical therapy.  So well that I drove away from home and immediately called Dave to question having this procedure done again for the millionth time.  I just don't want to rock the boat although I know it's already rocking.  Even if it is decided Riley does not need a shunt we still face a series of procedures to check on her trach and the cochlear implant surgery.  So.... whether we like it or not we need to toughen up and stay strong for Riley and the boys.  They need to see the confidence in our faces with each of these events as they come up in the next few weeks.  I see a noticeable difference in all 3 when we show them through our actions and words that everything is going to be okay and that this is just part of the road we're on together.

This weekend was nice.  We were all home together.  Logan had his first friend birthday party for one of his buddies in his K class.  It's always fun to see the kids interacting and playing with one another while their parents are present as well.  Most of Logan's friends in K also attended preschool with him so they all know one another and tend to get along fairly well.  They are all 5ish though so you can imagine what that means!  I really think it takes a special individual to teach preschool or Kindergarten.  I know I couldn't do it!  But, all of Logan's "buddies" are sweet kiddos with wonderful families so Saturday was just a reminder of the wonderful community Logan is a part at school. 

Saturday afternoon our nephews Drew and Tobin came over to spend the night and hang out.  Drew, who just turned 18 (and now I feel OLD), is a wonderful babysitter and used to watch Logan for us when he was younger.  He stayed with the boys and we went to our neighbors house for a party.  It was 4 houses away, Riley was in good hands, the boys were in good hands and it was nice to get out for a little bit, together!

Sunday we decided semi last minute to take the boys to the LA County Fair.  I really didn't want to miss out on going as Logan loves the fair and so we took advantage of a free afternoon to go eat some greasy food, play overpriced carnival games, cringe at the rides that looked like they were missing a screw and people watch in one of the best venues to do so.

One of the many pictures Logan had to take in these photo prop stands throughout the fair.

Mason's first carousel ride.

Riding the rides!

Playing games with daddy.

Not even out of the parking lot and he was OUT!

Monday we were able to participate in the annual Tommy Donfrio Charity Golf Tournament.  And no, I did not golf.  My pretty pink clubs still decorate the same corner in our garage that they have since the day after I got them.  It's an event that we love being a part of put on by family/friends that are so dear and wonderful to us.  And in honor of a man that we are both blessed to have known.  We're just happy that things worked out the way they did and we were able to be there.  Dave's happy he survived a round of golf and even took 2nd place!  Logan claims that the 1st place team must have cheated. (He always thinks daddy is the best at everything!)  The day ended with a wonderful dinner and silent auction.

With Jen Jen!

Yesterday was crazy.  I took Mason with us to Riley's PT.  He's never been, for obvious reasons.  Try corralling an 18 month old in a room full of new to him toys.  I think that will be the first and only time we do that.  I did like that he could see what Riley was doing and the cheers he gave when she rolled on her own were priceless.  He may be Riley's biggest cheerleader!

In the afternoon we headed over to my parents house to finally try and get some shots of all 3 kids together.  I can laugh about it now but, man the boys were definitely making Julie work for a decent shot!  Riley of course was an angel.  So relaxed and happy to be out on the grass in the cooler early evening weather.  We're excited to see what Julie was able to get.  Trust me when I say it was not an easy task trying to capture these 3!

Logan may be crazy at times but, he adores his sister.  Blurry pic from my phone but, it really captures the love he has for her.

Perfect shot.  Blurry as it's from my phone again.  Logan trying to boss Mason around and holding Riley.  Mason trying to get to sissy and Riley looking at her brothers like they are crazy....

The pretty princess.  Taking a break from pictures with mommy.

Pretty much captures Mason.  He would not stop at all!

I'm going to include the link for the CHOC walk again.  I know the next few days are going to be busy and I don't want to forget to remind you to sign up if you haven't already done so.
Team Riley

I also have to point out that Hannah (our wonderful babysitter) has blown me away with the money she has raised for this.  I went to go get the link again for today's blog and saw this.  Thank you Hannah!!!

Hannah Seeker

$320.00

I know everyone always asks us (and those that don't probably wonder) if we're doing okay and the answer really is yes.  At the end of the day, week, month we remember that we have each other.  We have another day together.  And as silly as it sounds it helps us to continue to fight for Riley and get out of bed each day.  Seeing all 3 of our kids together, watching the kids interact with one another and seeing the pure joy in Logan and Mason's faces when they talk to Riley or are around her makes the fight worth it.  Heck watching Riley's face light up when one of her brothers walks in the room is proof enough that life is ok!  Without Riley we'd all be lost. 

Thank you for the prayers and thoughts and kind wishes.  As always, we Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley!

HOME!

We're home!  Much to our surprise. 

We met with Riley's main neurologist and another neurologist who we had seen back in January yesterday.  We also met with a neurosurgery resident and the unit pediatrician.  Lots of talking.  Lots of memories of the past.  I can't tell you how badly I wish I had a cheat sheet to hand every doctor we encounter. (And I've mentioned this before so I think this time I really will make one!)  Thankfully, this time, we were placed in the neuro unit.  Makes it much easier to discuss meds, disposition etc. when the nurses deal with similar patients all the time!

We were supposed to have a follow up visit with Riley's neurologist today (if life had proceeded as planned).  We were expecting a med adjustment.  Riley has grown.  She's longer, heavier and older.  Little did we know that Riley would dictate to us when she was ready to have her meds adjusted.  It appears the seizures were to be expected.  It wasn't if they would occur but, when.  Makes you feel real secure as a parent.....


I had a feeling this was coming.  I had planned to be out of town last weekend but, cut it short by one night because Riley's neuro stats were concerning.   Her seizure activity had steadily increased and although they were "little" seizures they were still seizures.  I've read of cases where seizures in CP patients get out of control and there in no turning back.  Deep down I was sick thinking about this possibility.

Riley rolled in to this sleeping position and got comfy so that.....

 

She could take a nap looking at daddy yesterday!

Infection wise Riley was cleared.  Although our discharge paperwork noted pneumonia. (Have to love hospital billing shenanigans)  She did have a heavy dose of antibiotics but, did not exhibit any symptoms of infection other then the seizures.  And her lungs are clear.  All good things.

Listening to sissy's ?? heart, stomach?  Logan loved the stethoscope the nurse gave him!

 

We were told we would be going home today.  Grandpa Hopper came down yesterday afternoon so I could head home to get some clothes and see the boys before staying with Riley.  On my way home, in traffic, I called Dave to make sure he checked with the nurse before he left to see if the neurosurgeon would be coming by.  Well, not too long after the resident came by and said we were ready to go home.  We were not prepared!  Riley had been seizure free for 24ish hours and they would not be rushing the brain pressure probe.  So we will go back next week for a 48 hour study as an inpatient, again.  At least we'll be ready for this hospital stay!

Since I was already home I was able to grab what we needed to bring Riley home and a carpool buddy, Logan.  We had a little snafu on the freeway when a car seat strap was somehow caught in the door and got tied up in my tire.  Thought we had blown a tire but, no just tore the new leather in my car.  We were both pretty shaken before we got back to the hospital.  It was just one of those days.

Riley is stable.  Sleepy though.  Her phenobarbital has been upped and we have new procedures for seizures.  Her phenobarbital levels are higher then they have ever been and should ward off any seizures.  Thank goodness.  We expect Riley to be sleepy as she adjusts to this new dosage but, we're still proceeding with therapies and daily routine.  Riley needs it!

We had an interesting discussion with the trach nurse who first explained to us what Riley's trach would entail and how it would function as she always checks in on us when we are inpatient.  She was surprised we aren't there more..... Uh yeah, no thanks.  Although it was a reminder that hospital stays are an inevitable part of Riley's life.  It also made me think about the upcoming flu season.  We're super vigilant about germs and cleaning and hand washing so I suppose we are going to have to be even better about it.  It's hard to control germs when you have nursing care 24/7 (many different people in and out of your house) and a child in Kindergarten (the germ factory as we like to call it).  So we'll proceed with caution for the next few months.  Unfortunately, any little cold or temperature can trigger a seizure for Riley if we're not careful.

Thank you for the prayers. support, thoughts and love. They really do work! It makes this journey much easier to know that others care about our family and Miss Riley.

We're happy to be home.  Logan cheered when he heard Riley was coming home last tonight and I know we all slept much better under the same roof.   We're mentally, physically and emotionally exhausted.

Just because, a couple pictures from the day before Riley headed to the hospital.  Mason REALLY missed Riley.  He kept walking in her room wondering where she was.  In some ways the older Mason gets the harder this all gets.  He understands much more then he did 9 months ago.

He LOVES his sissy!

 

The bond these two share is still strong!

We're so lucky and blessed with all of you and an amazing family that steps up whenever these situations arise.  It's goes without saying that it doesn't matter how old you are you always need your mom.  I know I've mentioned it before but, my mom is Super Grammie and comes to our rescue whenever she's needed, rearranging her schedule and going with the flow when it comes to the boys and their activities and craziness! 

We can also always count on Grandpa and Grandma Hopper to step in whenever they are needed and at a moments notice!  It makes this all a little easier to take with such wonderful support surrounding us.
 
Thank you Grammie and Pa Doug and thank you Grandpa and Grandma Hopper!  We couldn't get through these hiccups without you! 

Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley!!!!

Riley update

Today started out very normal.  I was editing my post with updates on our visit to the neurosurgeon yesterday when I received a text from Riley's nurse that Riley had a seizure.  Followed by a longer seizure.  Ativan was given and I placed a call to Riley's neurologist's office.  Something just worried me this time.

A couple of hours later I received another text.  Another seizure.  If this happens we give Riley a stronger Ativan like drug (Diastat) rectally and head to the ER per the neurologists instructions. (We've never had to give her this until today)  I had discussed with Dave after the first incident that if any other seizures occurred today we would head to the ER.  So we were semi prepared but, hoping we didn't have to.  These seizures have started to come more frequently and suddenly.

We got to the CHOC ER in record time.  Riley's nurse even timed it and was impressed.  I promise I wasn't speeding!

We got checked in started going over the normal questions and got settled.  And then Riley had another seizure.  Thankfully, the attending ER doctor was able to come in to witness it and I had already spoken with Riley's neurologist so she was able to work with him on what now.....

It was pretty evident at this point we'd be admitted.

Yesterday at the neurosurgeon we had agreed to do a brain pressure study for 48 hours next week as an inpatient at CHOC.  Now, I am hoping this can be done now.  It's silly to me to wait a week.

Riley did show some sort of infection on her xray.  Pneumonia and sepsis have been thrown around.  She recieved a dose of antibiotics and now we wait to see what her cultures show.

I met Dave and Riley back at CHOC after grabbing stuff from home for them and walked in just as Riley had finished another seizure.  Again, witnessed by the resident on the floor.  We went through a zillion questions again and a CT scan was ordered.

Riley was amazing during the scan and we settled back in her room to wait for results.  Riley's feeds were still being withheld so we were unsure whether a surgery would be tonight or not. 

We were both thrilled to be back at CHOC!

I finally headed home when we knew that wouldn't be the case tonight.  The CT scan shows no change from the MRI from 8/7.  In other words it's not an emergency situation that requires someone to be woken up.  (Like a grumpy neurosurgeon :))

So now we wait until the morning to see what's next.

I'm home with the boys and Dave is at the hospital with Riley.  I'd like to say we're used to this by now but, really we're more used to all being home together.

I missed Logan's first back to school night tonight and feel horrible about it.  My mom was a trooper and life saver today when all hell broke loose and my IL's saved the day by relieving her before I could get home.  It truly takes a village.

We'll wait and see what tomorrow morning brings.  For now I am ready to collapse in bed with Logan who has taken it over along with 20 stuffed animals and blankets.

Mommy was much more prepared this time and brought all my goodies!  Including our new Memo quilt!

We appreciate the prayers and support.  Riley is such a trooper.  She was trying to pull off her IV and kicking at the nurse when she was checking on her.  Good to see her feisty but, much harder to keep her happy as a patient when she knows that she's going to be poked and prodded!  She has the fight in her though and will continue to Fight On!

Love,
Dave, Megan, Logan, Mason and Courageous Riley

A punch to the gut

Sometimes I feel like I really have a love/hate relationship with the Internet and google.  The hours I've spent researching things for Riley and trying to stay on top of her illness and everything that goes with it can be overwhelming.  But, those hours have also allowed us, as Riley's parents, to be really educated about things that were so foreign to us and have given us the tools to be Riley's best advocates.

I mentioned in the last post that we were going to seek out a second opinion on Riley's hydrocephalus.  Mainly because her MRI from a few weeks ago caused the doctor at House to question whether she needed a shunt or not.

Tuesday Riley had her follow up appointment with Dr. Irwin.  I mentioned to her what my concerns were and she agreed to talk to Dr. Loudon, a CHOC neurosurgeon, about our concerns and have him review Riley's recent MRI.  Trust me when I say that Dr. Irwin really is such a blessing for our family.  Sometimes explaining why you think x,y,z to a doctor can be intimidating.  I mean I don't want to sound stupid or silly and Dr. Irwin has always listened to what we've had to say and has always steered us in the right direction.

Dr. Loudon reviewed Riley's case and agrees that Riley needs intervention.  His office just called to set up an appointment.  I'm assuming that means a shunt.  We'll be seeing him Monday afternoon in his office.  I'm sort of numb right now.  I don't really know what this all means or what he is going to have to say on Monday.  I hope and pray that he is able to help Riley.  And that we've caught this without any other significant damage to Riley's little brain.

I can't tell you how strong my mommy instinct was on this one.  I just knew.  Now I am hoping that  whatever intervention is done is beneficial for Riley in the long run.  Please say a little prayer for us on Monday or send all of your good thoughts.  This is going to be one of the toughest appointments we've had since being discharged from the PICU.

In other news... we've picked the company we're going to us for Riley's CI's.   We chose Cochlear and the type of implant that Cochlear provides is one that looks like a hearing aid over the ear with the attachment to the magnet on Riley's skull.  We chose this one for a variety of reasons and really think this company was best for Riley.  We're still waiting to see if CHLA is willing to take her case and now with the intervention needed from the neurosurgeon we may be looking a bit farther out for the CI's. 

We had a great long weekend together and Logan is really enjoying Kindergarten.  He's even begging to stay at daycare after!  It makes it much easier to focus on other things during the day knowing that he is so happy.  He's in good hands.

I'll leave you with a few pictures from our weekend.  I'm out of words right now and just ask that you keep Riley in your prayers and thoughts.  And as always we continue to Fight On!

Logan being a model at the mall on Saturday!

 

 

Mason playing at the Sacco's on Sunday

 

 

Daddy surprised us on Tuesday with a visit to PT!  Best daddy ever!

 

 

Doing homework together!

 

 

And last but, not least, our pretty princess snuggling with daddy.  She's getting SO big!

 

Love,
Dave, Megan, Logan, Mason and Courageous Riley