Surgery day - We made it!

What a crazy amazing day. We made it past the first hurdle! MJ’s surgery went well! My baby is finally resting and I am one tired mama and so I am going to give you the bullet point version:

Long term prognosis if we didn’t do surgery:
• Continued and irreversible neurological damage to the spinal cord including paralysis.

What they did in MJ’s surgery:
All of this was done with the goal of giving the cerebral tonsils more room, relieving compression/pressure, and restoring the flow of spinal fluid.
• Craniectomy – Removed a small portion of bone at the base of the skull.
• Laminectomy – Removed the bony “bridge” of the C1 vertebrae
• Duraplasty – Opened the lining of the brain (called the dura) and implant a synthetic patch.
• Shrink the cerebral tonsils – The portion of the brain that was compressed and previously lost function due to compression.

Blessings:
• MJ went to the hospital this morning with minimal anxiety and handled everything pre-op like a champ!
• Dr. Adelson with Barrow’s @ Phoenix Children’s and our surgery team– Amazing Amazing Amazing in so many ways!
• The volunteers at Phoenix Children’s Hospital – Wonderful!
• Child Life group whose sole purpose is to help the kids prepare (social stories), distraction, and fun time to keep their spirits up (when he is up for fun in a couple of days).
• Did I mention the awesome surgery team? – We got hourly updates via cell phone throughout the entire surgery!
• The surgery went well and as planned with no complications in the OR!
• Pain management – The ICU team is staying ahead of his pain and he is getting good pain management right now.
• MJ is getting good rest in between his episodes of nausea.
• The times MJ has woken up for very brief moments he is showing good signs of being more alert each time and showing his typical personality – EXTREMELY important when dealing with neurological issues!

Short term challenges:
• Reaction to the anesthesia and now brain swelling (normal) is causing MJ to get nauseous and throw up a lot.
• MJ has had his catheter out for quite a few hours and has not gone potty. If he doesn’t go soon (by midnight our time) they may have to re-insert a catheter.
• Neck strain – MJ’s muscles in his neck are very stiff from surgery and he is keeping it in one place too long while he is resting. He needs to move his neck more (back and forth on the pillow) or we will face bigger challenges and he will stay in ICU longer.
• MJ’s incision is bleeding a bit so they need to keep a close eye on it.

This week’s risks:
• Infection – Pray for no meningitis!
• CSF (cerebral spinal fluid) leak – If the CSF starts leaking out his skin/incision they will have to open him back up to stop the leak.

Longer term issues/risks:
• Scar tissue – if too much scar tissue builds up it can cause a new blockage and more surgery.
• If MJ’s syrinx (cyst) in his spine continues to get larger even after surgery he will need another surgery to place a shunt in to re-route the CSF.
• MJ will have less range of motion in his neck and could get pain so he will have to learn to avoid certain activities that may hyperextend his neck (ie: he will always have to sit in the back half of a classroom so he does not have to extend neck to see the board/front).

I just have to say in all of this God is so good. We have an amazing medical/surgical team for our little boy. We also had an amazing spiritual and prayer team of friends and family join us at the hospital today. And most of all thank you to each and every one of you who have been praying and are continuing to pray.

We still have a long road ahead – but God is good and He hears our prayers!!!

Our day in (non-graphic) pictures

MJ had his brain surgery for his Chiari Malformation today. Here are a few (non-graphic) pictures of my rockstar!

MJ in the Phoenix Children's Pre-Op Playroom



Movie with daddy in Pre-Op

Glossy eyed MJ with the anesthesia doctor after he had some "silly juice".

 

MJ about 45 minutes post-op

 

MJ in ICU about 4 hours post-op

Yeah pretty sure my man received Rock Star status today - or Super Hero status. I think I might have to make him a cape when we get home!

 

Magic of PCH

The magic of

I just have to say Phoenix Children’s Hospital and all of its providers and staff are absolutely amazing. Every single one of them is there out of love and care for these children. They have done everything in their power to make often scary experiences these children go through and the environment it happens in to be fun, lighthearted, and even magical.

I know that sounds crazy. Magical? A hospital experience? Yes – PCH creates a magical environment for these kids and makes them feel like they are on an adventure. As a result it softens the emotions of everyone involved and helps parents like us to know that our child is in the absolute best hands – because not only are they one of the best pediatric hospitals in the country but also because you can see they really care. It’s such a sweet blessing to see your child smile (and not cringing) when he finds out he is going back to his “hopistal”.

We drive down the road and MJ will stretch his neck to catch a glimpse and as soon as it is within sight he gets a smile: “There it is! My hopistal – the one with the hand on it!”. It’s as if he feels he is going off to a far magical place. 

Colored floor lighs in Atrium

Atrium of main tower at PCH

Walking in to the building the lobby is big, and bright – full of natural light coming from amazing windows with sparkle everywhere. Sparkle and colored lights in the floor that change as you walk by. Fun colors on every wall. It’s hard to feel you are even at a hospital because you are charmed by your child’s amazement at all of sparkle and surprises around each corner: wagons, brightly colored furniture, bright and textured walls – some with lights, coloring pages and crayons, Disney Movies. There is even a sparkle in those that greet you when you come in. That’s an odd description I know –what do I mean? I am talking no matter what role they fill at PCH – all have a genuine love, care and respect for your child and the reason they are there.

MJ getting weighed/measured.

They talk to your child and make them a part of the experience – not pretending like they are not there or talking over their head. “Hi MJ? How are you today? How old are you? You look so tall.” Your child is the star of the show – the absolute #1 priority. The other thing I love about PCH providers? The parents are just as much a part of the “team” as all of the professionals. Parents get a say in how things are done, when things are done, and get to be involved in things that are done. They ask and listen to what you have to say and do whatever they can to make special accommodations. They know that they have the medical expertise – but only you as a parent have the “MJ” expertise. We are all there for the same reason, and all have the same priority and they make you a partner in the process.

MJ listening to daddy's heart

MJ on the PCH squishy
tiles summer 2012

Does it make the road ahead of MJ’s brain surgery any less scary? Not necessarily. But it does make things a little more manageable and gives you a confidence that you couldn’t have a better team to handle such a scary situation for such a precious package.

MJ is a smart cookie. He knows what doctors are for and deep down he knows he is sick and needs help. But something about the sight of that hand with the heart on the building and the way he knows he will be treated in there makes everything okay. Even he knows God has put him in good hands.

As a former PCH patient almost exactly 23 years ago I know God is in total control and has us right where we are supposed to be. Thank you Lord for the work you do through Phoenix Children's Hospital.

Social Stories at work

Once MJ was confirmed to have Autism and I knew social stories was a common therapy I became incredibly more intentional about using them in MJ’s life. Yes –we had the nightly regimen of “What are we going to do tomorrow?” but I knew any time MJ’s routine would be disrupted we would have to be much more pro-active and intentional about it.

We are extremely blessed that in the last year MJ’s speech has grown tremendously and he no longer is considered speech delayed – he actually has gone the other way and is now considered gifted in his language skills compared to other children his age. However much of it is due to something called echolalia which I will discuss in a later blog. We are grateful that MJ is so verbal and this is why he is described as having “high functioning” Autism because he is so verbal. He is extremely visual and always has a ton of questions about things. I mean a ton of questions.

MJ's plane social story

So when it came to “bigger” routine changes in his life I have literally created story books that we read to MJ ahead of the event. It gives him time to prepare himself, to process things, and to ask questions. We used it for our Thanksgiving trip when we took a plane to CA to see family. It worked amazingly well. He saw pictures of the plane, airport, security – and he knew what was coming so he felt more in control of his environment.

 

MJ's surgery social story

So this week as we were getting ready to discuss and prepare MJ for his surgery I knew a social storybook was going to be crucial. We took the boys out for ice cream on Saturday 2/23 then retreated to a quiet area and read MJ (and his brother JR) the story book. MJ knows the situations we are reading are real and he knows we do it to prepare him and give him the opportunity to ask questions because we know it helps him. He recognized some things from the hospital in the story book due to his other visits he has had the past 6 months including MRI’s.  But you could tell he was really trying to process everything. We gave him lots of encouragement and lots of time to ask questions.

Discussing the surgery story with both boys.

The interesting thing he gave us at the end of our conversation when he decided he was done …he said “Mommy – when you are talking about this and reading this to me – it feels like I am not here – it feels like we are not here”. I didn’t quite catch what he was saying and just closed with some words of encouragement and scripture about putting our trust in God, and God’s peace and healing.  It wasn’t until we got home and put the boys to bed that Dan realized what MJ may have meant by that comment. We think he was trying to explain that surreal feeling you get when something you hear is just beyond your comprehension or you haven’t been able to come to terms with it yet.  How amazing that our 5 year old with Autism was able to put that feeling into words. Blessing counted.  

We know this is taking time for him to process everything. We are just praying he has peace and no fear. We are also praying for our own peace so that we can be strong for MJ.

Social Stories

Autism gives MJ a lot of OCD issues and a tremendous amount of anxiety. One of MJ’s anxieties is anything out of routine. He appreciates a very strict regimented schedule and if we deviate off it is overwhelming to him, he feels out of control, his anxiety hits the roof and he literally cannot function.  It was not uncommon for MJ to burst into tears then quickly escalate to meltdown mode because he felt so out of control of his environment and his situation. We figured out (even before autism diagnosis) after continuous melt downs that preparing him ahead of time seemed to help his anxiety.

We noticed if we mentioned what was going to happen (in any situation) ahead of time it helped him feel prepared. So we experimented to see if we discussed the next day’s activities with him before bedtime if that made a difference giving him more control of his situation and feeling prepared for the next day. “What are we going to do tomorrow?” is now part of our bedtime routine and a nightly question from MJ.

It quickly became a necessity to him and he has now been heavily relying on that part of his nightly routine or (again) he has a melt down and can’t function. What we learned from his neurologist during his autism screening in summer of 2012 is that what we had discovered helps our son simply by trial and error actually had a clinical term and is a very common therapy for children with autism called “social stories”.

I had not researched Autism therapies at that point in his life because he had not been diagnosed and I didn’t want to jump ahead of ourselves. We really were just going by prayer, instinct and trial and error in figuring out what helped our son. I was amazed that God had already led us to a proven method to help our son without even realizing what we were doing. I knew it was Him leading us because I certainly could not have come up with that.

Thank you Lord for the ways you lead us and guide us.  I am so amazed at even the practical ways you provide and the ways you continue to prove you are right there leading and guiding us – even when we don’t realize it until later.  We are counting our blessings each and every day.

Flyin' High - NOT our last adventure

Yesterday marked a milestone in our journey as it was my last day of work before taking leave for MJ’s surgery. I found it to be bittersweet of course. I am grateful for the time off and the insistence from my colleagues to not even think about work and just take care of my family. But as I packed up my things and prepared for my 6 week absence I found myself almost not wanting to leave. I knew the second I walked out that door there would be no more distraction to help me escape from the reality of what we are facing. This was it. It was time to face everything head on and focus completely on MJ with absolutely no distractions.

All week long I have been in “preparation mode” making to do lists and trying to complete them. Even on the way home from work yesterday I stopped and ran an errand, and made a phone call in the driveway as I was waiting for Dan and the kids to join me so we could pick up some dinner. Are all of the things I am doing things that need to be done? Only some of them. I have this need to keep busy and check things off our list so I can feel prepared for what is coming. Again – distraction.  In reality there is nothing that can truly prepare you for watching your child go through major surgery with risks and seeing them in pain.

This weekend needed to be all about our family. No phone calls, no errands, no to do lists. Just family. Soaking up the time we have left before we all go through the tunnel of fear in the week ahead. We purposely scheduled MJ’s surgery for after this weekend. I remember sitting in the surgeon’s office and they asked when we wanted to schedule. I looked at my calendar and knew that today (2/23) was the Buckeye AirShow and MJ would love it. We had planned to take him. So I asked if we could do it after – I knew it would be a special time for our family to just enjoy each other. In a way I wanted MJ to have one last thrilling and happy adventure before he goes through a journey of pain and anguish.

Yes – today was all about our boys, about our family. There were planes, helicopters, emergency vehicles, police vehicles, music, dancing and the boys had a blast. They loved looking at the planes on the ground, watching them fly around and the helicopters going up and down giving people rides..

I realized today as I was watching the boys enjoy the planes that after surgery MJ won’t be able to enjoy watching planes the way he did today – the way he always looks up in the sky when he sees a contrail and talks to Dan about the science of what a contrail is.  It is a common side effect after surgery that you cannot flex your neck in the same way because of the lack of bone protecting the brain and the pain it can cause. It’s a shame that sometimes we take things for granted until we are faced with such trials.

I am so grateful we did this today and that we were able to schedule the surgery around it. I am so glad I was able to give my baby one last adventure that he will remember – that we will all remember – before his little life gets flipped upside down. He may not be able to flex his neck and look up at the planes the same way he did today – but as I promised him today – someday we will fly high in the sky and take a ride in a helicopter – and for another brief moment toss all of those worries aside for his next adventure.
 

Words

Ups and downs. The past couple of weeks have been full of them. Having 3 weeks to “wait” for a brain surgery is both a blessing and a curse. Distractions such as work and daily tasks of life have been very helpful. But when it comes down to it – you get moments where life slows down, the distractions fade away, and reality sets in. My sweet 5 year old boy is about to have brain surgery.

I have to keep it together for MJ. I need to be strong for him. But it takes everything I have to keep it together at the times I need to keep it together.  So when he is not around – when I am alone, or MJ is in bed it just boils over: my sadness, my pain for him, my fears. It comes bubbling to the surface and consumes me.

What I have realized is that in order to be strong for the one I need to be strong for I have to release the emotions somewhere. I need to allow myself to feel the emotions I need to feel to get through this. Honestly it is not something I am used to doing. I am usually the one taking care of things, taking care of other’s needs, being there for everyone else…being the “strong” one.  So the thought of allowing myself to just cry, or lose it in front of a friend – it is terrifying.

But God knows how to get to me. He puts the right people in my life and gives them the right words – just what I need to hang on and keep going. Then he plays them in my head over and over in my weak moments –and it gives me something to hold on to.

These are some of the words that many of you have spoken to me in the last few weeks that have stuck with me. God literally brings these words to the front of my mind just when I need them. He has used all of you to encourage my heart.

There is a reason God gave you guys to MJ as parents – you have something he needs.

I see he has strength in him just like his mom.

You guys are such amazing parents.

Thank you for allowing us to pray with you.

Thanks for allowing me to join you on this journey.

You are loved. You are blessed.

I don’t know how you all are doing it – you are so courageous.

It is such an honor to pray for you. Thank you so much for the updates and sharing your story with all of us.

So what I want to say to all of you is this. Don’t ever think for a second that what you feel is a “simple” word of encouragement is not enough. Don’t underestimate the power of your words. I cannot tell you enough how many times the last few weeks your words have given me something to hang on to.

Always speak from your heart because you never know how God is going to use your words in people’s lives. Each and every one of you is so special to our family, and your encouragement means the world to us.

God Bless you all.

MRI #2 Results

This whole week has been a fog and I have been going through emotions of the reality and haven't gotten myself to blog it. Sorry!!!

At our appointment on Monday 2/4 the Neurosurgeon confirmed his concern about the condition effecting MJ's spine and is adding a diagnosis of Syringomyelia. He has a syrinx ("cyst") that is significantly compressing the spine in his mid-back. Due to the MRI results and the risk of permanent damage they have recommended surgery very soon. They will remove a portion of his skull, open the Dura (lining) of the brain and insert a synthetic patch. This will create more room or "slack" for the brain to relax and hopefully restore normal flow of spinal fluid (remove the blockage). According to the surgeon the big risks are of course the anesthesia and meningitis since they will be opening the lining. Although he says he has only had 1-2 cases of meningitis and he catches it within the first follow up appointment and it can be treated with meds.

We received confirmation yesterday that MJ's surgery will be Thursday 2/28 at 12:00p noon  at Phoenix Children’s Hospital.

We will be taking the time we have until then trying to prepare and make a list of challenges we will have and if we need help. Right now I have the added stress of finding out that my time off of work (approx 6 weeks) will be unpaid - which is extremely difficult since I am the sole earner. So we have to figure out how to overcome that challenge - if you could please pray for that specifically.

Although we knew this was a possibility we are both fearful for the challenges ahead and at the same time hopeful.   Thank you to all of you for your prayers and support!

Today is the day

I woke up this morning and thought to myself “Today is the day”…

• Today is the day MJ gets his spine MRI.
• Today is the day we can start working towards getting more answers.
• Today is the day we begin the journey of resolution and healing after diagnosis.
• Today is the day we need to cast all fears aside and be strong for MJ.

Then this song starts playing in my head and every time I think the somber thoughts of what today could mean…God plays this for me instead (see lyrics below and scroll down to bottom for video!!)….

• Today is the day the Lord has made…..

I love how HE knows how I work and how to get to me - Through people and music.

Thanks God!

 

 

Lyrics from "Today is the Day" by Lincoln Brewster (scroll down fo video!)

I’m casting my cares asideI’m leaving my past behind

I’m setting my heart and mind on You

Jesus
I'm reaching my hands to yours

Believing there’s so much more

Knowing that all You have in store for me is good

Is good

 

Today is the day You have made

I will rejoice and be glad in it

Today is the day You have made

I will rejoice and be glad in it

 

And I won’t worry about tomorrow

I’m trusting in what You say

Today is the day

 

Oh, oh, oh

Oh, oh, oh

(Today is the day)

Oh, oh, oh

Oh, oh, oh

 

I putting my fears aside

I’m leaving my doubts behind

I’m giving my hopes and dreams to You

Jesus

 

I’m reaching my hands to Yours

Believing there’s so much more

Knowing that all You have in store for me is good

Is good

 

Today is the day You have made

I will rejoice and be glad in it

Today is the day You have made

I will rejoice and be glad in it

 

And I won’t worry about tomorrow

I’m trusting in what You say

Today is the day

 

Oh, oh, oh

Oh, oh, oh

(Today is the day)

Oh, oh, oh

Oh, oh, oh

 

I will stand upon Your truth

I will stand upon Your truth

And all my days I’ll live for You

All my days I’ll live for You

 

And I will stand upon Your truth

I will stand upon Your truth

And all my days I’ll live for You

All my days I’ll live for You

 

Today is the day You have made

I will rejoice and be glad in it

Today is the day You have made

I will rejoice and be glad in it

 

And I won’t worry about tomorrow

I’m giving You my fears and sorrows

Where You lead me I will follow

I’m trusting in what You say

Today is the day