A bump in the road

22 12 2011

In a perfect world Mason would grow up with no health problems, get married, and have 2.5 children.  Unfortunately we don’t live in a perfect world and we all know that.  Thankfully Mason was diagnosed very early with Tuberous Sclerosis and Crystal and I were educated on things to look for.  Right before bedtime on Monday night Crystal and I were putting Mason down and we noticed what we thought was a Infantile Spasm, which is a type of general seizure that is specific to Tuberous Sclerosis.  I had Crystal grab her phone and start video taping and he had one more.  I then immediately called his TS Doctors cell phone to see what we should do, and also video texted and emailed her the video.  Gotta love technology!  This was our first real bump in the road along our journey with TS since he was diagnosed.

Crystal and I then spent a good amount of time in Prayer that night and attempted to sleep.  The next day Mason got up like normal ate his breakfast and went over to Grandmas.  I received a call from Dr. Gipson and she advised us to take Mason to the PEDS ER at Johns Hopkins.  I picked Mason up and Grandma told me she thought he had a couple more spasms at her house right before nap time.  So off we went to Hopkins.

Upon arrival we checked in and were put in a room where we waited, and waited, and waited until some Doctors started rolling in and we answered the same group of questions over and over again to each Doctor that rolled through.  We saw Neurologists, Pediatrics, and so on.  In between Doctor visits Mason had a cluster of 4 spasms, two of which we got on video.  Getting it on video saved us a bunch of time because instead of repeatedly describing them to every doctor we were able to just hand them the phone and show them the video.  Eventually we were checked into a room so that Mason could get an EEG in the morning.  At least that what they told us.

Mason had some more spasms through the night and into the next day and we were stuck sitting around waiting for the EEG to get done basically the entire day.  Since Hopkins is a teaching hospital they took advantage of the opportunity to bring a whole slew of Doctors through to check him out.  Mason didn’t mind at all and he took it in stride like he does everything else.  Finally around 4:30 the EEG tech showed up and he did a 25 minute EEG.  So we were there for 26 hours so they could do 25 minutes worth of testing on him.  Not the most efficient use of time right?

At one point in time during the day Mason had a cluster of 10 spasms while Crystal was holding him and while it bothered me a lot, it didn’t have a big impact on me til later.  A couple hours later while holding Mason I was overwhelmed with emotion and I lost it a bit.  I had a similar moment after I found out Mason had tumors in his heart at AAMC.  I guess it’s just the way I deal with things, I have my one moment of weakness to get it all out and then I go back to being the strong one.  It’s very difficult to see your child going through something and know that you have no control of what is happening.  I want the absolute best for Mason and I want to do whatever I can to provide that for him.  But in that moment I couldn’t do anything but love him.  It’s very humbling and very difficult to deal with.

The one bright spot in all of this is Mason’s TS Doctor from Kennedy Krieger.  Crystal and I are convinced that she is an Angel sent to us just to take care of Mason.  She isn’t just a Doctor, she is a caring and loving individual who we feel wants the best for Mason just as much as we do.  She has given me her work phone, cell phone, and email and encourages me to call her whenever I need to.  I don’t know ANY Doctor that does that.  She even responds to Text messages!  She spent hours with us answering questions, going over treatment options, and just being there with us.  She also did her best to help get the people at Hopkins moving.

For now we are home with our precious baby boy and have given him his first does of Anti Epilepsy Drugs (AED) and now we just have to wait and see how things progress.  More updates to come…

Thanks for the prayers!

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7 responses

22 12 2011
elissa

Here I am at work balling like a baby. Chris-never make an excuse for being emotional about your child. You are a strong man with a big heart and the only other person I know like you is crystal! Mason is blessed with you two, as well as I! He is a superhero and with all of his prayer circles and support he /and you will get through it all. Never forget to lean on your friends for support. We love you!!

22 12 2011
raymcdonald

Real men cry! Remember that fact. Growing up around our home you know I cry with the best of them.

When terrible things happen to us – we have been known to say things like “why me Lord?” and search for some reason to understand. But the better questions might be “why not me?” and “how can I bring glory to God through this?” You and Crystal are bringing glory to God and I pray for you daily.

Your family is proud for the way you are persevering and giving God glory. At the same time we hurt with you the pain that you are facing. We love you all!

24 12 2011
Andi Guard

Remember, God never gives you more than you can handle and heaven knows, he has tested me to the max.

There is nothing demeaning in the shedding of tears. It is a release so that you can be strong for the next wave. God Bless you and your family. I have started another prayer train for all of you.

24 12 2011
judie zanti

Chris and Crystal…my heart is breaking for you! There are no words of comfort. Just know that a lot of people are praying for Mason.

Judie

6 01 2012
Melisa Harrison

Just read this. Didn’t know. Your NC family is praying for you all.

7 01 2012
Kimberly McDaniel

My thoughts & prayers go out to you, your son, & all the health care providers that you will come in contact with.
Through the mist of this situation it’s wonderful to have a doctor that truly is a blessing to you!
We may never understand why God allows things to happen but we just have to trust Him & thank Him for all the blessings & wonderful people he puts by our side to help us through!

11 01 2012
MARGIE HUCKS

I just read all this and now i just have to cry. It is so sad. Brenda sent a Christmas card with pictures and Mason is such a beautiful baby I thought everything was well with him. I am going to pray for him and for all your family and tomorrow night at Prayer Meeting, I will ask our whole church to pray. God DOES answer prayers.

I love all of my Maryland family.

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