Wednesday, December 17, 2014


I have really made a concerted effort to be strong.  I have really tried to take everything that happens to us in stride but today, I sort of fell off the proverbial wagon.

Today, we made our pilgrimage down to get Sam's final report from the Pulmonologist.  I was expecting a good report because why would I expect a bad one?  Shelbie was also scheduled to see the doc because she has decided to stop breathing several times a month and it's terrifying and since she has a history of Asthma, I felt it was a good idea to see this guy before he retires next Spring.  He's really great, and after watching him today, feel even more blessed that we got in contact with him again after 15 years!

Anyways, I was so prepared for a good report that we were carrying on like crazies in the waiting room.  It started when a man walked in and made some joke about all three of us sitting there on our phones.  I was sending work emails and Sam and Shelbie were playing games.  We all put our phones down and engaged in some pretty amazing comedy.  We were laughing so hard and the guy who made fun of us was trying really hard to be proper and grumpy but he was totally laughing on the inside, I could tell.

We discovered that Shelbie could control the TV in the waiting room with her PHONE!!  It was awesome, we were messing around with the channels and just hoping we didn't get caught.  In the middle of our immaturity, the cranky nurse from last visit showed up in the waiting room all in a dither!

"Okay, we are going to have to decide how we are going to do this!" she said all out of breath
"Okay, how about we do it the easy way.  Is that an option?  We tend to gravitate towards easy because we don't like hard because we are lazy." I replied.  As a side note, the old guy trying not to laugh was clearly amused now.

Her whole problem was how to deal with two kids from one family seeing the same doctor.

I offered her some advice, "Let's just put us all in one room and he can address them one at a time."
"Well, I guess we can do it that way but the front desk didn't bother getting her to fill out the health history so that's a problem."
"Alright, well, she could fill that out while the doc visits with Sam." I suggested.

We left to our exam room with the nurse all huffing and puffing, the guy in the waiting room chuckling, me rolling my eyes at him and the other two laughing and tripping down the hall.  It started out as a great appointment with just the right amount of fun and humor.

That quickly changed when the bad news hit from out of nowhere!

All of Sam's pulmonary function tests were totally normal.  Excellent.  No signs of pulmonary fibrosis which is a huge relief since that is deadly for kids with Dyskeratosis Congenita.

Now the bad news!

Sam's lung diffusion numbers were more than double what is normal.  Over 200%.  This is bad.  98% of the time, this means there is an Atrial Septal Defect in his heart.  I seriously didn't know how to react.

It was the most disconnected moment ever!  I saw Sam's face fill with the most bitter devastation.  Shelbie's eyes welled up with tears and I was somewhere back in the waiting room laughing at nothing but everything and wanting to shrivel into a ball of surrender.  It was surreal; unreal!  At one point, I felt their eyes piercing through me as if to scream...MOM!  Do something! But at the same time, those same eyes were completely empty in disbelief at what was happening.  Empty and needed me to fill them with something to make it okay.

I asked him if this possibly had anything to do with his extremely low heart rate, 40 to be exact and high blood pressure.  I had also heard that people with heart defects can be prone to migraines and wondered if Sam's vision loss could be attributed to this.  He said the migraines weren't likely.  He asked Sam more about his vision loss and when he was through, the doctor said, "What happens with ASD is the blood is not directed anywhere and just goes where it wants and as a result, the platelets clump together and instead of being diffused in the lungs, it goes to the brain and causes a blockage in the arteries.  He's probably having mini strokes."

What??? Mini strokes!  It makes total sense! But not my Sam!  One day when Sam was just 5 months old flooded back to my memory.

Shelbie had been at Primary Children's, she was 6 years old.  Her platelets were at 1.  We were being prepared for the worst case scenario.  Sam had an appointment with a Cardiologist because of 4 heart murmurs.  We rushed from Primary's back home to make it in time for Sam to see the Cardiologist.  I clearly remember sitting in that waiting room, exhausted.  Shelbie was fragile and at high risk for hemorrhaging,  Sam was fussy and screaming and I couldn't stop crying.  All I remember about that appointment was the doctor saying there was possibly a problem with his heart.  A week after that, we were robbed, homeless and we were a mess.  I never followed up on that Cardiac appointment.

Whenever Sam had a check up, some doctors would mention a murmur, some would not.  I just ignored it.  

I won't get into Shelbie's problems now but she has many as well!

It was such an overwhelming day!

We left after having a million more tests lined up and hopefully surgery before the end of the year because remember...I only have basic Medicaid for Sam come January 1.  Don't quote me but I'm pretty sure basic medicaid doesn't cover heart surgery!  Just sayin', I was lost in my own head.

I had to run to TJ Maxx to pick up one last Christmas gift.  Shelbie and Sam left to look at other things and I felt the anxiety of it all rushing towards me.  I watched it gain momentum and crash into me.  I had to sit down.  It took everything I had to not break down into a puddle of tears.  I'm so tired. It's been such a hard year.  We have to finish with hard?

I knew I had to get up.  I knew I had to find a way to carry on.  Sam and Shelbie needed me to. If I get upset, they get more upset.

I don't know what is going to happen.  There is a 2% chance the excess pressure in Sam's lungs is his abnormal, normal.  I'm just having such a hard time holding on to that number!   I can't imagine what will happen to me financially if he needs surgery and we can't get it now while I have good insurance.

There are so many variables.  It's hard to stay in this very moment!  We have to though.  We have no choice but to be strong.  


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