Wednesday, May 27, 2015

Pam, MRIs, and Results, oh my!

Isaiah and I arrived at the Ronald McDonald House on Monday.  We had to be over at DuPont bright and early on Tuesday, so being here the night before is a big help. 

We spent the evening getting ourselves ready for the week and enjoyed dinner in Isaiah's new travel high chair.  

We ordered this chair with our summer vacation in mind (more on the in the future), and I'm taking advantage of this trip to get us used to it.  

So yesterday morning, Isaiah and I were up at 5:30. He's such an early riser lately! It was to our benefit though, as we had to be checked in at 7:30 so it gave us time to have breakfast at the House (I bring my own bagel for him and scrounge around for myself.  They had eggs in the shared refrigerator! Yay!)  

When we arrived at the hospital, I had to fill out paperwork for Isaiah for his first Fast MRI. A "Fast MRI" is just that, fast. It's much faster than his sedated MRI, which lasted an hour. This one was just about two and a half minutes. I was surprised to find out that I needed to fill out paperwork as well, as they find it best to have a parent in the tube with a child Isaiah's age. I couldn't disagree, and was thrilled to be so hands on without stepping on any toes. 

We got in our scrubs and gown and hid my wedding ring in one of my bags.  We made our way to the MRI area. I placed Isaiah on the MRI table and then the tech advised me of how to hop up on my belly at Isaiah's feet.  Once I understood where I had to get my head and arms (so I didn't hit them when the table got into position for the MRI), we put in ear plugs (because it's LOUD in there), Isaiah had a cage-looking thing placed over his head and we were moved into the tube. 

I'd be lying if it didn't feel longer than two and a half minutes. We sang some of Isaiah's favorite songs, Wheels on the Bus, Old MacDonald, and Boom Boom, Ain't it Great to be Crazy. We held hands the entire time and I had my head sort of resting lightly on his belly while looking up at him. Ours eyes were locked almost the whole time and when the machine would run it was so startling but Isaiah didn't show any fear. 

The whole thing was a bit hard on my heart. Being in there with him....I am so, so glad I was there with him, but it threw the reality of what my baby goes through in my face. It's scary. It was so hard not to cry, looking into his brave little eyes.  And then at one moment, the machine made a loud boom again, and he grabbed my hands tight and said "I gah you", which means "I've got you."  Tears in my eyes, guys. It's something I say to him when we're on an elevator or somewhere new and he's nervous. I always tell him "I've got you. You're going to be ok."  We were in that MRI machine for him and there HE was basically telling US we're going to be ok.  

After the MRI, we headed to Day Medicine for day one of his Pamidronate treatment.  

I'd be lying if I told you that went off without a hitch. Our appointment was at 8am and pamidronate didn't start running until 11.  Three hours of waiting.  That was a record.  Then I went to give Isaiah his milk before a nap and I found out that I somehow forgot the nipple to his bottle.

How does one forget such a vital part of a bottle? I tried a straw, rejected. I tried a hospital-grade nipple, rejected....and then he was so set on milk from a bottle that he wouldn't eat any other snack so nap time was rough and cut short...thankfully when he woke up, he ate my peanut butter crackers which held him over until we got back to the McDonald House. 

Before heading there, we had one more with Isaiah's neurosurgeon...that we were late for, but thankfully Day Med called up to them so they were aware we were in the building. 

One thing that happened in the morning, before Pamidronate... they take blood, measurements, etc...Dr B. measured the circumference of Isaiah's head and it came out to 50.9 cm.  Isaiah's previous two measurements were 52 cm. 

I didn't take this measurement for gold....but then a few hours later, the nurse for Isaiah's neurosurgeon measured and got 51cm with the same tool she's used in the past. A whole centimeter! This puts his head size back on the growth charts!!!!

Isaiah's head shrunk! Whoop whoop!!!!! Even though I was told it wouldn't because of Isaiah's age and how hard his skull is, it did.  

That alone had me feeling good, but then Dr C showed me the MRIs...

Do you see all the white stuff around the outside on the left picture? That's spinal fluid. The large, almost heart-shaped area is where Isaiah's ventricles are located. Huge and full of spinal fluid.

On the right you see much less spinal fluid and BRAINS! His ventricles are still larger than they should be but they are making progress!  

Even the shape of his head has changed.  I knew that, but to see it in the MRI just makes my heart smile. 

I want to sing from the rooftops and jump in the air kicking my heels.  The shunt is working! And doing a darn good job! And something is going just as it should!!!!!!!!

I want to just revel in this good news. I just want to soak it all in and feel this feeling all the time.  I have to schedule another Fast MRI for six months from now, which I will match up to our pamidronate schedule. And I hope and pray that it shows more progress. 

Now let's start day 2 of Pam! 😃

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