Day 8

Woke up a little before 6am.
I find Andy still asleep, he wakes up in a good mood, and eats without a problem
Dr. Pugh came in by 7:30, excited that Andy only had one spasm in the last 30 minutes.
I ask more about the MRI scan, and the answers are the same, we won't know more until the actual images are obtained from Bellevue. The test results for metabolic disorders and genetic issues will take a long time. Follow up in 2 weeks.
Andy was then discharged.
We went back the McDonald house, Andy did not want to be set down, so I was happy to comply. He's going through a growth spurt, and the amount of food he was eating made my stomach hurt. And well, watching him have seizures now makes me feel sick to my stomach. It happens so often.
He napped most of the time we were waiting, until Ben picked us up. It makes me sad that the Volunteer who checked us out was shocked that we want to make a small donation.

The ride back was a time of reflection for me. The prospect of our now lifetime battle with epilepsy and our social calendar for the rest of the week. I feel anxiety about being taken out of my safety zone. That beautiful, protected bubble of other parents with sick children that I could talk to almost 24/7 if I needed support. Now I will be surrounded with parents of healthy children again. I imagine it being very similar to how Andy may feel one day because no matter his differences or disabilities we live in a world for the "healthy".

When I got home it was chaos, I had to clean up after the mess that was left by daddy then I assembled the grill. I left all the suitcases packed, and decided it could wait. Andy settled back home, he was a little cranky but mostly tired. He's asleep now, and his sleep schedule is almost back to what it was.

Now to wait up for the new episode of Awkward.

Day 5 - both MRI scan results...

The day our lives were flipped upside down.

We woke up, and a fresh breakfast was already cooked for us. It was a nice way to start the day. When we arrived at the hospital, Andy was awake and happy.

The doctor came in, and said he had something confusing to discuss with us. He had the MRI results.

Andy's MRI was normal. There is no brain damage.

How can this be?

The doctors at Bellevue did not send the actual images of the previous scans, only their findings. Those had shown mild to moderate damage to the posterior internal capsule. It never explained the seizures during the first days of life, but did explain the tone issues and global developmental delay.
Now we have no explanation for anything.

The infantile spasms are still a concern, and definite based on the EEG. We were assuming the cause was an abnormal brain. That assumption is gone.

Now Andy will have 8 blood tests, another urinalysis, and spinal fluid tested. He has to be tested for many metabolic disorders. If those are ruled out, we will need genetic testing.

It's like being in the NICU all over again. The nurses have been very kind - Andy's case is "interesting" and "rare", and the support is felt from everyone trying to make this as easy as possible.

I'm overwhelmed by the kind words written to me in text, and on FB these days. I have tears in my eyes thinking about it.

I have a warm meal in my belly thanks to the volunteers who cooked at the House this evening, and I'm watching Andy rock in the swing that was brought by an organization in the hospital to help make the stay more like home.

I'm filled with happiness that he doesn't have brain damage, mixed with a dreaded anxiety for the next diagnosis. A lot will be known on Monday, so tomorrow is more time to think.

Edit: the MRI of the lower lumbar spine was normal. And seizures have continued today, and keeping an official seizure diary has begun.

Day 4 - into the hospital

I'm a new person. I'm filled with hope and faith. Let me tell you what happened.

This morning was spent running around, packing final items and holding Andy more. He had no seizures. We arrive at the hospital, he's cranky and sweaty. 

EEG time. Daddy holds him, and we work together as a team. Andy does everything right on time, he's upset when it starts and has his first seizure of the day. Perfect. Then he drinks his bottle and falls asleep. Perfect again. The woman doing the EEG calls the doctor, asks him to come in while we are hooked up. He enters the room, he has already analyzed the EEG as it was being recorded.

Andy is officially diagnosed with infantile spasms. We have a plan. We go and have a more traditional sit down appointment with the doctor, and he sets our expectations for the hospital stay. We agree. 

After being settled into the room with Andy's new crib, I ask a nurse about us both staying the night. It's okay, but one of us has to sleep sitting up. Ben books a motel room for us, for the two nights he's here. It's distressing, because it is a shared room. Then I call to check the Ronald McDonald house. They have a room for us. Suddenly, my patience has returned.

The anesthesiologist and radiologists shock everyone and are ready to do his MRI scans tonight. 5pm. When our little man goes for those, we check into the house. Everyone is so kind, our room is beautiful, there is everything we could ever need.... From plenty of food, to game rooms and a laundry room. Dinner is hot and sitting out for us to help ourselves. I'm brought to tears with appreciation. 

We return when Andy is in recovery. He is awake, but groggy. It reminds me of when he was a newborn. I hold him and give him a bottle. Oh how I love my baby. He's having lots of seizures but now hooked o monitors and an IV. We go back to the ro, daddy helps feed him, and give his medicine. Double the seizure medicine dose. He falls asleep in my arms.

We walked back to the house, then sat on the porch watching the rain fall and exchanging war stories with veteran parents on the porch. All is calm, and no one can predict tomorrow. Our kids are strong and we will be stronger for them.