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.

Saying goodbye

Andy is so sleepy he falls asleep on my chest before being laid in the crib.

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. 

Day 3

I should have known that no good has ever come from silence. Andy was silent, so I went to check on him when the alarm went off. This is what I found.

He was sweating badly. Immediately I undressed him, changed his diaper, and gave him a few minutes to cool down. After 10 minutes he still felt hot. The next step was to take his temperature. 99.5. Not a problem; however, warmer than any temperature I've taken for him. His skin felt sticky, and he looked green. More seizures. Long, horribly clusters lasting 4 minutes this time. I fed him breakfast, he fell asleep. On and on today my baby slept. He woke 2 hours later, still not looking too good. I took him out for a walk, dressed lightly, so he could cool off in the breeze. He was silent, and looking around. No seizures. We came home and he fell asleep as we walked in the door. He slept for another hour. Lunch, his therapist arrived. Andy smells bad. A sickly smell. We discuss all the progress he has made in the last month. She leaves, he falls asleep. This is our day. More throwing up.

Daddy came home, and helped. He understands why the house isn't clean. He tries to play with Andy. Not a lot of response, and Andy goes back to being a newborn, cuddled between his parents on the bed.

We had to wake Andy for his final feeding of the night. It felt reminiscent of his first nights home and being too tired from the phenobarbital. He appeared nauseous. One bite of food to get down the medicine, and a bottle for the rest of the medicine. Seizures began during the feeding; this was the first feeding from Daddy that he seized during. Salt was being rubbed into my wounds, watching Daddy hug him and whisper "Stay with me," the same words I repeat all day long during the seizures when I'm alone.

Our bags are packed now. The same bags that I was going to pack tonight, back when we believed we would be visiting my family. Very different but the same.  

Day 2

Andy started his new seizure medicine last night. He woke up this morning happy as can be. He didn't have any seizures until he started eating his breakfast, then he had a couple. After breakfast he was tired, and I laid him down to sleep. He woke up. He was crying, so I held him. Then he had a cluster of seizures. I recorded them on video and sent the email to the neurologist.
He napped in my arms. I cried.

His occupational therapist cancelled her session, we prepared to go out. I watched him, memorizing the way he plays with his toys, and the curves of his face.

The time we spent out was nice. Andy had a lot of seizures and cried so hard the entire time he wasn't sleeping. But I knew he could see/feel the sun on his face, and aware of the sounds surrounding him.

He continued to cry long after we came home. He wasn't wet, hungry, or teething. All he could do was cry. When it was time for the last bottle, he cried because I kept pulling the bottle out of his mouth. He was seizing so how could I keep feeding him?

I'm giving him two seizure medications at this point. One by liquid, the other in a powder. By the end of the weekend I could be injecting medicine into his legs.

I'm done for the day. I have nothing left to give to anyone.

Day 1

He wakes up. I carry him downstairs for breakfast. Seizure. I sing him a song. Seizure.
The physical therapist arrives, he must be woken from a brief nap. How many seizures can he have in those 30 minutes? At least 8.
All day. It only stops when he's sleeping.
The phenobarbital being slowed down makes him cranky and unable to sleep. Being unable to sleep brings on the seizures.
By 5pm he has one that lasts 2 minutes straight. It was the longest two minutes of my life. For now, he is peaceful. In his crib he is just another baby. Just my little boy.
The dawn is more frightening than the dark this time.

Every day, like the one before

Today I noticed Andy was doing something different. Well, I noticed it two days ago but it became more frequent early in the morning. I called his neurologist, I was told he would call me back. A very reassuring call took place, with instructions to video tape what was happening and contact his pediatrician. The pediatrician's office said they would refer to neurology and request an EEG. Someone called to schedule the EEG on Friday. After emailing two videos, and waiting on baited breath for hours, then timing events- a call. I was away from my phone, it was 5pm. Office closed so I couldn't call back. 5 minutes pass.

The neurologist calls me back. Compliments my videography work. He tells me that my son is having seizures. I'm numb. All that I can say is, "okay".

My own brain functioned enough to turn the phone to speaker, so I wouldn't be left repeating words to my husband. We heard the diagnosis of seizure type, treatment options and a vague prognosis. The 3 of us made a plan of attack, as poor Andy laid next to us unknowing and vulnerable. I will hug my little boy tighter tomorrow.