Day 15

Andy woke up at 6:15, screaming into his crib rails. Over and over I removed him and gave him his stuffed animals.

I received an email from his neurologist:

The following testing has all come back NORMAL:
- Cerebrospinal Fluid (CSF) Neurotransmitters
- CSF Pterins, Methyltetrahydrofolate, and Pyridoxyl 5 Phosphate
- CSF Lactate

He did well with physical therapy. Lauren was impressed with him hyper extending less and said she could only encourage more tummy time.

I noticed when encouraging handles on his bottle that his hands automatically pull downwards if something is in their grasp. But then later on he took a clump of my hair, looked at it, and shoved it into his mouth. He then appeared horrified and dropped it! I'm still so very proud.

I checked his mouth since he was being overly fussy and noticed he had a front tooth coming in. And oh was he fussy. Daddy came home shocked how aware Andy was, and that he interacts and is excited when I sing to him. Daddy found 3 teeth cutting in.

So tonight I went and bought some pedialyte pops for tomorrow. Hoping for a little, white tooth tomorrow!

And he only had 5 spasms! That's it!

Day 14 - no rest for mom

Andy woke up a lot last night. As in more than 6 times. It was so often that I was sleep walking... Or I should say running during some of it. From my bed to his crib and back. Could be teething.

He woke this morning at a normal time, then slept for over 3 hours. He had no phenobarbital in his bottle. He is on 1ml a night for the rest of the week, then we are done. Forever.

I see him waking up in front of my eyes. His frustration is being shown in the expression on his face, he's throwing his arms more in the direction that he wants. And when he can't get to it, he's expressing himself vocally. I didn't push his stomach too much today, and he didn't cry or act like he was missing the extra food he would normally have. He had OT and I could see his progress. He didn't try to hyperextend a lot, and let his neck fall forward more. He's holding onto toys better and looking where she's trying to get his attention.

I went to babiesrus and found Born Free sippy cups. Thankfully, all pieces are interchangeable so I added the handles to his bottles. I'm excited to see what progress can be made!

The spasms have slowed down. He did have a group of them, about 50 or so I lost count, when we were out. There was maybe 6 or so throughout the rest of he day.

I'm hoping he's asleep for the night. He's already been up crying once, but went to bed to begin with at his old bed time. One step at a time.

Day 13

Andy didn't have as many spasms today, because he slept most of the day away. When he was awake, he was very playful!

His progress has included: reaching when we are going to pick him up, sitting in his bumbo without hyper extending, and holding toys.

Tonight was exciting. Andy had projectile vomit out his nose and mouth. I'm very sure it's a side effect of the increase of medicine we started on Thursday. He has to keep us on our toes!

Day 12

Andy started the day at 5:30 this morning. I could barely believe I was hearing him crying. He went back to sleep, then woke 2 hours later. He is teething, a lot. I can feel at least 10 teeth under his gums, and part of his gums looked dark red/bloody. Poor kid.

It was nice to spend Saturday doing our usual routine. Andy liked going shopping even more, between going to the mall often and starting to see, he never stops looking around!

A very thoughtful friend came by today and dropped off a swing for him to use. When he got fussy around 6, I put him in it. He laughed! Oh, how he laughed!

He fell asleep after about 45 minutes, or maybe sooner. I had fallen asleep on the couch watching him. I had to wake him for his medicine bottle, then put him to bed. He didn't seem to mind.

The spasms were less, except on the drive home from the store. We heard him crying in the backseat and didn't think too much of it. Once I turned around, I could see that he was having repeated spasms,; each one cause his head to bang against the side of the seat and made him cry. I held his head with my hand and it stopped the banging. He stopped crying while the spasms continued. Then he had almost 50 after I woke him for that final bottle. I had no choice but to wait them out and count until they were over.

He is making more progress with his hands, instead of having them tucked in beside his waist he's had them on his belly!

Day 11

I'm almost too tired to write. Every day my list of things to do grows, but I lack inspiration to do anything more than hold Andy.
He had OT today, and Kathleen told me he is still making progress. And he had no spasms until we were out at the mall. He did have more spasms than yesterday.
We tried a training sippy cup because of the handles. He held onto it for a few seconds. I will continue to off it to him more.
The best moment happened after dinner, when Daddy was finishing feeding Andy.

Andy had been crying and fussy for a couple hours. He couldn't seem to be fed enough. I noticed he had gone silent. Like a scary movie, I looked down and slowly saw a trail of bright yellow runny poop (the world does need that description), down Daddy's jeans. I ask him to not panic, but Andy did poop down him. He kept saying, "Get it off me! Get it off me!"

As I was wiping the poop off of him, he even called Andy a bad baby! I still have tears in my eyes from laughter just thinking about it. What an incredibly typical problem to have.

Day 10

I brought Andy down the street to another Quest Diagnostics, and this time he was able to have his blood drawn. He didn't seem to mind it.

All in all today was a good day, 27 spasms, but lots of love and cuddles. His napping was also more back to normal, and he was aware when awake.

He had PT this afternoon, and Lauren said that he hasn't regressed, which is impressive since he hasn't been receiving services. The muscle on his neck that I was stretching out several times a day has gone back down completely; I haven't stretched it out in a week. He needs a few more weeks before we can expect progress to begin again.

He was throwing up on me after the 3pm feeding, so daddy brought home pedialyte. He loves the stuff! Then there was no more throwing up. We all sat outside and enjoyed cooking in the beautiful weather. The pictures look like Andy didn't like it so much.

I did receive a call from Dr. Pugh today - the spinal fluid sample tested positive for infection. He is very sure Andy's brain does not have an infection and was a contaminated sample from his skin. We discussed that the spasms were increasing as of yesterday, and the increase in medication tonight. The possibility of him needing injections is still there.

Only 10 minutes shy of the normal bedtime shows that life continues on, it the most wonderful ways.

Day 9

I'm sitting down and resting for the first time today.

Waking up meant the beginning of chaos trying to balance getting back to normal and our social calendar.

Andy's spasms do not know that we have other things to do. They are gradually increasing nonetheless.

He interacted wonderfully with his friend Paisley, and seemed to enjoy her company. I had to take him for more blood tests today; after two tries the woman couldn't get enough blood from him. We have to try again tomorrow.

I had some mommy time socializing with other mothers tonight, and as bizarre as it felt, it was refreshing. The world keeps spinning even if yours has been still for days.

To speak out to those asking how Andy or I am doing, we are not okay. We are not going to be okay for a very long time. We are getting by. When we are alone we cuddle and I whisper to him how much I love him. And then he seizes in my arms. We are lost in our own world of trying to keep him comfortable, and I don't want to be anywhere else.

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 7

I woke up at 5:30, and made it to the hospital by 6. I'm informed that Andy had a seizure, different than the spasm seizures, and he was given medication for it.
The video shows him sticking out his tongue and making feeding cues in his sleep. I'm told that he was also making a bicycle movement with his left leg, and arm motions.
Two hours later a resident comes in and tells me after watching the video that it was not a seizure. And an EEG would not show evidence of the seizure that has already occurred.
At 11am an anesthesiologist comes in with consent forms for the spinal tap. I find out it will be a "senior resident" doing the procedure. I felt fear in my heart, but I'm not the type to punish a person for someone else's actions. Then I find out Andy weighs 17lbs. He's gained 8oz since Friday.

After the tap I find out they had to try 3 times and there was blood in the sample. If another is needed, Dr. Pugh (his neurologist) will do it himself.

Dr. Pugh confirms that the video proves Andy did not have a seizure. He admits and owns up to his mistake. He was described something different than the video. He had brought 3 residents with him, and requested that I play the other videos for him. I proudly showed every video with seizure activity. I believe that if one of those residents can recognize and help even one baby having infantile spasms, it was worth my time.

We won't find out any tests results for a while, and the echocardiogram was norm. On Wednesday I can take Andy for more blood work and genetic testing. Being sleepy from the emergency medication means he needs to stay in the hospital but can go home in the morning as long as he is eating properly. He keeps waking to feed but sleeps the rest of the day away. Now he is napping in my arms, and is dreaming of seeing daddy tomorrow night.

The Ronald McDonald house has been extremely generous and informed me I can stay there with Andy, so we are in no rush waiting for Daddy to get out of work.

He is still having spasms today when awake;however, Dr. Pugh says that as of right now he does not believe Andy will need injections and we should see results with the current medications.

Day 6

We get to the hospital at 9:30am, and Andy is asleep. When he wakes up, he has multiple seizures or "spasms" as they are called. The nurses are confused when we tell her he is having a lot, mislabeled them as a cluster and paged the doctor.

Dr. Pugh comes in and the mistake is explained to him. We discuss how Andy is not improving with the increase in medication, he tells us it can take 5 days to see results and we will begin to see them tomorrow. He also informs the pediatric resident that his blood tests he ordered yesterday are not in the system.

Andy has his blood drawn, and the nurse tells me to put a maxi pad in his diaper. He will never hear the end of this. It was for the urinalysis. The day was filled with spasms, and a sad silence as we knew daddy had to go home.

After daddy left, Andy napped for a whole. Woke up, and I fed him. Laid him down and went back to the house. Dinner was not ready at the usual time and I was gone for almost two hours. I return to Andy's screams. The nurse tells me she tried everything. I hold him, and he goes silent. He gave me feeding cues, so I fed him again.

Not very long after he is acting sleepy, but hungry. It is around 7pm. I know that if I feed him more he will sleep through the night without medicine. They will not give his medicine until 9pm. Andy wakes at 7:40 from not being full, and spasms over and over until 8:15 when I insist he is given his medications.

This is a discussion I will be having with the doctor tomorrow. I'm getting up at 6am to make it there before 7am. I will be there for my boy, every minute.

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.