Gratitude

Yesterday we traveled to Rochester for another opinion. What I heard turned into the most humbling moment in my life. 

We saw Dr. Kwon. We wanted her opinion of the MRI's (she's reviewing and will call us back) and how she would have treated the IS had we been going to her clinic/when she would wean the Zonisamide. (We are currently going to start weaning in a week).

She told me that she had never seen a case of IS being brought to control as fast as Andy's. If he was seen by her, she would have began with phenobarbital and ACTH would have been the last resort after every other medication. She never uses Zonisamide. She also would have predicted a far poorer outcome then Andy has. She explained that this is difference between an older doctor set in their ways like herself and a younger one like Dr. Pugh in Albany. And they never would have known they weren't doing the best for him. 

How do I look Dr. Pugh in the eyes and thank him for saving my son's brain? I'm overwhelmed with gratitude and each word feels more inept than the next. 

Genetic testing again

Tomorrow is Andy's next neurology appointment. We will discuss his progress, any possible seizure signs, more genetic testing, and schedule a swallowing test to be done at the hospital. The testing this round will be an Infant Epilepsy Panel, and the company that runs it will come out to our home to take his blood. My poor little buddy.

Even more work for me tomorrow, I'm going to be contacting the Medicaid Service Coordinators in my area and requesting a care at home waiver. Then I'm contacting the Division for Developmental Disabilities to see if there are any services I'm missing. I need to follow up with getting in contact with his new feeding therapist and how progress is going for his vision therapy. I found out recently that vision therapy is another service that can come here to take care of Andy!

Last night he slept very little. My guess is that he's hitting more cognitive milestones. He's becoming a sweetheart who laughs over hugs and kisses. 

Day 36

EEG at Albany medical center.

The hypsarrhythmia is gone from the EEG. No sign of infantile spasms. 

It does show abnormal activity. Andy will always be prone to have seizures for the rest of his life. 

Tomorrow we start weaning the ACTH. If a spasms happen, we go back to the full dose for two weeks and wean again. 

If/when another type of seizure happens I have emergency medication and I'm to call 911. 

One day at a time we go. Will know his opinion on the Bellevue MRI scans in two weeks. 

Day 35 EEG eve

The night before appointments bring more excitement then anxiety these days. Tomorrow we do an EEG and see if these past two days without spasms have really been without them. I recorded a video of the way Andy's eyes have been looking up in case it's important. 

The shots might not work forever, but they are far better than without. Each injection is easier for both of us. If Andy has to continue on them for more than the next two weeks I'm going to start practicing doing them alone. With daddy there, just to see if I can. 

I've found the story of Dr. WJ West mind blowing and fascinating. I find everything about IS interesting. It can not be recreated in lab tests with rats because no other animal has it. It is unique to the human brain. 

You can find more info here: 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093242/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/

Day 25 - skipped a couple nights

It has been too hard to keep up with everything, AND my blog. It shows how priorities shift when something needs to go. My days have been spent dropping Daddy off at work, then going to the doctors since Wednesday. We did the first ACTH shot in Albany on Wednesday. Then because of the time, and slowly needing to make the shot earlier in the day, I've had to go to our pediatricians office.

Monday he has his 9 month wellness visit, which is good because Dr. Pugh wanted him seen by the pediatrician next week anyway. In two weeks he has an EEG scheduled. If there are no spasms, we do the EEG, then I receive instructions for weaning. We will stay on the zonisamide for 3 months after the injections before weaning that medication. It's very certain Andy will have some form of seizures for the rest of his life.

I have to organize the deliveries of the medication because I have to be home, to sign for it and make sure it goes straight to the refrigerator. I've had to organize the 4 visits a week for therapy. By tuesday I should have a visiting nurse coming once or twice a week too.

Andy doesn't leave my sight, because it is essential to not miss any spasms. He had none on Wednesday. He had one group of them yesterday. If I had not gone upstairs to check on him, I would have missed knowing they happened. There was none today, and I know that for sure. I stayed by his side through sleep. He's eating a lot. And crying a lot. When he's full and happy, he is so happy. It's all about keeping him comfortable. We will be starting Zantac in the morning to prevent heartburn, I'm hoping it helps with his excess gas. I can hear him awake right now. He wakes every 30 minutes at night. Off to my baby!

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.