Hospital Stay #2

Marek woke up in a great mood. He ate a nice big breakfast so he would be happy for his PT appointment. Unfortunately as he was in his car seat on our way out the door he had a another cluster of spasms and of course it lasted 20 minutes. Marek always gets very sleepy after a cluster and ends up taking a pretty long nap afterwards. So we knew then PT was going to be a challenge.

On our way to PT I was on the phone leaving another message with our neurologist. It was literally making me sick to my stomach every time he had a seizure and I still hadn't heard back from his doctor. 


PT actually went fairly well given the incident that happened right before we left. He was cranky and really tired but his physical therapist assured us she was able to see everything that she needed in order to complete her evaluation. I'll start with the good news first. He was able to perform the "stair climb" which is a reflux that babies should have that precedes walking. We were pleased to hear that. She informed us that he has very low tone throughout his trunk and that will be her main focus to begin with. She walked us through a number of exercises that we can help him do at home. She also taught us two new ways to pick Marek up. She told us our days of just scooping him up and holding him are behind us. We now have to maneuver him to the "sitting position" before we pick him up...EVERY TIME! This will give him dozens of opportunities throughout the day to use his muscles. We started practicing when we got home, we ourselves have a lot of training to do. I picked him up the old way a few times and after he was in my arms realizes it so I put him back down and re-picked him up the new way.

We finally got a phone call from the neurologist around 2pm. I explained to him that we are not happy with his current medicine and we think it is time to start on ACTH since his clusters were getting worse. Thankfully he agreed! He would like to start weaning Marek off of the Vigabatrin, but said he could start the ACTH in the process. I learned that taking a child off of these drugs is very serious and it has to be done very slowly. It will take Marek over four weeks to be weaned off this drug.

We were told that the neurology floor at Children's was full but the neurologist would put our name on the list to get the next available room. I was a little upset that we couldn't start as soon as I hung up the phone with the doctor. (When you have a child that has IS you know that every day is crucial in the fight against spasms).Children's called me an hour later to tell me they had a room for Marek and to bring him in. So we packed up all our things. Let me tell you that we felt like "seasoned" hospital goers this time around. We knew exactly what to bring in order to keep Marek happy and occupy ourselves as well.

So we are now at the hospital. We will start the paperwork tonight. They informed us that it is quite a lengthy process to get the ACTH but the good news is that they have a supply on hand at Children's and that it won't be coming from Canada. ACTH will be given to Marek through injections in his thighs. Boy are we happy that our little peanuts has some extra chub on his legs. Hopefully he won't feel a thing. He won't receive his first injection until tomorrow. The doctors will be administering his first few doses while Ryan and I practice giving injections to an orange. They want us to be able to show them that we are capable of giving Marek injections before we leave the hospital.

At this point we are unsure how long we will be in the hospital and how long he will be on this drug. ACTH has a LONG list of side effects from high blood pressure, increase in blood sugar, change in body looks, irritability, increased appetite and weight gain, suppressed immune system and even death. (You can only believe how hard I had to swallow after he listed the last side effect). His glucose and blood pressure will be monitored closely over the next few weeks.

Since Marek will have a suppressed immune system we now have to become very careful with him and germs. We are going to have to become "mean" parents to keep him safe. While on ACTH we are going to have to be on "lockdown" at our home. We can't have any visitors not even Marek's Gigi, Grandpa, Papa or Aunts and Uncles. My mom and I will be staying home with him and Ryan will be our "lifeline" to the outside world (as long as he stays healthy). It breaks my heart that I have to ask our family and friends to stay away at this time so that Marek stays safe. We know how much everyone loves him and will be missing him. You can always drive by the house and look through the window :)

We are praying with all our might that this works. We have heard stories that after one injection children never had a cluster again and we have also read that it could take weeks. We would love more than anything for that first dose to be his magic potion but as long as they stop we will be over the moon excited.

Might Man Marek is one strong baby and he is going to win this battle against Infantile Spasms. He even has his own cape thanks to Jordan's mom Valerie for making him one. Continued prayers are appreciated as he starts down this new road.

WE NEED OUR SUPERHERO HEALTHY.