Infantile spasms How a daddy sees it. (Well at least how this daddy does)

Infantile spasms

How a daddy sees it.

(Well at least how this daddy does)

          As I stepped out the door to go to drill that weekend it felt pretty much like any other. I knew that it was going to be a long weekend of “do this” and “do that” out in the heat.  Probably not going to sleep much and of course because the 489^th was drilling it was going to rain. I kissed my little boy as a dropped him off at his grandparents and I hit the road.  Nothing was further from my mind as I was driving away that afternoon then the fact that after that weekend our lives would never be the same and that my little boy was in for the fight of his life less than 48 hours from now.

          The next evening I called my wife to see how she and the baby were doing. Of course I was expecting the normal response of, “he is good just playing and not wanting to go to sleep,” so to say that I was surprised when my wife answered the phone with fear in her voice would be an understatement.

          “What’s wrong,” I asked, “I don’t know,” she said. “It’s something with Bridger.” As I felt my heart welling up with fear and anger, knowing that I was far from able to rush to her and my little buddy’s aid I listened as she described to me what she thought were seizures. I stood there shocked at what I was hearing trying to pull from all of my medical training as an EMT and figure out what was going on with my normally happy, healthy little boy, and how I could fix it. I tried to be strong for my wife and reassure her that things would be okay (I had no idea how much of that I would be doing in the coming weeks) as I explained that they did sound like seizures to me but that if she was really worried about them that she should take him to the ER. She surprisingly calmly stated that she would feel better if she waited until the following day just to see what happened. That was the first of many sleepless nights to come worrying about my little boy.

 As we returned to the armory the following afternoon I called my wife to get an update. It was by no means the phone call I wanted to have. I knew things were bad by the way that my wife answered the phone. The playful, loving, familiarity was gone from her voice when she spoke and what was left in its place was fear and hurt. “How is the monster,” I said trying to lighten the mood. “Not good,” was all she said. “How many seizures has he had today?” The words almost seemed to choke me as the thought of what the answer might be kept me from wanting to say them. Twelve was the horrifying answer that I got.

          The next few hours went by in a blur. I left drill with little more than the simple explanation that my boy was seizing and that I needed to go. I made the normally hour and a half trip from Spanish fork to my house in right at an hour. I came through the door of my house to find my wife holding my little boy, the look of fear and disbelief on her face was enough to instill in me the gravity of what we were dealing with. “Hold Bridger,” her words cut me to my core as she placed my now no longer happy little boy into my arms. Crunch! Bridger started having one of his seizures, his whole body convulsed as his head came shooting forward and his legs went up. I watched in fear and helplessness as his little eyes started bumping from side to side like something Daffy Duck’s eyes would do after he gets hit in the head. Crunch! There it was again. Over and over and over again his poor body would try to fold itself in half  for a few seconds then he would relax for a few then start right back up again.

The Absolute helplessness and fear that I felt in my heart at that moment was almost more than I could bear. All I could think to do was keep it together for my wife and try to be strong for her.

For those of you who have read Grandpa Spilker’s post you know how he reacted when we took Bridger down to their house that afternoon to see what he thought.  I’ll let you refer to that for her parents’ take on this. 

That evening after worrying a close family friend of ours who happens to be our doctor. We knew that we were going to be on our way to Primary Children’s Medical Center in the morning.

Bright and early there we were walking into the emergency room of PCMC. After the normal getting checked in we were shown to a room, and were quickly followed by a nurse who started hooking our little baby up to an EEG machine so that they could watch his brain and see exactly what was going on. Well while all of this was going on Bridger was having seizures just like clockwork every two hours. By this time we had freaked out a few nurses and they told us that Bridger was going to have to have a MRI so he couldn’t eat anything  and that we would have to just let him be hungry for pretty much the rest of the day. Well by 11 that morning we had a team of neurologist in the room with us looking at our little boy and the results they had captured on the EEG. Their reaction surprised us. They let us know that they were pretty sure that he had a condition called infantile spasms, but that we had caught it super early so we had a great chance of it being all cleared up in just a few weeks. They wanted to run some more tests but they were sure that they could have our little monster all better in a very short amount of time.

After all of the doctors came and went we were admitted to our room in the hospital so that our baby could try and sleep and we could wait for all of the tests that they had scheduled for us. That was the first time that Cretia and I really had a chance to look at each other and take stock of our situation. We knew what our baby had. We knew that we had a lot more tests that we were going to have to put our little friend through. However despite all of that the doctors told us that they were extremely confident that they could get our little boy better.

That night was the first of many nights that my wife and I would sit together and cry. I held her as I tried to choke back my tears and let her sob and cry for a good long time on that narrow hospital fold out bed. That night was one of the longest that I can remember. Every few hours someone would come in and check on Bridger, ask us how we were doing and if we needed anything and then leave. Cretia and I tried to sleep but it never came, we were both just so worried about our little boy.

The following day was more test and waiting and then they started our Baby on the first dose of steroids that they were so sure would have him all fixed up in just a couple of weeks. It was late when we finally left the hospital and started the long drive home. Our heads filled with more questions than answers our hearts filled with worry and trouble and the most frustrating part was there was nothing that we could do except trust in the doctors, love each other, and pray for our little boy.

Well I have to say as a daddy, things for me couldn’t have gotten much harder. All I wanted to do was take my baby, give him some sort of magic daddy dust, and have him be all better. Take my wife in my arms tell her I love her and have all of her hurt be fixed and things get back to the way that they were before all of this awfulness started happening. But I couldn’t. I could do exactly, well, nothing except watch as my only little boy morphed into some sort of in coherent blob of his former self ( Thanks to the steroids and seizures ) and do my best to comfort my wife as she cried herself to sleep night after night.

For the dads and fathers out there who are going through something similar: All I can tell you is simply stay close to your family. Love your wife with all that you have. Don’t feel like you have to fix everything just let her vent and cry and scream and be there to listen. Along with that don’t feel like she is blaming you for what is happening. When she is mad and frustrated with the world it’s because she feels like her baby is dying. Remember that you are her best friend and that she needs you now more than ever.

Love your kid. Spend as much time with them as you can because that time is precious. Savor the little moments that you get when you know that your baby recognizes you and feels safe in your arms. They are your baby so be there for them love them till you run out of love and then keep loving them some more. They need their daddy just like you needed yours when you were a kid and were sick or hurting. Daddy’s are special people and can make things better in a way that only a daddy can.

Finally, be the big papa bear for you kids. When you and your wife feel like something needs to be done or that there is something really wrong with your baby. You tell the doctors what you want done and you don’t stop until you get what you feel like you need. You and your wife know your baby and you know when there is something wrong or when a treatment is not working. Don’t let them give you the “we need more time” line of crap, the answer is no. Be scary if you need to be and get your baby the help that they need.