Saturday, April 26, 2014

Sometimes life forces us to pause

As some of you already know, Friday April 25th, was a very rough day for us. At 5am I looked on the video monitor set up for me to check on Noelie. He was awake but fine.[I should mention that he was fine the day before. No temp, not irritable, nothing unusual] I fell back asleep at woke again at 7:30. I went into his room and noticed his right arm twitching and he wouldn't look at me when I said good morning to him. Something was wrong. I called Noel (dad) to come look.

We both have experience with seizures and determined that was what was going on. We also know that most seizures don't last very long and he may come out of it soon. We waited, what seemed to be, 10 minutes and finally called 911. We have an O2 monitor and dad thought it would be a good idea to put it on him but we hadn't needed for so long I tore the house apart looking for the sticky part that attaches to him. [at least someone wasn't crying hysterically] Noel and Sam stayed back and came up later.

We live about 1 mile from the fire department so I heard to sirens start to blare. Then I heard them our house. [I am glad they were there but it was very scary knowing that those sirens were for us] They picked up Noelie, I put on some jeans and socks and we were off, in what seemed like the longest 15 minute, ambulance ride of my life. The paramedics were great! Coming from a small town I knew both of the ones in the back with us. They asked so many questions I felt like I was getting a pop quiz. I could barely concentrate. I could barely breathe. 

We finally got to the ER. Noelie was getting worse. They were ready for us. They asked more questions (continue the pop quiz) and gave him some medicine up his butt. That didn't help. They put in an IV and gave more medicine. baby stopped jerking. They said he probably was still having a seizure because he was still unable to make eye contact. From the time I found him to the time he stopped jerking was almost an hour.

They admitted us to the ICU and ordered a CT scan to see if maybe the shunt was not functioning and causing pressure. They also ordered an EEG to hopefully give more answers into the why. I finally got time to catch my breath. He was stable. Noel and Sam showed up. They took Noelie away to his CT scan.

They came back and the results of the CT scan showed that the shunt was working fine. He had no temp. His blood sugars were within normal range. They hooked him up to the EEG and had a video recording him all night.
Hooked up to the EEG and resting

He slept well and had no other seizures during the night. They came in and disconnected the EEG on Saturday around 9:30am. He was acting like his old self again and I finally got some smiles out of him.
Saturday morning
Oh that smile...that makes all this worth it. We talked to the neurologist this afternoon. She said he had a Tonic-clonic seizure that was mainly on the left side of his brain, caused from the Hydrocephalus. Because this was his first one and it lasted so long, he will probably always have long ones now. This time doesn't seem to have caused any major damage because he is acting exactly like his old self. We are being sent home on medicine and will have another kind to give him right away and hopefully stop it.

Friday was a bad day. One of the worse. We were always told that this might happen, but he had been doing so good. We were getting into a routine with him and Sam. We were making plans. We were enjoying all the smiles. Then suddenly it all stopped. 

As I look back and am not in panic mode I can see some good in the situation. Noel had enough sense to put on the o2 monitor. It was Friday and my parents had the weekend off so they could watch Sam while I spent the weekend in the hospital with Noelie. It is not the shunt malfunctioning. The neurologist that normally follows him, and knows his history, was working that morning. Our priest was called and always makes his hospital rounds on Fridays so he was able to be there. The nurse that follows us in the clinic (helps clarify things for us and coordinate appointments) just happened to look at the hospital census sheet, saw our name, and was able to visit to see if she could help in anyway. I am able to find some humor and joke around with our long lost "friends" in the hospital. [I have decided that I no longer like always having to come and see them. They never visit us. We never meet for coffee. They never set up a play date. This one sided relationship just isn't working for me any more. If they don't start making some effort to visit us then we can no longer be friends. :)] 
Brother Sam came for a visit

All joking aside, I pray that we can control this with meds. I expressed how scared I was to bring him home because, even though we have video on him at night, he was quite. What if I don't catch it? What if he has one for longer then an hour? Let's just say that the answer I got didn't make me feel better. When I think about that possibility, I start to tear up. I am trying to not let my mind wander to that dark place. That place of life without our Noelie. This is our new reality. I am told with most special needs kiddos that this is normal. They make 5 steps forward and 2 backward. We just have to keep climbing.

 These events like this that keep popping into our life cause us to pause and reflect. [kind of like a funeral] They force us to realize what is really important. They force us, as husband and wife, to work together in a very stressful situation. (I feel so lucky to have Noel as my partner in life. We work very well together and both bring out our strengths in these situations) These situations force us to be flexible. These situations make us cancel all our plans and remember that we are not in charge. No matter how much we plan and think we got it figured out, we don't. We really don't. 

For now, Noelie is napping. He needs a bit of Tylenol for pain and now his seizure medicine to add to his other couple meds, but he is doing well. He is such a trooper. I am getting smiles and giggles today. They want to keep us for one more night and should be going home on Sunday. Thank you for all your prayers and well wishes. Thank you to those that offered to help in anyway. Thank you to those that came to visit. Thank you to the EMT's that came to our house yesterday. Thanks to our "friends" in the hospital. We love you all and are grateful for every one of you. 

If you want to know more about tonic-clonic seizures you can click on the tab at the top of the "home" page or click on the link here. This will take you to the page also.


  1. Wow what an amazing journey, I will be praying :-)

  2. I'm glad your little one is doing better.

  3. Seizures are scary no matter what kind of health history the baby has. I know I will never forget my son's first one. Praying for Noelie and you all.

  4. Thank you for the kind words. All the support is great!

  5. I will pray for you! I'm glad that you are able to have your marriage grow stronger through the difficult times and that your baby is getting such good care.

  6. Tracy, my daughter piper was diagnosed with Infantile spasms at 5 months and we have been unsuccessful at seizure control thus far. In and out of hospitals reg and are now are seeing some pretty intense MRI findings. You are bang on...It is scarey, teriffying and i feel for you. Good luck momma!

  7. Thank you for the encouraging words Erin Gibson! I am praying for your little one. Hopefully they can give you some answers soon along with something to help your baby girl get better.