What Just Happened?

Monday morning, my son Jackson woke up not himself. He was very lethargic and didn't want to eat. I knew something was wrong but he didn't have a fever. So we packed up the car and made our way to day care. About 3 miles down the road I looked at him in my rear view mirror and saw his eyes roll back and his lips turn blue. I pulled off the side of the road, yanked him out of his car seat and realized quickly that he was having some sort of seizure. 

Before I could make the decision to begin CPR, Jackson started responding to my voice and the color returned in his face. I called 911 and waited for the ambulance to arrive while trying to assess Jackson's state and what just happened. While getting him strapped in the ambulance he once again went droopy, lips turned blue and had a 15 second "episode" of what we are assuming to be seizures. Instead of going to the children's hospital in downtown Jacksonville, the EMT decided to take us to the closet hospital to be safe. 

We were rushed to the ER and he was immediately hooked up to IVs and monitorring. He had 2 more episodes there and we realized that he was staying somewhat alert, his heart was beating but his O2 saturation was dropping to nearly 0%. Oh yes, and he still did not have a fever. In between episodes he would come back to himself, for the most part, and be very responsive. He was baffeling the physicians and they decided to transport him to the children's hospital. 

Upon arrival at Wolfsons Children's Hospital, he had another episode in the ambulance. They rushed him into the ER and a team of wonderful physicians and nurses began the process of trying to figure out what was going on. After several more episodes occured, the doctor decided that Jackson needed to be intubated to prevent brain damage from lack of oxygen.

They had to sedate him to do this. I've seen many patients intubated and as a lover of medicine, I will watch any procedure done on the human body. But when it was my own child, I couldn't watch. I wish no one ever had to see their child like this and pray we will never be in this situation again. 

At this point, J seemed to stabilize with his breathing, heart rate and oxygen saturation. The inserted a central IV line into his groin to make drawing blood and giving meds easier. We were moved up to the pediatric ICU and he remained sedated about 12 hours. During this time they continued to do lots of tests, including a MRI and EEG to see if anything was going on with his brain. Both tests came back negative for any seizure or damage activity. All other blood and urine tests slowly came back negative as well. 

At midnight the medical team decided to pull out his breathing tube and allow him to wake up. This went sucessfully and Jackson had no problem breathing on his own. He had been sizure free for over 12 hours at this point. Early Tuesday morning was very rough as J was coming off the sedatatives. Again, this is something I hope I never have to go through again with anyone I love. I won't go into the details but I definitely cried at one point as I tried to hold myself together.

By early Tuesday morning Jackson was sleeping soundly on my chest. He was cleared to eat and drink and that made him happy. Our sweet little boy began to immerge and things looked better.

Between Tuesday morning and Wednesday afternoon, we didn't get any more significant answers from the test results. There wasn't evidence to support brain problems that would cause seizures or that he had ingested a chemical. When the doctor discharged us yesterday, he said Jackson was the healthiest kid on the floor. 

We will follow up with the neurology doctor in a couple of months to re-run the EEG. Other than that, we just keep a close eye on him, call 911 if it happens again, and pray that it won't. 

Now that we are home, it's hard to believe that this all just happened to our family. It doesn't make sense in any way. 

One of my favorite verses is Lamentations 3:22-23:

Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great if your faithfulness. 

This was the verse God brought to my mind in many moments. He came through for us in so many ways - the best doctor, a family member working on our floor of the ICU, family that could be with us immediately, and friends that brought food, love and prayer. We never felt alone. 

This morning we are back to running around the house and playing. It's wonderful, despite still feeling pretty tired. Thank you to everyone who called, texted, emailed, prayed and offered to help. You are such beautiful and priceless friends. 

I'm hoping to be back to some normal blogging next week so stay tuned!

Comments

[Jessi]

What a nightmare... and I'm so sorry to hear you still don't have an answer for it. That insecurity alone will probably keep you emotionally exhausted for a while. The good thing we know is you'll continue to take good care of you and him. I enjoy reading your posts but it's more important to me and your readers that you keep your family in good health, resting when you're able. Will pray for balance and peace in these circumstances. Goodness, so hard. Bless you. Jessi, in North Florida

[Fresh Food Perspectives]

Thank you Felicia and Milisa.

[Felicia]

Praying for you! What a very scary time for everyone. It is so hard not knowing. I'm praying for peace and comfort for your family as well as answers.

[Milisa]

Jenna,

this is exactly what happened to Braedon last March. I was about to preform CPR when he came too. The only difference is it occurred only once. 1 month later to the day he had another weird episode where he appeared dizzy and made a similar noise that reminded me of the first episode. It reminded me of someone trying to scream in a dream. Anyway, we had heart testing and EEG which were all normal.

July came along and he had a fever and had what I would say was a classic seizure but neuro doc still didn't worry to much because it was what he called a provoked seizure due to fever. He said this is just one more piece to the puzzle. This obviously still made me so nervous because everything was coming back normal but still no answers. Somewhere between July and November I think he had another one in his sleep because I heard the same noise from previous episodes but I did not get out of bed because he appeared fine in the monitor. Then in February he had what I thought was a nightmare and when I went into the room he was having a seizure. We went back to the Neuro doc and decided at this point not to treat with medication . But 16 days later he had another one in his sleep.

Doc performed MRI and started him on medication. MRI was normal and so far medication has worked. It's one of those things that I will never wish on anyone to have to experience what I saw, on the other hand I have to believe in God and have a normal life. The whole experience made me very anxious and sad and I just had to pull myself together and realize its in Gods hands, he won't die and he will most likely grow out of the seizures. The plan is if he remains seizure free for two years on the medication we will taper off and I believe we will never have this issue again.

I pray for you and your family and Jackson, hopefully this was a one time occurrence. Feel free to call me if you wanna share experiences to bounce off thoughts.

Thoughts and prayers to you!

From a mom to another mom
Milisa B