Irony is never really lost on me. I tend to have more ironic moments in my life than the average Joe. Once I decided to update this blog I wrote this whole article on having a special needs child and deciding to have another child. You know, the risks and emotions that go along with it, etc.., etc... I saved the blog post and told myself I'd post it last week after I could proof read it. I will be honest. I write every single one of these posts with a little bit of wine in my system. Needless to say, going back to edit is crucial. We aren't talking grammar errors, we are talking utmost honesty. :-) Liquid courage can sometimes be damaging! Ha!
Those of you who know me personally know I am WAY more fun with a glass of wine in my system.
Anyway, last Sunday I was prepping for the busy week we were to have ahead of us. Parker had school and therapy, we had several appointments (one being my hair go figure), and I just like to be organized. I am still on maternity leave so I am really trying to get us on a schedule to work when I go back to work. Parker had his nighttime snack of crackers and milk before bed, as he always does. I tucked him and he reached up to give me a goodnight kiss, something new he has been doing with Casey and I. Let me tell you that little bit of affection he gives means the world to us.
At around 5AM Monday morning I was up feeding Paisley and I heard Parker dry heaving. This is not unusual for Parker. I immediately ran to his room and he wasn't in his bed. So, I run downstairs to see if he's in the living room and he is laying on the couch. Also, not unusual behavior since his sister has been born. He is a master at getting up early in the morning and raiding the pantry for Doritos. We have since put a lock on the pantry the stinker!
He continued to dry heave so I rushed him up to the bathroom. I remember thinking, "YES! Mom win! He didn't throw up on the couch!"
Parker had started school the week before so I figured he had probably caught the inevitable bug that was going around his preschool, because there has got to be something going around school always, right? I helped support him over the toilet and the poor guy just couldn't get anything out. Then he looked at me and I could see little sweat beads on his nose and forehead. This child NEVER sweats. It's actually a problem we have with him. Then he started coughing. Not like a deep cough, but a little tickle cough. I figured he had something in his throat or a tickle so I took him down to the kitchen to get a drink of water. When I stepped away from him he couldn't stand. His balance was off. So, I picked him up and away we went.
When I got to the kitchen I put him down and he was like a ping pong ball bouncing back and forth between the walls and cupboards. It was reminiscent of our college years - I will say that! Either Parker had just polished off a bottle of whiskey or there was something seriously wrong with him. I will go with there was something seriously wrong...
Immediately I called Casey. He had to go to work super early that morning so I was alone with both kids. Paisley was swinging away dozing off, quiet for the first time in her life, thank God. I tried calling Casey's cell phone countless times, each time leaving messages that were more and more frantic. Then I tried the office number twice. No one answered.
I was supporting Parker while he was standing and leaving Casey a voicemail.
"You need to call me NOW. Something is horribly wrong with Parker...Oh my God..."
At that moment, before I could finish my message Parker went limp at my side. I laid him on the kitchen floor and his eyes were wide open starring off in space. His tongue was clicking and his left fist was clenched super tight. He started turning a shade of gray...
COMMENCE PANIC.
"911 What is your emergency?"
I screamed, "My son! Oh my God my son! He's having an episode. He has Hydrocephalus. I don't think he's breathing. I can't see his chest moving."
"You don't think he's breathing? Do you know CPR? You are going to have to do CPR," she said.
I got down on the floor next too him looking for any sign, just any sign at all that his little body was breathing and I honestly could not find one. His little body kept tightening up and his color kept getting more and more gray. I put my face close to his and I could feel his body heat, but no air.
Just as I was about to start CPR an officer arrived. He came in and we are talking like minutes after the EMT's came. They walked in the door, two of them, looked at Parker and saw what I saw. After a couple more minutes he closed his eyes and took a breath. Whew. His color changed from gray/blue to white as a ghost. They whisked him away so quickly. Our neighbor saw the ambulance lights and ran over. She is an angel and stayed with Paisley so I could go be with Parker.
"Do you want me to stay with the baby?" she said.
I replied, "Baby? Oh my God I have a baby! Yes! Thank you!"
Throwing diapers on the couch and bottles on the counter I sprinted out of the house so fast. I had never really left my daughter, but boy did I decide to start the "cutting of the cord" process dramatically. For the love...
At this point we still could not get a hold of Casey and wouldn't you know it the phone charger that my phone was plugged into all night was broke and my phone was DEAD. Thank God the officer had my dad's phone number because he is also an officer in the area. My dad said he'd send reinforcements.
The drive over, though only a few blocks, was the worst drive ever. I didn't know if my son was alive. Honest to God I had no idea what happened to him. Did he have a seizure? Stroke? Cardiac arrest? It's the absolute worst feeling as a parent. I sprinted into the emergency room and the EMT greeted me. He told me Parker was still unconscious, but he was stable. The physician was pretty confident what we had witnessed was in fact a seizure and they needed to get Parker to the university hospital, stat. They couldn't fly helicopters that morning because of the weather so they were working on getting an ambulance.
I ran to my son and he laid there so peaceful and calm. Unlike the scene around him that's for sure. He was white as a ghost, still, but in comparison to his earlier shade I was glad to see it. I didn't see the whites of his eyes for over an hour and a half.
Sheer panic set in again because I realized I still hadn't been able to get a hold of Casey. What if they transported him and Casey had no idea what was going on? It was incredibly stressful. So, I called one of his coworkers. Thank goodness she saw the missed call and that prompted Casey to check his phone that was locked up. To say he was devastated is an understatement. I don't even know how long it took him to get to the hospital, but let's just say it's a good thing cops weren't patrolling his route that morning.
The ambulance finally arrived and I was able to ride with sweet Parker to the university hospital. He came to in the ambulance and the look on his face was priceless. He looked over at me like what the ...? Where am I?
That strong, brave boy did not cry ONE time in that ambulance. Not one! His oxygen was a little low when we took off, but after about an hour it got better. Parker appeared to be stable. Thank you Lord! Once we arrived at the hospital the staff immediately started the shunt checks.
X-Rays.
MRI.
Neuro Exam.
He passed all of them. His shunt was fine. That meant no brain surgery. So what the heck?
Parker has quite the extensive neurological medical history going on. You move past one hurdle and you kind of put it in the back of your brain, never revisiting the horrible memory. I suppose this was a crucial mistake because we later found out that his extensive neurological issues were causing the seizures. I didn't even think this was a possibility.
Parker has neonatal seizures at birth. They were stemming from damage on the front lobe of the left side of his brain. The area of the brain that regulates breathing. So at birth, his oxygen and heart rate dropped and that is exactly what happened this time. Turns out, he more than likely wasn't breathing the way he should have been. The Neurologist thought it was because the blood goes to support vital organs during a seizure and his Neurosurgeon is contributing it to the source of the seizure and comparison to his neonatal seizures. Parker has doctors who disagree? NO! <insert sarcasm>
He said to us, "I have a lab and I study the effects of these types of seizures. They can be fatal so you really have to stay on top of the medication and you may have to perform CPR to jump start him."
Talk about a punch to the gut. At the end of the day there is NO way to know for sure what type of seizure it was, but we have to prepare for the worst. Hell, he may never even have another one. Unfortunately both of the doctors did agree that this was more than likely not an isolated incident. This was a new reality for him, for us, for our family.
It just feels so unfair that we are always preparing for the worst. For three and a half years it's always been something. Our hearts and minds hurt right now. We've been here before, different circumstances of course, but still with our son and still with his darn brain. It feels like everything we've done the past couple years weren't good enough. We keep up with all of his appointments, therapies, etc. It felt like none of that mattered because we could not protect him or prevent this.
Parker had follow-up appointments/tests the Friday following his seizure. He had to endure the Neurosurgeon's office and an EEG. EEG's are not fun, for an adult, let alone a busy and CRANKY 3 year old. Did I mention his medication has a side effect of "moodiness". Well, it's legit. He is moody. The poor child cried as I had to pull the glue off of his head last night. I seriously gave him three baths, refilling the tub with clean, warm water, because he enjoys the water so much. Then you know what has to happen again? I have to go at his scalp and forehead again to try to get the glue off. Even though it's silly, you know the removing of glue, it's still hard to watch him go through pain again this week. IV's, blood draws, MRI's, X-Rays...it's just too much.
Parker should be starting school with none of these worries. Casey and I should be sleeping through the night (well as much as one can with a new baby) without worrying about our son not waking up in the morning. Instead we are praying, praying so hard, that this doesn't happen again and if it does, it doesn't take our sweet boy away from us permanently like it's apparently capable of doing.
This bump in the road is actually more like a hill in the road. I know we've been here before. We've had to learn about a new diagnosis and it's adjustments to life. That's exactly what this is. I will get there and wrap my brain around it. Right now I'm worried sick, angry and grieving over yet another diagnosis for our sweet boy. I sit and watch him in the video monitor breathing and moving. I count my blessings because as always the outcome could have been so much worse.
We will adjust and plan. We will update our CPR certifications. We will always remember his seizure medication. We will time his seizures. We will keep his appointments. We will accommodate.
We will do all of this because that's what we do in this house. Life has never been any different for us. NOTHING in this world is more important than that little boy. He has been and will always be the light of our life. He continues to show us undeniable strength at such a tiny, tender age. Parker has endured more hardships in his short life than five adults combined. This serves as a reminder to not cry over spilt milk or crushed up Doritos on the floor after I just vacuumed it. <insert eye roll>
He is a special boy with extraordinary circumstances, who happens to be obsessed with Doritos. Needless to say Parker is going to get as many Doritos as his little body can handle ALL WEEKEND!
In the mean time, I will be counting the additional gray hairs that have magically appeared on my head this week, all while enjoying a nice glass of Chardonnay.
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