I write this to educate, and encourage you. I also write this to spill, and spill big.
Its Friday 4 something a.m., my husband gets up for work takes a shower. And I'm in that zone where you aren't awake or asleep, you just are…. you know, you're a groggy head.
Then a blood curdling scream from my sweet baby boy, I wake all the way up with a JOLT, turn over and pick him up. (yes he sleeps with us, judge if you want)
Then I realize he's seizing, I put him back down on the bed. (which is what you are supposed to do, hard flat surface, head tilted to one side) He's seizing just like you would picture, foaming at the mouth, head jerking back and forth. Tears streaming down my face, praying and screaming for my husband, who can't hear me over the shower.
Approximately two agonizing minutes go by of me sobbing, of him seizing. He stops for a few seconds, max 45 seconds. I grab him and murmur to him, Mommy is so sorry, she's so sorry. He screams in what I'm praying is NOT agony again, and this time its a different kind of roller coaster. he goes seemingly to sleep. During this seizure (yes this is also a seizure ) my husband comes in, I'm crying and yelling for tylenol. Im telling my husband that yes, they told us the last time he had to come back if it happens again. My husband gets the tylenol, little boy takes the tylenol ( he's little so liquid syringe) but does not respond to our repeated attempts to wake him. I get dressed, I yell at my husband to get dressed. I'm pretty demanding not in psycho mommy mode... so then there's me like this. It's go time.
He wakes up? I'm not sure if there was a reprieve here or not. In any case little man definitely changes states, He is screaming and crying like a banshee. I throw his usual breakfast in my bag, a banana and milk, we're off. Little guy is screaming and jerking the whole way there.
We get in say what happened.
the nurse seems a little out of her element with a little guy. The pediatrician comes in, he thinks he's still seizing because of all the jerking going on.
They need to weigh him so they can get the right dose. We have to change him to get an accurate weight.
The first sign of my buddy is when I put him down on the little weighing table and through the screaming reaches for me.
We hold him down for the first of many times for them to insert his IV. They give him a sedative to stop the lingering seizure type behavior. My sweet boy calms down for a little while.
We don't know it yet, but we are in for a long day. The pediatrician on the night shift warns us, that they are transferring us because this ER/hospital doesn't have a Ped's unit, and that they will likely keep us overnight and as long as a few days.
Then the waiting starts. Have I mentioned that I have been focusing on patience the last week in my fruit of the spirit study? I could have done better.
We are waiting to hear back from our usual pediatrician, which hospital does he want us to transfer to?
We are still waiting on that…. We can't tempt Drake with any of the toys in my bag until the nurses switch, and his new pretty young nurse comes in. He picks up his little plush football and throws it. My little guy is a show off and a flirt. At least we know his little personality is in there.
The new pediatrician day shift comes on and seems extremely eager to talk about giving him a spinal tap.
Honestly after sobbing all the way to the hospital. (max 5 minutes, but an eternity in mommy land,when your baby won't stop screaming )
I start to freak again. They gave him a sedative and his motor function is inhibited, but that's all I chalked it up to. ( thankfully thats all it was) I ask God that it won't be done unless necessary, and ask for prayers of the same.
A FREAKING SPINAL TAP! Are you serious lady?
(We try to just drive him, but apparently now that he has an IV in, we can't?)
I send my husband home for some clothes for D, and we wait. FOR A LONG TIME. patience.
I want to say that our community rallied in full force, I sent a few texts from the ER and had people just knocking it outta the park with prayers. SERIOUS. and support. IN DROVES.
My poor son hated the ambulance, so close to mommy, but so far. He screamed until he fell asleep, for the last 5 minutes of our ride. Until we got to the Peds ER, where I had to answer questions again. Where they poked and prodded and took more blood. He almost pulled out his IV.
Daddy Romero had shown up by then (he detoured for a while because he was going to beat us by ALOT)
Right after that, the care and counseling pastor from our church shows up. Unfortunately he catches my kid as stark raving mad as he's ever been. I have a giggly giddy content child on the usual. They casted his dominant arm with gauze, so he wouldn't yank the IV out.
He went back and forth between extremely angry, and pitifully showing you his arm, hoping you would take off all the gauze.
Did I mention we had serious support? One of my sister in laws is off on Fridays, stopped by, hung out for a bit, got me coffee.
More waiting.
They ask what words he says, if he is still saying them. I don't even register that they are monitoring for brain damage. I forget for how long he seized and that he could have stroked. PRAYERS OUTTA THE PARK. God protected my heart and mind.
They move us up to the PEDS floor. I ask about seeing the pediatric neurologist -the one the pediatrician at the last hospital was begging, so she could do a spinal tap. "O, they just put in the order, they may come by in an hour maybe 4 hours," the nurse told me offhandedly.
Honestly I was peeved.
God works all things together for those who love him. They wouldn't need to do a spinal tap, we waited so long they got his blood work back. His white blood cell count wasn't high enough that it was bacterial, so no testing for bacterial meningitis. Praise Jesus!
By now I was living in Psalm 23. We have this little prayer book we read D every night, the last page is Psalm 23. The Lord had written it on my heart.
He makes me lie down in green pastures
He leads me besides quiet waters
He restores my soul <prayer book version>
I will fear no evil
for you are with me
goodness and love will be with me my whole life
and I will live in the house of Lord forever
Long story short, after putting us on precautions for strep, (nope) and D having a 103.8 temp after being medicated and monitored constantly. After him pulling out his IV after his last blood panel and bleeding a bit. (scary)
After seeing another pediatrician (we saw 4) and a pediatric neurologist. There is a 50% chance it could happen again before he is 2. They sent us home with a prescription in case of a seizure lasting more than 3 minutes. ( on that day his total seizures were between 5-15 minutes)
We were overwhelmed with love. SO many offers of food, prayers, helpful advice. Another one the elders where we go to church stopped by, and prayed over us.
There were beautiful moments, like D throwing that football, reaching for me on the scale… At one point I looked at my husband and said thanks for being here, and he responded," where else would I be?" ( that sums up my husband and how great he is) We pushed the hospital bed and the couch together so D was in between us just like at home. ( I know, I know)
My husband getting a little emotional in gratitude each time an elder from the church showed up. ( twice )
God has blessed us, So if you prayed, texted, called, offered something, came by THANK YOU! IT DID NOT GO UNNOTICED. GOD WAS AT WORK.
We had peace, and felt lifted up.
Here are some facts about febrile seizures:
Febrile seizures are convulsions brought on by a fever in infants or small children. During a febrile seizure, a child often loses consciousness and shakes, moving limbs on both sides of the body. Less commonly, the child becomes rigid or has twitches in only a portion of the body, such as an arm or a leg, or on the right or the left side only. Most febrile seizures last a minute or two, although some can be as brief as a few seconds while others last for more than 15 minutes.
Approximately one in every 25 children will have at least one febrile seizure, and more than one-third of these children will have additional febrile seizures before they outgrow the tendency to have them. Febrile seizures usually occur in children between the ages of 6 months and 5 years and are particularly common in toddlers. Children rarely develop their first febrile seizure before the age of 6 months or after 3 years of age.
The type of febrile seizure also matters; children who have prolonged febrile seizures (particularly lasting more than an hour) or seizures that affect only part of the body, or that recur within 24 hours, are at a somewhat higher risk. Among children who don't have any of these risk factors, only one in 100 develops epilepsy after a febrile seizure.
WHAT TO DO IF YOUR CHILD HAS A FEBRILE SEIZURE
Seizures are frightening, but it is important that parents and caregivers stay calm and carefully observe the child. To prevent accidental injury, the child should be placed on a protected surface such as the floor or ground. The child should not be held or restrained during a convulsion. To prevent choking, the child should be placed on his or her side or stomach. When possible, gently remove any objects from the child's mouth. Never place anything in the child's mouth during a convulsion. Objects placed in the mouth can be broken and obstruct the child's airway. Look at your watch when the seizure starts. If the seizure lasts 10 minutes, the child should be taken immediately to the nearest medical facility. Once the seizure has ended, the child should be taken to his or her doctor to check for the source of the fever. This is especially urgent if the child shows symptoms of stiff neck, extreme lethargy, or abundant vomiting.
O ya wedding
We went home on Saturday, had dinner and went to a wedding. D was fever and contagion free and we were ready to celebrate and up lift a wonderful couple as they were joined together by God.
Here are some pics
I hope you get the feeling I think my guys are handsome, my God is worthy, and that He created us for community.
And that I love all of those things, but not in that order.
God made my little guy from scratch
and He knows the plans he has for him,
plans to give him a hope and future.
Ven
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