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Posts Tagged ‘seizures’

Good news and better news here finally!!

Good news:

Luke was just drunk from the 4mL of tripeltal we gave him last night. He got 3mL which is is regular dose. After his seizure, the neuro on call had us give 1 more mL for security. We gave him another 4mL this morning at med time. Apparently, his stumbling, staggering, buckling was my boy being drunk..

Dr. Sharp wants us to increase tripeltal to only 3.5mL right now to ensure seizure control.

BETTER NEWS!!:

Dr. Sharp doesnt think this massive sleep fest was a result of the seizure. Hmm. Interesting, Go on… Right?! He thinks its the larger dose of klonapin. HOLY COW! He thinks that .75mg will be the magic number for Lukes sleep.

To this I want to say..

IN YO’ FACE.. all you doctors who discounted me when I knew there was a REAL sleep problem and sought out your help. You told me to put him in his crib to “CRY IT OUT” and told me it was all a “behavioral issue” to deal with at home. How dare you assume every child is the same and needs “tough love” or whatever it is you want to call what you told us was the only thing that would solve his *behavior*. How dare you look at me and how young I am/was and tell me how I need to parent which was not based on a thing you heard me say had already been done or had been tried. Shame on you.

I want this to be encouragement to ALL moms and dads out there. If you think there is an issue, a problem, a curiosity, anything.. find SOMEONE who will listen. Research the problem. Learn about what the options are. Know what you are talking about. Find someone who WILL LISTEN to yo!!. That is NOT doctor shopping. Persist until you get what you need for your child. I never was mean or hateful though and I learned that sometimes being extra nice is more powerful than being mean and hateful.

*doing my happy dance*

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Not a catchy title but bear with me. The life has been sucked out of me again.

Lets see.. In just a few days from now it would have been the 6 month mark that Luke would have been seizure free. In the past 6 months Luke started developing so much. The biggest achievement was him talking on New Years Day. What a glorious treat for us. Until then he had 15 words at 23 mos old. January 1 hit, and while at my inlaws he said ‘angel’ and several other random words out of the blue. I was floored. We all were. It was like God finally gave us that sign that he really was going to be ok. He was making this big effort to start talking. Making new sounds with his mouth and it was great! It was all babble but he was TRYING and that was something new. It seemed before he almost didnt know -how- to try.

We’ve had some really bad days at therapy and just a few really good ones. We started trying therapy in home (and at the clinic) after the Developmental Evaluation showed that he basically hadnt developed at all in one year. We all knew he had but he wasnt performing. He had to start participating and showing them what he could do. And also, he just wasnt separating well still. After 13 mos at KidSource he was still crying at transitions and its difficult to learn when you cry the whole time.

We also started fish oil in an attempt to seek better sleep. We knew there were huge benefits in the oral motor dysfunction area too so we were anxious to try it. LITERALLY – within a week Luke wasnt just babbeling.. he was SAYING all kinds of new words, parroting us, making up his OWN PHRASES, saying words we didnt even know who knew!!!!! He’s really quite funny. Hes witty. Smart. He loves to share whatever he has with you.. he loves everyone.. he really does. Ahh..

Anyways.

At the beginning of March he had an overnight sleep study complete with EEG and all kinds of electrodes attached head to toe. Literally. He didnt let us down. He woke up 19 times during the night and I was there to console him each time. Sadly, we came out of the mess with petichial hemorrhages around his face where he had screamed so hard he broke blood vessels. That was a tough night. Waiting for the results was tough too. After a couple of weeks we got a letter with results to which we googled every last number and word. Luke had mild central apnea which is the brain tell you to not breathe vs obstructive apnea which is plain not having a clear pathway to breathe. Also, he had shown signs of having parasomnia events throughout the night. The EEG showed good brain waves that reflected no seizure activity while sleeping.

After the initial sleep clinic meeting we moved Lukes bed into our room in an attempt to get him to sleep in his bed. Pretty much I became so exhausted I stopped being able to get up at each waking and keep him in his bed. It became that I could keep him in his bed the first half of the night then my body would shut down and I would find him on top of me in the wee hours of the morning nursing. Whatever. As long as he slept and I slept we made it work. Although, it wasn’t ideal. Its been all out survival mode since the beginning so what’s new, right?

Sadly, his first night he climbed out of bed and fell on my bed rail and cut his eye brow open. He has this nice scar that doesnt grow eye brow hair now. Check out his 2 year photos. Ill post some soon. He will defiantly have a scar for life there.

Fast forward > We are now on Klonopen which is an anti-epileptic drug (AED) that can help with sleep issues. We started on a low dose and began melatonin. Upping levels repeatedly over a months time has proved zero affect on his sleep. He wakes up in a confused state constantly, 6-15 times a night. Those are his parasomnia events.. sleep walking in a way. Sometimes he gets out of bed and walks around looking for us, asleep. Other times he just sits up and waits for us to lie him down again, but asleep. When he wakes up fully though, he was up for 2 – 6 hours in the middle of the night. Imagine how that begins to affect his day time mood, development, ability to learn, cope, play, grow. Hes stifled by his lack of sleep.

Dr. May Greible, the sleep neurologist who we’ve been working with and emailing back and forth set a new plan up for us on April 5, Monday. That was yesterday..

The long and short of it: The plan was to sleep deprive him to get his circadian rhythm back on track. Theres more reasoning and details behind the scenes.

  • Wake up at 6am no matter if he only got 15 minutes of sleep.
  • No nap until 1pm. Wake up at 2:30pm.
  • 3mg regular melatonin to tell body to begin getting tired at 6pm.
  • 7pm shut down all electronic devices
  • 8 PM – Bath, dim lights
  • 8:30 – 8:45 PM – Melatonex and Klonopin (.75 mg), 100 mg B6 (try)
  • 8:45 – 9 PM – Book, prayer, song
  • 9 PM – Asleep

If he wakes, put him back in his bed!  He stays in bed until 6 AM, no matter what.

So, we tried it. He was slobbering tired. Nick had gone to a town hall meeting and literally moments after he walked in and scooped Luke up he began seizing. It’s such an ugly thing to see. It lasted 2 1/2 minutes and we thought it ended. Then as I picked him up he started seizing again so we timed it as one seizure lasting  at almost 4 minutes. I had the emergency meds, Diastat, ready to be administered but he started slowing right then. He came to briefly and he understood that Dada was home and he seemed to want to see him. After he was less confused he began screaming this low, painful, guttural scream. I cant imagine how his head mustve wanted to explode with the pain and his muscles ached from the repetitive tightening and relaxing for almost 4 minutes. We somehow managed to get the rest of his meds in him that were due based on the sleep plan and got ibuprofen in him also.. He quickly fell back asleep at 9pm.

He didnt wake up until 5am. You can guarantee I was watching him half the night. I pretty much lost myself in facebook and talking with friends to keep me distracted so I didnt let my mind wander too much. He was awake from 5-7am and then said “I ti-add” and wanted us to lay him in his bed. He was out like a light again. Nick stayed home and let me sleep while he watched Luke. Nick woke me up after a while and went into work. I sat in bed and watched Luke til 10am when I woke up and wanted to get in bed with me. He stayed asleep until 1115am.

He seemed alert and talkative in his normal manner. Nothing out of the ordinary other than he wanted to lie in bed instead of following me to the bathroom, two times.. I just thought he was tired.

Finally when we got out of bed I carried him because I felt sorry for him. When I finally sat him down in front of his closet to play with shoes while I got him clothes he fell over. I thought he was just tired but then immediately realized maybe I needed to make sure. I went across the room and got his Mickey book. He took one step and fell over again. I went across the room.. again. He fell and couldnt catch himself. He was walking around falling, flailing, staggering and tumbling everywhere.

It was scary.. like something was wrong kind of scary. I called Nick and he wanted to get video. Nick packed up and came home then and by the time he got home Luke was doing better but his knees were buckling under him. It wasnt AS BAD as earlier.

Tracy, our nurse contact in the ACH neuro dept, said she thought that the dose of Klonopen was too high and was basically making him drunk. She said she would talk to Dr. Sharp (neuro) and get back with us. If the Klonpen was too much for him, that means we will more than likely have to wean off that and try a new drug for sleep issues. If its not too high a dose, there could be nerve damage OR it was just the after affects of the seizure.

As I type Tracy is speaking with Dr. Sharp so there will be an update very soon…

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I have decided to dedicate this month to helping raise awareness about Epilepsy to my friends and family and anyone else I can reach this month. Epilepsy is more prevalent than people realize.

– 300,000 people have a first convulsion each year.

– 120,000 of them are under the age of 18.

– Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

Also,

– Epilepsy and seizures affect almost 3 million Americans of all ages, at an estimated annual cost of $15.5 billion in direct and indirect costs.

– Approximately 200,000 new cases of seizures and epilepsy occur each year.

– Ten percent of the American population will experience a seizure in their lifetime.

– Three percent will develop epilepsy by age 75.

http://www.epilepsyfoundation.org/about/statistics.cfm

Luke’s seizure disorder has given our family a purpose.. we desperately, along with many many other families just like ours, want to see a cure for epilepsy someday. The more we can raise awareness the more funding can be aimed at researching the cure.

Epilepsy awareness month ribbon

Let’s fight this so “that not another moment is lost to seizures”

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That’s how long Luke went with out any seizure activity.

After our vacation in July Dr. Sharp recommends we start the systematic process of weaning Luke off Phenobarbital, much to our dismay. I had taken Luke in earlier in June and he gave us written instructions on how to do the wean and at what week we drop to a certain level and how long to keep that level there. We had many reasons to not do the wean and the doctor said if we wanted to badly enough he could just switch him to Keppra and wean the Phenobarb but he didn’t want to try that just yet. He thought Luke was good to go since it had been a year without any seizures. The doctor also was going to allow me to do the 4 month wean instead of the 2 month process.

But, right before we began, I decided on my own that I would do the 2 month wean. I realized I would rather it be ME that deals with the seizure IF he was going to have one during the wean. It was the end of my summer and if he was going to have it happen I would rather just get it over with before he starts being out of my care more at night. It was a tough decision to make but both my mom & Nick were very relived to hear my reasoning behind it.

We were scared to start the wean but we knew it was for his best interest. We knew the Anti-epileptic drug (AED) he was on now made him high as a kite, and developmentally, it was slowing him down. Dr. Sharp wanted him off the meds regardless. If he needed an AED it would be Keppra. But with a new med comes the uncertainty of it working for Luke and how it reacted with his body. Phenobarb worked so well for him. He only had breakthrough seizures in July of the previous year so that seemed to be *his* drug. But man, it really had it’s side effects.

The upside to weaning was that Luke would possibly begin to develop more without the barbiturate in his system. Dr. Sharp couldn’t guarantee he would take off like a rocket but that, hopefully, slowly he would begin to gain progress. We’ve been waiting so long for certain developments so we were ready to see improvement in that area. But one thing I was certainly looking forward to was seeing who my Luke was off mind-altering drugs. Luke began Phenobarb at 6.5 wks. At the time we began the wean he had been on it for 92% of his life by then. I just felt like I didnt really know Luke. I wish so badly sometimes I did get to see what Luke was like and I wonder if he would generally be the same or if he would be very much different?

When I’ve mentioned this before people try to convince me that Luke is Luke no matter what. Heh, true, but just seeing his personality change from one drug to the next has been drastic (in our opinion) so what would he be like without EVER having been on these drugs? Around family he’s typically more outgoing than any other time so I kind of feel like those family members don’t see that Luke is so delayed in some things. They’ve got those sweet rose colored glasses on. This isn’t bad though (since we love y’all so much).

Overall, people that meet Luke in the grocery store just assume he’s pretty shy because he looks so normal. If you didn’t know he couldn’t talk and saw him play a little you might think he was totally normal and was just taking in his surroundings. It’s easy to be with Luke and see him play and fall into a comfy little bubble involving his much needed routines, his excellent non-verbal communication (without signing), and his mediocre skills and that’s you’re normal. Then, you get around his age peers and it blows you away. Every time.

We’re so happy to watch Luke’s friends advance and display all these cute, impressive new skills. It’s such a joy to see the new things they like to do. I have to admit, when Luke does something age-appropriate it’s all I can do to not jump and scream for everyone to look at him just so they can witness him doing something appropriate.

It may sound like I’m stuck on milestones or development … maybe I am? At any rate… check back soon for Part 2.

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I mentioned in my very first post that I had kept a private journal for a while about Luke. In that journal I documented the events that occurred when Luke had his first set of seizures and his hospital stay at Sacred Heart Hospital in Pensacola, Fl. I wrote this only to help myself remember what happened. Sometimes, I look back at these hospital photos of my tiny 6 wk old baby and wish that it had never happened this way. I know that Nick refuses to ever look at these photos. At one point, he didn’t want me taking any photos. He didn’t even want to return to Florida to visit… he didn’t want to relive the drive home. I tottally understand. 

Today is the one year anniversary of Luke’s whole world changing. It chokes me up to think about that time in Florida. I don’t think anyone in the world understands sometimes, but I know that Nick does… and my parents do too. They were right there with us every step of the way. I really believe God placed us in Florida for a reason. I believe that if we had been in Little Rock when everything happened, so many family members and friends would have wanted to be at the hospital, and rightly so of course. But, we were rookie parents and completely scared. It was a good thing that we were able to concentrate on Luke without the world knocking at the door to peek in at him. We did have a couple friends and family stop by for short visits which really did lift us up. I know Nicks parents were probably going nuts here at home with worry. I can’t imagine not being able to be there, it must’ve been torture. 😦

 Here is my account of the fateful trip to Florida:

I can’t even being to explain how scary our weekend was. Our little man gave us quite a horrific scare in Florida.

We packed up our stuff and went to spend Wednesday night with my parents in Jax so we could get up early and head out to FL to see my brothers wedding and promotion to Major (USAF) over the long weekend. Wednesday he got his first round of shots a little early. He was 6 wks old. He ran a low grade fever that night and we treated it with baby tylenol and he seemed much better. He never acted fussy or like he was in any pain. He was just the same old little man hes always been.

Thursday we headed to Fl on the 9 hr car ride. My parents drove and we sat in the back seat with little man between us. Half way through the trip I started having terrible unforgiving back pain. For some reason sitting the the back seat made my scoliosis flare up and the screws in my back started bothering me. Pretty much the whole car ride from then on was severely painful for me. I cried for the last 2-3 hrs of it out of sheer pain. The 9 hr car ride turned into an 11.5 hrs trip. 

We finally pulled up to my brothers house near Hurlburt Field and I jumped in the shower to run the hot water over my poor back. DH & my mom were downstairs trying to give Luke a bottle but he wouldnt take it. He took his very first bottle of EBM Wednesday night from DH so I thought it would be an easy transition. Nope. He wanted his mommy. We fed him and stayed to visit for a while but had my brother take us onto Hurlburt quickly so we could get into our hotel room on base and rest.

Friday we hung around our little room together. We eventually all got dressed and met up with my brother, nieces, and sister-in-law to be at Wendys for lunch. After that we all caravanned to Eglin AFB to watch my brother get promoted to Major. It was a big deal and there was a lot of pomp and ceremony to the whole thing. Afterwards we all went to the little reception and ate sub sandwhiches and cake. Then we went to his house and partied again. We all pigged out on BBQ and made a bon fire. Everyone passed around little man and he was held all night! Everyone said he was such a good baby and he never cried and was happy the whole time when he wasnt sleeping.

We got back to the hotel around midnight and we all crashed. Saturday we hung around the hotel again until the afternoon when we went to my brothers house. The guys (dad, dh, brother, and sister-in-laws dad) all went off to the Armament museum and the some of the girls (me, mom, 2 nieces) and Luke went to Baskin & Robbins for ice cream. I found 2 big blonde hairs in my ice cream there. Gross! Then we went to Target and toted the baby around there for quite a while. After Target we stopped at a little beachy area and wrote Lukes name in the sand and got his little foot prints in the sand. We took photos of that and his toes dipped in the water. Now he can say he saw the beach and he was in the gulf!

After that we were all worn out and went back to the house. I fed Luke and the guys showed up from the museum. After I fed Luke I gave him to DH to let him burp him and so he could see him. DH said he missed him while we were gone.

Luke was laying in DH’s lap and his legs started suddenly drawing upwards towards his belly in a rhythmic fashion. DH looked at me with a confused and scared look so I jumped up immediately and ran over. Luke was kind of in a trance staring off into space to the left. His legs kept drawing in very forcefully to his stomach and we kept trying to get his attention. It was such a tense moment. Someone yelled out for me to pick him up so I grabbed him and held him close to me thinking that if it was Luke making himself do the movements it would stop. I grabbed his foot and held it and it kept pulsing. I started crying and someone kept telling me to be calm for Luke. The whole episode lasted maybe 30-45 seconds.

After it was over I held onto him and walked him up and down the hallway for a few minutes and then had DH hold him while I called my former boss, a neonatologist at the Childrens Hospital back home. She talked to me for quite a long time about what happened and whats it couldve been but in the end she said it sounded like a classic seizure. She told me what to look for so the next time it happened we could get some key info to help the Drs. I was so scared and she picked up on that and tried to reassure me it was all ok.

We packed up Lukes stuff and headed back to the hotel. We were all so scared. DH and I were in the backseat staring at our poor little man the whole ride to the base. Our passes were going to expire the next day, brothers wedding day, so he wanted to get them renewed then. Mom, dh, & I sat in the car while my dad & brother went into the guard shack. I couldnt take my eyes off him. He suddenly started twitching again. It started with his feet and then moved to his legs. I screamed ‘NICK” and we started ripping the baby out of the car seat. I remember my mom jumped out of the car and ran towards the guard shack. Apparently my dad saw her and knew something was going on with Luke. At the same time I ran around the side of the suburban and dh handed me the baby. In my absolutely scared out of my mind state I started into a full sprint towards the guard shack. I held onto him really tightly and I was crying so hard. I heard dh scream at me to not run but I did anyways. I burst into the guard shack and he was still seizing. I remember looking at my brother and he was just standing there. Someone said help was on the way. I was shaking really hard and Luke was still seizing. It had to have been close to a minute. Some poor people walked into the guard shack and I sat there crying holding my baby. We stripped his clothes off of him thinking if it was a febrile seizure maybe cooling him off would help. Finally the base fire truck showed up and they had me come out side. He had finally stopped seizing.

They couldnt do anything to help. They couldnt even take a temp on a 6.5 wk old baby. They had me hold the air mask on him and they kept reassuring me it was ok. It did help to be reassured. Police showed up from the base. Again, they couldnt do anything either. Finally, an ambulance from Fort Walton Beach showed up. Thank God it was women because they were very sympathetic to my situation. They made me feel much much better about it all. I rode in the back of the ambulance holding my little man. DH rode in the front. White we were being transported Luke went into a post-dictal state where he was unresponsive. The EMT said it was normal after a seizure. The EMT was doing all her tests and poking at him and he ‘slept’ through it all.

When we got to Fort Walton Beach (FWB) ER they got us into a room immediately. They took some stats first and then we probably waited an hour before a doctor came in. It was such a stressful wait during that time. My parents mustve followed the ambulance I guess because they were there and my brother was there. They came back and talked to us. Luke hadnt had another seizure since the one in his car seat. That was probably almost an hour by this point. From his first seizure to the second one it was about an hour. I was worried he was about to have one at any moment again.

To make a really long terrible stressful story slightly shorter, they drew blood to do a CBC panel on him. DH had been talking with my former boss about the situation. She made it clear that we needed to rule out meningitis by spinal tap. What a terrible thing to have to volunteer your child for. The ER Dr agreed to do it. After some time they came in with a kit and all kinds of needles. They completely undressed Luke and swabbed him down with the betadine and marked all over his little back with a magic marker. My parents left the room and dh & I were the only ones left in there with the nurse and Dr. The nurse then folded Luke in half bringing his feet up to his head. He immediately started screaming and turning red. I began to cry. The Dr injected him with a numbing agent and then went on to draw the spinal fluid. Audra, my former boss, said that a *clean sample* is what we needed to look for. The Dr draw it and it appeared to be clean. We didnt see blood in the sample and the ER Dr said it looked like tap water which, just by looking, is a good thing. They took 4 vials of the spinal fluid which seemed like it took forever to do. Little man cried and cried so hard. He actually got so upset he shot green poo across the bed and out into the hallway. Then he peed everywhere. It was so apparent he was just totally upset and there wasnt anything I could do to help him. I just wanted to scoop him up so badly and make it all better for him. I never want him to be upset.. ever.

After the spinal they let me hold him in the bed again. I was a wreck and so was dh. He kept telling me that Audra said after the initial puncture it didnt hurt him anymore. It didnt make me feel any better really. My parents came back in the room and my mom was obviously upset too. She apparently broke down at the sound of the tiny grandbaby upset and in pain.

We waited and waited for the test results. I fed Luke at some point too. Things had calmed down and we seemed to relax a little bit. It was getting very late. His first seizure was around 6:30-7pm so by the time they did the spinal tap it mustve been around 9pm or later.

The results came back. The blood work was clear and so was the spinal. Everything was fine. The Er Dr *did not* believe Luke had 2 seizures. He suggested it was colic. COLIC? No. We knew what it was but there was no convincing him. It was terrible to not be believed by the Dr. He asked if we were first time parents. Obviously, he assumed we were over reacting about nothing. I felt so betrayed in a way. He set us on our way.

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We got into the hotel room after midnight or around then. Im not really sure .. it was all such a blur. Mom and dad folded out their hide-away bed and dh & I climbed into our bed in the little bed room. DH & I agreed to let Luke sleep on me that night. We had been transitioning him out of our bed and into the pack n’ play on the trip so we could start using the bassinet when we got home. We slept around 2 hours and I woke up to Luke having a seizure on me. I woke dh up & laid Luke back on my legs and we watched him have a mild seizure. We got scared of course. I woke my parents up and we decided to take him back to the hospital.

We show up again at FWB ER. The same nurse checked us out and a new Dr saw us since there was a shift change. He just looked in his ears, eyes, mouth, and felt his tummy. He said the seizures were probably febrile seizures and nothing to worry about and we could go home safely. We thought “WHAT? Again?! We are being sent on our way again? ” It became even more apparent no one believe us… no one thought Luke was having seizures.

We went home at 3:30 or 4am and no one slept except dh. Mom and dad stayed up with me to watch Luke. DH slept so he could be rested to drive us home after my brothers wedding. We thought we should get home as quickly as possible to get him to Childrens Hospital in LR. Around 5:30am dad called brother. Earlier in the night dad called him to say he wasnt going to ride up early with him to help get the reception ready. This phone call dad was wanting brother to pick him up because my mom was staying back to help dh & I. DAd and mom were going to shoot their wedding so dad needed plenty of time to prepare at the wedding site.

At 5:30am Luke had another seizure while I was holding him. It scared me really badly and I laid him on the bed to see more of what he was doing. Dad scooped him up and held him cradle style and gently stroked his face and talked to him. Dad reassured Luke it was all going to be ok. We noticed Luke seemed to be alert during the seizure and actually smiled when dad touch his face. Just his legs and stomach were being affected. It lasted maybe 20 – 30 seconds. We didnt bother to wake DH up to tell him about this one. Brother showed up at 6:30am to pick dad up to head to the wedding site. Dad hadn’t slept at all that night and he was about to go on for a full day. Mom and I were so worried about him. Mom and I laid in the fold out bed and watched Luke and whatever lame TV show was on at the time. We were both almost delirious with exhaustion. We fell asleep with Luke between us in the bed, but I was holding on to him. I woke up to Luke seizing again. I tried to do what dad had done earlier. I picked up Luke and held him carefully and reassured him it was all ok. It was another mild seizure that lasted 30 seconds. We tried to remain very calm for Luke. We took his temperature and it was ever so slightly elevated so mom suggested we give Luke a half dose of tylenol since it might be a febrile (fever) seizure earlier. He got the half dose and seemed to be ok. He got 2 half doses through the day. We laid in bed all day & dh slept off and on. Luke started to stri around 3pm Sunday. He was ready to eat and it was also time for him to get another dose of tylenol. I decided to feed him and then give him some tylenol. Luke ate and then fell asleep while eating. I let him stay latched onto me for a few minutes and then suddenly he woke up to a violent seizure. He spilled milk out of his mouth and then began vomiting quite a bit. I held him in my lap and talked to him gentle trying to reassure him. He fell into a trance quickly and it scared me. DH grabbed the camera and began to record the seizure. Audra told us to catch one of video so the ER Dr would believe us. What a terrible thing to have to record. While DH recorded the seizure Luke began to get worse. His whole body started shaking violently with his arms and legs jerking up and down. He started making a terrible ‘billy goat’ noise like when make a long ‘a’ sound and some one pats you on the back. It sounded like vibrations. It got worse and worse and we started panicking. We recorded 1 minute of the seizure and then started throwing clothes on to head back to the hospital.

We jumped in the car and decided to skip going to FWB ER again since they did absolutely nothing to help us out there and didnt even believe us. We went straight to Sacred Heart Childrens Hospital an hour away in Pensacola. DH called a friend to have him help us locate the hospital. The drive down HWY 98 was tense as we weaved in and out of traffic praying to not get pulled over on a Sunday afternoon. Luke didnt seize in the car but we were so absolutely scared of what had just happened. It was the worst seizure yet. They were obviously getting worse and that was a bad sign.

Dad had been calling to check on Luke during the day but when we tried to call he didnt answer. Neither did my brother or nieces or my dad’s ex-wife. Everyone was at the reception and had their phones turned off. We were so scared. We eventually turned to calling the police department trying to get them to go to the reception site to tell my dad to go to the hospital. It didnt work out. It seemed that plan wasnt what God had in mind. We needed to get a hold of my dad because he was an hour north of the hotel so it would take him that long to get there.. but.. we were traveling an hour west to the hospital. So it would be a 2 hour drive for him.

Apparently dad tried to call me, dh and mom and got no answer. It was probably because we were all trying to get a hold of someone to tell him what was going on. He then began to get worried and started packing up his photography equipment. Everyone at the wedding had heard what was going on and started to worry when they saw him packing up and leaving.

Dad finally got a hold of dh, or mom.. maybe it was me. Im not sure. Either way he found out what was going on. He needed to get to Pensacola ASAP so he borrowed my youngest nieces car and followed one of the wedding guests back to Hurlburt. DH had the key to our hotel room so dad had no way of getting into the room. My brother arranged for someone to unlock the room for us so my dad could get some things in a bag for us and get our phone chargers. All the phone calls we had been making were running our phones down.

We finally got to the Sacred Heart Childrens Hospital (SHCH) around 4pm. We found our way to the ER and walked in. There had to have been 150 people vomiting, coughing, and bleeding every where all over the waiting room. It was a massive ER. We signed in and they had us sit to wait to get registered. We sat there with my mom for maybe 10 minutes with all the nasty sick people. It was scary to think he was getting exposed to all the illness in there. They finally called us up to get registered. While talking with the ER staff Luke started seizing. It was almost as bad as that last one. I started getting hysterical immediately. I felt weak and started shaking and sobbing. DH was getting visibly upset and my mom took Luke from me to hold him. I was so glad she did because I wasnt sure I could safely hold Luke. She picked up on that that God. We made a scene at the hospital Im sure. I couldnt have cared less. The nurses just literally.. sat there. Didnt say a DAMN thing to us while it was going on. We kept looking at them in panic and no one didnt anything. DH finally said ‘Why wont someone DO SOMETHING?” The security guard stepped forward as if he was going to have to do something or drag dh out. A male nurse finally said ‘She’s timing it.’ (a female nurse) I didnt care about timing it.. I thought someone should have been taking my 6.5 wk old baby back in the ER right then. His seizure went on for over a minute. Our guess is that it lasted 1.5 minutes. Probably the longest one or the 2nd longest. It was scary. A nurse showed up to take us directly back to the Pediatric ER. We got to bypass all the flu victims in the waiting room.

It took my 6 week old baby having a violent seizure in front of someone at a hospital before they believed us and helped us. Its such a tragedy that it had to happen that way. Him having the seizure was terrible but it was a good thing too. If that hadnt happened we wouldve had to wait hours in the ER with sick contagious people before we saw anyone.

The nurse led Luke and I back to the Pediatric ER. I was crying pretty hard still and I remember thinking it was pretty weird that as we walked down the hallways the nurses would watch me and Luke. I mean, dont they see people crying in there all the time? I didnt get what was so weird about it that made them want to watch.

We got into a room and they had me undress him and put a little baby hospital gown on him. I had never seen anything in my life that was so tiny and not sweet. It was tiny and sad. The little hospital gown just made the whole situation seem worse somehow. Luke still had on the little stickers on his tummy from the night before when the EMT monitored his heart. They used those and hooked him back up to a monitor. They then hooked him to a monitor to watch his heart rate and O2 saturation levels. That thing kept going off constantly because Luke would wiggle his toes or he would hold his breath a little. It became a huge pain.

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I had to repeat *the story* several times to the nurses. It was like hell having to relive it all and describe how my son had seizures. They started an IV in his right arm. Watching that mightve been hard before he had the spinal tap. Anything after watching your baby having a spinal tap is easy. When they started the IV they went ahead and drew more blood. It was so sad.

Dr. Skinner, a 3rd yr resident from FSU was our Pedi ER Dr. She reminded me of Audra and I felt really comfortable with her. She got in touch with Dr. Surbiehr who was an infant neurologist. He called for an EEG and an MRI immediately.

The tech who did the EEG was called back into work. Apparently it was the end of her shift and she had to come back in. We were so thankful she was there to do it though. She came in and started prep’ing him for the EEG. She told us to be quiet and not talk, etc, during the test. She asked if he had a binky. We told her he hasnt taken one yet but that he was very hungry and tired and upset so he might take one. We tried and it took a while but he took it really well.

She started putting this paste on his head where the leads would go and marking with magic marker where certain places were on his head. It was so so sad to watch. He did such a good job. She had him wrapped up in towels in a mock swaddle so he couldnt move. He had the binky and he was wrapped so he was content while she put the things all over him. When she finished that she wrapped it all up so if he had a seizure or had to be moved the leads wouldnt come off. He ended up looking like a tiny fragile mummy. She started the test and dh & I got quiet. Through most of the test she either talked to us or talked on the phone to the neurologist. We thought it was odd she told us not to talk because it would cause artifacts but then she engaged us in conversation too. She noted each time he moved a body part or when his eyes moved. He hardly moved at all. He kept looking up at the big light hanging over the bed. I told the nurse that he had fallen asleep.. he had his eyes open partially but he was out like a light. She came over and looked.. she had me rub all over him to wake him up. He finally did wake up. Then he fell asleep again. We had to unwrap him and rub him all over to get him good and awake. She had me talk to him gently. I just talked to him about how he was going to be ok and we were going to get him all fixed up. I think it helped me to talk to him and reassure him. It was kind of therapeutic in a way.

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When it was all finished she took everything off of him. He hardly made a peep when the tape was taken off his head. He was such a good little baby the whole time. We couldnt believe it. I think it was around this point when they came to give him the phenobarb meds. It would sedate him for the MRI and it was also a anti-seizure medication so it had a dual purpose. They gave him a loading dose which knocked him out. It was such a massive relief to know that he had meds in him that would keep him from seizing. This mustve been around 6pm because the MRI had to be done before 7pm when they closed.

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Before the MRI, two resident Drs came in to talk to us. Because it was a teaching hospital we had to retell our story half a dozen times. We showed them the video on my camera of Lukes big seizure and they asked lots of questions. They answered some questions for us and told us to ask other questions to Dr. Surbiehr.

After a bit they came to get us to take us to the MRI lab. I got to hold Luke while they wheeled me down the hallways and down to the basement. Dad hadnt arrived yet. We got word that he made it onto the air base and was packing our clothes up and had headed to the hospital. Sadly, he packed everything up and then left it at the hotel. The poor guy was massively sleep deprived and terribly worried about his little grandbaby. The nurse got lost on the way to the MRI lab because the hospital was under remodeling and everything had been moved around. We finally got there and they made mom, dh & I want in the waiting area outside while they did the MRI. It took 45 minutes. It was miserable. We were all scared, tired, and hungry. The 45 minutes drug on and on. At one point I asked what time it was.. it had only been 15 minutes. I was sure our 45 minute wait was almost up. Dad finally showed up. He was exhausted and visibly worried. We all sat there and waited together and filled dad in on what all had happened up to that point. It was terrible having to recount everything again.

Finally they were finished and they took us all back up to the ER room and said that we would be admitted. The hospital was full of sick people so we would have to wait on a room. We waited probably 2 hrs. I cant remember if it was at this point that they let me feed him or if it was when we got to the room. He was hungry right after we got into the Pedi ER but they wouldnt let me feed him since he would have an MRI. They didnt want him to aspirate. He went something like 4-6 hrs without eating. My poor little guy was so hungry. During the wait on the room they told us the MRI preliminary report looked ok. Nothing stood out as being obviously wrong. It was such a relief to us because that meant there was no bleeding on the brain or head trauma to cause the seizures. Right before we went up to our room they told us the EEG had been read by the neurologist at home and it was abnormal. They couldnt tell us anything other than that. Of course we were very concerned about what that meant.

We finally got into our room on the infant and toddler floor. The nurses all spent a lot of time talking with us and answering any questions we had. They all seemed to jump when we had a request. One nurse flat out said that since we had insurance the Drs would treat us like royalty. Mom and dad went ahead and drove back to Hurlburt for the night. They had 1 more night to spend on the base and then they had to find a new place to stay since we were *supposed* to be leaving the following morning for home. We were so exhausted and felt terrible. I hadnt had a shower in 2 days so I felt even more yucky and miserable. I dont know that I left his hospital crib for very long that night. All I could do was stare at him. We tried to get some sleep but it was too hard. DH kept having nightmares about the seizure we caught on video. I slept only an hour that night. I couldnt stop thinking about what all had happened and what the future would hold. Most of the night I stayed awake incase he had another seizure. I still was so scared he would have another. We didnt know if we could handle seeing it again.

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When we got up the next morning mom and dad brought us an over night bag. Everything was thrown in the suitcase so we ended up with lots of random things. The neurologist was supposed to see us that morning so we waiting impatiently to talk with him. He made his rounds at 9am and looked at Luke chart but didnt come talk to us. The nurses told us all day long that he would be by to see us. DH was visibly upset that we had to wait. He was starting to feel worse from the immense amount of stress weighing down on him. I had prayed and prayed almost non-stop for Luke. I believe God gave me peace in that time. DH says I was the prefect mommy and he made comments that I was so strong for Luke and how I was doing better at all of this than he was. I think I truly did somehow manage to give it up to God. I really felt like Luke would be ok too.

Sherri, a friend of the family, came by to see Luke. We had lunch with her and Rod, her husband, on Saturday down at the beach. It was so good to see her. She is such a source of peace for dh and he told me he was relieved to see her. She brought us drinks and when I dropped my tooth brush on the bathroom floor she bought me a new one in the gift shop and even made a little care package. My brother and new sister-in-law showed up then also so see Luke. We had missed their wedding which we hated but we had good reason obviously. I was glad they stopped by before heading out on their honeymoon.

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After the visitors left mom & dad stayed with us all day. They took our meal tickets and went to the cafeteria and got us lunch. All day long the nurses checked his vitals and everything. I continued to nurse him the whole time too, which happened to be no easy task. The little man had wires all over him which we had to carefully arrange so we wouldnt jerk them out of him or set off an alarm. DH still was feeling terrible. He ended up taking two showers to try to feel better. He ate just a little bit but it made him feel sickly. He tried to sleep but it was not helping. He asked the nurses about the neurologist several times. Finally around 2pm a nurse actually called his office and he had been in clinic all day and would be finished around 4pm.

Right at 4m he showed up. He was such a nice man. He carried a big black medical kit and set it on the bed and began to do a visual check of Luke. He looked him over and commented on how beautiful he was. Thats all we heard the whole stay.. the nurses sent each other to our room to see ‘the precious baby’. All of Lukes reflexes were spot on which was a huge relief. He went on to say the MRI was normal, the blood work looked normal, but the EEG was abnormal. Thats common when a kid has seizures. He said he had been in contact with the Chief neurologist at Children’s Hospital in LR and he was up to date on all of Lukes tests and the whole situation. He had previously sent a message by nurse to us that he might have a med flight arranged for Luke me me to go home instead of drive home. When he came to talk to us he said at this point it was definitely safe to drive home. It had been 24 hr since he had a seizure. He did want us to stay one more night though.

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After he left I gazed down at Luke. When I looked up dh & my mom were crying. I was so confused, we just had been given some pretty good news. Luke was going to be ok with the meds and we had a great Dr lined up at home. Even though he wasn’t out of the clear yet things were falling into place by the grace of God. Such a relief was lifted off all four of our shoulders. We could finally breathe again. My parents stayed with Luke while dh & I went downstairs to get some dinner with our meal tickets. Those hospital hamburgers were pretty good!

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When we came back the neurologist had come back by and we missed him. He was wanting to know if I took any meds while pregnant with Luke. I left a note with him at the nurses desk explaining the GBS + and antibiotics I took. We sat around at ate our dinner and then my parents went to get a hotel room around the corner. They left pretty early so they could get plenty of sleep for the drive home the next day.

All night long the nurses were vigilant about checking on Luke for every little thing. We think they were making sure he was ready to go home. We got slightly more sleep than the night before. DH and I traded off sleeping on the fold out love seat and the recliner. The sofa bed was so much more comfortable. DH got up and showered before my parents showed up. When they got there around 6am Tuesday I got up and took a shower and we raced around stuffing our things in the suitcases so we could get out of the hospital quickly so we could get on the road. The night shift had gotten all the discharge paperwork ready so they could get us out of there right as their shift ended so we wouldnt have to wait on the next shift.

We were out of the hospital by 7:15am and on the road by 7:30am. We were thrilled to be going home all together with our little man. I was so emotionally and physically exhausted I couldnt take it anymore. I fell asleep with my head in my lap. DH stayed awake to keep an eye on Luke while I slept. We made it to my parents house in around 9.5 hrs. We furiously packed our bags into our car and headed home. We were so thankful. We thank God every day our little man Luke is going to be ok.

If you read this far, thank you for letting me get this out.

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