Posts Tagged: ‘Pediatric Stroke’

The RynoBoy Chronicles: The Toughest Foe Yet, Part 1

January 3, 2012 Posted by Brandon Gilbert

So there I was strapped to a bed. I had no idea how I got there or when, but I couldn’t move my right side. I was hooked up to countless wires and monitors. I looked a bit like the monster in Predator, only without the awesome cloaking ability. One by one, I was poked and prodded by an army clad in white coats. I couldn’t make out what their end game was, but all I knew was that every so often my brain would scramble and I couldn’t say the words I wanted to say or move to free myself.

I spent the next couple of days going in and out of consciousness, taking each moment of lucidity to try and get my bearings and find means of escape. Every so often I would charm those of my captors who were female and while they weren’t looking I would remove some of the wires hooked up to me. Alas, I was soon discovered and reattached. The whole operation was made all the more difficult by the lack of movement on my right side. I decided that while I was hooked up to all the machines and couldn’t move well, it was best to just bide my time until I could make my move.

After what felt like an eternity, but my best guest was about a week, they finally unplugged me and moved me to a new area of their compound. It actually wasn’t too bad, I had a TV to watch, and they brought me my favorite meal: French Fries and Sweet Tea. Then it dawned on me that my captors were trying to gain my trust. I stopped watching the TV because I was fairly certain it was a subliminal broadcast meant to brainwash me into joining them in some weird Stockholm Syndrome plot twist. I was too smart for that, though I did continue to eat because it helped me regain my strength and I knew I would need it to make my move and escape. Besides, I knew that if they were trying to get me to join them, then they most likely weren’t trying to poison me.

The people in the white coats continued to visit in droves, though, and they gave me a lot of drugs. At first I fought them, but I wasn’t at full strength and I couldn’t defeat them all, but soon enough I realized that the drugs were lifting the fog I was under and that the Brain Scrambles had stopped.  I still didn’t like it, but I decided the best thing to do would be to take them.

I was in my new quarters healing nicely for about another week when my chance to break free finally came. There was a supply vehicle that came in and I snuck a ride in the back. I was in there for four hours when the supply truck finally stopped. It was then I stepped out and realized the horrible truth: I was in an identical facility hundreds of miles from home.

Will RynoBoy be able to escape the WhiteCoats? Will he be able to get back home?

Tune in next time, same RynoBoy Time, Same RynoBoy channel.

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Finally, a New Year.

January 2, 2012 Posted by Brandon Gilbert

2012

 

As most of you know, 2011 wasn’t the greatest era of TheBrandNewDad household. Thankfully, we are some very loved people and had the support of hundreds, if not thousands with spiritual and moral support. We also had many, many selfless people who lent financial support as well, including our church family. For all the bad things that happened this year, one thing that was confirmed for us is that we are loved by a lot of people. I wanted to give  a rundown of the year for all of us and an update as to where Ryne is now in his recovery.

Things that happened this year:

  • After nearly two years of unemployment, I got a job.
  • A week after I got my job, Ryne had a Stroke.
  • Due to the stroke, Ryne got to spend a month in the Hospital split between Monroe Carell Jr. Children’s Hospital at Vanderbilt and Children’s Healthcare of Atlanta.
  • Ryne had his first broken bone as he broke his arm while in physical therapy in Atlanta.
  • Jamie had to take off work for about 5 months to take care of Ryne and take him to therapy appointments.
  • Ryne developed an impressive collection of “ists.” He now has Neurologists, Geneticists, Gastroenterologists, Cardiologists, Physical Therapists, Occupational Therapists, and Speech Therapists.

After the initial horribleness, things started progressing nicely. Ryne made wonderful progress in his healing due to a lot of prayer and his “ists.” He had 20 treatments in a hyperbaric chamber and went to several therapy appointments per week. We found out that he may possibly have a genetic condition called Primary Carnitine Deficiency, and he started taking a Carnitine supplement, much in the way a diabetic would take insulin. All this has led him to thrive tremendously. Before the stroke, he was having trouble growing and had fallen off the growth chart, but now is back on the growth chart and it seems like he’s growing taller everyday. Before the stroke he was in size 12-18 month clothes. Now he’s in 24 month/2T. Before the stroke he was wearing a size 3 1/2 shoe. Now he’s in a size 7. He has Gilbert feet, no doubt.

Everything with his growth and development seems to be progressing great, but there has been one glaring setback: Seizures. After the doctors stopped his seizures in the hospital after the stroke he was seizure free for months until October when his seizures returned. Since then, it’s been an average of about one per week. We’re keeping a journal so that maybe we can pinpoint anything that brings it on like food, stress, etc. that would help us to prevent them in the future.

We’re excited about all the progress he’s made, but there’s still a big uphill climb. We need your prayers as we continue with his healing process. While we still have a ways to go, I am sure glad to be through with 2011.

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Castoff

June 28, 2011 Posted by Brandon Gilbert

Well, that didn’t seem quite so long.  Ryne finally got his cast off today. So he looks like this again:

It was kind of anti-climactic since we’ve been building up to this with him for a while now, counting down the days until his arm lost its thin non-candy shell. He and I even had a long discussion last night about what it meant now that he would be without his cast. I know most of you wouldn’t understand much of what he said, but luckily I speak baby and am able to interpret it for you. So, without further ado, here is the entirety of our conversation from last night…

Dad: You know what happens tomorrow, right?!?!?!?!?!?
Son: Yes, you go to work and Mommy and I go to where they make me play with educational toys and do Jazzercise.
Dad: Nope, not tomorrow, tomorrow you go get your cast off so you can finally use your arm again!
Son: I’ve been using my arm. See, look (He smacks my arm with it). Want to see me use it again?
Dad: Ouch! that hurts buddy! You’ve got to be gentle.
Son: Geez, sorry Dad, didn’t realize you were such a delicate flower.
Dad: Well, now you know… So, are you excited to get your cast off?
Son: To be honest, I’m kinda disappointed. I like to use it to pretend my arm is bionic, like the six dollar man.
Dad: That’s the six million dollar man, son, and besides, who knows what he’d be worth with today’s prices of materials, then factor in union labor costs, government red tape on melding human and machine, and the…
Son: Dad! Dad! Whoa there! I believe your train has derailed. I said I like to pretend. In pretend land, there is no inflation or cost of living increases.
Dad: You’re right, I’m sorry. It’s been a long time since I’ve played pretend. I used to pretend I was Michael Jordan.
Son: Wow, that had to be some pretty difficult pretending.
Dad: I was a lot better at hoops than you might think. Shoot, maybe I still am. Anyway, I, for one, am really glad you are getting your cast off because it made me sad when you broke your arm.
Son: What does it mean to break your arm anyway? When my toys break you usually fix them with a screw driver or some new batteries. I didn’t get any new batteries.
Dad: Well, it means the bone in your arm, your humerus , had a little bitty fracture in it and you had to have a cast put on to keep your arm from moving at the elbow so that the fracture could grow back together. You’re actually quite lucky you didn’t need screws. That happens sometimes.
Son: Lucky? I bet I’m the only 23 month old to have ever had a broke arm. And I most certainly didn’t find it humorous.
Dad: Well, it happens a lot more often than you think. And it’s H-U-M-E-R-U-S.  It’s a different word than the one that means funny.
Son: Really? So tell me what happened when you broke your arm when you were my age.
Dad: Actually, I’ve never had a broke arm…or leg. But I did have my pinky dislocated once when I was on tour with Tim Byrne and our friends in Philmont.
Son: Prove it.
Dad: Ok, here:

Dad: Yep, it took one doctor holding my arm and two doctors pulling on my finger to pop it back into place.
Son: Ugh, Dad…please tell me this isn’t some elaborate “Pull My Finger” joke.
Dad: No, Son, I was just telling you about the time I had a boo boo like yours.
Son: Well, thank you Dad. I appreciate you trying to relate your little pinky boo boo to my bone with A BREAK IN IT!!!
Dad: Well, you’re welcome. Just remember, that break in your arm has a matching one on my heart.
Son: I love you too, Dad.

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Ryne: A Status Report

June 20, 2011 Posted by Brandon Gilbert

 

The last two weeks have been amazing having Ryne and Jamie back home. I believe that Ryne being at home in an environment he’s used to is really helping him to thrive. He’s started outpatient therapy at Vanderbilt and he seems to be responding well. The following is a little list of where he is now in the recovery process:

1. His cast will come off on June 28th.

2. In spite of his cast, he has been using his right arm more and more, including using his fingers!

3. Until his cast comes off, he can’t do occupational therapy to help with the fine motor skills on that arm, so right now he’s only doing physical therapy.

4. He should begin with speech therapy soon but we still don’t know the exact date of that yet. He’s getting a lot of his old words back along with some new ones already, so this should help him become the finest orator in preschool.

5. On July 11th, Ryne will go to the neurologist at Vanderbilt to have an EEG to see what his brain activity is like. We are really praying that everything will be to the point that he can start coming off of his anti-seizure meds.

6. Ryne has two new movies, Finding Nemo and Milo and Otis. Milo and Otis has not made an appearance yet, but Nemo is on repeat. I guess when you watch every Shrek movie 6 times a day it’s a nice change of pace.

7. The physical therapy people at Vanderbilt keep going back and forth on putting Ryne in a leg brace on his right leg. His leg keeps “kicking out” a little and they just want to make sure that he strengthens it up good. The good part of           that is that he’s doing so well without one that they can’t decide if it would for sure help him.

8. Ryne’s biggest challenge and the source of most of our prayers for him now is that he has lost peripheral vision in his right eye. if you come from his right side, and don’t make sounds, he doesn’t know you are there until you get right in front of him. He’s young and doesn’t really know any better, so none of this bothers him right now, but we do worry for him in the future if it doesn’t come back. Without peripheral vision it’s hard to play sports, drive, and put your           arm around dates without hitting them in the face. Everything else has been coming back so well, that it’s frustrating     to see no improvement in this area. Of course, it’s frustrating that he has to go through it at all.

So, that’s where we stand right now. If there’s anything you’ve been wondering about, PLEASE feel free to ask. We’ve had so much support from everyone that we feel you guys are going through this with us.

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Home

June 11, 2011 Posted by Brandon Gilbert

They say Home is where your Heart is. That’s very true. For the last 2 weeks, my home has been in Atlanta. It wouldn’t have been so bad for my heart to be in Atlanta, if only the rest of my body could have joined it. Instead, I’ve been in Nashville with only quick trips to Atlanta on the weekends to be able to see the two loves of my life, Ryne and Jamie. As rough as it’s been, it’s all a distant memory now, because my family and my heart is now back home with me in Nashville!

Few things have given me as much joy as seeing my son being wheeled out of the Hospital in a wagon, knowing that he’s on his way home:

Ryne could even sense that we were leaving before he was discharged. I guess it was because we were packing everything up and I was taking it all down to the car. He kept looking out the window and saying “Go! Go!” Yeah, after almost a month, I was ready for us to go as well. Ryne seemed to realize that it was time to go home, and he seemed quite comfortable in his car seat:

On the way home, Ryne slept for a good portion of the way, and when he wasn’t sleeping, he was singing or talking. I think he understood he was heading home, and he was pretty happy about that!

When we finally got home, we were surprised to find that some friends (who apparently want to remain nameless) had blessed us with a great homecoming collage on our door with words of encouragement and Bible verses for strength. It was so nice to come home to this:

When we let Ryne down inside he explored all over our apartment to make sure everything was like he left it. For a while, though, he didn’t want to go in his room. I thought he may have been traumatized by what had happened, but I think it was more of a case of a two-year old’s prerogative taking over, as he eventually went in there and looked around as well.

As happy as our day was, the night was a little more worrisome. Laying him down to sleep was really hard for me, because I kept having flashbacks of the last time I had gotten him out of his crib. I don’t know why I can’t forget that moment, because I am trying so hard to do that. But sometimes it plays on a loop in my head. Jamie and I both were scared about how we would handle him sleeping in a different room from us, especially when everything with the seizures and stroke happening without him crying and alerting us to what was happening. So it was decided… we would wake up 20 times during the night and go check on him. Well, in actuality, we decided we would set alarms and check on him every couple of hours.  Jamie ended up taking more shifts of checking than I did, but to go in there and hear him breathing his little baby breaths and to see his body relaxed and without worry is such a huge blessing.

We made it through the first night, but I feel like it’s going to be a long time before we can rest easy and trust he’s OK during the night. But that’s a problem I’m happy to deal with, because Home is definitely where your heart is, and my heart is now back home with me.

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The ATL: Week 1 (and a half) in Review

June 5, 2011 Posted by Brandon Gilbert

I just got back from my second weekend in Atlanta with Ryne at Children’s Hospital at Scottish Rite. He’s in the Comprehensive Inpatient Rehabilitation Unit there. It’s very intensive and his days are filled with Occupational Therapy, Physical Therapy, Speech Therapy, and a little Music Therapy for good measure. It’s all working terrifically as his personality seems to be getting back to where it was before the stroke. He’s walking a lot and wants to explore the entire hospital. The muscles in his face seem to be strengthening and I don’t notice any more droop on his right side (it was barely noticeable anyway, but when it’s your kid you notice these things).

The things that he still needs to work on are: His right leg kicks out sometimes when he walks, so a lot of times his stride is more of a shuffle. The Doctors at Vanderbilt are most likely going to fit him with a brace to wear to help correct this. He is talking a lot more, but he’s not quite hitting the right syllables or saying all the words he used to say. And it’s not a big deal, but one thing I notice is that his tone of voice is different. He seems to be just a little slower with what he does say. But he’s getting better, and everyone has re-assured us that he has every chance for all these things to eventually be distant memories. And last, but not least, is his lack of use of his right hand. He’s gotten to where he’ll put weight on it to push up and even to pull up (if you make him, but not on his own). But when he plays, he holds it back like he’s a bird with a wounded wing. The therapists do say that this is a concern because his arm could get used to not being used and it could cause him to have a detriment in the future.

Ryne made a friend last week. His name is Sebastian and he’s one month younger than Ryne. They played great together, even sharing with each other during music therapy.  Sebastian had to leave Friday and move to a different floor. Sebastian had a brain tumor removed started chemotherapy on Friday…that means he goes to a different area of the hospital. Here is Ryne playing with Sebastian…and Sebastian’s Mommy helping out:

As you can see here, Ryne is holding his right arms back as he plays. You can barely see it, but he has a splint on his right hand that holds his thumb back and also some medical tape that is supposed to stimulate his hand to open up. It is stimulating him, to pull at the tape with his left hand.

This week some of the kids, including Ryne, had at outing at a place in Atalanta called Sensations TheraFun. It’s a really cool place that is a giant playground that is specifically geared to help kids who need sensory stimulation. The kids are just having fun, but all the activities are geared to getting them to use their motor skills and reasoning skills more. They usually work with kids have Autism, are on the Autism Spectrum, have Sensory Processing Disorders, ADHD, Down’s Syndrome, Asperger’s Syndrome or kids who just need sensory stimulation in their play. This is helpful for Ryne because the therapists are trying to get him to use more of his motor functions and reasoning skills. Here is the inside of Sensations TheraFun:

Ryne did a lot of things, even riding a zipline, though he didn’t like that for very long. In the end, he ended up where he feels like he has the best time…with Mommy:

 

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The Worst Day(s) of my Life Part 3

June 2, 2011 Posted by Brandon Gilbert

When the Doctor told us Ryne had had a stroke, I thought I might have one myself. I felt as if he had literally punched me in the gut. My head spun and the room followed suit. How could this even be close to being true? How does a 22 month old have a stroke? Why wasn’t this on the warning label when we decided to have kids? After that, Jamie and I were left alone again, but luckily some of our good friends from church and my parents had arrived.

We went out to share with them the news that just floored us. We cried a lot and expressed our disbelief that something like that could happen and waited for Jamie’s parents to arrive so we could let them in on our bombshell (how do you tell someone that on the phone?)  We all waited together for Ryne’s MRI to be done. It was originally supposed to be an hour, but ended up being almost 3.

After the MRI was done, Ryne was moved to the Pediatric Intensive Care Unit (PICU). He started to be a little responsive later that evening, saying “Mama” and even trying to dance a little bit. It was hard because he had so much fluid built up in him that his eyelids were swollen shut. We couldn’t tell if he was really awake and coming out of his fog. The next morning all of the progress stopped at 5:45 when Ryne had another seizure. Over the next two days, I lost count of all the seizures he had. He would show signs of himself and then a seizure would hit his reset button.

Finally, the doctors gave him a third anti-seizure med that seem to finally stop the seizures. He also seemed to start coming out of a fog.  He started making lots of progress, though it was plain to see that there were physical effects. He couldn’t talk like he could before and the right side of his body wouldn’t move very much. Ryne wasn’t even aware that he had a right side. To him, his field of vision ended in front of his nose. The Doctors asked us to start going to his right side to help him move toward that side. The hardest part was that Ryne was hooked up to an EEG machine that read his brainwaves. The Doctors wanted to make sure that he wasn’t having any sub-clinical seizures (these are seizures that have no physical symptoms). He was supposed to have it on for 24 hours, but 24 hours turned into 72 hours. So all the time he’s starting to feel better, he’s held down by all these wires attached to his head and body. He had a turban of cotton around his head to protect the wires, and it was extremely uncomfortable for him. All he did when he was awake was pull at every wire and lead he could find to try and get it off his body.

There are so many more things that went on during this time, but I am really just ready to move on to the recovery phase. Ryne is making such great strides and it’s hard to think about the dark uncertainty of those first days. One thing that helped us and continues to help us was the MASSIVE outpouring of love and support from literally thousands of people. Of course our family was awesome, but our Restoration Church family stepped up to make sure that basic needs were the last thing on our mind. They brought us food and love and friendship. It seems like an oversimplification just writing it out, but their awesomeness is really hard to put into words.

There were other church families that we heard from and that blessed us. We had people praying for us all over the country. The love and support we got from everyone has truly been what enabled us to make it these last few weeks. From here on out, we’ll concentrate on the positives of Ryne’s recovery. I know it was hard, but thanks for reliving my nightmare with me.

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The Worst Day(s) of My Life Part 2

June 1, 2011 Posted by Brandon Gilbert

When I arrived at Vanderbilt, I was confronted by a truly disturbing site: A team of eleven Doctors working on my son. I don’t know if you have kids or how big they were at 22 months old, but there’s hardly enough of his body to go around for eleven people to work on. Things got worse when Jamie alerted me to the fact that he had another Grand Mal seizure on the way to the hospital. Everything was happening at 1000 miles per hour, yet time still seemed like it was standing still. At first, Jamie and I had stood in the trauma room while they worked on him. He still would not wake up. They gave him anti-anxiety medicines to stop the seizures and worked to get a handle on his body that seemed to want to shut down. We found it a little too hard to watch and there was nothing we could do, so we sat down outside the trauma room.

A few minutes after we had sat down we started making phone calls to our parents. We wanted them to be aware of what was going on and what we knew (well, what we didn’t know) at the time. Jamie’s parents were coming up from Decatur, AL and my parents were coming up from Walker County, AL. We wanted them to know as much as we could, plus at times like that you just need a family connection. We were sitting there after we had made our calls when all of a sudden the curtains closed in the trauma room and more people went in and there were more needles making their way into the room. Only later would we find out that it was at this time that Ryne quit breathing. They didn’t tell us right away, and I’m almost glad for that. But I’m still haunted by the fact that for 20 seconds out of his less-than-two years on this Earth, my son wasn’t breathing.

They finally gave us an update and told us about the breathing and how he was responding to the meds. They said he seemed to finally be getting agitated with them, which was awesome. He hadn’t responded to anything for almost 2 hours, and finally he was showing some signs of life. They let us know that they had prepared a “crash cart” and an intubation kit if it had become necessary to use those. We were blessed and they never had to pull the trigger on those things. Even though he had stopped breathing, once they got him started back, he was good enough to breathe on his own.

They took Ryne off for a CT scan and Jamie and I stayed in his room waiting for him to get back. We cried and played some games. You’ve probably played those games, too. You know, The “What-If” Game, and “The Blame Game,” and of course the “I Should’ve Done This Instead” Game. The really hard part about those games, though, is that there are only losers…and you feel those losses every time you play. The CT Scan came back and they immediately decided they wanted to get an MRI to see more conclusive pictures of his brain. We weren’t really sure of why he would need both or how they were even different. The doctors said that the MRI would give them some super-high resolution images of his brain. We were taking everything in and giving consents when the Doctor decided to blow our minds. He wasn’t cold, just matter-of-fact when he delivered the shock of our lives: Ryne had had a Stroke.

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The Worst Day(s) of My Life-Part 1

May 31, 2011 Posted by Brandon Gilbert

It’s been a couple of weeks now and Ryne is making so much progress that I feel like I can finally relive May 16th enough to write about it. This is probably more of a cathartic process for myself than an entertaining one, but I wanted to do my best to help you all to feel the elation we feel from Ryne simply taking steps again or to feel how we hold our breath just to see if he’s going to grab a toy with his right hand. In order to show you how happy this all makes us, I have to take you back a couple of weeks and share with you our despair when we felt everything crash down and didn’t know if anything would ever be the same.

May 16th, 6:00 AM: I woke up with several thoughts. The first was how I didn’t want to go to my new job that day. I was starting my second week and it’s a blessing to have a job after nearly two years of being unemployed, but I wasn’t really happy with what I did. My thoughts quickly turned, however, to the short guy who lives in the room next door. He had been sick the night before with a fever and some vomiting. His Mommy had given him medicine that took care of his fever the night before, and I wanted to go check on him and make sure the fever hadn’t returned. So I got out of the bed and went to his bedroom. When I opened the door I walked over to his crib and I could hear him whimpering. I felt of him, and he didn’t feel hot. Since he was whimpering, I thought I would pick him up and take him to his Mommy so she could comfort him a bit.

When I picked him up, he was really floppy, like a fish. He just didn’t seem to have control over holding his body up. I carried him into our bedroom and flipped on the light. I told Jamie as I walked in, “We’re going to have to carry him to the ER.  He’s just not doing too good.” When I laid him down on our bed, I was finally confronted with the site that still sickens my stomach. I almost can’t force my fingers to type the words. I looked down at Ryne and his eyes had rolled back into his head and he wasn’t responding to me. I yelled his name. I clapped my hands right in his face and snapped my fingers. Nothing. It was then that the weirdest thing happened. I was consumed by sheer terror when all of a sudden everything slowed down and Jamie and I both kinda came out of our bodies and the whole moment became a surreal drama that we were watching instead of participating in. Jamie whipped out her phone and dialed 911 without hesitation. She handed me the phone and I was able to talk to the dispatcher without losing control. I was able to give all the pertinent information as well as take directions on how to keep Ryne physically stable until paramedics arrived.

The dispatcher had me lay him flat on the floor with my hand under his neck to keep his airway open. Ryne drifted in and out of consciousness, though I don’t think he was truly conscious even when his eyes were open. He never did respond to my voice. At one point, both Jamie and I both saw him with the tell-tale mouth “droop” that’s a sign of a stroke, but neither of us said anything to the other. I believe looking back at the call log on Jamie’s phone, we waited 14 minutes for an ambulance. I believe that if I tried hard enough, I could recall every tick of the clock, though I have fought my best to forget them.

When the paramedics arrived, I got up and let them do their job, which lasted about 8 seconds. After that, one of them had scooped Ryne up and was out the door, shouting “C’mon Mom” behind her as she went. I locked up behind us and went down to the car so that I could follow behind the ambulance. I knew I couldn’t follow right behind, but I was glad Jamie was with him. It took them a while to get going because they were getting his “stats” and trying to stabilize him, as well as getting this tiny body safely into a bed meant for much larger people to travel in. It’s kinda weird the things that go through your mind at times like this, but like I said, I felt more like an observer than a participant. I kept thinking, ‘at least the Ambulance can go through and around traffic. I can’t believe this is happening during morning rush hour in Nashville.’

They were finally ready to be off when they asked my wife what hospital she wanted to go to. God smiled on us when it was decided that it would be Vanderbilt. They took off with me in hot pursuit. I was able to get there just 10 minutes after them after going through rush hour myself. What had been only about 45 minutes felt like days already, and we didn’t even know what the day had in store for us yet.

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