Derek and I wanted to have a birthday party for Greyson, but had very little time to plan one. We searched around places in the Lancaster area that would host a small party (just immediate family), where Derek and I would have little responsibility to set up or clean up. We knew it would also have to be at a venue where the kids could run around and have ample opportunities to let out energy. After budgeting and looking at dates, we settled on BounceKraze to host his party. From previous trips to Hilton Head’s Island Bounce Place, we knew that G loves to bounce and run around. This would be the perfect place to host his party.
Derek and I were responsible for any balloons we wanted (we got a small bundle of them) and a cake. His party this year was pawpatrol but it could’ve been anything and he wouldn’t have cared. We arrived at BounceKraze around 11:30 am, brought in the balloons and cake and Derek and I were officially off the hook for the remainder of the party. Greyson immediate ran to the toddler area, faster than I could take his shoes off, and that’s where he remained for the next 90 minutes.
He had a great time bouncing and only got irritable one time, when I wouldn’t allow him to bring his juice into the bounce house. We also managed to get out of there with one tiny injury between Lexi and Roslynn: they went down the big slide together too closely and bumped heads.
The party room was the perfect size for our small party. Naturally, G was mad because he was now confined to an area, so he was fussy at first but quickly quieted down when he saw the balloons. The party pack we ordered provided 4 pizzas, drinks and chips and Derek and I brought along the cake. Everything was set up and cleaned up and we barely lifted a finger. It was fantastic! The staff was great and our party hostess in particular, was awesome with preparations and making sure G was happy and comfortable. We left the party with 2 extremely sleepy toddlers and 2 extremely satisfied parents.
By the time we loaded the car up with leftovers and presents, G was already out cold.
After a successful party, tired children and a happy birthday boy, we got home and also crashed. I was hoping for a quiet Saturday evening, but the health insurance Gods had a different plan.
The kids had dinner and after our evening bedtime routine, we were watching Daniel Tiger’s Neighborhood to settle in for the night. Greyson caught a second wind and began running across the couch, until his foot slipped and went in between the pieces of the sectional couch. Immediately, Greyson let out an awful scream. Turns out, when Greyson’s foot went into the crack in the couch, his foot was punctured by a piece of metal that holds to sectional pieces together. Once Derek pulled him out of the sofa, he saw a lot of blood. Judging by the amount of blood, I knew he would need stitches. So, like our typical weekends, Derek packed G into the car and drove him to the ER, while I took Roslynn to my parents house (I was NOT bringing her into the ER on a Saturday night).
Once we were seen, the ER doctor confirmed that he needed stitches. If you’ve ever had stitches, you know that the stitches aren’t the difficult part of the process, the needle to numb the area is. Greyson had fallen asleep in the time between the waiting room and the being seen, so G was out cold when they started the procedure. The pinch of the needle sent G into a giant tantrum, which made it extremely difficult to hold him still enough to get him stitched up. Luckily the ER doc was quick and had a steady hand, so the process itself wasn’t too bad, or too long. The Lancaster General Hospital ER on a Saturday evening is always a fun place to sit around and wait, and with multiple traumas coming in, we didn’t get home until after midnight. Both kids were awake when we got home, so it was well after 1:30 until we went to bed.
Waking up this morning, yesterday felt like a dream. Except it really happened, and Derek didn’t freak out with the amount of blood everywhere! We survived our first legitimate injury as a family like pros, guess we have had some practice with emergency situations. I’m really hoping for a boring, uneventful Sunday today. We have our first trip to the main CHOP hospital tomorrow, when we will meet with the neurologist that specializes in genetic abnormalities. Hoping for some more insight and information into Greyson’s genetic condition. We can only hope.
Hard to believe that exactly three years ago, my amazingly special little boy was born. 5:03 pm, Greyson graced us with his tiny body and big personality. My birth experience with Greyson was actually peaceful and calm. I had gone into labor naturally exactly 1 week before my scheduled cesarean section and because I didn’t go into labor with Roslynn before my emergency section, I had no idea what to expect.
My section with Roslynn was an emergency due to atypical preeclampsia, so I was really out of it and had zero recollection of signing documents to allow interns into the OR. When it came time to go into the OR this time around, I denied all unnecessary staff/students access to my procedure. It was amazing to have less than 5 people in the room, especially since there were at least 10 in there when I had Roslynn. It was quiet. That’s really the one thing I noticed the most that day- the complete silence in the room. Yes, Derek and I spoke to each other and my doctor spoke with her assistant, but Greyson’s birth was calm, quiet and peaceful. Totally opposite of the 1,095 days to follow.
As you can see, he loved being wrapped up tightly, even snoring away at 3 hours old.
Having our first child 15 months prior to Greyson’s arrival, Derek and I were pros in the newborn baby department. But something with different about G. Countless times I’ve heard the same advice for parents of two (and more) kids- “the older sibling talks for the younger one, so his speech will probably be delayed.” Or, “you can’t compare your kids to each other, they’re all different!”. Or my favorite: “he’s a boy. This is what boys do.” Ok. I get it. But after hearing Roslynn’s cry for 15 months before G was born, I knew something wasn’t right whenever he let out a shrieking scream.
Greysons’s regular “crying” was equivocal to Roslynn’s “I am seriously injured or sick” cry. At all hours of the night (and day) Greyson cried often, and rarely wanted to be held and consoled. We discovered he was an independent (or so he wanted to be) baby, who was ready to conquer the world by 8 months of age. Now, not many people realize this, but in utero, cysts were found in the choroid plexus in his brain. The cysts are one of several flags for trisomy 18, commonly known as Edward’s Syndrome. Luckily, G did not have the other red flags for the condition, nor did he have a positive result when genetic testing was done. Why does this all matter?
If you’ve been following my blog recently, you’ve probably read about Greyson’s recent onset of Grand Mal seizures and several trips to the ER. After 639 days searching for answers, I am becoming more accepting of the fact that we may never truly understand Greyson’s brain, or even have an accurate diagnosis. My birthday wish for Greyson, is that he continues to be a happy, healthy and funny little guy, with a big personality and even bigger head of curls.
Greyson has several upcoming appointments and imaging tests coming up in the next few weeks. He also has his intake at CHOP in Philadelphia, with a doctor that understands his genetic mutation (STAMBP Gene) better than our CHOP neurologist is comfortable discussing with us. But, for the next four days, my goal is to give Greyson the happiest 3rd birthday party he could imagine and allow him to be a typical 3 year old boy. These times are trying, but Derek and I are doing our best with providing the best life possible for Greyson and Roslynn. We can only do this together, leaning on each other, talking to each other about our weaknesses and our accomplishments and by being honest to each other and ourselves when it comes to this entire (long) process. We welcome the challenge whole-heartedly.
The first 24 hours
Greyson’s second birthday
Stay turned for images from Greysons’s third birthday party!
Whenever I get the chance to speak with other moms who have kids with special needs, I always ask if they knew something was different about their child while they were pregnant. The connection between mother and child, from the first heartbeat, is indescribable. Interesting enough, most mothers day no, that they didn’t feel that anything was wrong until their child was born. Now, they say that redheads tend to be more “in tune” with their bodies (not sure I believe that), but I do recall several times that I felt something was different when I was pregnant with G. Maybe it was the doctor finding cysts on his brain, or the fact that I wasn’t puking all day like I was when pregnant with Roslynn, but I did feel something was off a bit.
Motherly instincts is something that has interested in me since seeing an episode of “Unsolved Mysteries”, one day while I was home sick from school. A segment was done about mothers who had odd feelings about their kids, only to find that they felt these odd feelings at the exact same time a traumatic event was happening to their child. Some of the examples were when a mother was washing dishes and her 6 month-old daughter was silently choking on a small balloon in the living room with her father (who was reading a newspaper). The other example that I remember seeing was when a mother was visiting a friend across town and the mother had a weird feeling about her son, and she called the child’s school and her son had fallen and broken his arm at the exact same time she felt weird. Not saying that all mothers feel “off” when their child has a traumatic experience, but I too have felt these odd feelings on several occasions. The most recent one being yesterday morning.
This week at the Martin household has proven to be the craziest yet. Whenever I think things can’t get more chaotic, the next day typically proves me wrong. Not sure if I was feeling the stress because of work, or if it was the stress of trying to manage G’s appointments, but Monday felt like it should have been Friday. Never a good sign to start the week. Towards the end of last week, Greyson had a medicine increase in his Trileptal, and had a seizure and very difficult day that Thursday. This prompted Dr. Comi to order new imagining, an EEG and labs.
By Tuesday, I hadn’t heard from Kennedy Kreiger’s scheduling office, so I was going to call and schedule the tests as soon as I was home from work. Unfortunately, Greyson was in one of his manic/extremely hyperactive episodes, so the scheduling slipped my mind almost instantly. His behaviors had gotten so bad, that I made Derek take him on a car ride to calm him. Turns out, G just screamed the entire 45 minutes in the car. He did appear a little more calm once they got home and G finally fell asleep on Derek’s shoulder.
About 15 minutes later, I noticed Greyson was moving his mouth in a strange manner, almost like he was trying to talk. I quickly realized that he was going into a seizure.
Naturally, Mr. Duke was all over him. The video shows Greyson seizing on the floor, as Duke barks repeatedly because I told him to back up and give G some space (he didn’t like my request). He ended up coming out of the seizure on his own and slept with Derek for the rest of the evening.
Wednesday we had a follow-up with G’s child psychiatrist and increased his Risperdal dose very minimally, since he appears to be responding well to the dose he was on. His ABA and Special Instructor sessions at the house also appeared to go very well, so I was hopeful for a quiet end to the week. Thursday did hold true to my hopes.
Friday morning, I woke up at 4:30 am as I always do. I did remember hearing G crying/fussing a bit overnight, but didn’t think much of it. I continued my morning routine, but I had that indescribable “something isn’t right” feeling. I checked the nursery camera and saw that G wasn’t in his crib (didn’t really surprise me since I heard him fussing around 1 am), so I switched to the camera we have downstairs. Derek was asleep on the couch and G was right next to him. I almost switched back over to the news channel I was watching, but I decided to zoom in on G. He was in an odd position- almost sitting up with his face in the crack of the sofa cushions and he was moving in an odd way. I quickly run downstairs and see Greyson having a significant generalized seizure.
Side note, quickly: I onlyfilm the seizures if I have another adult with me to assist. We have been asked to do so by the neurologist, so she can see how the seizures are similar and how they can be different.
As you can see in the video, he really was convulsing. I don’t know how long he had been having the seizure before I saw it, but from the time I ran downstairs, until I administered the emergency medicine, it was about 5 mins or so. I truly felt that unless he had his emergency medicine, he wouldn’t have come out of the seizure independently. Luckily the meds kicked in fairly quickly and the seizure stopped. The remainder of Friday was accompanied by aggression, self-injury and lots of crying. By 5 pm, I was dead from the work week and both kids were tired.
The next few weeks will test our patience, as we have several different appointments in Lancaster, Philadelphia and Baltimore. Really praying that we can get some help and get these seizures and behaviors under control.
The first full week back to work after vacation, proved to be a busy one. By the time Thursday came, the daily coffee and espresso consumption was barely managing my fatigue. The previous weekend was difficult, with Greyson having a long weekend of crying, headbanging and aggression. Because of the stressful weekend, Monday morning was greeted as my relief.
Wednesday, Derek and I brought G to CHI St. Joseph’s for a follow up appointment with his child psychiatrist. After a year of debating and consulting with the neurologist, pediatrician and psychiatrist, we decided we would try a very low dose of Risperdal for Greyson’s behaviors and irritability. After the appointment, I was able to discuss our plans moving forward with a family social worker, and was able to get some help from her with organizing possible respite care. I left the CHI office feeling encouraged and optimistic that the medicine may help Greyson, and that the social worker may help us get resources together to help the entire family.
Flash forward to Thursday, the busiest day of the week (at the office AND at home), which began eerily calm. My wonderful co-worker, Lara and I opened the office as we typically do Tuesday thru Friday at 7:30 am. We both discussed looking forward to the weekend and only having “one more day” until the weekend. I explained to her the song from the musical Les Miserables, “One day More”, and how Derek and I usually sing/reference it on Thursday evenings or on Friday mornings to encourage us to finish the week. Naturally, I had to play it for Lara and sing along to get us to Friday.
Roslynn had he first tap/ballet class on Thursday afternoon, so I picked up the kids, ran home, for her ready for dance and high-tailed it down to Lampeter to the dance studio. The class does not permit parents to be in the studio until observation day, so I was able to take some time and catch up on emails and other stuff that needed addressing after vacation.
(Roslynn practicing her tap moves)
By the time we got home, our dinner was almost cold and it was nearly 7:00 pm. We had picked up Greyson’s Risperdal on Thursday, so he was given his first dose around 7:00, with the rest of his evening medications. G fell asleep about an hour or so later and was peacefully asleep in his crib until 9:00, when Duke began to pace and bark, as if he needed to go out. When he continued his restlessness after coming back inside, I heard coughing coming from the nursery upstairs. I checked our “Nanny Cam” that is set up in G’s room, and saw that he was convulsing in his crib. I began to run upstairs and was immediately followed by Duke and Derek. Upon entering the nursery, Greyson was having trouble breathing. We turned him to his side, and he continued to gasp for air. We brought him downstairs to the living room and made some calls, which resulted in us being advised us to contact 911 and have Greyson taken to the Emergency Department.
The ride over to the ER in the ambulance confirmed that G was having trouble getting air into his lungs, possibly due to them not expanding. I thought, could this be an allergic reaction to the Risperdal? That suspicion was ruled-out once arriving at the ER and G’s bloodwork showed an elevated WBC count. He also was tested for an array of respiratory viruses, which came back as positive for the virus that causes croup. Until his difficulty breathing and his coughing in the crib from the seizure, Greyson showed zero signs of being sick. The hospital provided G with breathing treatments and an IV steroid to open up his lungs. The seizure may have been caused by his lack of oxygen or that the Risperdal caused it (one side effect is that the medicine causes an increase in the seizure threshold, typically resulting in some breakthrough seizures). Finally, G was discharged around 2:30 am and everyone was more than ready to get to bed.
G was pretty out of it in the ER
Pappy came to the ER after work
The alarm clock went off way too soon, at 4:30 am. I decided to stay in bed another hour and chose sleep over straight hair and makeup for my work day. I managed to get to the office and survived the entire day, though I did have to make and take several calls regarding increasing G’s seizure meds, scheduling follow up appointments, etc. Once at home, dinner and bed couldn’t come soon enough. The Martin family settled in and had an early bedtime.
As I write this post (8-9 am on Saturday morning), Greyson is still asleep in his crib. He has never slept past 6:30 am on a Saturday morning and certainly never needs woken up to eat/start the day. Fingers crossed for a calm, low-key weekend and no further seizures or emergency room trips.
Mr. Duke helps save G again- this dog is never leaving us
Now that we have been back from South Carolina for a few days, I finally have a moment to post about our trip, and the days leading up to it.
My family typically schedules our vacations far in advance, which worked out well in this instance, since I needed time to do some research about traveling with an ASD child. Last time we were at the beach, Roslynn was 2 and Greyson was only 11 months old and not walking yet. Now that he is bigger, faster and stronger, I needed to make sure I had everything we would need for our venture south.
After months of googling, following different posts on Pinterest and getting advice from other parents of toddlers and ASD kids, I felt confident I would have everything set for the trip. We were leaving very early on Friday, June 21st, so I had a large list of things to get done beforehand, such as:
Taking Greyson to Baltimore for a med increase
Refilling all of Greyson’s meds, so we were covered for vacation
Work as many hours as possible into 3.5 days
Prep the automatic feeders/watering devices for Carlie
Prep the house for us being away for 9 days
On Wednesday, June 19, we had squeezed ourselves into an emergency appointment with Dr. Comi down in Baltimore for Greyson’s recent seizure activity. After the office calling three times to change the appointment on us, we managed to get down there and discuss the seizures with her before we left for vacation. After describing (and Derek role playing) the seizures, Dr. Comi agreed that it would be in our best interest to:
Catch a seizure on video
Increase G’s meds over the next two weeks
Contact JHU to get a skin biopsy with Dr. Cohen, to look for the second variant of the STAMBP gene
With all of the recommendations and increased meds, I felt that we would be okay to go to SC without any issues.
We left on Friday morning around 5 am. Luckily both kiddos were still drowsy, so we were able to drive for awhile without any crying/screaming. Once we hit Virginia, that all changed. We had G crying and trying to escape from the car seat and Roz upset that she wasn’t watching every movie that she wanted to watch. My family decided to stop at a restaurant for lunch, mid-state Virginia. G was already pretty fed up with the car and being confined to one area, that he was having a tantrum before we got inside.
The hostess informed us that it would be about a 20-30 min wait, so Derek and my sister took G outside to walk/run around until it was time to be seated. Roz and I stayed inside and wandered around the crowded “gift shop” type store that all Cracker Barrels feature. I managed to avoid having to buy Roz any toys or candy from the shop, so I was hopeful for a quiet(ish) meal.
Because there were 14 of us, we were placed at a long table in the rear of the restaurant, where 6 other tables were also occupied. Immediately upon placing G in the highchair, G lost it. He began screaming, crying, hitting, biting and headbanging at the table. I am still easily upset and embarrassed when it comes to tantrums and behaviors in public, that I was completely mortified that he was “ruining” other patron’s meals by his fit. Derek and my sister Sarah took G out of the dining area and began to walk him around to settle a bit. Once our meals were disbursed, they rejoined us to eat. Unfortunately, it was past the point of no return for Greyson. He refused to eat, was throwing things and hitting Derek and my mother; who were sitting next to him.
In the midst of my embarrassment, I did not realize that 4 of the 6 other tables had already been moved to another table, or took their food to go. Only after the waitress attempted to calm Greyson with french fries and ketchup, did I notice the empty section of the restaurant around us. I felt tears coming to my eyes as my parents reassured me that people are ignorant when it comes to special needs children and that G was fine. The worst of all was a table filled with 6 or 7 elderly patrons, who made a scene as they requested their table be moved immediately away from the section we were in. Despite the waitress’ attempt to make us feel comfortable and welcomed, I came to the conclusion that there must be absolutely no autistic people in Virginia.
Once lunch as over, we quickly left the restaurant and packed back into the car and made our was to Smithville, NC, where the hotel we were staying at overnight was located. I was hoping that G would settle down before we checked into the hotel, but he unfortunately didn’t. He screamed, cried, headbanged and was aggressive much of the afternoon/early evening. He also was up repeatedly in the middle of the night, crying, which typically is a sign he’s having seizures while he’s sleeping. We survived the night and left early the next morning, heading for Hilton Head Island (HHI).
So happy he’s on vacation
I prayed that evening for a quiet, fun and relaxing trip and I was relieved to wake up with a happy Greyson, finally. We made it to HHI around 2:00 pm and unloaded the cars. The guys went over to a grocery store on the island, to stock the fridge and coolers with food for the week. Greyson was much more happy running around a big space and I think he liked having a little more freedom than the hotel/car permitted.
We typically have the same routine everyday on vacation: wake up, breakfast, beach, lunch, pool, showers, dinner. All of these events taking place over a 10-12 hour period. Shockingly, I managed to read an entire book on the beach in 3 days. I felt so accomplished and happy that I finally was able to read the murder mystery paperback that sat untouched on my bookshelf for two long years. It was so wonderful. The days were predictable, following the same routine on Sunday and Monday.
Monday afternoon, Derek and I took G up early to the house because we all were getting burned from the hot SC sun (even with SPF 70+!). I popped into the shower first and almost immediately upon doing so, I hear Derek tell “Greyson is having a seizure!”, from the living room. I jumped out of the shower and grabbed my phone and began to film the seizure to send to Dr. Comi.
Please note that this video may be upsetting to some and I apologize for his bare bum- we need him without a diaper on to administer meds during a seizure.
Even though we increased his anti-seizure meds 5 days earlier, I was still clueless as to what triggered the seizure, and why the medicine wasn’t doing its job. After sending the video to Dr. Comi and backtracking the previous hour or so, we were still puzzled as to what caused this to happen. The next day or so, we decided to keep G inside the house and monitor him because we didn’t want him to have another seizure while we were at the beach and run out of meds.
So, after losing a full day at the beach/pool, our routine proceeded as planned for the remainder of the trip. Derek and I even tossed in a morning over at the Island Playhouse, which is an indoor bounce house playground and rock/rope climbing walls. The kids loved it! I swear G didn’t come out of away from the bounce houses until Derek went in and physically carried him out to leave. It was a highlight from the trip, and an awesome memory we made as a family.
Roz having a blast in the pirate bounce house
G in the large bounce house
As much as vacation was enjoyable and fun, I was glad to get back home to normalcy, structure and our first babies. Of course, now I’m ready to go back again !
Remember when you were a kid and your school closed for a snow day, before going to bed? Not only was this instant bliss that no alarm was set, but you could sleep peacefully without worrying about school. The night before a school snow day was always my favorite. It was also the best time to go sledding- in the dark, when the night sky was lit from the clouds, and the snow reflecting off the ground gave the appearance of a blanket of white. The sound of silence with a faint sound of snowflakes hitting my jacket as I stood outside, was the absolute best.
I often find myself having this peaceful feeling early in the morning each day. People always ask why I get up so early: between 4-4:30 AM daily. I soak in the calmness early in the morning and while the rest of the house sleeps, I can take a hot shower in silence. The best.
This week however, whenever I have these quiet moments, the lack of noise is excruciating. I am panicked and frequently checking the “Nanny Cam”, to make sure that Greyson is okay (and breathing). The seizure two weeks ago really threw me off balance, but the two additional Emergency Department visits have really topped the cake.
The Nanny Cam- best $20 ever spent at Amazon.com
Saturday, we had a normal day at home. Breakfast, showers (baths for the kids) and we were out the door to run errands and to attend the CADD staff picnic. Roslynn was especially looking forward to the picnic, since I made her aware there would be a bounce house for the kids. After running some errands, we made it to the picnic. Unfortunately, because G was having a tough day, we ended up staying for only about an hour-just long enough to let Roslynn bounce and for Greyson to watch the first half of “Toy Story” in the car, with Derek and the A/C cranked.
After the picnic, we stopped over at my parents house for a quick visit to say hello. Once we were there, Greyson began to act odd. I didn’t think anything of it, especially since he was still thrown off a bit from the previous seizure, a week prior. At both our house and my parents house, Greyson doesn’t have a difficult time with steps. He knows to crawl or hold on tightly when going up, and to go down the steps on his bum. Saturday however, Greyson appeared to have a difficult time with the steps and tumbled down half a flight of steps at my parent’s house.
Greyson is a trooper. He can handle a lot for a little guy, so when he began to cry/scream, I knew something wasn’t quite right. We took the kids home and got dinner ready and right before we sat down to eat, there Greyson is, falling down the entire flight of steps. Because he typically goes up and down those steps several times and hour without falling, I knew something wasn’t right. When Greyson stood up, he looked like he was intoxicated: glassy eyes, no coordination whatsoever and he was really distant and defiant, basically falling over his own feet.
After much internal debating, I ended up calling Dr. Comi’s personal cell phone line. To my surprise, she answered and was willing to chat with me about what was going on. She informed me that it would be best for Derek and I to take him to the ER for some bloodwork, imaging and observation. So at 6:30 pm, Derek and I drop Roslynn off at my parents house (again), with her emergency overnight bag that we compiled after Greyson’s first seizure happened, and high tailed it down to the ER at Lancaster General.
Note to self, do not ever go to an emergency room in a city on a Saturday night. The characters that were at the emergency room were quite interesting. Greyson was throwing a scene because he was tired and did not like to be confined to one small area of the waiting room, so he decided it would be best to scream the whole time. A nurse in the waiting room saw our struggle with Greyson, and brought out a coloring page and some crayons and she began to speak to Greyson as if he were a neurologist-typical child. It still shocks me to know that Emergency Rooms cannot manage (and honestly have no idea) how to interact with non-verbal, autistic children. Though the nurse had good intentions, I knew that Greyson is unable to hold a crayon unless he is eating it, so I told her that she should give the coloring page and crayons to someone that would use them. I think that the other patients began to get annoyed, so they took us back almost instantly after the crayon situation ended.
Once we were back in the room, another staff member came in to begin registration for him. They confirmed his information was the same (since we were there just two weeks prior), and got him set up with an identification bracelet and ordered labs to be drawn. If you have ever been to an emergency room, you know that things do not move very quickly. In the midst of waiting for the phlebotomist to come up and draw his blood, Greyson began to get very anxious and angry that he was confined to a small room. He quickly became aggressive: hitting, pulling hair, smacking, pinching, biting and head butting Derek and I any time he was redirected or picked up. He threw a giant tantrum, which wiped him out. He fell asleep almost at the same time that the lab techs came in to draw blood.
Surprisingly, he slept through everything up until the pinch of the needle piercing his skin. That really pissed him off. Despite their best efforts, neither phlebotomist that attempted the labs, was successful in getting his blood. So we waited again. This time, the veteran of the lab came up to try.
I’m convinced all mothers have a superpower that allows them to know their children’s needs at all times, so I knew this man would not get his sample unless Greyson was sitting upright. I told him this, and he proceeded to give me a yeah right look. So, Derek hopped up into the hospital bed and held Greyson as the man successfully drew blood from Greyson’s arm.Told you so.
Another nurse came in a bit later and collected the small adhesive baggy we placed in his diaper for a urine sample. By now, Greyson was awake and extremely angry. We waited for about another hour or so until we got some preliminary lab results and Dr. Comi was able to review them with the ER docs. She gave us the all-clear to go home and observe him.
Happy he is done getting poked
Flash forward to Monday evening.
After work, Roslynn and I had a tour and meet-and-greet at the preschool she will start at in September. Greyson wasn’t going to make it through that, so Derek took him home. After the tour, Roslynn and I played over at the park across the street and stopped over at my parent’s house, which is about 3 blocks from the school. Almost as soon as I sat down to talk to my dad, Derek called and said Greyson was having another big seizure. Unlike last time, G was still breathing and his convulsions weren’t as severe. After three minutes, Derek administered his emergency seizure meds, which slowed the seizure. He ended up calling 911 because he was unconscious for a bit and kept falling over whenever he attempted to stand up.
I pulled up to the house as the ambulance was driving away, but from the driveway, I could hear Duke barking and whining. For the second time, Duke made it known to Derek that something was wrong with Greyson. I literally could never get rid of this dog now. Haha.
I rushed over the the ER with Greyson’s emergency bag and made some calls to arrange childcare for Roslynn. I got to the hospital and went back to Greyson’s room immediately.
He gets so tired after seizures
Greyson was asleep for some time, until the lab sent staff up to get some samples. The same issues happened as Saturday evening, so the tech ended up pricking his finger and filling up a small tube with the blood from his finger tip. It seemed like hours until the doctor leaveon staff came in. He saved us from an EKG, which would have never happened because G can’t keep the sticky things on to save his life, and he sent us on our way with a follow up neurology appointment with our local neurologist. We will travel to Baltimore on the 19th for a followup and hopefully have his EEG completed before we head off to SC for vacation. Dr. Comi wants him to get an MRI as well, but we won’t get that done until after our trip.
So, all in all, after 3 trips to the hospital, G’s meds were increased and he had some appointments set up to followup with the neurologists. We are still trying to find the trigger for the seizures and the right med/dosage for his anticonvulsants. Hoping we have some more answers by our trip in two weeks. We are also hoping the increase in medicine will help keep things quiet around the Martin house, and really optimistic that we will figure out the trigger of the seizures.
I also want to say how thankful we are for great family, friends and coworkers that have checked in on us and G. It means so much to us that so many people care about us and are so supportive of our journey with Greyson. We couldn’t do this alone, and even the smallest gesture is incredibly helpful for our spirits and overall outlook on this difficult time.
Our day began as all Saturdays do: kids get up at the crack of dawn and Derek and I pry ourselves out of bed, barely functioning. Luckily today, I decided it would be a good morning to clean the carpets and then go outside to plant flowers and do some yard work.
Around 8:00, I began some laundry and steam cleaning the living room carpet. Derek was starting breakfast for the kiddos and it seemed like a typical morning. Until it wasn’t.
I take steam cleaning very seriously, so I was concentrating on making sure I was getting every spot of the rug. Roslynn was on the couch watching The Phantom of the Opera: Live at Royal Albert Hall for the 500th time and Derek was still in the kitchen, starting pancakes for the kids. When I run the vacuum or steam cleaner, Greyson is typically running around and stimming on the sounds of the machine, but this time he wasn’t. I looked around and noticed Duke (the dog we got to train as a service dog but then definitely was too hyper for that) was laying on the dining room floor nudging Greyson with his nose.
Duke typically is not one to be all over the kids, so I thought it was strange that he was so close to G. I took a closer look and noticed that Greyson was face-down on the dining room floor, convulsing and unresponsive. I turned him on his back and noticed he was foaming from his mouth pretty heavily, so I gently rolled him on his side and made sure the area was safe. THANK YOU WELLSPAN FOR FORCING CPR AND FIRST AID TRAINING ON ADMINISTRATIVE STAFF! I knew what to do and felt confident in the situation because of the training I have received through work.
I yelled and got Derek’s attention and told him to call 911 immediately. I noticed that Greyson’s lips, hands and feet were starting to turn blue, so I checked for a pulse and breathing. I found a heartbeat, but no breathing, so I gave him an emergency breath, like I learned in CPR class. After a breath, I checked his chest again and he was still not breathing. I gave another and he finally gasped for air. This was all happening while he was still stiff and convulsing. I administered his emergency seizure medicine, as I was shown how to do when we first were prescribed the medicine in March 2018. After a minute, the convulsions stopped.
Derek gave the 911 operator our address and explained the situation, while I tended to Greyson, who was still not responsive. From the time the seizure started until the ambulance arrived, it was a total of 6 minutes. The longest 6 minutes of our lives.
Once the paramedics came inside, they took over. They checked his vitals and I informed them of the situation and what exactly happened, including a list of his prescriptions. Derek hopped in the ambulance and rode to the emergency room with Greyson. I grabbed his medicine, medical records and threw some shoes on. I had called my parents to let them know what was happening and that I needed them to watch Roslynn so we didn’t have to take her to the ER too.
Greyson woke up in the ambulance as soon as it was turning into the LGH parking lot and was drowsy and annoyed that people were bugging him. They took him back to a room and I met up with them about 15 minutes later.
The next two hours were a whole lot of waiting. They got him some juice, which he was happy with, and he fell back asleep. The doctor came in and informed us that Greyson has a break-through seizure, which is common in children with epileptic brain activity. The type of seizure he specifically had was a Tonic-Clonic Grand meal seizure, which included tense muscles and convulsions. The entire episode lasted about 10 minutes and because of our CPR and First-aid training, we were able to control the situation and get him the help he needed.
Greyson is ok. Derek and I were shaken up, obviously because he has never stopped breathing like that. The next 48-hours will be a lot of monitoring, but he should be back to his normal self once his diazepam wears off.
The most important thing I have learned from this situation, is that first aid and cpr training seems repetitive and boring, but it really can come in handy when you least expect it. I am extremely grateful I work in the medical field, because otherwise, I would have had no idea how to handle this situation.
And for Duke…..he will get an extra large bone tonight after his dinner. I might even let him sleep in my bed tonight, too. 🐶❤️