Seizure #2 and Mommy is so scared!

Well we got our second seizure but it was very scary. Jayen is off of all anti-epileptic medications so I'm not sure if that is the reason this last seizure was so intense. Jayen was unresponsive during the seizure which is somewhat typical, but usually he at least attempts the task we are asking. He also started convulsing. He usually has a tremor in his right hand but this was a stiff arm then a continuous jerking of his head. I was very upset. This was a very intense seizure and really took a lot out of him. He slept most of the day away and just wasn't himself when he was awake. I'm very worried about continuing without any medications. This was just too much for his little body (and my very big body) to handle.
Still waiting to hear what the plan is now. Dr. Frost thought we would do the grid stimulation this afternoon and do surgery tomorrow but Dr. Petronio said not until Wednesday. I'm just not sure what the plan is and I don't think anyone else does at this point either. Hopefully we will know more tomorrow!

Waiting, waiting, and waiting some more.

Got the word today from Dr. Frost, we are waiting for another seizure. The seizure he had yesterday was a "good" seizure and gave great info, but if  we they are to perform a brain resection they need to double check and see another seizure. Dr. Frost also mentioned that Dr. Dunn wasn't concerned about doing the stimulation or mapping. She was confident it wasn't in an area of critical function. I'm a little worried about this. Has his brain possibly made other pathways for functions that are in this area? I really do trust Dr. Dunn and her decisions, but if we don't map then we aren't 100% sure. I like 100%. I want to know for sure that we aren't doing any damage. Dr. Frost also mentioned that if anything happened that we would have to go in and remove the grid but not have the possibility of resection, that we have enough information to go in and do it at a different time. Things really seem to be stacking up nice. Now we just need to wait for that next seizure so we can confirm everything!

Things haven't been stacking up so nicely at home though. Dalan wasn't feeling well, so I arranged a visit to the doctor and he tested positive for strep. That same day my mom started feeling sick. She was throwing up all day and couldn't leave the bed. I was so sad my caretaker had to find a caretaker and I couldn't be there to help anyone! I'm glad they are all feeling a little better. I hope to be home soon guys. I will make it all better!!

Allejulia!

After fourteen days we finally had a seizure! This was such a typical seizure for Jayen. Still waiting to hear back from the doctor as to what our next step is. I think we are still waiting to see one more seizure.

Daddy had to shave since he promised to shave when Jayen had a seizure. He was starting to look like Frankie and Mohammad. Our EEG friends with full beards. So glad that is gone!

 

We were able to have a visit from a new friend today too. Ms. Kim from Child Life came in for music therapy. The first time she was here the only thing she could get Jayen to let her play was the Thomas the train song. So the second time we saw her, she brought Jayen a train whistle so Jayen could help her sing. This was the first time Jayen let her play more than two songs. He kept telling her more and flashing a little smerk.

 

These little visits are what help us get through the days!



I.V. #5 (Sung to the toon of Mambo #5)

Ok, Obviously I have been in this hospital for far too long if I'm making up new versions of songs to go with our I.V.'s. We have found Jayen's weak spot. He is absolutely terrified of I.V.'s. He left the O.R. with two, they fell out. We put another one in, it fell out. We put another one in, when it was time to come out he was so upset and wasn't letting anyone come close to him. He is in so much distress when they come close to his arm. So we decided to refuse another one. I'm sure we will be persuaded by the doctors in the morning, but I wasn't going to hold Jayen down again so they could put a 5th one in. Hate how he looks at me when I have to hold him so someone can hurt him. I promise I don't want to Jayen! I hope some day he will realize why we did all of this!

Still no seizure! Hurry up and wait a little more! Hoping to be out of here in at least 6 months!

Day 144, still stranded on the island.

Well obviously it is not day 144 and we are not stranded on a deserted island, but it sure feels like we are in the middle of no where and have been here for a long time. We are actually on day 12 and still no seizures. Today was a weird day for him. He was very irratible and moody. Although he was difficult to deal with, I'm very excited because we have noticed on days he is crabby the next day is typically a seizure. LET'S HOPE THAT IS THE CASE!!!! I don't know how much longer we will be able to handle this. Jayen has given up on his walks again. He cries and hits the enitre time he is walking and we usually have to stop after 2 or 3 rounds instead of the 10 we were previously getting. Spirits are dwindling fast. I think one seizure would help us all feel a little closer to this finish line.
I'm trying to also keep in the back of my mind that this is all still just another hurdle to get to the resection surgery. If they can't pinpoint where the seizures originate or it is located near critical functions then the resection will be unlikely. We still have many hurdles ahead of us. But as I told a friend today, We are blessed to have Jayen in our lives. If this is the price we have to pay, then it is worth it!

Going stir crazy!

Once again, another morning without a seizure and another day of waiting until the next morning. I really thought the walls were going to cave in on us today. I'm so thankful for the nurses around here. We have truly had some amazing ones! We were also given the chance to talk to the nurse care manager today. It was nice to just share our "side of the story". I really don't want to hurt anyone but just had to ask for the other nurse to not come back. The manager was very nice and listened. I think I am finally able to put it all behind and see how the rest of this stay at the hospital goes. There have been so many people who I believe truly love and care for Jayen. Tonight we had a nurse that we trusted enough that she kicked us out of the room. We know that Jayen and Tina had more fun than we could have with Jayen. They playdoh in the bed might have been a clue. When we returned, Jayen and Tina were still playing. He had the biggest smile on his face. They had bonded and were sharing secrets. She was truly a blessing for all of us. I know we needed to get away as much as Jayen needed us out of his face. 

When we were gone, the charge nurse received a call from the doctor. He was reading Jayen's EEG from home and started noticing some activity. Instead of going down on more meds like he planned, he wanted us to continue what we were doing last night and just wait. We are all hoping that tomorrow is the day for seizure one!

A little slice of Jayen!

Kind of like a little slice of heaven, we got a little slice of Jayen back today. There were a few giggles and a few ornery moments. He just had a little pep in his step today. So much so, that when he went for one of his walks he was walking so fast he lost control of his feet and almost nose dived into the floor. I think we scared the shit out of Paris our nurse! She made us stop walking after that one.
I'm so happy to have Jayen back, but a little nervous that this is going to mean a little chaos will be showing up soon and it will be much harder to keep him occupied. We are already running out of toys to keep him busy. Our two suitcases of toys have nothing on his two minute attention span. No seizure yet. Praying we get some soon. I'm 99% sure they are going to push back the next surgery. The doctor on this week told us today that he wants to see at least 2 to 3 seizures. At one seizure a week, that is 2 or 3 more weeks before we even get to have the second surgery then another week of recovery. I don't know what we are going to do. Hope everyone is willing to keep the kids a little longer! Hope Matt is able to stay up here and help me. He has been invaluable. I couldn't do it without him. Hope we get what we need, but in the quickest time possible.

Eventful weekend!

We had some amazing highs and some amazing lows this weekend. After asking for a new nurse the other night, I feel like we now are on some kind of black list. I'm sure it is just me, but I hate the feeling I now have. We have gone above and beyond what most parents do on this unit, we have seen parents drop kids off and leave, but I still feel like we are now shunned. Hopefully tomorrow will bring the weekday staff and a change in attitudes.
We were so lucky to have had some visitors!!!! In all the time we have been to the hospital in Minnesota, we have never had anyone visit. Grandma, Grandpa, and Allissa Kuchta came up for a quick visit. It was a nice relief to have their help. I hope I didn't scare them. They were able to be in the room for one of Jayen's dressing changes. I said to Matt after the first time we saw it, "It's just not something you can ever un-see." I loved having them there. Grandpa was able to get a few smiles out of Jayen and keep him entertained. They even kicked us out of the room for a little bit and fed him so we could eat alone. I wish they could have stayed longer!
We got a little spunk out of him this morning. He really seemed like Jayen again for a little bit. It didn't last long though. He was quickly back to picking his fingernails. We are thinking this is just an anxiety reflex and hoping it goes away.
Grandma Hochstein was able to stop by for a little bit too. She was in town and made a trip over to the hospital. Jayen showed her his hospital attitude. He wasn't very hospitable!
Later in the evening, we were able to see a helicopter land and take off. Jayen was so excited. I hadn't seen him smile or talk that much since we have been here. His eyes light up!!!! We were able to convince him, even after the helicopter took off, that if we walked to the other end of the hospital we would be able to see it out of the window. This worked three times and helped us get the longest walk in for Jayen. He has been so upset every time we try to go for walks. This was such a pleasant surprise to get him to walk almost a mile!
We are hoping and praying that tomorrow brings a good seizure. Dr. Arquilo is still hopeful that if we get one in the morning that we could still do surgery in the afternoon. We'll see about that! Once again, praying for seizures so we can pray for them to never return!!!!

Not such a happy Valentine's Day

Today was a very horrible no good very bad day! Once again, Jayen was a road side attraction. Jayen is assigned a one on one nurse, but I feel like his one on one is too busy with another one on one. Our nurses have been training other nurses and are sometimes too busy training to actually nurse. Tonight was probably the worst! At the evening shift change, our nurse didn't even introduce herself or talk to Jayen or us. The nurse who was training was very nice and started playing with Jayen when the trainer left the room, which I'm swore she wasn't supposed to do. She was laughing with him and played ping pong with him for over an hour. Since she was only training though, she was gone after 4 hours and we had another new trainee with our not so welcoming trainer. I'm so horribly upset with her lack of compassion and caring attitude towards Jayen. I really felt like she was more worried about when she got her break and making sure she met her quota for the day then taking care of my son who just had brain surgery. Mommy and daddy both left the room crying tonight. I don't know the last time I saw daddy cry. Really breaks my heart.

I'm hoping the nurse manager will be here over the weekend so I can ask that the training hold off for a little bit and care for Jayen is the primary concern. We don't understand why we have had to call so many people out on their own rules. They were clearly told to us and we are following them for our son's safety, but that apparently isn't everyone's concern.

 







Simulation over and real life begins

Two days of pretending couldn't have prepared me for what I was going to experience today. Day 2 post operation. Jayen has begun swelling on the right side of his face. He doesn't really want to get out of bed much at all. Which is a sigh of relief, but worries me too. Jayen went from playing basketball for two days straight to wanting to sit and color for hours on end. BUT only with the black crayon. He was very obsessive about it. He was the only one allowed to use it. He would often put it down then pick it immediately back up. When he wasn't coloring, he was obsessive about picking his nose. There was never anything he got out of the picking extravaganza but he continued for hours on end until mommy put a stop to it because he was chaffing the side of his nose.



 



 



We had our first dressing change today too. There was so much I wish I could forget from that event. The hospital just underwent a renovation and the epilepsy unit moved to its current location. With this moves comes a lot of changes. Not only for us, but for the hospital staff as well. Jayen is the first patient with grids in over a year. (I didn't know that coming into this, in fact I was told we couldn't get in any earlier because there were others in front of us.) Since he is the first in the new unit, he has been the guinea pig for the new employees. Jayen always seems to have a crowd watching every time we do something but I don't feel like everyone is there to take care of him and watch over him. We have had some AMAZING nurses that I feel were sent to us for a reason. Zaundra who has never met, but has to be a twin to my best friend Renee Loftus, was exactly what we needed the first day after surgery. She looked like Renee, talked like Renee, joked like Renee, and loved Jayen like Renee. I really do think she was sent to us to help us get through that first night. We were able to get through the second night, after asking for a nursing change, with the help of Dana. She was even there for us when Jayen woke up in the middle of the night screaming. We narrowed it down to him holding his bladder and bowels for too long. She so kindly gave him a suppository and made him laugh and smile through all the lovely sounds his booty was making while his tummy was feeling better. Jayen peed so much I don't think she was able to put all of it in the collection to measure it out. We will get through this, but it will surely require a lot of tears!

In recovery

Jayen just got out of surgery and is headed to the recovery room. We have not seen him yet. The doctor was very impressed with the surgery. She said it could not have gone any better. They were able to see the abnormality and place the grids appropriately. Even said it is in a good spot as far as proximity to critical functions. The prayers are doing wonders right now. Please continue to pray for Jayen on this journey.

In Minnesota for Nebraska neurosurgeons

Just found out both the neurosurgeons are from Nebraska.  Dr. Dunn lived in Bellevue most of her childhood, her grandmother worked at stratcom. Then when we met Dr. Meysam we found out he was born in Lincoln.  I'm sure that is why surgery went so well!

Are we the crazy parents?

Really starting to worry if we are making the right choice. After this second, we will no longer be able to say that Jayen has never had surgery. This is a huge life changing decision.

This is all for a better life for him!

 

Goodbye Daddy!

Goodbye Mommy!

Mommy got to take Jayen back to the O.R. and help get him to sleep. I vetoed dad and said I win! Maybe I should have let him go. I think Jayen was made at me when he woke up because I was the one who helped put him to sleep.

 

How many parents come back to the room to sanitize toys and remove all the batteries before their child gets out of surgery? Doing what we can.

Last night!

Last night before surgery. Please help us pray it all goes well.

Prayers please!

Ok, prayers are needed. Jayen is going to do a grid simulation here in just a few minutes. He is going to have to practice sitting in his bed with little movement. Yeah freaking right. If he can't tolerate it, then they will have to postpone surgery until he is able to sit still. That will be freaking NEVER. Have these people every met my child?

Love being on the Children's side!

On the old epilepsy unit we were on the United side of the hospital, but the new unit is on the Children's side. There are a few things I'm not happy about over here, but a few I'm over joyed with. The child centered activities are exciting for Jayen. On the way to our room, there were large stars on the wall. When they were touched they would make an animal noise. Jayen was so intrigued. He touched every single one! That's just not something they have on the adult side.

 Today before Jayen started all his testing, we were able to check out the brand new child life zone. The zone was a project from the Teamates for kids program sponsored by Tory Aikmen and Garth Brooks. They work together with local sports teams to develop these rooms for patients.

We made our mark on the place. Daddy put it up high so hopefully it will be there for a long time!

Exactly the reason why we are here. We had a talk with him last night that his seizures had to wait until Wednesday. Apparently they didn't listen.

No fun for Jayen!

Made it to the hotel in time for Jayen to swim and enjoy it before he is stuck in the hospital for the rest of February only to find out the pool is under renovation and there isn't another hotel open in a 10 mile radius because of a Justin Timberlake concert. AHHHHHHHHHH so mad!

The best family ever!

I can't believe it. Look what my family did. They made shirts for all the adults in my family that say Jayen on the front, in our tattoo design, and Hope Love Cure on the back. They also made pins for all the family. So overwhelmed with emotions. I love then so much!

The most amazing family and friends! So truly blessed!!

Not much is taking my mind off of the upcoming surgery. I'm so scared and nervous! But I have the BEST family and friends ever. They are sure making things a little easier. I'm so humbled at everything they are doing for our family.
On Thursday we stopped by PTC to tell them goodbye and good luck on the new location. They are moving down the street and we are so sad we won't be there for the opening. We wanted to give them a gift to help with all the last minute surprises. We were told Amazon was the place they turn to the most, so we got them an Amazon gift card! And once again, they got us a gift basket of things to help Jayen in the hospital. For some reason this mommy forgot the camera that day. Gasp, I know!!!!
Today was Dalan's basketball game and Aunt Theresa came over to watch the little ones so that mommy and daddy could spend a little time with Dalan before we leave. He had an amazing game! I was sitting with Nikki Dorn during the game and she was sad that Jayen wasn't there. Apparently Nikki and Mark have been waiting for Jayen to come to one of the games again. They got an official uniform for Jayen to be part of the team. How amazing! I'm so overwhelmed at this gesture. How amazing to include Jayen. He is going to be so happy! I can't wait to get back from the hospital so he can wear it to the last game. Hope we don't have to stay any longer than planned.
Shortly after we got home, I got a text message saying check your porch when you get a chance. My response after openeing the door was I'm going to kick your butt! Shelly Gillen and her family have been my saving grace for almost 4 years now. I really don't know where I would be without them. They have been through this Infantile Spasms journey with their son Will and know so much more than I do. I really do call her when I need someone to pick me up off the floor. I can't believe they left this on our doorstep. There were things for Brilyn, Dalan, and Jayen.
My family is humbled and overwhelmed by the generosity and support from our family and friends. Please know we can never thank you all enough. I know that you are all praying for us and that is the best gift I could ever ask for. God Bless you all!

You make my heart smile!

Dalan was trying to get ready for school when Jayen had his seizure. Jayen kept reaching for Dalan. He knelt down beside him and they both reached their hands out at the same time. It was so beautiful!

Let the quarantine begin!

Renee can you teach me your ways. I know you are one CLEAN lady! Somehow she can keep one twin from getting the bug from the other. I'm in awe of her cleaning magic!

 

This is the sign I placed on our front door. Hope it gets the point across. I am going to try my best to keep Jayen from getting sick this next week, but this is going to be one giant feat! Everyone has been warned that they will be washing their hands 1000 times a day, changing their clothes and showering as soon as they get home. Praying that he doesn't catch anything in the next week. We have worked so hard to get to this place that I can't imagine having to cancel it. Praying for health for everyone!