The simplest things are the hardest

Hello all, 

I apologize for taking so long between blog posts, however I have struggled to put the words down on paper what exactly I am feeling. Physically I continue to progress extremely well. Each day I continue to feel more and more like my old self. 

On Thursday, I saw my Neurosurgeon for a post op follow up and he said I am doing GREAT!  He checked out my scar and said everything was healing well. He even smiled and joked. He said I am allowed to do anything physical as long as I listen to my body and not push myself too hard. I still need to not be alone in certain situations because I am still at risk for seizures. So no dangerous adventures on my own just yet!

I am extremely grateful for the amazing doctors I was blessed to work with and the job they performed to allow me to have such a successful surgery without infections, set backs, or complications. I cannot put into words how thankful I am that my surgery was so successful so many different aspects could have gone wrong! On the other hand, I struggle daily with the lack of freedom any other 25 years old would have that I don’t!

As I have said before, I am an extremely self sufficient person and will go the extra mile to do something alone before asking anyone for help. Now, I know this can be an excellent quality, but can also be so tough and hindering when all I need is just a little help. 

I am so very lucky to only have the complaint of lack of freedom and not being able to drive. I have been so so fortunate to be able to still live at home and have been so fortunate to have had my sisters come home to help out and my parents helping with everything I need and needed without me even asking. I would not have been able to overcome this detour without them and I truly cannot thank all of them enough!
Luckily, I was able to get back to work for the past two weeks and I felt at peace once again by the pool and helping others in the sport I love. The ability to teach, set goals, and help others to achieve their goals is one of the most rewarding things ever and that’s what I love about coaching. At the end of each season all of my swimmers find success because with either a good or bad swim we can always find the positives. In recognizing these positives, we can find what we need to be better in order to achieve their goals This mindset is so easy to teach to others, however I have really struggled putting this into my own daily routine. 

I want to thank absolutely everyone who has reached out to me during this time. My family was the immediate help I needed, but the support of friends and loved ones has helped just as much and at times has turned a terrible day right around. On my worst days, I struggle to remember that I am alive and am so grateful for what I have and what I have been given and all that I have worked for. I believe all my hard work and dedication has helped to overcome this huge barrier in my life with so many losses in such a short period of time. 

I truly vow to continue this positivity through my life and to continue to reach out to others to see how they are doing. I feel everyone is so busy working hard and making a living that we cannot sit down and check on others. Although, I believe it would make a world of a difference if we could reach out and remind others they have someone who cares about them even on the regular boring days. I plan to continue my blog every few weeks just to put out how I am doing and to possibly enlighten someone else who may be going through a challenge as well. 

Thank you to everyone who has followed along on my journey and my blog. This has helped me so much more than I initially thought and it is such a relieving feeling to express some of my thoughts on how I am feeling and how much the other people have helped me along the way. 
Please look out for other blog posts along the way!

Love, 

Jonathan

Living in day-tight compartments 

Hello Everyone!! 

It is great to be able to be back writing my blog myself after a long hiatus after my surgery and the beginning of my recovery. I first want to thank everyone for all of the support and positive thoughts. When I read the texts or comments I feel encouraged! The love and support I have felt has helped tremendously. Through my surgery and recovery I believe with the help of my family, friends, and the positive thoughts of others my diagnosis so far has been much better than first expected. Although, recovery has been extremely tough and not what I expected at all. I am a healthy young man. I exercise and live a healthy lifestyle. Who knew brain surgery would kick my butt physically and emotionally. 

I have been physically feeling better and better with each day aside from the occasional bad day here and there with a headache or being extremely tired. Those are to be expected and are fairly easy to remedy with some medicine and a little extra sleep. The incision spot on my head and scar is healing very nicely and extremely quick. I am just now waiting for my hair to grow back as I feel like I have hair loss. 

On the other hand, the mental aspects of recovery has been very hard. As I continue to feel better I want to be able to drive, I want to be able to continue the aspects of my life that I love outside the confines of my home, and believe it or not I actually miss working! I feel my life has stopped and been put on pause, Like someone has just placed my life on a freeze while everyone else’s passes me by. This aspect has been extremely hard for me to grasp because normally I am a very active person. As I love to swim, hike, walk my dog and just have fun!

I’m an extremely independent person, so the dependence on others for transportation and providing needs (food in the house or anything else I can’t get for myself) or the constant check ups to ensure I’m alright by my mom, sister, and step dad with any bump, cough, or clearing of my throat are getting tough to handle. Don’t get me wrong I greatly appreciate all their concern and totally understand why they do, but it can seriously be so annoying when to me I feel fine! 

This leads me back to the questions of why me, or what did I do wrong to deserve this? Which in turn can be depressing and turn a positive mood into a negative mood. Ultimately, these feelings are inevitable, but I believe I have been managing them extremely well through positive thinking and my therapist. Not to be cliche, but “what doesn’t kill you will make you stronger”! And eventually as I work through these feelings with the help of my support system I will become a stronger and more empathetic individual. 

With a positive mindset anyone is capable of changing any outcome and overcoming extremely tough obstacles one had never thought possible! The encouragement from others, the text messages to check how I’m doing, the Facebook messages, donations and the personal visits has helped me so much through this journey and has allowed me to keep a positive mindset through my lowest days. 

I cannot thank everyone enough for following my journey, donating, or sending good thoughts to my family and I! This has been tough (to say the least), but we have taken it on and I believe we are coming into the home stretch. I have been seizure free for three weeks now and I am hoping to continue this stretch. I plan to update my blog weekly and keep the positivity alive! 

I truly believe we should continue the love and support with or without a tragedy, medical condition, birthday, or anniversary. Positivity and love, touching base with a friend or just saying hello should happen every single day! 

Thank you so much to everyone following along! Please continue following as I will have another blog post next week! #outtanowhere24 

“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” -Jimmy Dean 

https://www.gofundme.com/jonathanhallsjourney

Love, 

Jonathan

Recovery…

This is day 19 of recovery… While it seems that my physical recovery from surgery has been going great, I have been struggling with all the parts that they neglect to educate you on for after surgery. The ups, the downs and the set backs. I haven’t written since surgery because, while I am recuperating quite well physically my family and I have been through some tough times over the past few weeks.

Because I am struggling with writing, I asked my mom to fill you guys in…

I came home from the hospital on June 23, earlier than expected since I had had a seizure during surgery. So that is good right? That Friday was eventful, as we drove home I was super nauseated, which makes me tired so basically I took a nap when we got home around 4pm. I have to sleep with my head propped up until I see the neurosurgeon in 6 weeks, so the first night of sleep was a little rough.

The next day seemed great. My grandparents came to visit me at my house. Nice surprise, however I have this dog Radar (he is a little protective) so we put him outside and he kept barking at my grandparents. My mom went to calm him down and get him to lay down and be quiet. The next thing I know Radar had bit my mom on the arm. I felt helpless, responsible, sorry and I couldn’t help. I had just gotten out of the hospital. We had tried to work with him in the past, but this wasn’t his first bite. My step-dad Steve took my mom to the ER for stitches and antibiotics. Needless to say I was stressed out! I called the lady that I adopted Radar from and she said he had to be put down. His protective nature and his anxiety to keep me protected had become a danger to my family. My mom and Steve came home and I was happy to see she was alright. Because of my surgery and how Radar was acting we did not let him sleep in my room that night.

I was watching TV with my younger sister Whitney and suddenly I couldn’t get my words out. She thought I was joking, but at some point I started to have a seizure. She called for my mom and the next thing I know I am waking up to a room full of Fire Fighters and Paramedics! Joe who is also our neighbor says to me when I started waking up, so this is why you haven’t been walking your dog??? He laughs! My Mom knew the other Paramedics as well!

So off we went again to Los Robles because they weren’t sure they wanted to transport me to Kaiser WH due to the distance. In the ER at Los Robles, I had another CT scan of my head to determine if anything was different since surgery. The ER doctor talked to the Neurosurgeon at Kaiser Sunset and they determined because I had another seizure I needed monitoring and adjustment of my anti-seizure medication.

My mom came with me in the ambulance to Kaiser Sunset. We spent the night in the ICU. My step-dad Steve went home to take care of Radar and to check on my sisters. Whitney was pretty shaken up, she had never seen a seizure before and I am told mine are pretty impressive!! LOL

The next day Steve took Radar to the Vet to have him put to sleep. I was sad. I had put so much effort into him. He was a very loving and smart dog! It is just unfortunate that I did not get him from a puppy. He was my partner for just a short 9 months, but I loved him! I am so thankful that Steve was able to take him because I am not sure that I could have done it. Second hardest decision I have had to make in my life. Brain surgery was the first!

I stayed another night in the ICU to be monitored and adjust my medications. The next day my neurosurgeon came in and said I could go home! I was never so happy!!! My mom and sisters came to pick me up and take me home again.

That night I slept well in my bed, the reality began to sink in, I had lost my dog and I had another seizure, which means another 3 months of no driving and being dependent on others. Not to mention, my mom has me on constant watch now!!! Every time I sneeze, she say “everything okay?” I get it, but it can be annoying!!! : /

While my recovery had been uneventful, I am reminding myself everyday to stay positive. I do believe that is the key in my great physical recovery. I am now trying to focus on getting plenty of sleep, eating well, and staying hydrated in this heat!

Last week I had a follow up with my neurologist and she gave me great insight to preventing further seizures by remaining stress free and staying positive. Each week I progress a little more. I am hoping to soon be back on the pool deck coaching my athletes.

My family and I are taking one day at a time. Staying positive and we are all so very thankful for the love, prayers, thoughts and support!

https://www.gofundme.com/jonathanhallsjourney

Love,

Jonathan and family (written on behave of)

IMG_1289

 

Day one of Recovery…

Today was a very eventful day. Started off by going to MRI around 1am then returning to my ICU Bed. I slept on and off during the night. My Mom and my sisters came to visit around 9am. I got my arterial line out and THAT FOLEY CATHETER!!! I had been asking to have it removed every 15 minutes for the past 2-3 hours. Time seems to stand still here. Occupational therapist came in and evaluated my fine motor skills. Could I brush my teeth, touch my fingers, wash my face and I sat in a chair. I slept for a little bit after that then Physical therapist came in and we took a walk. I past both with flying colors!!! 

My surgeon says I am progressing quite well and I may go home by Friday if I don’t have any seizures!!! 😍

Most of the day, I visit with my family between asking for pain meds, dosing off, and getting up to go to the bathroom!!! 

I ate a regular meal today for dinner and got a Sprite for the fam. 

I am moving to the regular Neuro floor soon. Where I am hoping to sleep most of the night 🤞🏻

I am so very thankful for all the love and support provided to me and my family!!! Your well wishes, prayers and positive vibes have help me through this incredibly difficult journey so far!!!

Love,

Jonathan and family (written on behalf of )

Www.gofundme.com/jonathanhallsjourney

Surgery is Over!!!

Jonathan came out of surgery and went to Neuro ICU. The day was long for everyone. He was taken into preop at 1000 and was bumped for an emergency surgery. He finally went into OR at 1600. After waiting a long 6 hours, the surgeon came out and said in fact it was a Cavernous Malformation!!!  Once surgery was over and he was in ICU, Steve and I snuck in for a few minutes and we asked him if he knew me and he said “ya your Mom!” And when asked steve’s name he said “Steve”.  Never so happy to hear this young man say Mom!!! 

We will know more info tomorrow as he begins a long journey to recovery!!!

Love,

Cyndi (Mom) on behalf of Jonathan

Surgery Update 4pm

Jonathan just rolled into OR!!! His surgery was postponed due to an emergency surgery, but he was a trooper!!! Now he is off to the best sleep in months!!!

Keep following his journey!!!

Today is the Day!!!

Well today is the day!!! 

As it has grown closer to this date, I have become increasingly anxious… Lots of questions have creeped into my brain. Will the surgery go well, what will recovery look like? Will I have pain and how much? Thoughts that are difficult to push out!!! I am so grateful for my family and friends that have stayed so supportive during this time!!! I know at times I may have seemed stressed out or not coping well, but hell I am having BRAIN surgery!!! 

So here I go to have the best sleep I’ve had in months!!! See you on the other side!!!
Once again I am so grateful and thankful to have the opportunity to share through this Blog and all the support I have received through this journey!!! 

http://gofundme.com/jonathanhallsjourney

Follow along through my recovery…

Love,
Jonathan and family

Woah! Here it comes

I am continually surprised and cannot express how greatful I am for all of the love, support, positivity, and good thoughts from everybody! This abundance of support has helped me more than anyone can even know. It has allowed me to keep a positive mindset even on my worst days, best days, and has also kept my mind off the possible complications related to brain surgery. 

Last Friday, I had my last set of appointments before the surgery. The Neurosurgeon first let my mom, sister, and I know about the WADA tests results and that means for surgery and recovery. He started with all positives about the exam and the newest MRI. He let us know that he believed the mass in my brain was 98% not cancerous or a tumor! IN Fact he thinks that it is a Cavernous Malformation. This was amazing news to hear! He gave me the option to not have the surgery and watch it over time with continuous MRI scans along with staying on the anti-seizure medication called Keppra, however I would at some point need surgery anyway. My initial thought was, “No way do I want to have brain surgery let’s just watch it.” But then I would have the continual possibility of seizures, a suspended license, and absolutely no freedom. This thing in my brain doesn’t belong there and with waiting I could run the risk of further complications!

Ultimately, I will be doing the surgery because I do not think there should be any additional objects in my head! With the added information the doctor let us know, we found out that I would indeed be asleep during surgery because of the location of the mass and the need to remove all of it regardless of the involvement of my brain! Now that’s a little ominous! However, I along with my family have decided the best choice for me right now is to move forward with surgery. 

The Brain mass is located towards the outside of my brain making access easier to scoop out without having to go through the actual brain tissue to get to it. This was such a relief! I have a great amount of confidence in my Neurosurgeon’s abilities to do the best job removing this thing! After spending a long day at the Kaiser Sunset Medical Center, all information was given to us, we felt comfortable with our decision and confident in the doctors’ decisions. 

Through this process I have learned so many things about myself and the power of positivity! I believe with a positive mindset anything can be overcome and I hope people can adopt this attitude and belief as well. Thank you so much to everyone who has been following along, reached out, donated, or simply kept my family in your thoughts and prayers. This has done so much to help out my family and I during this difficult time. 

We have made silicone bands in support of my journey and they will be available tomorrow! They will have the word Persevere and #outtanowhere24. Just a little reminder if you persevere through everything life throws at you, you will be undoubtedly successful in all situations! If you are interested in one of the bands for a 5$ donation, please let me or my family know and we will get it to you. 

Thank you again to everyone following and supporting my journey I appreciate it so much and it has made a significant impact on me! We are finally in the home stretch! This positivity and support has been an eye opener for me and I vow to continue this love and support with the good and bad times! 

gofundme.com/jonathanhallsjourney

Love, 

Jonathan 

WADA Test Results 

Hello all! 

I cannot begin to express how much this blog and the abundance of love I have received has significantly changed my outlook on this journey. Every time I see someone’s comment, message, or even just thinking about me it provides me with reassurance that I will soon return to my normal self and life. Please continue to follow along and share my journey with others as the surgery date is fast approaching! 

On Monday June 5th in the early morning I woke up and headed to the hospital to check in for the WADA test and cerebral angiogram. With this being the first procedure since talking with the second Neurosurgeon, I believe I had become extremely worried about what could happen during this test! The night before I began thinking of why was I having to go through all of this, all the possible bad outcomes that could happen during the WADA test, and if I potentially could experience any of these complications. Of course I could… IF NOT then why would they explain it all to me??? However they say the risks of the procedure are “minimal”, but Had allowed them all to creep right into my brain, which by the way, was super scary and not very positive!!! With some redirection of positive thoughts and the much needed help from my parents and friends, I was able to focus on all the good in my life and deflect the negative thoughts and fears allowing me to sleep soundly before the procedure.  
We arrived at the hospital early Monday morning, I then checked in and waited to be admitted into the Intervential Radiology unit. Once I was finally admitted, I was prepped and ready for the procedure. Many different staff members came to my bedside to talk with me about the procedure, but when the Intervential Radiologist began to explain the procedure to me and the slim possibility of getting a stroke from the medicine they use to put my brain to sleep, my eyes widened and I began to worry inside. Although, I knew things were about to start soon and there was no time for negativity and to think about the possible bad outcomes. After the prep and talking with all the doctors, I was wheeled back into a room with tons of different cool tools used to perform the angiogram to obtain images of my brain and arterial vessels to better understand my tumor. This will determine the best course of action for the Neurosurgeons to take in performing my surgery. Along with the cerebral angiogram the WADA test was performed where the Neuro interventional Radiologist puts half of my brain to sleep while I was given some simple tasks to perform. 

After getting the Large catheter started in my groin, which actually was the most painful part of the whole procedure due to the large amount of lidocaine used to numb my groin area, the Nuerologist and Psychologist came into the room and talked with me before starting the WADA portion of the procedure.  They began by asking me simple questions like, “What day is Thanksgiving on?”, and similar questions for me to remember, along with objects, colors, and numbers. Once the Intervential Radiologist put the first dose of medicine into the IV the nuerologist had me count to 10, as I began counting I was only able to get to 5 and couldn’t get the 6, 7, or next numbers out of my mouth. I believe this was due to my speech and language center being mostly located on my left side. After the counting the medicine had worn off for the left side and the psychologist began asking me the same questions to test my memory. Most of the time I had to answer with a guess, but was able to remember many of the questions and objects. The doctors left to take a look at the results and the assisting nurse stayed with me to talk with me about sports and keep my mind off the situation. 
Once the doctors came back, they expressed to me how well I did on the test and we would proceed to the right side. The psychologist began asking me the same types of questions along with showing me different objects. Once the medicine made its way up to my brain this time I was able to count up to 10, but I think I had a harder time remembering some of the objects and questions the doctors asked. After questions the doctors told me that we were done and they began taking the EEG leads off and the Intervential Radiologist took out the IV and closed the incision. Once it was over I began thinking that my language and memory was spread across both parts of my brain. My first thought I jumped to the conclusion that I am most likely having the surgery while awake!! 

After the procedure I was wheeled back to the Intervential Radiology unit and waited for the doctors to come back and talk with me and my parents. The nuerologist told us that I in fact had my language and memory unit spread out on both sides of my brain, and she reassured me that this was a positive thing, even though I most likely will be having an awake surgery. We will know the final decision on Friday when I meet with my neurosurgeons. My initial reaction to hearing this, I began to get a bit scared as to what the awake surgery would entail. On the other hand, we were given some amazing news from the angiogram imaging. The Intervential Radiologist let us know the the tumor was not actively bleeding and did not have any blood vessels going to the tumor. This means the doctors believe it is 90% not cancerous!!! Such a relief to hear this and the Intervential Radiologist was able to tell us he believes it will be a smooth procedure to remove it. 

Even though I may not get the preferred choice of an asleep surgery, it was such a relief to hear the good news about the actual tumor site. I am most definitely scared and worried about the surgery being awake, but I know this is the safest way to ensure the least possible complications. As the surgery gets closer I find myself getting more and more scared and nervous about the recovery and possible complications, but I believe with the power of positivity and all the love and support I will push through this and overcome this hurdle along with any other I may encounter! I hope everyone continues to support me and my family with positive energy because I already believe it has made a difference in this journey so far and determining the tumor does not have any arterial blood flow!

Thank you again to absolutely everyone who has reached out, has thought about my family and I, or has donated to help us all during this journey. My best friend, Paul, mentioned to me about some wristbands he and his sister made for his mom during a procedure she had. We will be putting persevere and the date April 24, 2017 on them because the word “Persevere” has helped me get through these rough times. We will look into getting them made up and hopefully have them available to people who are interested. Please continue to follow along as I will have another blog post next Thursday, along with one on Monday June 19th for the day before my surgery!! 

https://www.gofundme.com/jonathanhallsjourney

Love, 

Jonathan 

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