Hello? Anyone?

When I started my blog, I had big plans: highlight Hydrocephalus and those of us who each have surpassed insurmountable odds. It was a great plan in theory, and maybe it will happen one day, but this warrior is worn out!

I’ll spare you the details of my numerous surgeries and ridiculous amount of Dr. appointments since my last post. Trust me it’s MANY and the outcome the same- more unanswered questions and crazy Hydro. symptoms. If you’re reading this, then I’m sure you’ve found some commonality between us, but here’s my predicament: If I were to tell you how difficult things have gone, would there be dead air? My point is I have an amazing family and good friends, but lately the invites, texts and general friendship musings have almost completely vanished. ¬†A few super close friends continue to try but I’m a consistent flake. I know people have their own lives and things, and maybe I’m jealous/bitter, but how do you forget about someone? I know my condition, as do many chronic illnesses, cause a bunch of people discomfort when interacting with me, but I’m still here!!! I’m tired of the raging battle within, but I haven’t forgotten about you so please don’t give up on me. I am still the same person as before but with more scars and a little more hardware:)

Thanks for letting me vent, virtual friend. I don’t feel alone anymore:) Be well!ūüíô

 

Liam’s Story

Story submitted by Liam’s mother, Yvett:)

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Liam at birth

So where to start….

We did not know about Liam’s Hydrocephalus until week 32 because nothing was showing on ultrasound until that point.When it was discovered, we had to see some more doctors and plan how to go from there. It took just 2 weeks, from that day, until our son was born via c- section.

He was born on March 26, 2015 at 8: 48 AM. He weighed 2490 kg  and was 49 cm tall. His head was very large when he was born. Doctors measured his head to be 42 cm around, which is very large and made him weak.

Since he was 5 weeks premature, his lungs were not working as well as they should so he needed some extra help breathing. He got a shunt placed in when he was just a few hours old which worked well from the start. But since he got a small infection when he was 3 days old and this lungs were not totally developed- he needed to be placed in a respirator with extra oxygen and nitrogen to help boost his lungs. This help was only needed for a few days but he would be needing extra oxygen for 1-2 month after that since he was premature.

Liam was born at Lunds hospital in Skåne, Sweden.  We stayed there for 1.5 weeks until they finally moved us to a hospital just 20 minutes from home. At that time, he was disconnected from everything except his oxygen which he would need a few weeks more.When we had been moved to Helsingborg, we had our own room, and since someone infected him with a harmless bacteria we had to be on lockdown which was a pain since we were not allowed to exit our room. The bacteria was harmless to other children and adults but for a 700 gram baby it could be worse. And since we were still placed in neonatal care just as we were in Lund, but not in ICU. We stayed in Helsingborg for almost 1.5 weeks  and were allowed to go home since he was doing well. Although, he was still on oxygen. But here in Sweden, I could get homecare and even oxygen. So when we got home, we had 14 small tanks of oxygen waiting for us.

At that  point i had never felt more relaxed. To finally be home with my first child felt amazing.  Liam was doing well except for a small wound on his neck where they had to open when placing his shunt. We got some antibiotics for it,but after being home for just 7 days, I noticed that it was still not healed.I convinced myself I was seeing his tube through the wound. Unfortunate  for us all, I was correct. The next day,we were (yet again!) placed in hospital care. Since they did not want to take any chances, they removed Liam’s perfectly working shunt.  We were hospitalized for 7 more days before he got a new shunt placed- this time on the other side of his head. During that 1.5 weeks, his head grew 1 -2 cm more since there was no shunt to help with circulation. The same night they replaced the shunt they had some issues getting Liam to wake up. His blood work was not good. He ended up having a blood transfusion which helped and he also got his feeding tube back for 2 days just so he could get some help.

When we finally got to go home for the 2nd time, we were relieved. Liam was doing well and have been doing so since that day. We have change shunt settings 1 or 2 times after that and now his head is barely growing. Sure, his head is almost as big a a 2 year old’s and much pointier but i think it suits him. He is Mr. Charming and everyone who meets him can’t help but love him!

The past year we have noticed that he has had some major delay in his motor functions. It took him until he was,at least, 6-7 month old before he could hold his head by himself. And it was not until just recently that he learned how to sit alone stably on the floor. I believe he was about 14 month old when he finally learned. Sure he could sit before then but he just didn’t want to. HE wanted to stand up aLl the time- using a table to lean against, etc.

I have heard that many children with Hydro. have had issues with motor function and we also did a CT scan, not long ago,  that showed that he had some delays in the front part of his brain were motor skills are located and also vision. We have also noticed him not seeing as well as a child i his age should, but that is something we are training with eye patch and are also having regular visits to the hospital to check that out. At the moment,we are  waiting for an appointment to do a MRI so we get a clear understanding on how his brain looks and if there is anything wrong.

Liam was also born with  a cardiac murmur on his heart. Nothing serious but also something we are having checked once a year.

Liam’s progress has been going slowly the past month. His eyesight has improved a lot and so has his balance especially sitting. But his balance standing is something totally different. Four months ago he got a different walking-chair from rehab which has helped a lot, and now he can run with it and open everything indoors. But he walks with both feet at the same time and without it he doesn’t  want to take 1 step at a time so we have to show him  the right way of walking and train his balance.  In 3 weeks, we will be swimming with him- 1 day a week for almost 3 month which is awesome because now we can start building his muscles. Sure he is a very strong little boy, but since he is 82 cm tall and weigh about 10kg he doesn’t seem to get a chance to learn to keep his balance since he is growing so fast (he grew 2 cm in 1.5 months).

Liam have had a very traumatic beginning in his life and since he was very ill in the beginning we can’t say he got a chance to be a baby until he was at least 5 month old. From our perspective it feels like he is almost 8-10 month behind in his motor skills. But in some parts of development he is just like anyone else. He wants to be able to sit up by himself and run.

 

Coping Mechanisms

headache

I thought we could all use a laugh regardless of what’s happening in your life. Coping mechanisms like laughing help alleviate some of the stress or tension we face in our daily lives. I tend to have a very sarcastic, morbid sense of humor. ¬†Out of all my coping mechanisms, it is my favorite! What do you do to cope with your chronic illness? Please share.

Rohan’s Story

Editor’s Note: I’m introducing the first Hydro warrior story on this blog. I will now be highlighting other Hydrocephalus patients’ stories. My hope is that we learn and feel comforted by one another in our times of need.

Rohan’s story was submitted by his mother, Heather.

My son’s story all started at my 12 week scan when i was pregnant. There were  some visible signs of Down Syndrome, due to the space in the neck area, so i was referred to my hospital for another more in depth scan and a Amnio to find out if baby had Down Syndrome. Doctors  took the sample and sent it off but we had to wait a few weeks to get the results and at 14 weeks i had another scan.  During this scan we could clearly see a balloon- like shape bouncing around the back of baby’s head, it was like he had grown a new head! The results from the Amnio had come in and cleared HIM of any chromosome errors. So that was a relief, but what exactly was this balloon growth? They were not entirely sure and had to do further tests, but we were told we should start discussing a medical induced termination. Over the next few weeks, I saw a few specialists, had MRIs, 2D and 3D scans, and x rays- all while  going between 2 different hospitals!l Finally, we were told our son had an Encephalocele and the likelihood of his survival were at about 5%. If he did survive, he would most definitely not ever be capable of walking, talking, feeding himself, going to the toilet on his own,and  he would be wheelchair bound and ( pretty much) completely brain dead. Doctors said  terminating the pregnancy would be the most humane thing to do for us and our unborn child.

On our next appointment, to sign the paperwork to induce early labor at 22 weeks, the Dr. explained what would happen. During this whole meeting, our son- inside of my growing belly- was wiggling around and kicking. I sat there blurring out everything around me and started poking at my belly. ¬†With every poke, I I got a kick back from my baby. ¬†Then, it dawned on me….if he is paralyzed how come i can feel him move? He moves all day long. The doctor said it was due to the baby‚Äôs reflexes. I didn’t believe it, not for a second! After having the doctor look at my baby respond to my poking my belly, the doctor said that if I was having second thoughts he could organize meetings with more specialists. So, I ripped the form up and said, ‚ÄúYes, ¬†that’s exactly what i want to do!‚ÄĚ

The next few weeks consisted of weekly hospital visits: seeing ¬†different specialists, having more and more scans/ MRIs ( some weeks I was having 4 scans and 1 MRI in ¬†a week). Every doctor kept giving the same grim outcome.Until the last doctor, Neurosurgeon, Dr. Robert Campbell. He told me that my baby would be just fine. Dr. Campbell said ¬†he would ¬†definitely have issues with gross motor, and we would be lucky if he would ever walk ¬†independently, and he would likely have global delays and would require a lot of work his entire life, but he believed he would ¬†be just fine. We would need to redefine what ‚Äėnormal‚Äô looked like for him. Dr. Campbell explained how he will remove the balloon looking thing, and explained that he may have to place a shunt (more information would be given later if he needed to insert one). ¬†My pregnancy continued, but we agreed that I‚Äôd go only to 36 weeks because I‚Äôm a Type 1 Diabetic and had lost a child previously at 37 weeks.

By 30 weeks i was looking like a Cabbage Patch: my head was pounding and I felt like death!  I was sent to the hospital where I would have my son (which is a 2 hr drive away). Turns out my symptoms were all related to Preeclampsia. I stayed in hospital until my BP was no longer be stable and they booked  my C-section.  On the morning of Feb 26, 2008, 4 hours before my c section,  I went into labor.  I was rushed by medical personnel to the operating room to deliver my son. Rohan arrived at 36 weeks weighing 8 pounds 13 ounces. He was placed on oxygen after birth as the did ultrasounds and MRIs of the sac on his neck. Later he was diagnosed with an Occipital Meningocele, which is a form of Spina Bifida.  Medical personnel  revealed that parts of his brain were deformed, but (yes) he would live a fairly normal life with different therapies monitored by his specialists.

When he was 6 days old, Dr. Campbell removed his “cele” and he bounced back beautifully, except he started to develop fluid on his brain. Which resulted in his having a VP shunt placed 14 days old. This was hard on his body and, his little heart stopped beating 3 times (!) but he came back and kept fighting. When he was 4 weeks old, we finally got to take him home! As days and months followed he got older, and grew, he was delayed with his gross motor: only just learned to sit up on his 1st birthday. At 2 ¬Ĺ years old, he took his very first steps unassisted, and he walked with a walker for about 6 months. Than no longer needed the help! His balance was poor, resembling a drunk swaying about and tripping up, but- by God!- my son was walking on his own!

My son started in a mainstream school in 2012.  Half way through the year, just after losing his best mate to terminal cancer, we got news that his shunt was no longer working, which lead to him having surgery again.This time he had a small infection in the tube and a large amount of pressure on his brain, which caused him to lose sensation on the left side of his face, and weakness in his legs. There was a fair bit of damage done but, likely, with hard physio he would be able to regain his mobility back and feeling back.

Today my son Rohan ¬†is 8 1/2 in grade 3. He loves Star Wars and Pokemon. He loves cars, footy, and soccer. He loves to learn about the world around him and about different countries. He wants to be a builder like his daddy:) He is a kind gentle little boy but can also be a loud naughty brat! But he is my best friend and the reason for living. I’m so proud to be his mum and so proud I went with my gut instinct and refused to sign those papers! ¬†

Feeling perpetually Hungover without the fun of drinking

It’s been a minute since I last wrote according to the blog tracker thing, I hope everyone who reads this blog is well. I am a little over 2 weeks post op from my last surgery and have been having the BEST time (note the sarcasm) trying to figure out if my headaches are positional or not. For all the ups, downs, sideways questions- I have no pattern. I can tell you this: I feel hungover after every night’s rest. Remember when you were newly 21 and you’d go out and get trashed? Maybe some of you didn’t, but I did. Not caring about the consequences of the body aches, dehydrated feeling, the spins that would inevitably follow after a night of drinking. I guess I could say that I did that to myself so I knew there would be a price to pay; however, I can say that these days- I’m 100% sober- and I still wake up tentatively with that feeling of having just been through a rager and not knowing how I’ll feel when I wake up in the morning. Opening my eyes everso slightly in the morning and there is always that question- “How awful am I going to feel?” No matter what my headache decides to do, I’m ready with a glass of water and pain meds to combat the aches, dehydration (which I assume is internal from the shunt draining too much), and pulsating sensation from the pain deep within my brain.

Funny thing is, I don’t miss alcohol at all or my 20s but I miss the explanation for the hangover. Because this constant hangover of my 30s isn’t a reminder of living or fun but is a reminder of not living at all. Here’s to hoping for a better tomorrow:)

P.S. Sorry if the message is a bummer, but I promise that if you stick with reading my blog, things will get better. Chronic illness is a bumpy ride but we all are all warriors and the light will shine again so because it has to.

A reminder with profanity thrown in:)

After weeks of not wanting to get out of bed because my head feels like it weighs a million pounds and my body feels like I’m stuck in quick-sand, I got out today. Thank goodness for small miracles because I’ve been battling the voices in my head that say “You should be doing more!” As a 31 year old who still lives at home with my two very amazing parents, I have felt that I’m falling behind in life. This idea gets compounded with having a chronic illness. I was pondering this very thought a few days ago when I came upon a write-up in the Huffington Post (see URL). I spare you the synopsis of the article and you can read it if you wish, but the take home message to me was:

” You can‚Äôt just conjure up motivation when you don‚Äôt have it. Sometimes you‚Äôre going through something. Sometimes life has happened. Life! Remember life? Yeah, it teaches you things and sometimes makes you go the long way around for your biggest lessons.”

That’s what made today so great. I think when I stopped putting pressure on myself and beat down the little voice inside my head telling me that what I was doing wasn’t enough, I got to enjoy what I did. I hung out with 3 very sweet ladies and 2 wonderful kids and it may have not been for hours but the time spent was genuinely freeing from the constant pain that is present in my daily existence . I know many of us tend to put pressure on ourselves to get out there and persevere, which I think is good; however, when we start beating up on yourselves to be like our well counterparts- it only hurts us more. ¬†Today’s message: Be kind to yourself since you’re body is already fighting against you!

 

Article URL-  http://.huffingtonpost.com/jamie-varon/to-anyone-who-thinks-theyre-falling-behind_b_9190758.html

*Still getting used to WordPress so I’m still figuring out how to insert a link. For now copy and paste link ¬†to your browser!*

My Story

Jessica Agricola, 31 years old, California (photo at bottom)

I was born 2 months¬† prematurely on Nov. 21, 1984. My mother swears her labor was brought on by some bad Chinese food she¬†had sometime before the 3 day ordeal of¬†my ¬†delivery. The MD had hoped to stop my delivery, but being the persistent person I am, after¬†72 hours, I had arrived ¬†weighing a whooping 3 pounds, 5 ounces. I was premature so they¬†took me away promptly¬†to the NICU (Neonatal Intensive Care Unit).¬†One week into my stay in the NICU, the nurses began to notice that I was noticeably lethargic and I was taken for a MRI and, you guessed it, I was diagnosed with Hydrocephalus. I was shunted at¬†1 week and unbeknownst to my parents my Neurosurgeon did not believe I would survive after that initial surgery due to all the CSF that had accumulated and was drowning my¬†brain;¬†HOWEVER,¬† I recovered with no issues and was just a normal, very tiny baby. At¬†1 month old, I was reshunted due to shunt failure¬†and released home with no issues. My mother¬†tells me that I ¬†had a shunt malfunction at 3 months old but it resolved itself (which can I just say how amazing the human brain is)! So, then it was a malfunction at 3 years old which resulted in, you guessed it another surgery, and then a recovery. I consider myself very lucky because I didn’t have any Hydro-related issues/needs until I was 10 years old! I will spare you the details of my losing consciousness in my 5th grade class and the terrifying 1.5 hour in the car with my parents as they rushed me to UCSF because it was faster than waiting for an ambulance. Just know that for all you parents with wonderful children like us, I have seen your fear in my own parents’ eyes and I wish that no one would¬† ever experience that feeling EVER in a MILLION LIFETIMES. So where was I? Right, I’m 10. At 10 I underwent an ETV (Endoscopic Third Ventriculostomy) and it lasted 8 years! Another huge success since it was rare for them to last, at that time, over 5 years so after 8 everyone thought that my Hydrocephalus “cured itself.” Two weeks after my 18th birthday, I had a shunt placement since I was showing symptoms of Hydrocephalus and although I was crushed that I was, in fact, not cured, I figured it was another surgery and then I’d be home. Sadly, it was not that simple. The thing is I had OLD hardware in my brain for so long that it calcified and when my Neurosurgeon took it out everything went smoothly; however, when he placed the new, shiny shunt it caused a brain bleed. The scariest thing in my life was being woken up with your Neurosurgeon saying¬†my name and telling me, repeatedly, to¬†“push on my hands with your feet.” ¬†As I thought I ¬†was complying with his simple instructions it became clear that something was wrong. I was so frustrated that I swore at him and told him that I was doing what he wanted (What the HELL was wrong with HIM?!). It wasn’t until after the MRI that I truly felt despair of being paralyzed on the entire left side of my body. So, as you can imagine, this hospitalization was quite different and all I wanted was to go home. The only thing, or person I should say, was a PA who worked with my Neurosurgeon who kept talking about an inpatient rehabilitation center that could help me “get back to ‘normal.'” All I can remember is seeing RED and thinking “who the hell are you? I’m getting out of here if it takes every last bit of energy that I have. Sometimes, you just meet people who have NO CLUE and really doesn’t seem interested in understanding. Well, this was her. I was bitter then, but now I see her as someone who made me stronger during this time. She said that in order for me to go home, I had to walk up and down a flight of stairs 3 times and all without the use of my entire left side. Again, because I am very persistent and stubborn I DID IT. To my delight and her shock (I think my family was shocked too) I got to go home!!! At home, it was exhausting with the Occupational Therapy and Physical Therapy- relearning how to dress myself, eat with silverware, and be able to walk without smashing in to walls. I was paralyzed from Dec.13, 2002-Feburary 14, 2003 and although I still have residual neurological side effects like my left foot swinging out and a left foot drop when I am physically tired, I fully recovered. As soon as was able to go back to school and resume my normal life, I did. After this major¬†medical event,¬†I had 4¬†uneventful years where I¬†attended community college, went out with friends, and spent time with my family. It¬†¬†seemed like the worst was over and I was going to be okay since I had a wonderful support system of friends and family and nothing could stop me. But like many of us come to realize, we cannot get too comfortable about our situation because you never know when Hydrocephalus would throw you a curveball. I¬† don’t know when exactly I started feeling crummy, but I eventually was referred to Stanford Pain Management and despite the lovely specialists and how hard they tried, I suffered for 4 years debilitating headaches. I was sleeping 16-18 hours a day and with pain I would not wish for anyone to experience. This went on for 4 years, but then I found a miracle. I had a friend tell me about a neurosurgeon who was trying new treatments for chronic headaches with people with Hydrocephalus and we decided as a family that we had to try anything we could to improve my situation. We learned after extensive tests that my ETV was still working and a shunt that I had been overdraining.¬†My shunt was¬†capped off¬†in the same trip and I returned to CA with no shunt and NO headache!¬†What does one do when they don’t have a headache? I had forgotten! I decided to finish up community college (it took me 7 years to complete it with 3 AAs), I transferred and completed my BA from University of California at Davis and then completed my Master’s in Social Work from University of Southern California. I was able to get my dream job as a hospice social worker in my community. During this time, I broke my cardinal rule: I got comfortable and let my guard down. I ended up thinking that Hydrocephalus was not going to ruin all that I was accomplishing. But little did I realize that the dizziness I had been experiencing, periodically, and suddenly experiencing sensorineural hearing loss that practically has be me deaf in my right ear and compromised in my left ear, was really Hydro-related. The ENT at Stanford kept asking if I had been to my Neurosurgeon because “it sounds Hydrocephalus-related” but I kept saying that that could not be possible. Long story short (after 1325 words I’m trying not to bore you), for 4 years I was suffering from increased ICP and I needed a shunt. On Aug. 28,2015. I had a shunt placed but continued to have problems and after having a CT that showed that my one ventricle became entrapped and ballooned severely enough to shift my midline, I had a revision on Oct. 19, 2016. STILL my symptoms continued and I had a lumbar puncture (because¬†scans are no¬†longer showing changes in my ventricles), my neurosurgeon decided I needed a¬†2nd shunt and I had my last surgery on February 26th. I’m afraid more surgeries are looming and that’s my reality at the moment, but I’ll take it in stride because I don’t know any different ūüôā

 

So, I hope you enjoyed my story. I tried to make 31 years an easy read. Please feel free to share your story/something you want share that is Hydro-related with us by emailing me at Jessica.agricola@gmail.com and I will add it to our Hydro-Talk Blog!ME