Butters was diagnosed with Asperger's Syndrome when he was 3.5 then hydrocephalus at 5. Here I talk about the high's, low's, challenges and and all the fun things that happen in between.
The last time I did a full post Alvin was in ICU and I was updating facebook/twitter with updates and pictures as I could.
Alvin met his neuro surgeon around 8am Saturday morning in the ICU. She took a look at him and his overnight stats and said it was time he be moved out of ICU and down to the surgical unit. She wanted to try and get a CT scan of his head but was unsure if it was going to be able to happen on a weekend.
Sleeping in the ICU
Wanting to sit up and play a little on the tablet in the ICU
About an hour later we were on our way down to the regular pediatric surgery floor. Once there he actually wanted to get up and go take a quick walk around the unit then headed back to his room and ate a good breakfast. W and Elliot came to visit shortly after and after a dose of tylenol and some lunch Alvin settled down for a nap and they left. After a good 3 hour nap he got up and was ready to go. He took a quick walk down to the play area to get some ice then back to his room. At this point he started getting really restless. Later that night after he ate dinner the nurse agreed to just do a saline lock on his IV and was allowed to go take a walk down to the first floor. He was even allowed to sleep without it and only had a little bit of tylenol before bed.
In the surgical unit. He was just happy to be allowed to sit up in a chair.
Breakfast time
Good view of his incision
First look at his incision after being unhooked for a little while.
PLay room with puzzles and cars
Sunday morning he was awake around 0430 when they last took vitals. After some time watching cartoons and netflix we went to go walk the halls again. During one of our many laps we ran into his surgeon who said he was ready to go home. The CT scan wasn't going to happen that day and she honestly wasn't concerned due to the way his incision site looked and how well he was eating and drinking. So after all the paperwork was signed and discharge instructions given we were headed home.
Playing Mickey Mouse Club House games on the public computer in the playroom.
Leaving the hospital. As he says every time he leaves "Bye children friends"
The first stop before home though was to the mall. Since his incision was so big and nasty looking we wanted to get him a new hat. So in the Mariner's store he picked out a new hat that he could wear to school. After the Mariner's store we headed over to the Disney store. Seriously I was completely fine with him getting a new car after all he went through.
At home the kids rested and soon Alvin was asking to go play in the sun. We agreed and headed to a small park. The entire time there we were watching him like a hawk but from his actions you could never have known what he just went though. That night though we shaved his head. It was just easier to keep the entire area clean with everything shaved off. He hated it but like a good dad W shaved his too and that seemed to make him feel a little better.
New hair cut
The rest of the week was back to normal. Monday he went to school and had no issues. We went outside to parks during the week and he acted fine while I watched him like a hawk to be sure he didn't do anything too bad. All week we kept a careful watch on his incision and did our best to too it clean and dry at all times. He kept asking to go to gymnastics but wasn't able to due to needing to wait a week.
Playing at home as normal.
5 days post surgery.
Swinging at the park
So what now? Now we go on as normal. He has an incision check in a couple of weeks to be sure things are all healing correctly. Alvin has been in very little pain and only had tylenol a few times for mild discomfort in his head. He then goes back for a followup MRI and meeting with his surgeon in July. This is mainly to check to be sure his cerebral spinal fluid is draining as planned and that there are no other buildups. Also we will be checking the cyst again to see if there were any changes in it.
The other big question is since the pressures in his brain have gone down have we seen anything different. The answer is yes and no. Overall he is still the same kid. He has his social awkwardness and most everything else. The only thing we have seen a slight improvement in is his speech. He is slowly starting to speak a little more clearly and string a few more words together. We are of course thrilled with the progress but are cautiously optomistic as to what else could happen during his recovery period.
So that's about it for now. I'll try and do another post next week after he goes back to gymnastics. Hoping things go well there and I know he will be absolutely thrilled to get back to his favorite activity.
I have another post coming soon about how Alvin is
recovering from surgery but first I need to address something.
I've had many people ask me if Alvin ever had autism at
all after finding out about the underlying condition of hydrocephalus? After
having the surgery could/will he become normal? As in will he gain all of the
motor control and speech of a normal 5 year old?
The answer is in a word, no.
Yes some of the things that can signal hydrocephalus are
also signs of autism. The most noted ones are speech delay, fine motor skills
delay and gross motor skills delay. The symptoms of autism
are much more involved and include social challenges, repetitive behavior,
sleep dysfunction and sensory processing problems to go along with the motor
skill and speech delays. All of these things Alvin has and has had since the
evaluation process began almost 2 years ago.
The hard truth is that if left undiagnosed and untreated the
hydrocephalus could have killed him. We wonder that would we have found out
soon enough had we stayed in AL and gone with the doctors and nurses
recommendations. When would we have even found out and how much damage would
have been done?
The surgery he had
last week saved his life. End of story.
The fact that W and I
knew something wasn’t right and asked for another neurological evaluation at
Seattle Children’s to be sure that the seizures were diagnosed correctly was
the first step. Seizures are common in kids with autism so we had every right
to be sure we had to correct diagnosis and were handling them appropriately.
The staff at Seattle Children’s Hospital is to be commended
though. The recommended the MRI in addition to the EEG to be sure there wasn’t
something else going on. When the neurologist saw the results he did what he
thought was best and sent us to a neurosurgeon for a better evaluation. The
neurosurgery team acted fast in getting him an appointment as soon as possible as
well as the treatment and surgery to avoid damage being caused to his brain or
optic nerves.
The question is now that the pressure has been taken off of
his brain what will happen now? At this point we just don't know. He could gain some
motor and speech skills over the next few months and year but we have no idea.
He will also continue his course of music therapy, special education preschool
and mainstream gymnastics classes. So whatever improvements we may see cannot
just be attributed to the surgery.
Do W and I hope the end result of the surgery helps in some in
other areas of his life, of course we do. But the fact that we still have
Butters here today and we have warded off a potentially deadly condition means
more than any improvements that may come from the surgery. We can and will deal
with the challenges. We are just glad he is still here.
So while I've been all over twitter and facebook about this I figured I would give the rundown of what in the world just happened. The past 72 hours or so have been crazy and while we are out of the woods for the most part now its been a scary ride.
About 3 weeks ago Alvin underwent an MRI and EEG to see if they could determine what if anything was causing his seizures. The procedure went well overall and we were told to just follow up with the neurologist at our scheduled appointment.
So on Wednesday we met with the neurologist. The EEG showed nothing much, but the MRI showed something that as he said was concerning, but not too bad. It showed that his left, right and 4 ventricles in his brain were enlarged and that he had a cyst in his brain. We were told that we would need to followup with the neurosurgon and it would probably take about 3 weeks. He wasn't overlly concerned so we didn't worry. I called the same day and they said they would be contacting me the next day to get his appointment scheduled. We in turn told all of our family what we knew, but not to worry.
On Thursday I was schedule for a leadership training class. I knew to expect a phone call but wasn't overally concerned. The call I got at about 9:30 though was not what I expected. The nurse I spoke to said they wanted to see him much sooner than later. She then told me the MRI scans showed hydrocephalus. Now I'm in shock. I wasn't too terribly sure what it was, other than water on the brain, but I knew it wasn't good. The nurse told us that the enlarged ventricles he had were hydrocephalus.
"Hydrocephalus (pronounced hi-dro-SEF-a-lus) is a potentially harmful build up of cerebrospinal fluid (CSF) in parts of the brain.Hydrocephalus
literally means water (hydro) in the head (cephalus). It is sometimes
called water on the brain. The "water" is actually cerebrospinal fluid.
Cerebrospinal fluid is normally present in areas both inside and outside
the brain. Common causes of CSF blockage, which causes hydrocephalus Children with hydrocephalus have too much cerebrospinal fluid in the areas of the brain called ventricles.
The ventricles store and circulate cerebrospinal fluid. Children with
hydrocephalus may also have extra fluid in spaces between the brain and
the skull called the subarachnoid spaces. When
a child’s cerebrospinal fluid cannot flow or be reabsorbed properly, it
builds up. This makes the ventricles bigger and puts pressure on the
tissues of the brain."
So once I hear the hydrocephalus issue we start getting more information. The surgeon wants to meet with us at 8:30 the next morning to go over our options and possibly do surgery the same day. Alvin's case I am told is more urgent than originally thought. The nurse also said she wanted to get him an eye exam as well to be sure that he was indeed seeing ok and that his optic nerves were not being compressed.
So with that the chaos starts. I manage to get through the rest of my training class all the while texting and calling family members with updates on what is going on. At this point we have no idea what will happen the next day other than he might have emergency surgery.
At 8:30 we arrived at Seattle Children's Hospital today and began a whirwind of activity. We met with the neurosurgon and were told that his was a moderatly bad condition with the hydrocephalus and that the cyst was inoperable. The cyst itself is in a bad place and they can't reach it without doing more damage. They hyrocephalus though could have something done to correct it. We had two options. They could put in a shunt that would reroute spinal fluid from his brain to his belly thus elliviating the pressure. The second option that he was a conditate for that not all kids are was called an ETV or Endoscopic third ventriculostomy. In this procedure they literally use a tiny camera inserted in his brain to guide an instrument to make an extra hole in his brain so that fluid can drain out on its own.
We were given the choice and went with the ETV since it meant no permanent hardware would be left inside him. Then the surgeon left to go start scheduling things and we were sent for an eye exam. About an hour and a half later we were back signing the papers for him to have the surgery and getting him ready.
Below is a video of the procedure itself.
Will went back to the operating room as they put him to sleep and then we all headed to grab some lunch. Luckily a good friend of ours drove 2 hours to stay with us and keep Elliot entertained. Seriously having Chirstall there with all of her experince in that hospital was so nice. We laughed about it all and Elliot of course had fun attempting to charm her! As we finished lunch we got a page to head back down to the ICU. To our suprise after only about an hour the surgery was done and things went great. His pressure inside his head was 17 and normal is nothing more than 15. He now had an extra hole in his head and fluid was starting to drain away and the pressure was also expected to go down.
He had a CT scan and then went to recovery where he started to wake up and ask for me. The staff immediately brought me back and he was doing good just a little nauseated. Soon after they got him up to the Neuro ICU for monitoring and he started to ask to play on the tablet but still sick. He will hopefully be moved out of ICU to a regular room tomorrow and go home late tomorrow or Sunday.
Now at about 9:30 he is resting comfortablly. The last 72 hours or so have been crazy for all of us. I can say the best thing that came out of this was how fast the doctors and staff here reacted. The nurses I saw in neuro recovery and ICU are shocked that the hydrocephalus wasn't caught earlier but since autism signs like speach delay and motor skills problems are also common to hydrocephalus the only real clue without the MRI was his head shape.
I fear that if we had been back in AL this wouldn't have been caught. Once we got here and pushed for a re-evaluation of his condition everything was discovered and we dodged a major bullet. We were able to find things we never knew were there and had honestly more than likely been there since birth. Alvin's chances of recovery are very good right now. We don't expect his autism symptoms to go away completely but there is a chance that the surgery has lessed the pressure on parts of his brain that control things like speech and fine motor skills and those areas could see more improvement.
To all of those who have sent us well wishes thank you so much. I'm sorry we haven't gotten back to every single one but we have seen them and we appreciate it. We are very grateful at the out pouring of support and hopefully here soon I'll get more pictures up
Last night while trying to put Elliot to bed she became hysterical. Crying and asking for her cup of water. After giving her a drink she told me she needed to go potty and then said “tummy hurt”. Ok her crying fit now made sense. So a dose of anti-gas and soothing and she was fine.
Instances like that are a slap in the face, but yet I’m happy she is able to tell me that she is hurt and where.
It’s a slap in the face because of this story.
About a year ago when we moved here Alvin started playing soccer. He would get to running and then start coughing. We just thought it was due to the climate change. For about the past year we have seen him have what we called a constant cold. For some reason he started coughing every time he went from hot to cold environments and even when he was playing outside. Because we knew nothing else we just thought he was ok and never thought twice.
Then last week at gymnastics we had an incident that made us think otherwise. They were doing his favorite group activity which is a big inflatable mat called an air track where the kids get to practice skills and just have fun jumping. He was having a good time but couldn’t stop coughing. He tried to relax but it didn’t work and he kept pushing himself and ended up finishing the activity but collapsed on the air track once it was over. His teacher brought him out to the lobby and said “he can’t breathe”. I took him home and he still had the cough, but it slowed down so I didn’t rush him into urgent care since he seemed to be breathing ok. I sent our friend and the kids favorite sitter a message about what had happened and she had noticed the last time she was over she noticed he was having the same issue when they went outside to play but the cough subsided when the came in. Then she asked me if he had ever been checked for asthma. Umm, no which got W and I to talking. Maybe that was why he was always coughing.
The next day I called his pediatrician and got us an appointment for that afternoon. Turns out he has asthma and for how long we can’t be sure. W and I seem to think it has been going on for about a year as far as we know. Until his gymnastics teacher said something about him not being able to breathe we just thought it was a chronic cold. Now he has an inhaler that he gets before any physical activity. After a weekend of being outside at playgrounds and hikes he coughed very little and seemed so much better.
I want to beat myself up for this, but in all honesty I can’t. At the time we did what we thought was best. He never until last week gave us any cause for concern. Sure the cough was annoying, but it never bothered him too much so we didn’t see it as an issue.
Getting back to the original point of this post, sometimes I guess I take Elliot’s growing ability to tell me what is wrong or hurt for granted. She can point to what hurts, or when something is bugging her. Alvin though just isn’t there yet. He is doing better but until his communication skills improve whenever he’s sick or hurt it can be a nightmare to try and figure out what is going on and how to help him.
Things have been quiet around here and it’s certainly not intentional.
Between Alvin and Elliot’s baby bother/sister making me constantly sick and crazy work hours I just haven’t had the time or energy to do more posts here.
Lately things have been crazy with Alvin though.
His ninja skills have been getting far better and unfortunately nothing good comes of that.
Saturday Alvin was sick and Saturday night we let our guard down a little because we figured he wouldn’t be up much at all.
Well I heard him up at some point but didn’t think much of it until around 5am I heard a bell. I walked out to the living room to see what was going on and I was shocked. He and his sister were awake and one of them (more than likely him) had dragged his tricycle upstairs from the garage and was ringing the bell and riding it in the living room. The kitchen wasn’t a wreck for once and then we noticed the sliding glass door was open and the dog wasn’t in her kennel. Luckily my husband got dressed quickly and was able to track her down before she got too far.
W made the inevitable 7am run to Lowes and got door alarms. For now there are chimes or alarms on every point of exit. It’s the best we can do until we can get more answers or help to make sure this doesn’t escalate or happen again.
Stuff like this with Alvin has started to scare us more and more. It’s hard to punish him because he acts like he has no idea what he did is wrong or how dangerous it could be.
So this week I am going to make the call I never wanted to make. I’m calling Seattle Children’s department of crisis services (http://www.seattlechildrens.org/clinics-programs/social-work/) I feel like W and I have done as much as we possibly can to keep him safe and yet it still isn’t working.
Tomorrow he undergoes a sedated MRI/EEG. We are hoping this is the first step into understanding what may possibly be going on with him and how we can start helping him.
