Back in the hopital

So first off please forgive me if this all seems like a mess. Once again we have had another urgent operation.This time it was for an infection that was starting to set into his head.

This past weekend we noticed that he had a funky smell coming from his head when you got up really close to it. It was seeping a little blood but Alvin had been acting fine and not running a fever or seeming otherwise painful so we didn't worry about it. We just did our best to keep it clean and dry and things seemed fine.

I decided to call the neurosurgery clinic on Monday just to be sure but continued to think that I was just paranoid. I received no call back Monday and figured it was because my personal cell phone doesn't get reception in the office I called back Tuesday morning and left my work cell phone number. The nurse practitioner called me back and said they wanted to go ahead and see him at 3pm today just to be sure we were ok.

I left work around 1:30 saying that things were fine and I would be back tomorrow.

When I got home W told me that the smell had gotten much worse and that part of his scab had turned green. So off to the hospital we went.

The nurse practitioner took a look at it and cleaned it the best as well as she could and remove some of the caked on glue but soon realized she needed a surgeon to look at him.

The surgeon came in and gave us 2 options. One was to use a topical antibiotic ointment and oral antibiotics and see if that worked. The other option was to take him to the OR and clean it   out and do a full debridement of the area. I told him just to do what was best. He took a couple of pictures and went to show the attending surgeon Dr. Lee who also did his ETV surgery. She came in and said she just thought it was best he go to the OR and get this taken care of once and for all.

Calls then went out to family and W arrived with Elliot. We got him back to the OR and went to grab a bite to eat. After about 45 min we were paged to go wait for him in another room and were told he was waking up. W and Elliot then had to leave and I went back to stay with him.

Waking up was really hard again. He was in a lot of pain and really disoriented. Once the pain was under control we moved to the surgical unit where he will stay.

From what his surgeon told us it smelled worse than it was. He will be kept in the hospital for a few days while they culture what was found and give him heavy doses of antibiotics. She is confident this is just a minor setback for him.

So now we wait. I'll post more as all this continues but right now we are doing well. Once we know more about what is going on I'll send out another update but for the moment we are once again glad to have Seattle Children's Hospital close by and a neurosurgical team that is so good with him.

Hydrocephalus and ETV. When reality sets in.

One of the things you go through after the diagnosis of autism is a reality check. It’s when reality sets in and you face what your child’s new future is. Everything with your child seems uncertain and all of a sudden and you have to go back and understand that things have changed. The things you thought your child would do may no longer seem attainable. So you sit there and make new plans. You start taking things more day by day and learn what a new normal for you and your family is and will be.

To paraphrase a friend of mine, it’s hard to remember that during this time your child is still the same kid you have always known. It takes some time to look at them and remember they are not just their diagnosis. But slowly things get back to what the new normal is and one day you just can’t imagine a time where it wasn’t like this.

This same thing has recently happened to us with dealing with Alvin’s diagnosis of hydrocephalus. The diagnosis and surgery hit us so far out of left field that honestly it’s just taken a longer time to process what has happened and how it will affect us moving forward. The more I have told his story the past few weeks the more things have hit me. Both W and I are still working to really come to grips with what is currently going on with him and what his future will entail with the diagnosis.

I am an engineer and do my share of analysis and in this case I can analyze all day and never really be ok at this point. I’m ok in front of Alvin and E, but W knows me. I always have the facts and numbers in my head.

The general numbers for the procedure Alvin had (an endoscopic third ventriculostomy or ETV) is a success rate of approximately 80%. So in the first year 80% of the patients that have had this procedure the result is that the drainage of cerebral spinal fluid adequately controlled. The second year success rate is about 78% and the known time that the procedure is most likely to fail is within the first three to six months after the operation. The reasons behind the failure can vary, but the most common is that the hole in the third ventricle either partially or fully grows up and spinal fluid can no longer flow through the path

We know that no matter what, his condition will need constant monitoring by his neurosurgeon and the staff at Seattle Children’s Hospital. We know that for him, contact sports like hockey and football are out for good for the rest of his life. The chance of something happening and his catheter being damaged are just too great with both of these sports. Soccer and t-ball/baseball and gymnastics are all possibilities still but will have to wait until after his next MRI and meeting with the neurosurgeon in July to know for sure. Until this appointment we also have to keep a very careful eye on his incision. We have to constantly monitor it for any separation of the skin, blood or leaking of fluid. If anything comes up its back to the clinic or Seattle Children’s Hospital neurosurgery clinic or ER we go.

So what is Alvin’s overall prognosis? For all the information he has he should be fine. He will grow up learning more and more about his condition and how to manage it. We are working on getting him a bracelet as well to identify that he has hydrocephalus in case something happens and he can’t speak. The condition will never completely go away though. The best thing we can hope for is that for the rest of his life he stays in a constant state of remission where the fluid levels remain normal and all drain paths are working correctly. Could he have more surgeries? The answer is yes. Dealing with this condition means never really knowing what is going to happen. So future surgeries to repair his catheter or do a revision to the procedure are always a possibility for the rest of his life.

We know that for the next few months at least we are taking things one day at a time. If at ANY point we notice things that are troubling like loss of verbal skills (goes from talking one day to not being able to talk the next) or suddenly seems lethargic and responds less verbally or to verbal requests we have to get him back to the hospital immediately. These are all signs that something may have gone wrong and he needs immediate attention by the neurosurgery team.

Last week I had a conversation with one of the nurse practitioners in the neurosurgery department after Alvin gave us a scare the night before. She said Alvin was one of the kiddos that scared them. His hydrocephalus was diagnosed much later than some and if his fluid pathway is blocked and the pressure starts to build up again we won’t know what it is going to look like. For him it could present in a number of ways so anytime we have a concern we should keep an extra close eye on him and possibly get him to the ER at Seattle Children’s so that he can be evaluated and effectively treated by the neurosurgery team.

The worst part of all of this for at least the next few months we cannot continue with many of the activities where he is around groups of normal 4 to 5 year olds. Things like playgrounds are allowed only if there is no equipment he can fall off of. Gymnastics and socializing in a structured environment with normal kids is all on hold due to the fall hazards and the possibility of his head splitting open if he rolls on it too much. All we can do is keep home life the same and treat him as much as possible like any other kid his age. We can still go on outings and do all of the other things that we normally do but we have to be extra careful of his actions for the next few months.

So this is what we are dealing with. It’s an adjustment for all of us and is definitely taking time to get used to. Here soon though things will begin to take on a new normal for us and we will gradually learn to accept the new challenges the hydrocephalus diagnosis has presented to Alvin and all of us.

1 week after surgery, a follow up

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.

Will the hydrocephalus surgery cure Alvin's autism?

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.

MRI results, cyst and hydrocephalus oh my!!

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.

Quick note, if you haven't heard of it here is the definition from Seattle Children's Hospital Neurosurgery page:

"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

The Communication breakdown

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.

An update and a scary realization

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.