Sunday, November 20, 2011

Pressing Play

Things have been kind of crazy since we got home.  We are gradually trying to get life back to some kind of normalcy.  It took Will a while to realize that he was safe here, and no one was going to poke him or try to draw blood here at home.  But, each day he has cried a little bit less and played a little bit more to where now, 2 weeks later, we finally feel like his is able to relax and is getting back to life as a toddler.  We were actually able to go to church as a family this morning!

Since surgery, Will has been on a special steroid medication to keep his brain from swelling at the surgery site.  He is also still on Keppra to keep the seizures at bay, and Pepcid to combat the reflux caused by the steroids. Just 10 days after surgery he was off of all pain medication.  He is one tough little boy!

So far, Will has not had any seizures.  That is a miracle in and of itself!  He had a look on his face a few times shortly after we got home that made us nervous, however we think it might have been a side effect of the steroids.  We are thrilled to be living life without any seizures right now, and we couldn't ask for things to be going any better with him. We know the seizures could come back at any moment, but we are thanking God for every blissful day without them.

The capabilities of Will's brain essentially froze back in January when his Infantile Spasms started.  He was just beginning to learn to wave and clap back then, and those abilities disappeared once the spasms (seizures) began.  At that time, his mental abilities slowed to a crawl.  We tried and tried to get him to wave or clap again, figure out new things, focus on children's books and pictures, say any words or make sounds, but he would just look at us and smile.  That beautiful smile that managed to take away some of the sting of watching your child and knowing that he had a very long road ahead of him. It was like someone took his brain and just hit "pause". As parents, it was one of the most painful and terrifying things you could ever imagine.

Suddenly, he is now very focused and able to perform new tasks.  Most of them are very small things that only we would notice, like how he now goes the opposite direction around the kitchen table to catch Dan when they are playing chase.  Some of them are bigger things. He is waving consistently. He has just begun clapping again, and is very proud of himself for doing it.  He is making sounds on command:  Da, Ta, Pa, Sss, Eee.  He mimics the way we pat our dog Duke on the back.  He initiates playing with us.  All of these are things that he couldn't do 2 weeks ago.  At dinner, he began to imitate the sign for "more", something we have been trying in vain to teach him for over a year.  He seems like his development is picking up right where he left off back in January, as if the the surgeons took his brain and finally pressed "play".  We can't wait to see what he does tomorrow!  

Will has an incredible appetite right now.  One night this week he ate 1 1/2 full chicken breasts for dinner along with a lot of noodles, bread, and cookies.  The poor guy was food deprived for so long when he was on the Ketogenic diet that he is now making up for lost time.  Of course, the steroids have contributed to his voracious appetite as well.  The size of his belly and the way it sticks out almost defies gravity.  Believe it or not we really are trying to pace him and his eating habits!

Will's stitches were removed last week at the Clinic.  He knew the building instantly, and when the 2 nurses walked into the room he was immediately uncomfortable.  He has learned that he is ALWAYS the center of attention in a doctor's office, and he would prefer to be invisible.  Imagine every time you are taken to a room and the door closes, and all you know is that the people who just walked in are looking at you and you know they are going to hurt you.  It took 3 of us to hold him down, and another to remove the stitches.  After what felt like an eternity but was really only about 30 minutes, his stitches are now out and his incision is healing well.  It is still very visible and he still fusses with it from time to time, but eventually it will heal and his hair will grow out and hopefully cover most of it.  

This past week, Will had a physical therapy evaluation, and did very well.  We were both there, and that seemed to give him a level of comfort.  He played with the toys that they had, and threw a ball to Dan, which was a huge surprise.  The therapist was very surprised with his ability level, as she sees a lot of kids who have recently had brain surgery and said he was doing excellent.  He had speech therapy this week too, and for the next several week he has a full slate of physical, occupational and speech therapy.  Even though Will is doing well, he is still very delayed developmentally and has a lot of hard work ahead of him.

It is truly miraculous to watch Will learning new things each and every day.  To watch him, it seems unbelievable that barely over 2 weeks ago he had a large section of his brain removed.  He did not lose a single skill, his personality is exactly the same, and he is surprising us all the time with his amazing recovery.  Everyday is a little bit better than the day before.  

Wednesday, November 9, 2011

It's Good to be Home

This would have been posted a lot sooner today, but Will has suddenly found a real interest in the laptop, and every time it was out he had to sit on our lap and peck away at the keyboard - a great sign!

We got home yesterday afternoon, and Will slowly let his guard down and is now happy to be home.  We picked up some burgers and fries on the way home, and when we sat Will in his chair and put some fries in front of him, he actually fed himself!  This was the first time since surgery that he wasn't clamoring for one of us to hold him, and he suddenly had one heck of an appetite.

His stitches are holding nicely, he is handling the pain pretty well, and he is only on ibuprofen and tylenol for painkillers now.  And best of all, still no seizures!

It was great to see the view from our living room window last night rather than the view from the hospital window, and it was a beautiful evening as well!

After we got home, he was pretty clingy to the two of us.  Sleeping is still an extreme challenge.  He basically demanded that one of us hold him while the other be next to him, otherwise he would cry.  Also he is quite startled by loud noises, even loud multiple conversations have made him pretty upset.  We hope it is because he has clarity in his head like he's never had before, and things like this bother him now that the irregular brain activity has been removed.

During the course of the day today he really seems to have let his guard down, and it appears that he has begun his progress.  He seems very aware of his surroundings, and he is playing with his toys on the floor without either of us nearby.  He is engaging his toys as much as before (if not even more so), and seems to be really enjoying himself.  He waved several times today, not a great wave but very deliberate, which we haven't seen in a long time.  He still has moments where he suddenly looks around and realizes that we are farther away than he would like, and moves quickly to get to us.

Now is where the real test begins.  We need to start watching his development and helping him as much as possible, wherever possible.  We will now find out whether his delays are solely because of the bad brain causing seizures that was removed, or if there are other issues in his brain that are causing this as well, and there may be nothing that we can do about them (scary thought).  It would be so great if he could start talking.  We have to approach this as if the seizures are coming back, so we can't waste any time in trying to get his mental development moving.  Who knows- the seizures might come back tomorrow, and freeze his development again.  As soon as we can push him to learn things we need to do so.

It's good to be home!

Tuesday, November 8, 2011

Free at Last!

We are in the room, all packed up and ready to go!  They have pulled all of the needles out, bandages are off, and the last of the torture is done.
Will is sleeping on Kelly's lap.  All of the doctors and specialists have given their final blessings and we are just waiting on some discharge paperwork and prescriptions and we are GOING HOME!!!!

Monday, November 7, 2011


Will and his very tired looking Mama
We are sitting in the hospital room, and for the first time since his surgery...Will is showing interest in a toy! He has pretty much done nothing but cry or sleep for the past few days, so this is an awesome change.  We are starting to see glimpses of our little boy again, and that is a wondrous thing.

Clinically, Will is progressing very well.  He is eating and drinking again, his incision is healing well, and his swelling seems to be somewhat stabilized.  All of this adds up to a very good thing...if all goes well, we are going home tomorrow (Tuesday)!  The doctors all agree that Will is just not going to be happy until he gets out of here.  The poor kid stiffens up in fear everytime a nurse walks past our room, let alone comes in.  Not that we can blame him.  He has had so many blood draws and IV lines run that the nurses are having a hard time finding an "unused" vein.  His arms and legs are bruised and purple.  The poor kid needs a break.  We will find out more on rehab therapy tomorrow, but they going to be setting it up on an outpatient basis, which means we are all going to get to sleep in our own beds again.

We continue to be humbled by the outpouring of support that we have received for our little Buster Beans. We have gotten so many emails, texts, messages, wall posts and cards that it is impossible to respond to them all.  Will has people from around the globe praying for him, from close friends and family to total strangers, all who hear his story and want to do their part.  In the past week, Buster's Blog logged almost 4,000 hits!  Unbelievable.  From the bottom of our heart, we thank all of you!

And, perhaps the most important update of far, so good.  No seizures!

According to Plan

Yesterday (Sunday) was day #3 post-surgery.  Will experienced a lot of discomfort during the course of the day, and it seemed like a long wait every time he needed more Codeine.  He is not exactly happy, although he is absolutely not giving up.  They had to do another blood draw yesterday, and boy did he put up a fight!  As tough as it is to watch them pin him down (and even tougher to participate in), it is great to see how much strength he has when he needs it.  It's amazing that a 23 pound boy needs 4 people to pin him down to get a blood draw.

During the surgery, they had to sever some of his jaw muscles when they made their incisions.  Because of this, we were told that chewing will be very painful, and it will contribute to headaches.  So we have been taking it easy with feeding him and trying to choose softer foods from the hospital menu.  Yesterday his appetite finally showed up - he ate a full plate of Macaroni & Cheese and a Salisbury Steak.  He also drank more fluids yesterday than we have seen him drink since the surgery.  These are signs that he is traveling farther down the road to recovery.  His mood is sort of sad, he just sits and cuddles with us and looks at the TV or whatever else he feels like looking at.  We have gotten a few very faint grins but not the glowing smiles that we are used to.  Hopefully as his jaw heals the smiles will come back.

Will's brother Jack saw him (and us) last night for the first time since before surgery.  It was so great to see his big grin and to get a running hug from him, which neither of us will ever forget.  We spent a lot of time preparing Jack for surgery so he would be ready to see his brother afterwards and not be affected by it too badly.  He came into the room, looked Will over for about a minute, and went back to playing with his cousins down the hall.  It couldn't have gone better.

So, it must be very obvious to our visitors how tired we are, based on the multiple "Wow, you look tired" comments.  We have some awesome family members who got us a room at the Intercontinental Hotel which is connected to the hospital.  This has given us an opportunity to escape to the room and shower and get some uninterrupted sleep.  Dan went to the room last night and came back at about 6:30 this morning, and then Kelly went over to the room until about noon today.

The doctors are pleased with where he is in his recovery, as well as his level of function now that they removed a part of his brain.  There have been no setbacks or surprises, and none of the dreaded "S" word, as one of the nurses calls it.  So far everything is going according to plan, and hopefully will continue that way.  Now that we are rested and cleaned up we are trying our best to help get our little Buster out of here.  We think he'll really perk up if we could just get him home.

Saturday, November 5, 2011

Day #2 Done

Will had a pretty rough day.  He just wasn't happy with anything.  He cried a lot, and felt like he got tortured by the wonderful nurses here who are doing their absolute best to care for him.  He really hates seeing anyone wearing scrubs walk in the door.  He was uncomfortable all day, and kept switching back and forth between Dan and Kelly every few minutes, hoping that one or the other would provide him with the relief or comfort that he was desperately looking for.

He only drank about 5 ounces of apple juice today, and barely ate anything.  He just wasn't interested and seemed like he did not have an appetite.  We got him to eat about a 10 spoonfuls of applesauce but he wasn't happy about it.  So, they gave him an IV bag.  After he had this bag, his Codeine dose, and some Tylenol, he perked up tonight.  He ate a small pack of graham crackers and drank some Gatorade, and then got comfortable on Kelly's lap and gazed at her for a while.  For the moment he was content, and he fell asleep.

He had his good moments today as well, looking at books, pointing at things in the books, and making some of the same noises and sounds that he made before he had the surgery, which makes us wonder if his brain had already moved on and began using other areas to begin his speech development. Hopefully, if nothing else, the absence of the left temporal lobe will mean that the seizures are done and the static in his brain is gone.

The Bandages are Off

Will is continuing to improve.  We had a bit of a rough morning because he had to get poked and prodded several times, but he is now resting comfortably.  He has some swelling, which we expect to get worse before it gets better, but right now it is not terrible.  The doctors removed his bandages this morning so we are now able to see his incision for the first time.  It is a bit larger than anticipated, but it looks like it is almost all in his hairline.  They didn't have to shave much of his hair, so most of his little blonde curls are still there.  It is great to get to kiss that little head again!

Friday, November 4, 2011

Recovery Continues

Just a quick update...Will has now been moved out of the P-ICU and into the Pediatric Epilepsy Monitoring Unit, which is a good sign that he is recovering well.  We were so happy to see everyone and they were happy to see us.

All of the wires, tubes, and needles that were connected to Will are gone, except for one IV in his foot just in case he needs something quick.  This was great because it meant we could put clothes on him, and it also makes it so much easier to hold and comfort him.  He has progressed from Morphine through IV to Codeine orally.  He has been drinking apple juice, but hasn't been able to eat much other than a few Cheerios and a few spoonfuls of Chocolate pudding.  He actually walked a few steps from Kelly to Dan earlier tonight, and we were happy to see that he has the ability and the strength to do so.  Also, since he is out of P-ICU, they take vitals every 4 hours instead of every hour on him.  He never likes getting vitals taken.

Will's Post-Op MRI
The post-op MRI came back great.  All remaining brain tissue looks healthy, and there is no sign of stroke, hemorrhage, etc...just a little post-operative swelling.  The MRI image now shows the section of brain which has been removed and it just looks like a dark empty space.  The surgeons were very pleased with what it showed, and they feel that everything that needed to be removed was removed.  In the end, they had to take his entire left temporal lobe, including the hippocampus, but doctors are optimistic that Will should be able to regain all function using his right side.

Now that the drain has been removed from his head, and they are beginning to taper off the anti-inflammatory drugs, the swelling could get pretty bad.  Our nurse cautioned us that day 3 could be the worst day for swelling because of the timing of these things.  We are already seeing the swelling moving forward across Will's temple and towards his left eye.  We'll see how he is in the morning.

As of right now he has been laying in bed cuddled up with Kelly, sleeping mostly.  He wakes occasionally and looks around, whimpers a little bit and goes back to sleep.  We'll see what tomorrow brings, but as of now everything is still going as planned!

One Miserable little guy

During the night, Will pulled out 2 of his IV's and came close to pulling the drain tube out of his head.  They took mercy on him and pulled out his catheter before he pulled it out for them.  He is not sedated, but is being given a steady stream of Morphine every 4 hours.  After about 3 1/2 hours it becomes apparent that the Morphine is wearing off and that last half hour seems like an eternity.  They came to the room late this morning and removed his drain tube from his head, and it took 4 of us to hold him in place for the tube to be pulled out and 2 stitches put in place.  Needless to say, he is getting a reputation in the ICU as a tough little fighter.

Will is sleeping for the most part, and has spent a lot of time on Kelly's lap all snuggled up and doing his fair share of crying.  We can only imagine what kind of a headache he must have, and the confusion that is going on in his little head right now.  He is still gaining his color back, and is looking better all the time.  The swelling is not too bad yet, but we have been cautioned that after up to 48 hours of surgery he might look like a boxer after a fight.

We are going to be following him to a post-op MRI shortly, and after that we will be moved back to the Pediatric Epilepsy Monitoring Unit, which is where we have spent all of our other stays while at the Clinic.  We are looking forward to seeing all of our old friends in that unit!

Lots of doctors, nurses, and specialists have been rolling in and out of here day and night.  Lots of questions and lots of readings, blood samples, etc.. to make sure he is OK.  Despite all the difficulties with him right now, it is a great thing that he is so full of fight, and is resisting us every step of the way.  We might be pretty scared if he just laid there and let them stick him with needles, etc...

So far, so good!

Thursday, November 3, 2011


We are now in the room with Will, holding him in our arms and rocking him.  He is pretty out of it, is very pale and has a lot of tubes coming out of him but he is able to move all of his limbs and his vital signs are good.  We are rejoicing that he made it through surgery and is now on the road to recovery.

The surgeon said that the surgery went more or less according to plan.  It was no surprise to all of us to hear that our little warrior was strong throughout the procedure.  The surgeon removed the areas that they anticipated, along with an additional section of the temporal lobe to the posterior of his brain.  During surgery, the intraoperative monitoring showed a fairly large amount of abnormal spiking brain waves coming from the posterior of the left temporal lobe. After the area was removed, the abnormal spiking stopped.  This is a VERY good sign, and definitely gives us hope that the surgery could be a success.  He also said that the brain tissue that was removed felt very dense and rubbery, signs that show him that there was cortical dysplasia, or a malformation, present.  Although we will need to wait for the pathology reports to know for sure, we were able to breathe a huge sigh of relief, as we feel like given what they found inside Will's brain, we know in our hearts that proceeding to brain surgery was the right decision.

Brain surgery is not for the faint-hearted
By the time we were able to get into the P-ICU to see him, it had been a very long day.  We were up at 3:00AM, and as you can imagine, stress levels were fairly high throughout the day.  It was no surprise that Kelly's brother Andy felt faint and had to lay down on the couch in Will's room.  Just a few minutes later, Kelly started to pass out and had to join him.  Not sure they will ever hear the end of this one, and of course everyone was ready with cameras to capture the moment.

It sounds like we are in for a long night.  They need to check his vitals every hour throughout the night, and they told us that we should take turns sleeping and watching over Will, so it doesn't sound like there will be much rest for the weary.  In the morning, Will is going to get sedated again (for the 3rd day in a row) for another MRI.  They are hopeful after that is over that we will get to move out of P-ICU and into the regular epilepsy monitoring unit.

Thank you again, everyone, for all of your thoughts, prayers and well wishes.  While we may not be able to respond to every message, we have read all of them and it has helped to keep us strong throughout all of this.  We are truly blessed.

Surgery Complete!

Just got an update (12:31) that the surgery is complete, and everything went according to plan.  We are waiting to talk with the surgeon and will hopefully be able to see Will in another hour or two.

Surgery Update

Update from the operating room (11:58):  Closing, Will is still doing great.

This is great news because it means that they didn't have to remove more tissue that what was planned!

Guardian Angels

Still waiting for an update...the hours are passing slowly around here.

Will is blessed with several guardian angels in the operating room with him today.  Back when Will was on ACTH, the home health nurse who came to our house on many occasions to do Will's blood pressure checks just happened to also be the surgical nurse for Dr. Bingaman.  It was such a welcome sight to see her face this morning and know that she was going to be in the OR with Will.

Next, we have Gabrielle, our EEG tech who is wonderful and has been with us through every step of the way on this journey...every inpatient admission and then some.  She just sent us a text to let us know that one of the epilepsy nurses who has children our age is assigned to Will's case went into the OR to let everyone in there know how special he is!  

Will has an amazing team caring for him today, between all of those here at the Clinic, our family sitting vigil with us, the amazing doctors that are caring for him and all of our prayer warriors who are caring for him on the outside.  Thank you everyone!

Beginning Resection

Update from the operating room (10:34AM):  Beginning the resection now, Will is doing great!

The resection is the actual removal of Will's brain tissue.

Halloween Pictures

A few days late, but here are a few pictures of the boys in their Halloween costumes.  Jack was a fish and Will was a cowboy.  Need to lighten the mood a bit!

Will is still in surgery, and we just got a visit from Gabrielle (our FAVORITE EEG tech) who popped in to the operating room to check on Will and watch over him.  Thank you, Gabby!

Surgery Began

Surgery began at 8:43 am

Kissing Goodbye

We just left the operating room where we kissed our little Buster goodbye.  He flashed Kelly one of his big, beautiful smiles just before he fell asleep.

Wednesday, November 2, 2011

Final Checks

We went to the Clinic today for some more pre-surgery checks, a pre-surgery physical, more bloodwork and an MRI.  Will was sedated, and came through it just fine.  His cold seems to be clearing up which is good news.  He now has some special fiducial markers glued to his head that they will be using during the surgery tomorrow.  They are essentially used as "landmarks" that show up on the MRI so the surgeon knows where these are located on the outside of his head and how that corresponds to what is inside of his head.

We are to be at the Clinic at 5:30 tomorrow morning, surgery is scheduled to begin at 7:00 AM.  They will be giving us periodic updates via pager.  We need to be prepared that the surgeon may contact us during the surgery and let us know that the intraoperative monitoring or the texture of Will's brain tissue indicates that more needs to come out.

We still have some major bumps in the road ahead of us, and a lot of work in the course of Will's rehab.  We will be trying to periodically update the blog during the course of all of this in the course of the next few days.  The posts may be short, vague, or worse, but we'll do the best we can.

Over the past few days, we have been overwhelmed with support, prayers, and messages of all kinds.  We are so touched to know how that so many people love our little boy.  We will never be able to thank everyone for all of your support!