Thursday, September 20, 2012

Recovery Continues

Getting some fresh air
Since we have been home, Will has progressed very well.  He is no longer taking any pain medication, and has resumed a lot of his normal activities.  He is eating like a horse, and over-indulging in his favorite snacks, Goldfish crackers, Golden Grahams, and Cheez-Its snack mix.  To be perfectly honest, we are having a hard time telling Will no when it comes to food.  Actually, we are having a hard time telling him no when it comes to just about anything.  We are just too overjoyed to see our happy little Buster Beans enjoying life again.

One look at Will's incision line and crazy haircut and it is clear why you will never see a neurosurgeon moonlighting as a barber, although Will's reverse mohawk is slowly growing into a nice stubble.  Earlier this week we took Will to his pediatrician who was a great sport and removed all of his stitches.  We aren't sure how many there were, but suffice to say that there were a lot.  It took 5 of us and about 1/2 an hour to get them all out, but it is done.  He is still sporting the skull cap when he goes outside.

He had his first post-surgery session of occupational therapy, as well as a physical therapy assessment.  He did very well with both, and was even jumping on a miniature trampoline at the physical therapist's request, and he loved it.  His excitement and smile was so charming that it brought her to tears.

The front of Will's "Reverse Mohawk"
Will's strength is continuously improving.  Since the surgery, he is clearly left side dominant, preferring to throw with his left hand, eat with his left hand, and so forth.  However, the really good news is that he is still using his right side, and threw a ball to Dan with his right hand today while holding a book in his left hand.  This indicates to us that he is able to integrate both sides of his brain for normal physical functions which is a very good thing!

The back of Will's incision
The most difficult thing that we are seeing him deal with and adjust to is his vision loss on the right side. The visual cortex on the left side of his brain was removed during surgery (as we were told to expect) and he has lost the right half of his vision in both of his eyes.  The presence of an obstacle to his right is difficult for him to deal with.  He tends to bump into things if he walks to the right. We are told that in time all kids compensate for this by quickly scanning toward the blind side every few seconds.

The most amazing thing that we have seen him do is feed himself his entire dinner using a fork.  This may sound pretty simple, but we have never been able to get Will to use silverware on his own and it is something we have worked on repeatedly for over 2 years.  Also, we have not been able to simply put a full plate of food in front of him, as he can't figure out what to do with it, or how to take one piece in his hand and feed himself.  He just stares at it and looks at us, even when it is something he wants to eat.  So, we have always had to put one piece in front of him at a time, and let him pick it up and eat it, then put another piece in front of him, and so on.  Putting an entire plate of food in front of him and watching him eat it, on his own, using a fork is something that just doesn't happen, so to see him make this adjustment so quickly after surgery was very encouraging to us and simply awesome to see.

Saturday, September 15, 2012


Happy to see the dogs
We have a correction to make to our last post.  Will is now unable ABLE to walk on his own! We were told that it would likely take time, hard work and physical therapy to enable Will to walk again, but it is now less than 2 days since we got home and Will is already walking around.  He is just a bit unsteady, but he is doing it and we are hopeful it won't be long before he is back to being able to run and play just like before the surgery.   Another good thing is that his appetite is back and his nausea seems to have passed.  Will is eating so much that we are having to feed him snacks in the middle of the night.  We know that he still has a lot of recovery to do, but he is enjoying being home with our dogs and his big brother Jack.

Thursday, September 13, 2012


So happy to see Jack again!
We made it home today, and we are so happy to be here!  It was wonderful to get to see Jack again, and for Will to be able to rest and relax without fear of needles and tests.

Will is still battling nausea and having trouble keeping food down, but we hope that this will improve soon.  He is very weak, and we were sad to see once we got home that for now, Will is not able to walk on his own.  His legs just sort of buckle underneath him.  It is very apparent that he still has the ability to do so, but it is going to take some time for him to regain enough strength to bear his own weight, especially on his right leg.  The doctors said that this is to be expected, but should be temporary and will improve as the swelling in his brain goes down.  For now, we are going to take things one day at a time, and just be thankful to be home and to have our entire family of four together once again.

Wednesday, September 12, 2012


Will and about 1/3 of the members of his team
We just got news that we are officially getting discharged today!  We are heading to a hotel for a night or two so he can continue to recuperate, but the poking and prodding is done.  Wooooo-hooooo!  This is very good news.

Still giving us a few grins
We have a lot of people to say goodbye to here, and more importantly, to say thank you for giving our son a chance at a better life.  Will has received fantastic care and there has been a lot of "brain power" that came together to treat Will over the past week and a half.  It is amazing to think about what these doctors do for children on a day to day basis, and the number of families they have helped.

Expect to be Amazed

Tuesday started off similar to most other days, with Will somewhat miserable and vomiting up the food that we had worked so hard to get him to eat.  It was frustrating, to say the least.

Happy Smiles!
Doctors came in the early afternoon to remove his 2nd drain tube, which was draining fluid from the cavity created by the tissue removed in Will's brain.  It took a little time, but Will really seemed to perk up from there.  He continued to drink, and by early evening, ate an actual meal.  This was awesome to see!  Later, we got the best surprise of all, Will smiled at us!  It is actually looking like discharge might be in our relatively near future.

Just before going to sleep Tuesday night, Will's IV blew out...again.  Poor Buster has had 7 IV's placed in 9 days, 2 arterial lines, and daily blood draws.  We were terrified that we would need to find another vein for a reinsertion of his IV, and Will just doesn't have many places left.  Thankfully, the doctors agreed that because he is eating and drinking so well we can switch his meds over to oral and there is no need to reinsert the IV unless something changes.  This means even more good news - one by one, all of his leads and tubes have been removed, and Will is now free and not connected to anything.

Since the tubes have been removed, we are finally able to hold Will without too much trouble, except Will only seems to be comfortable lying down, and gets rather upset if we try to sit him up or pick him up.  We aren't sure if this is simply anxiety because he doesn't trust us anymore as we have been pinning him down for procedure after procedure, or if he has a bit of a spinal headache which would be caused by the drainage of spinal fluid through his now removed drain tube.  It could even be a combination of the two. We will discuss this further with the team, but because of this and other concerns, depending on when we get discharged we are planning to take Dr. C's suggestion and stay in a hotel in Detroit for a day or two before we drive home.

Will's doctors are extremely pleased with the way the surgery went.  Dr. C told us that he thinks we should expect to be amazed with the progress Will might be able to make once he recovers, but we are amazed already...just seeing Will being Will.

Tuesday, September 11, 2012

Happy Birthday, Jack!

This blog has been primarily focused on Will and his journey, but we wanted to do a post about the world's best big brother, Jack.  Jack has a very big day this week - his 6th birthday - and we aren't going to be there.  We were hoping that those of you following our blog might be able to wish Jack a very happy birthday.  He has been having a wonderful time with friends, cousins and grandparents while we are away, but we miss him terribly, and we can't wait to get home to see him again.

Jack started kindergarten last week. He did awesome, and was sure to remind us not to worry because he will always be our little boy.  We are so proud of what a wonderful, sensitive, crazy little boy he is growing up to be.  He has had to deal with a lot during this journey too, things a big brother shouldn't have to think about at his age, but he has remained resilient and strong no matter what comes our way.
We love you, Jack!  

Monday, September 10, 2012

Eat, Drink and Be Merry

Let us start by saying that today has definitely been better than yesterday, although we still have a long way to go.  We have been getting very nervous because Will is not eating anything and his intestines are, um...not moving.  Other than a few french fries Thursday night, Will is now on his 8th day without eating anything.  Every time we've tried to get him to eat he just pushes the food away.  We've been trying to sneak very small pieces of food into his mouth, such as a single Cheerio.  We have tried soft foods, crunchy foods, snack foods, favorite foods, smoothies and shakes, all to no avail.  Any time we have been successful in getting something in his mouth, he either spits it right back out, or if he chews it, he vomits almost immediately.  The neurosurgery team came in this morning and were followed by the hospital's dietician.  We were told that if Will doesn't eat by Tuesday (tomorrow) morning, they will need to put in a feeding tube.

Looking stylish but a bit too skinny
We knew had to get him off of the strong narcotic pain medicine if we stood any chance of getting him to eat.  This morning after talking to the neurosurgery team we decided to take a leap of faith and replace his Hycet (like Vicodin for kids) with plain old Tylenol at his scheduled pain medication time.  We also had the dietician send an order for him to have an Ensure protein shake, as he has been getting these at home as we tried to plump him up in preparation for this surgery and likes them.  There were some rough moments as the Tylenol was obviously not as strong as the previous painkiller, but we made it through.  Shockingly, Will is only 3 1/2 days out from major two stage brain surgery, and he is now only getting Tylenol and Motrin for pain.  Try to imagine an adult doing that.  We have said it before but will say it again, Will's strength is absolutely amazing.

By this evening, Will finished two of the protein shakes, and has really perked up to the point that he actually smiled a few tiny little smiles.  We went and got Will his favorite food - french fries from Wendy's in the hospital, and he was able to eat two bites before giving up and spitting out a third.  We are starting to wonder if some of the swelling in his brain is impacting his ability to chew on the right side, which would likely subside in a few days if that is the case.  We're not going to push it at this point.  Thankfully he was able to eat something, and we are hoping the protein shakes will be enough to avoid a feeding tube.

Will has pulled the gauze wrap off of his head so many times that even the nurses are getting sick of rewrapping it, and each time we do it is torture to him because we have to hold his head to do it.  We had a tense moment today when the tape from his gauze caught on the internal drain tube which is still inside his skull and it almost got yanked.  After Will's last surgery, we purchased a skull cap to be able to put on him when we went out in public to avoid the inevitable stares and uncomfortable questions from curious onlookers.  We showed it to the neurosurgery team, and they agreed to let him wear that instead of his head wrap.  He is a lot more comfortable, and now when he pulls it off, we can just slip it back on.  Plus, he looks a bit stylish now too.

It is looking like we might be here a day or two longer than initially anticipated to make sure that he can eat and drink on his own.  Our neurologist suggested that once Will stabilizes they might discharge us from the hospital and then we could just remain in Detroit at a hotel for a day or two rather than going home.  That way, we can get Will into a more comfortable environment while at the same time be sure he will tolerate the drive home and know that we won't have to try to rush back if something goes wrong.

Sunday, September 9, 2012

Digging Deep

We have had a rough day here, filled with difficult to control pain, nausea and vomiting, IV blowouts, diaper leaks, drain tube removals, painful blood draws and Will pulling off his head wrap...twice.  We have really had to dig deep to find the courage to push on throughout the day today.  We are exhausted and drained, both physically and emotionally, but we are relieved to have another day behind us and have Will one day closer to recovery.  He is resting peacefully right now, and seems to be a bit better than earlier today.  Baby steps.

Will is slowly being weaned from the nausea-inducing, heavy-hitting narcotic painkillers.  Tomorrow will mark one week since he last ate a meal other than the few fries he had Thursday night.  We hope his nausea will soon subside and he can start to eat and regain his strength.  Regardless, his team is pleased with his progress and everything is slowly moving along as expected, although we will discuss this further with them during rounds tomorrow

On the way to Detroit - Can't wait to see that smile again!
We are so thankful that we are not alone in this.  Our families, both those here with us in Detroit and those helping with Jack at home, have never left our side throughout this ordeal.  The number of messages, posts, comments and emails from far and wide has been incredibly humbling, and has given us strength at times when we have desperately needed it.  Jack's school principal even created a "Will Slattery Prayer Zone" and the students prayed the rosary on a rotation throughout the day Friday, all for our little Buster.  A friend posted on Kelly's Facebook page a saying - God gives the hardest battles to his strongest soldiers.  Will, at age three and a whopping 26 pounds, is the strongest soldier we have known.  We are grateful he has been blessed with an entire army helping him fight this battle.

Saturday, September 8, 2012

Rejoicing in the Moment

Will is now resting in ICU.  All of his vitals are good, and his color has returned to his cheeks.  He did have to receive one blood transfusion during the surgery and then during the night last night it was looking like he would need a second transfusion but at this point his blood levels are rebounding so well they have decided to let him recover on his own.  The IV's are pouring into him, so he's getting the sustenance he needs through that.  He has had some juice, but does not have any appetite yet and has a bit of an upset stomach.
Dry lips in recovery!

When signing our consent prior to the surgery, the doctors made sure that we understood there were serious concerns that Will could have weakness on the right side of his body, as the area they were removing was very close to the motor strip in his brain.  At the same time, they were optimistic that it would not be affected.  Thankfully, immediately after surgery and before any temporary swelling could happen, Will had full motion and plenty of strength, proving that the motor strip was not impacted by the surgery.  It actually took 4 of us to hold him down to keep him from pulling out his arterial line.  He was so strong immediately after the surgery that he actually bent one of the immobilizers they had placed on his arms to keep him pulling out IV's.  We are so happy to see him with a full range of motion, and also so determined and full of fight despite everything that has happened to him over the past week.

The doctors have been streaming in this morning, and the entire team is very impressed with what they are seeing.  His strength and recovery so far have been astounding.  The entire team seems very pleased with how the procedure went - there were no surprises and results were the best we could have hoped for.  They are very optimistic that he will now be able to learn to talk and progress forward with his development.

Will's field of vision is almost certainly completely gone on the right half of both of his eyes, and we can definitely tell when standing on that side of his crib that he has lost visual field.  He will have some adjustment to deal with over time, but nothing insurmountable.
As long as I have my Mom, I'm OK

Overall, we are exhausted, depleted, and a bit giddy with excitement and joy - but always with a measure of caution.  We were told in November that surgery was a success, only to have our elation come crashing back to the ground in an instant.  We are way too far along in this journey to think that can't happen again.  Regardless, given all our little Buster has been through, it feels really good to feel hope and optimism for our little boy, and right now...we are going to rejoice in this moment.

Friday, September 7, 2012


We just talked with a member of the surgical team.  The surgery is over, they are closing now.  They removed his entire left parietal and occipital lobes and a small portion of his temporal lobe that remained from the first surgery.  The amazing news is that testing ran after the surgery showed that the spikes are GONE!!!!

Surgery has Started

Update from the OR: Surgery has started.

Deja Vu

Just kissed Will goodbye, again. Praying extra hard right now.

Our Little Warrior

Precious Will
It has been a very long week and we still have a long way to go before this is over, but we are getting closer.  Surgery will be at 8:30 on Friday morning and is likely to last about 6 hours.

Yesterday was a big day in this process.  The doctors attempted to map Will's motor function by stimulating the electrodes in Will's brain one at a time and watching for movement.  Since Tuesday, they have been gathering data to determine what area of his brain needs to be removed.  However, they needed to identify exactly where Will's motor function is located to know that the resection will not eliminate his ability to walk or move his right side.

Once all of the data was gathered, we had a meeting with Will's team of doctors in the afternoon.  Listening to them talk about their plan for the surgery, it is evident that they are very optimistic about the chances of a brighter future for Will.  As awful as the grid placement has been, the data that it has provided is remarkable.  We found out that Will has almost certainly been having daily seizures since November.  Since the grids were placed, he has had between ten and fifteen seizures per day.  However, the seizures are coming from an area of his brain that is far enough removed from his motor cortex that there are absolutely no visible signs of the seizures.  This is actually a good thing, because it means that the doctors should be able to remove the abnormal tissue, without impacting his motor skills.  The seizures are coming from only one distinct area - the parietal and occipital lobes - and this is what the doctors will remove.  There is no abnormal activity coming from the remaining areas of his brain, which is a wonderful thing.

We are VERY comfortable with the surgical plan, and extremely confident in the team of doctors that will be collaborating for this surgery.  Without question, we have come to the right place.

Will is still continuing to be a little warrior.  There have been times when it takes three to four people just to hold him down.  On Thursday, he suddenly reached up and pulled the entire bandage right off of his head.  We gasped and jumped to stop him but it was too late.  In the end, none of wires were pulled and he was able to get rewrapped with a fresh, lighter wrap which made him much happier.

After our meeting with the doctors, they agreed to disconnect the wires from Will's head. He still has the wires coming out of his brain, but they are no longer connected to anything which means he can finally sit up. This has made him considerably less miserable than before.  He perked up a bit after that, and we have been able to see glimpses of our Will again.  He even ate a little, which was wonderful as he is going to need all the strength he can muster to get through his next surgery.  He finished it off with a few sips of a milkshake, which we all agreed is the best thing we could have given him before his next brain surgery.

We will continue to update throughout the next surgery.  We are so appreciative and humbled by the outpouring of support that we are receiving from places near and far.  Thank you to all who are continuing to pray for our little Buster Beans.

Thursday, September 6, 2012

Will's Journey in Pictures

We thought it might be helpful to show some pictures of Will's journey with epilepsy so far.  However, the best explanation is demonstrated not by pictures of our adorable little Buster Beans, but pictures of EEG brain waves.  These are not pictures of Will's actual EEG's, but simply pictures of the typical patterns.

First, here is a picture of a normal EEG pattern, of a person without epilepsy.  This is the Holy Grail for a child with Infantile Spasms, and what Will's team here is Detroit is trying to achieve for Will.  As you can see, the lines are calm and organized.

Normal EEG

Next, here is a picture of an EEG for a child with Infantile Spasms.  This EEG was NOT taken during a seizure, this is what the EEG looks like all the time - the brain is in total chaos.  This is why Infantile Spasms is a catastrophic form of epilepsy.  The constant pattern of extremely abnormal and chaotic brain waves makes it virtually impossible for a child to learn and develop.  This is more or less what Will's EEG looked like for most of 2011, although it has not looked like this since his last surgery in November.  The fact that Will has been able to function as well as he has considering what was going on in his brain is a true miracle.

Infantile Spasms EEG with Hypsarrhythmia

Finally, here is a picture of an EEG showing focal spikes, which is what Will is having now.  As you can see, this is far more organized than the chaotic EEG of infantile spasms above, but still not as nice as clean as the normal EEG.  Will's spikes are actually even more focal than those shown in this picture, as they are only coming from one very distinct area of his brain, the left parietal and occipital region.  However, Will's spikes are coming rather frequently, and are fairly severe.  Some of the spikes are so severe that they are radiating out into the remainder of his brain, impacting development in the areas of his brain that we believe are healthy and normal.

EEG with Focal Spikes

Finally, we can't close a post about Will's journey in pictures without a real picture of our little Buster.  He is really struggling right now, but we must keep reminding ourselves that his pain is temporary and we can and will get through this.

One Miserable Little Guy

Only twenty four hours to go until the next surgery, and then Will will be on his way to recovery.  His doctors here are very optimistic that after this surgery his brain will resemble the NORMAL, clean EEG in the first picture.  Until then, we will just keep on praying for our little Buster Beans and trying to make him as comfortable as possible.

Wednesday, September 5, 2012

Halfway Point

We are 36 hours in, with 36 hours to go until surgery.  Will has been moved out of ICU and into the regular hospital wing.  He has eaten almost nothing, occasionally drinks a little juice, but is luckily on an IV so at least he is getting liquids.  He is very miserable, but still fights like crazy every time they try to get a blood pressure read on him, or touch him for any reason, which is pretty often.  He is still on  some pretty heavy hitting pain medications, along with antibiotics.  We are becoming concerned that in his weakened state he will have a difficult time with the 2nd surgery on Friday, unless he starts to eat and gains back some energy. It has been a very long day and we think it will continue like this through the night and tomorrow.

We think we are seeing a visible seizure in his eye blinking.  He is frequently squeezing his eyes shut, and it looks like it is an involuntary movement.  This is happening rapid fire in clusters over the course of several minutes, about once every three to five seconds.  It is also tracking with spiking that we are seeing on the EEG.  Of course, this has not been verified by any doctors, it is just what we are seeing and it is something that we've never seen him do before.  He is now 48 hours without any anti-seizure medication, and he is tired and weak, so it is very possible that what we are seeing are seizures.

Tomorrow afternoon we will meet with the neurology group and will discuss their findings and their plan for Friday's surgery.  We are very curious and anxious to see what they say.  For right now we have to focus on keeping Will under control until Friday.

Tuesday, September 4, 2012

One Down, One to Go

One surgery down, one more to go.  This has been a very long day, and by the way our little fighter is acting, we know that we are also in for a very long night.  Luckily we have family here to help us and we also have the seemingly endless support of our incredible network of family and friends.

They ended up having to put arm immobilizers on Will to keep him from pulling out any of his lines.  He wakes extremely agitated and is having bouts of nausea and vomiting.  The good news is the grids are placed, and we are one step closer to recovery.  Everything is going according to plan, including what has been discovered on the EEG grid placement.

The team placed about 100 electrodes on his brain, and so far, the data seems to be showing exactly what we expected, although he is having even more spiking and abnormal activity than the doctors expected - about 1 spike per second.  Will's neurologist described what he saw on the EEG in Will's left parietal and occipital lobes as "a whole lot of nastiness."  This is confirmation to us that we are doing the right thing, and we have come to the right place.  By the end of Thursday they will know how much of his brain they want to remove, and we fully expect that the surgery will go forward on Friday.

We spent last night at the Ronald McDonald House, and are doing our best to get some rest there when we can in the coming days. It really is an amazing organization whose mission is to help families that are traveling out of town for their child's medical treatment. We were very happy and privileged to be there. Last night, Will was his usual self - all smiles and giggles, which helped our spirits.  It was hard to be upset when looking at that happy little face.  Nonetheless, there was a pit in our stomachs as we mustered big smiles while he was being a goofball in our room, knowing what awaited him first thing in this morning.

Grids are Placed!

The grid surgery is complete.  They placed 100 electrodes on the left side of Will's brain.  So far, it is showing constant spiking, even a bit worse than anticipated.  The doctors believe that Will has been having undetected seizures all along.  It will be about 2 more hours before we get to see Will, we will update later this evening.

Surgery Started

Just got an update that the surgery has begun and Will is doing well.

Starting Phase 1

We just kissed Will goodbye. They will spend about an hour prepping and the surgery will begin around 10:00 am.