Sunday, April 29, 2012

Sheer Exhaustion

I think we're all still getting past all the drama and emotion of Will's hospitalization at Johns Hopkins.  We never could have completely realized the impact of being separated for 9 days, and the drama of last Monday.  In the moment, you act.  In the moment, you power through it.  But after it is all over, the body and psyche have some healing to do.

Since we have gotten home, Will has been sleeping great.  He's still getting back into the school habit, and we hope that the crankiness and tiredness that he has felt over the past couple of days at school will be short lived.  Matt has not been sleeping well since we got home, and he's been very clingy.  It is hard to know what is going on in his (not so) little head, but we're doing our best to show him the affection that he's craving and encourage him to get back to his awesome sleeping habits.

Luke has been having the toughest time since we all have returned home.  I am not sure what is going on.  He is sleeping normally, but we're getting reports from school that he isn't listening to teachers and is running around uncontrollably.  Today, he had the meltdown of all meltdowns when we told him that we wouldn't be able to go to the pool.  I've never seen him as emotional, irrational, and foul-mouthed as he was today.  It was alarming, to say the least.  Since he has calmed down, we have done our best to encourage good behavior, talk about what happened this afternoon and how to improve, but also trying not to dwell on it too much.

We know that Will went through a lot at Hopkins.  A little less obvious was the confusion and sadness that Luke and Matt felt while he was gone.  Our hope is that with time, these fears and confusions are healed with love and things will return to the much calmer and less teary way that they were.

I celebrated my 33rd birthday this past Saturday with a yard sale, Pei Wei for dinner, and cake at home.  It was pretty low key.  The yard sale was moderately successful - sold about half of what I put out.  As much as I wanted to have energy and excitement over my birthday, I finally realized that I was purely exhausted.  Between the hospital and the travel and the emotion and the late nights/early mornings, I am just tired.  And like with all 3 boys, I know that with time and some earlier nights, I will move past Will's latest hospitalization and get back into the swing of things.  It is just taking a little more time than anticipated.

Thursday, April 26, 2012

Catching Up

The boys spent a lot of time apart while Will was in the hospital.  Over the past couple of days at home, as Will is getting back into the swing of things with school and sleeping, he is also learning how Matt and Luke spent the time while he was away!

He laughed as he heard about the trip to Gigi's Cupcakes for Matt's actual birthday on April 20.  Each of us selected one special cupcake (from top left: strawberry shortcake, Midnight Magic, carrot cake, and chocolate chip cheesecake) and took them back to Oma's house to enjoy.  Thankfully everyone shared because they were all delicious... what a load of sugar though!  Within minutes of consumption, Luke and Matt were running around and around.  We were happy to be out of the public eye as the sugar wore off and they entered the land of the sugar high crash.

Will was so proud to hear about Luke's second Miracle League game. Luke bat off of a tee during his first trip to the plate. But as he watched some of the other kids, he realized that they bat from a pitcher, not off a tee. That's what he wanted to do. So after a little introduction from Stara, Luke took 3 pitches before making contact on his very own. I think that tee might be history.

Will wished he could be a part of music time on a rainy afternoon while he was away. Matt and Luke took turn beating on a drum, and then danced together on the Big-esque oversized floor piano.  It might not have been the most melodic sounding afternoon, but it sure looked like fun!

Despite all the fun times, Luke and Matt really missed Will. It was incredibly sweet to see Luke and Matt interact with Will after 9 days away. They had been asleep when we got home, so the first time Luke and Matt saw Will was the following morning. They woke him up in his bed (not so quietly or gently...) but he rolled over with a grin from ear to ear and it has been going pretty well ever since.

Tuesday, April 24, 2012

Mama, I'm Coming Home

I'm blogging from home!  Yay!  It is hard to believe that after the day we had yesterday, we're already back home.  But we are, and we are all incredibly happy about it.  Especially Will.

Will had a good night of sleep last night.  After we got all ready for bed, his nurse gave him Benadryl again to help him sleep.  He was still a little fidgety, so I crawled into bed with him.  He calmed down immediately and relaxed into my snuggling arms.  Before I knew it, the nurse had turned out the lights and Will and I enjoyed a night of peaceful sleep together.  It was the best! 

He woke up groggy this morning though.  I guess that is the downside of Benadryl.  He got another dose of his regular seizure medications.  Despite Elmo and toys and his iPad, he stayed cranky through the morning and took a long nap in the middle of the day.  As he was waking up, our doctors came in to round.

Doctor: So, when would you like to go home?
Me: I am not trying to rush it.  I guess we can go whenever you tell me that Will's EEG is safe.
Doctor: Um... Will's EEG is never "safe."  Even when he is on his medication.
Me: Touche!
Doctor: So when would you like to go home?
Me: Is his EEG back to where it was when we got here?
Doctor: Yes, since late last night.
Me: I've got to talk to Nate, but I think we'll be ready to go today.
Doctor: Sounds good to me.  I think Will is telling us that he's ready to go.  We'll be presenting Will at conference next week, and will be back in touch after that to let you know our official findings and recommendations for next steps.

After a quick conversation with my husband (during which time we decided that Will could be cranky anywhere, there was really no need to keep him at the hospital for that), I told the nurse we were ready to go.  As Grandpa Harry tried his best to distract an unhappy Will and Uncle Drew brought my van back from his apartment, I furiously packed our things.

The nurse aide came it to remove Will's IV and EEG leads.  I thought Will would be happy about this part, but honestly, there was no pleasing the kid.  I think he had honestly had enough.  After the events of yesterday and the multiple nights of bad sleep, the 9 days in the same room had finally caught up with him.

She took the IV out, he yelled.  She unwrapped the gauze around his head, he yelled more.  Then she doused his head in acetone to release the lead glue and he went ballistic.  She removed them as quickly and gently as possible, but he was so mad and there was no doing anything right.  Grandpa and I moved Will over the sink and while I held Will still, Grandpa used gentle baby shampoo and a gnarly hospital washcloth to remove the remainder of the extra super duper grip lead glue from Will's hair.

As he rubbed, we noticed that there were still marks on Will's head where the leads had been.  It actually looks like Will may have had an allergic reaction to the lead glue, which may have explained the screaming that he did when the EEG techs added more gel and glue to his head.  It also couldn't have felt too good to have acetone put on the spots, or to have them rubbed with a rough washcloth.  It kills me to think about all the discomfort that Will has gone through this week.

We loaded our arms and backs quickly and made a fast exit from the room.  We said goodbye to our nurses and doctors and while we liked all of them, we were so happy to be leaving!  Will still had a grumpy look on his face, though, as we made our way through the hospital.  It wasn't until we got to the open air parking garage that he let out the loudest, shrillest "thank goodness I just got the heck out of there" whoop I have EVER heard him make.  He grinned from ear to ear as I loaded him into the van.

My dad and brother spent an amazing amount of time with Will, Nate and me these past 9 days.  I just want them to know how much we appreciated the time, assistance, food, company and comfort as we lived at Johns Hopkins over these past 9 days.  You guys really made this whole separation a lot more tolerable and enjoyable.  Even though Will didn't show it today, he was sad to see you go. 

We drove home as quickly and safely as possible.  I stopped for ice cream at one point, though, because my Aunt Heidi told me I deserved it!  Will went through periods of being unhappy, mostly because I think he's still a tired from all the medication that was pumped into his system yesterday.  We finally rolled up on the house about 5 hours after we left the hospital.  Nate and Otis came out to greet us.  Nate picked up Will and Will let out the happiest, longest sigh ever.  He just collapsed into Nate's welcoming arms and was happy.  This was what he was waiting for.  Home.

He didn't stop with the quiet, breathy happy noises for the next hour.  As he took a bath, he splashed around.  As he dressed in his pajamas (over the head!!!), he cooed.  We laid him in his bed with his favorite pillow, he was so thrilled.  Such happy noises from a boy who has made nothing but mad and sad noises these past two days! 

He was asleep within minutes of going down.  I've been in to check on him every 15 minutes since he went down, just like I always do.  We're almost done unpacking and getting ready for tomorrow.  Its strange, but we all seem so happy to be getting into the same old routine.  There's something to be said for the same old routine.  Its comfortable.  It is familiar.  It is safe.  This is what we have been waiting for.  This is home.

Thank you all for following our journey and for the notes, calls, Facebook messages of support and prayers.  You were with us every step of the way, and when you're far from home and going through such a strange and stressful experience, that can make so much difference.  I have so many emails to respond to and calls to return, I will get to them I promise!  Thanks to my mom for all her help holding down the homefront and to our wonderful neighbor for helping to rock Matthew to sleep when both Nate and I weren't here.  What a community we have.  We feel incredibly blessed.  Goodnight from our house!  I can't wait to sleep in my own bed!

Monday, April 23, 2012

The Big One

We knew it was only a matter of time.  Being off of medications, with a "horrible" EEG meant that the likelihood of a seizure soon was inevitable.  That's why we're here.  I thought I was better prepared for that.

Last night, Will couldn't sleep.  He was tired and frustrated, and his leg muscles were moving a lot.  I crawled in bed with him, in hopes that it would comfort him.  That lasted for a few hours, but by 3am, he was screaming.  I couldn't do anything.  I called the nurse, who called the neurologist on call.

Because we're in the epilepsy monitoring unit, we're followed by a special team.  The on-call resident didn't want to give Will any neurologic-type drug because she didn't want to affect the EMU's team plan.  I told her that she had to do something.  She called our doctor, who asked that we try some Benadryl.  It seemed to take the edge off of Will and we both slept soundly until about 7 this morning.

Will wasn't himself, though, which I attributed at first to nights of terrible sleep.  He was zoning out a lot, and not very interactive.  By 8am, I pushed the seizure button because he had stopped repeating "mama" and "dada."

The nurses and doctors ran in.  We marked the time, and just watched.  Will vomited as he typically does, and then his eyes fixed.  His tongue started clicking and he developed a twitch in his left hand.  It was a typical seizure - save one thing.  This was the morning, not bed time. 

After 5 minutes, they drew a syringe of emergency medication and gave it to him through his IV.  We waited.  It didn't do anything.  The seizure twitching moved onto his left leg and quickly to the right side of his body.  They gave him another syringe of medication.  Things slowed down a bit.

The doctor kept running out to check the EEG.  The EEG tech ran in with a syringe of conductive gel and fixed some of the leads on Will's head - to ensure they were getting the highest quality information possible.  Will was getting mad.  Though he was no longer typically seizing, he developed a "donkey kick" in his left leg.  It would not stop.  He just kept kicking.  He was getting mad because the emergency medication was making him sleepy, but the involuntary kicking was keeping him awake.

The doctor wasn't sure what to make of it.  Will's EEG was no longer showing any seizures.  She worried that he was having some type of deeper seizure that wasn't being shown on the EEG.  She ordered him another medication that we had not yet tried, but the pharmacy told her that it would take about 15 minutes to reach us.

She decided that wasn't fast enough - if he was having a deep seizure, then there was a possibility that it had been going on for about 45 minutes.  She paged the rapid response team because they carry the medication that she wanted with them.  While I held Will's hand, our doctor and nurses cleared the room.  Within 3 minutes, there were 15 new people in our room.  Out of breath.  They ran.

Our doctor explained the situation.  Will was wailing.  Time seemed to be going so slowly for me.  I am sure that happens for most parents, in the moment when you realize you can do nothing.  The head of the emergency response team - an attending physician in the pediatric intensive care unit (PICU) - served as the main communicator with me.  She said that because the drug they needed to administer could lower Will's ability to breathe and the EMU doesn't have those types of monitoring capabilities, they needed to move Will.

They transferred him to the PICU.  Again for me, time was moving so slowly.  I just wanted Will to get this medication as quickly as possible.  Nothing was quite fast enough, though I am sure that it was happening methodically and thoughtfully to ensure that they were doing the best thing for Will.

As Will was being attended to in the PICU, I called Nate to tell him what was happening.  I know he felt helpless getting the call from me, being all the way in NC.  I felt helpless and I was standing right next to Will.

They gave Will another syringe of the first emergency medication as they hooked up the oxygen.  He threw up three times in rapid succession, soaking his pajamas and the back of his gauze head wrap.  They gave him the medication that we'd been waiting for, and then we waited.

One by one, as Will's situation calmed down, members of the emergency response team left.  Our attending physician from the EMU came down to make sure Will was okay.  She squeezed my hand and I just lost it.  Somehow, 2 hours had passed and I didn't even know how.  Will was out of it, having had the seizure that we needed him to have... but these weren't the circumstances I had prepared myself for. 

I was ready for a typical seizure.  One that started predictably, and ended 8 minutes after we administered his emergency medication.  Then while Will slept peacefully, we would discuss the findings with our doctor.  But things weren't happening that way.

In the PICU, we were sharing a room with a little boy who needed regular suction for oral and trach secretions.  Suction is what they used to put Will's leads on his head, and the sound makes him go nuts.  So from his drug-induced stupor, he started screaming when that suction started from behind the curtain next to us.  Again, there was nothing I could do.

The emergency medications that they used to stop Will's seizure have some negative side effects - they can cause some errant muscle spasms and agitation.  Will got both side effects.  His legs weren't donkey kicking anymore but they just wouldn't stop moving.  He wanted to flex them.  And he was beyond agitated.  He was pissed.

He wouldn't stop wailing.  He wasn't in pain.  He wasn't seizing anymore (the EEG tech followed us to the PICU and hooked up a portable EEG so that they could continue to monitor Will's brain activity post-seizure).  But he was crying and miserable.  They gave him Versed to calm him down.  He went to sleep and I left the room to collect my thoughts and make some phone calls.

I washed my face in the bathroom.  I was ugly.  Red, puffy face from crying.  My eyes were still bewildered.  What just happened?  I was still in my pajamas.  I went back to the PICU.

Will was agitated again.  They gave him another mg of Versed and he calmed down again.  They took his temperature, and he had a slight fever.  They gave him Tylenol.  I could hardly keep track of the drugs that had been put in his body in the past few hours.  I looked at the clock.  It was nearly 2pm.  Time might have seemed to be going slowly, but this nightmare had been going on for 6 hours.

While we were in the PICU, Will's IV became blocked. He had to get a new one.  Because of the vomiting and the flexing and the fighting in the past few hours, he was not well hydrated.  Veins are hard to find when you aren't well hydrated, and they had to stick him 3 times before successfully landing the new IV.  That made him pretty mad.  The EEG tech came in to adhere a couple of EEG leads with glue and suction.  He was getting rather pissed.  Then Will managed to pull his IV out, and bled all over himself.  Talk about adding insult to injury.

Will finally managed a 15 minute period of uninterrupted sleep.  The EMU attending came back. She told me that now that Will wasn't having any more seizures, they were working on getting him back to the EMU.  I was happy to hear that.  I knew it was only a matter of time before the little boy next to us needed to be suctioned again, and the sound of it would jolt Will from his delicate sleep and send him into 30 minutes of screaming. 

The attending also told me that they had gotten enough data on the EEG and didn't need to see any more seizures from Will.  Their plan was to start his regular seizure medications as soon as possible.  Thank goodness.  It seemed unfair and cruel to make Will go through another seizure like this. I was glad that I didn't have to fight that fight.

We were transferred back to the EMU about 8 hours after we had been admitted to the PICU.  Will was so happy to be back.  I popped in an Elmo DVD as the nurses tended to him for a minute.  Then I sat down.  I have never had a day when I have felt so weak.  Not in control.  I felt guilty for bringing Will here, for pushing to get this testing done.  In that moment, I hope that we hadn't been cavalier and arrogant.  In that moment, I prayed that we had made the right decision by having Will undergo this testing and for putting our trust and safety of our son into the hands of this EMU team.

As Will enjoyed some quiet time with his favorite red furry monster, I sat in the chair by his bed and sobbed.  The nurses knew that Will was fine - they kept coming in to check on me.  The fellow came in to tell me that they were still analyzing the EEG and would be ready to have a "next steps" conversation in the morning.  For now, they wanted us to rest.  They stressed that both Will and I needed to rest.

The only question I had was why had this seizure been so bad, when it started off so predictably?  Basically the answer is that Will's seizure medications are doing a good job of keeping his seizures at bay.  Without that protection (as in the case of Will right now, being off of his meds for 4 days), the reaction to a seizure is amplified.  It affected a larger portion of his brain off of meds than it does on them.

Thankfully Will fell asleep after eating some applesauce.  He is back on his seizure medications, so we should start to see some improvement in his sleeping and attitude in the next 18 hours.  It has been a long day.  We saw "the big one" today and I hope we never have to do it again.

Sunday, April 22, 2012

Still holding

I didn't think we'd get to this point.  7 nights in and no seizures to report.  How can this be?  I am totally perplexed.  Will has been off of all seizure medications for 3 days.  They say it takes 3 days for the drugs to completely work their way out of his system.  The doctors have told me that over the past 2 days, they have seen a dramatic change in his EEG.  The good news is that his seizure medications do something.  The bad news is that he still hasn't had a seizure.

The docs have repeatedly called Will's EEG "horrible." I wouldn't make up, or even use that word if they hadn't used it to describe what they see.  When I pressed further to figure out what that actually meant, they just said that the activity on the right side of his brain is exceptionally abnormal, and gets many times worse once he goes to sleep.

Will's brain activity after he falls asleep is so bad that it prevents typical sleeping brain activity.  Since Will has been weaned off of his seizure medications, he has slept progressively worse.  He wants to sleep so badly, but because his brain activity is neurologically preventing him from sleeping, he tosses and turns and gets more and more aggravated.

This is heartbreaking to see.  Last night, he woke up at least 15 times in the night.  My guess is that tonight will be worse, based on the fact that he's been asleep for less than 2 hours and has already needed to be adjusted 5 times.  His feet are flexing a lot and he's just unable to be still.

But this is not a seizure.  Despite being off of medications and sleep deprived, Will is not seizing.  He is happy during the day, playing with toys and his iPad and enjoying Elmo and Weather Channel on TV.  He is eating and drinking well, interacting with visitors, and getting appropriately annoyed when we try to interrupt his "only child" time by Skyping with Luke and Matt.

Not only am I praying for a seizure, but I am praying for a seizure soon.  That way, we can get Will back on his medications and quell this abnormal brain activity while our doctors figure out the best course of action.  Without that seizure, Will is suffering and there is nothing that I can do about it.  I've been on the verge of tears all night.  I knew this wasn't going to be an easy time, but this certainly isn't the reason I thought it would be tough.

Friday, April 20, 2012

Strawberry shortcake, banana split...

No seizure tonight... 5 nights in.  Will is now 2 days off of his anti-seizure medication.  Apparently it can stay in your system for about 3 days, so he will only truly be "unmedicated" on Sunday.  Hopefully by then, things are more... "interesting."  The days are long at the hospital.  The space can feel like its closing in on you.  Visitors are a blessing, phone calls and emails are welcome distractions, and Will's laughs are really making the time a little more tolerable. 

Thankfully Will is in a better mood now than when we went strawberry picking this past Sunday.  The day was beautiful.  We loaded two sets of grandparents into vehicles and made our way to Vollmer Farm in Youngsville.  This is now our second year going to pick strawberries there.  We went earlier this year than last, and good thing too!  The strawberry season started early here this year.  And MAN, were there strawberries to be picked.

Papa and the boys enjoyed a bit of time together while the rest of us got ready to load into the wagon to take us out to the strawberry fields.

We loaded onto the wagon.  Luke was pining away at the tractor pulling us (Farmer Vollmer eventually let Luke sit in the tractor seat - I am sure, a highlight for Luke).  Will enjoyed a couple of moments of quiet before heading out into the field, and proceeding to cry the entire time.  We still aren't sure what was going on.  We just know that he wasn't happy and didn't want to be picking strawberries!

Once we got into the fields, we all grabbed a basket and headed off for our bounty.  It was amazing.  Everywhere we looked, the strawberries were bright red and beautiful!  While last year we really had to hunt through plants to fill just one basket, this year after about 25 minutes, each one of the 8 adults in our group had picked 5 pounds of berries.  We literally had to stop looking at the plants because we had to stop picking.  It was awesome.  Luke and Matt really got into picking this year, it was fun to see!

Luke and Matt even found some fun as we were loading up the wagon, jumping over the irrigation piping.  They were bummed when we had to stop.

Will's favorite time of day was after we all had enjoyed some local ice cream and he got to dance around with Grammy.  He was all smiles!

All in all, a fun and successful trip.  We all found some fun (albeit eventually for Will).  We loaded up the cars, drove home, and relaxed for a bit.  But that didn't last long... with me leaving the next day for Hopkins and not wanting those pounds of lovely berries to go to waste, I set up the kitchen and cooked up 8 jars of strawberry jam that very afternoon :)

Thursday, April 19, 2012

As promised...

... on evenings when Will doesn't have a seizure at Johns Hopkins, I will catch the blog up on things that we did this past weekend!  We're through night #4 of Will's inpatient stay, and thus far, no seizures.  He has been off of all anti-epileptic medication now for 18 hours.  Each day that passes, the likelihood of a seizure caught on EEG increases!

But for tonight, we celebrate Matt's 2nd birthday.  We had his party this past weekend, though his birthday is tomorrow (Friday).  It seems like just yesterday that we were introducing Cart on the blog! In the past 2 years, Matt has transformed from a round, smooshy faced baby to an active, determined, independent little boy. He is a true joy and laugh to be around.

We kept the party small, because we had so much going on with our preparations for Hopkins.  It would have been hard to replicate Luke and Will's party from last month... I just don't seem to have that kind of energy right now.  Too much on my mind, I suppose. 

Matt was thrilled with the Elmo theme.  We all had a great time sharing laughs and smiles, and enjoying the togetherness before the long separation of the inpatient stay.  We were so grateful to have family travel into town to celebrate with us, as well as local family and close friends.  Truly a wonderful supportive group who understood the importance of the day... not just with the party and Matthew's celebration, but also as a send off to the great Hopkins unknown.

Here are some of my favorite photos from the party.  I didn't get photos of everyone, I apologize! I tried! Too caught up in the day, I guess! Happy birthday to my sweet baby boy!

Wednesday, April 18, 2012

No go

Will had another great day today.  Happy, giggly, attentive, aware.  They decreased both of his seizure medications, and by this time tomorrow, he will be completely off of all seizure medications.  Despite the decreases, there were no seizures at bedtime tonight.  He's sleeping soundly! 

The doctors stopped by to talk about the plan.  They remarked again how active his EEG was on the right side of his brain.  They said that while it is active during the day, it gets even more active after he goes to sleep.  They actually seemed shocked that with all that activity, he hasn't had a seizure yet while hooked up to the EEG.

Nate and I completed our first transition today.  The drives are long, but for both of us, totally worth it.  We both are anxious to see the boy/s that we've missed for the past couple of days.  We're both exhausted though!  Please excuse the short post tonight... I've got to get some sleep!

Tuesday, April 17, 2012

Second night of quiet

Will and I have had a good day, but just like yesterday, Will fell asleep and stayed asleep tonight.  No seizure activity.  Is it weird that I feel a little bummed about that?

He had a great time hanging out with Grandpa Harry today, showing off his iPad games, love of coughing and sneezing, and vast array of Elmo DVDs.  I was grateful for the company, coffee and non-hospital food lunch :) Having family and friends stop by has really made this EEG confinement better for all of us! Thanks to Rena for stopping by tonight to hang out, bring me dinner and dessert. The nurses appreciated the extra fruit tart :)

There has been a lot of regular maintenance on Will's EEG leads. This morning, a different EEG tech stopped in to reattach 7 of Will's leads. This tech was a man of Russian descent, and he had Will laughing. Later in the day, the tech from yesterday (the one Will screamed at a lot) came in to apply new transmission gel to the inside of each of his EEG leads. Will saw her and started screaming again. She tried to talk with a Russian accent, but that did nothing to quiet Will.

I met with several doctors today. They continue to slowly decrease Will's carbatrol - he's currently at 50% of his typical dosage and they'll step down by 25% tomorrow. They will also decrease his Lamactil dosage tomorrow as well.

They told me that they have to be careful stepping down Will's medications because he has "such an active EEG." I didn't really know what this meant. I asked our doctor, who said that some activity is good because no activity means you're dead.

I like the sarcasm.

On a serious note, she added that although they have seen no seizures on Will's EEGs yet, he shows a lot of atypical brain activity (hence the "active" comment above). Given his brain damage and morphology, this isn't really unexpected. But because of this increased and atypical activity, their concern is that when they take his medications lower, they will see an astronomical increase in seizure activity. Each day that passes, they lower his medication levels and the chances of a seizure rises.

In addition to the chief, the attending, and the fellow, I also met with a second year neurology resident today. She isn't on our case. She doesn't know a thing about Will. But I am friends with her sister on Facebook, and my friend wanted her neurologist sister to check in on us and make sure we were being taken care of. I love Facebook and the kindness of friends and strangers alike. She and I talked for a long time about our case and our care, and we again determined that we're in the best possible place to manage the care and treatment of Will's epilepsy!

Will has been in a great mood over the past day. I don't know if it is because they are stepping down his medications (perhaps the meds have side effects that make Will feel yucky), because he's getting a lot of one-on-one attention (and you know those Slavik boys LOVE to be the only child), or if he's enjoying the endless supply of Elmo DVDs... but considering Will is on a 10 foot tether and can't do much besides lay in his bed and sit in his wheelchair, he's doing amazingly well. I think he's curious why I keep taking pictures of him... "Mom, seriously... I am doing the same thing as yesterday. I just have a different shirt and a new gauze wrap on my head."

I continue to be amazed and humbled by the outpouring of support. Thanks everyone for the prayers and thoughts, kind notes on Facebook and email, meals, and phone calls. Thanks also for helping us laugh. This is truly the best medicine when you aren't sure what else to do.

I got this photo from Nate earlier this evening, with the note "Brother Solidarity." I laughed for a solid minute. Quietly, of course, didn't want to disrupt Will and any potential seizure! 

Tomorrow, Nate is driving up to Baltimore and I will head back to North Carolina.  I am excited to see Luke and Matt, but am torn between that and wanting to stay here to see Will through these next couple of days (likely free of seizure medication).   The separation is tough (though the nurses tell me this is typically how parents with other children handle their EMU stay) but worth it to make sure everyone is covered and life continues as normally as possible.  Thanks to Oma for handling these transition days.  Please continue to hope and pray we don't have too many more of them - bring on the seizures, bring on the data, bring on the knowledge and the expertise... then kick us out the door!

Monday, April 16, 2012

Holding my breath

I am trying to type so quietly.  We're in Will's room on the 8th floor of Meyer at Johns Hopkins University Hospital.  Will is exhausted.  And I am sitting here next to him, feet up on his bed, intently watching his face... waiting for a sign that a seizure is starting.  I don't want my typing to wake him up, I want him to sleep deeply for 20 minutes, and then I want him to wake up, eyes fixed to the left, lips smacking.  For the first time ever in my life, I want to watch my son have a seizure.  I cannot stop holding my breath, waiting for this event to occur.

We arrived right on time at Hopkins this morning, after picking up my brother for moral support.  And by "moral support," I mean that I needed help carrying all our bags in from the van.  I had a tough time packing minimalistically.  How do you pack for a trip of unknown duration?  I made the executive decision to pack Will for 7 days.  Perhaps that is an arbitrary number, but it allowed me to move from staring at my empty suitcases to getting us on the road.  I was also instructed to pack a couple of days for food for him, and also needed to pack every single tray-top toy and Elmo DVD that we own.  When all was said and done, we entered the hospital today with a large suitcase, two duffel bags, my work bag, a canvas bag, two small cooler bags, and my purse.  And a partridge in a pair tree.

They didn't have our room ready right away, so we hung out and watched the world go by.  Will enjoyed several iPad apps, and Superman and I were happy to move up to our room in the early afternoon.

It took a while to get settled into the room. The room isn't very large, and Will's wheelchair and all our luggage took up a lot of space. I got creative with storage, so thankfully now we aren't bumping into things every time we turn around. The challenge will be trying to find everything when it is time to leave. After we finally were settled, the EEG technician came in to start adhering Will's leads to his head. She seemed excited to hear that we had just shaved his head. I tried to explain that we did it to avoid a stinky head as the week went on and we couldn't bathe Will. She was excited that the leads would stick better. To each his own.

Though Will has had a couple of EEGs and a sleep study done before, he's never had EEG leads stuck on like this. He's used to the sticky paste that releases with acetone. They use glue here... stinky stinky glue that requires a seriously scary chemical to release. After the lead is stuck to your head with glue, then another glue-soaked pad is stuck on top of it on your head, to adhere to your hair. Then they use suction to remove the liquid glue and leave a lovely twice-adhered metal lead to your head.

49 times over. Will has 49 leads stuck to his head.  They said they could add at least 20 more if they needed to, though I question if he actually has that much vacant property on his scalp right now.

He certainly didn't enjoy having them adhered. I think the glue was making his eyes water (or was that me?) and the sound of suction near his ears and eyes made him very upset. A couple of times, he'd be looking at me and the suction would stop. He'd stop screaming and turn his head towards where the EEG tech was standing. When he saw her still standing there, he'd start screaming again. Good thing she didn't take it personally.

About 24 leads into the adhesion party, Will stopped screaming. He either realized that it wasn't too bad, or he was just plain tuckered out. Regardless of what it was, the second half of the EEG set up was a lot quieter than the first.

When everything was completed, the EEG tech wrapped Will's 49 EEG leads into a colorful ponytail of wires behind his head, and wrapped his head in an entire roll of gauze.  She said it was so he wouldn't pull anything off of his head.  I really think she was making him look like a Q-tip to get back at him for screaming at her so much.

He hasn't complained about the leads on his head. He didn't make a peep when he got an IV.  He's eaten well all afternoon, and been happy going between his hospital bed and his wheelchair. Unfortunately we aren't allowed out of the room while he is inpatient and hooked up to the EEG, so hopefully this good mood continues.

They watched Will on EEG for a little while this afternoon.  He showed no seizure activity so they decided to step down the dosage on one of his anti-seizure medications tonight.  Slowly and methodically, they will step down his medication and watch closely.  In addition to monitoring the EEG, they have him on video monitor at all times.  The eye in the sky can see everywhere in the room except the bathroom.  Guess you know where I'll be changing for bed.

Will has now been sleeping for an hour.  The window for his typical seizure has passed.  I find it odd that I'm sitting here and rooting for a seizure, but the truth is that is why we're here.  When I was talking with the fellow and attending today, they told me that ideally they would like Will to have 3-4 seizures while he is here.  Though that seems unrealistic to me given his history, it is their goal.  I find the team here very easy to work with, friendly, logical, and thoughtful.  It puts me at ease.

His chest is rising and falling in a slow rhythm now.  Will fell asleep when the lights were still on, and both the nurse and my brother were here.  There was no playing with the g-tube line.  There was no kicking.  No laughing or singing.  There was pure exhaustion.  I feel the same way myself, only I cannot take my eyes off of Will's closed eyes.  I keep waiting.  Holding my breath... until tomorrow night, it would seem... when we try this all over again.

Sunday, April 15, 2012

Best efforts

We finally got some baseball-worthy weather this past weekend. Luke woke up with Grasshopper baseball on his mind, and was super excited that it wasn't raining and to put on his uniform. When we got to the ballpark, he had a great time hitting, and learning how to throw and play left field. His smile was so big and he was practically giddy as he ran around the field.

Will, on the other hand, still isn't sold on the idea of playing baseball. We aren't sure if it is the sound of the crowd, the strangers around, his attitude about trying new things, or something completely unrelated. All we know is that when we roll up to the baseball field, Will goes from a happy kid to a complete wreck. The photo below is the happiest one I have of him from the whole day.

I got Matt a Grasshoppers Bat Boy t-shirt so that he'd feel like a member of the team. But when the game started and he wasn't allowed to follow Luke to play, he wasn't too thrilled. We got a lot of pouty looks and gestures like this:

We had a wonderful, eventful weekend here. Unfortunately at this moment, between packing for Hopkins tomorrow, laundry and my anxiety, I am going to leave this entry short and sweet. As the week progresses (and especially on the nights when Will doesn't have a seizure), I'll post about Matt's early birthday party and our adventures in the strawberry fields.

Good night! Wish us luck tomorrow! Big day!

Thursday, April 12, 2012

Perfect shirts

For Christmas, my friend Rena sent the boys the perfect dress up/down shirt for boys - casual brown t-shirts with sewn on dressy patterned ties in blue and green.  Classy yet casual.  You gotta love Etsy.

Easter dinner at Stara and Joe's was the perfect opportunity to showcase the shirts.  I think you'll agree...

We had a lovely Easter dinner with Stara and Joe, their son Matt, and Oma and Opa.  Going to their home for Easter has been our tradition since 2007, when Luke and Will were still in the NICU and the prospect of a homecooked meal instead of eating Easter dinner in the UNC Hospital cafeteria was a welcome change.  We so enjoy this tradition, and are very blessed with supportive family friends and boys who are healthy enough to be home with us and share in such special holidays and traditions.

And speaking of perfect shirts... thanks SO much to everyone who has passed along button up the front 4T and 5T shirts for Will's stay in the Epilepsy Monitoring Unit! Will is going to be one well-dressed patient when we head to Johns Hopkins on Monday! You all are wonderful, we are forever grateful for your prayers, kindness, thoughtfulness, open closets, and postage :)

And a super special thanks to my friend Evelyn who has taken it upon herself over the past month to scour EVERY possible store in the Raleigh-Durham area where they sell button up the front pajamas (surprisingly hard to come by). She made it her mission to find Will some approved pajamas, and we are heading to the hospital with some special PJs from a very special lady.

Wednesday, April 11, 2012

The hunt

After church on Easter Sunday (during which time Will had everyone in our section cracking up because he kept giggling when a woman near us sneezed because of the incense... a LOT), we went to Oma and Opa's house for breakfast and an Easter egg hunt.

Will must have been giggled out because we couldn't get a smile out of the kid.

Luke was busy throwing a temper tantrum over the gifts the Easter Bunny gave Will and not him, so Matt started the Easter egg hunt on his own.  At first he was tentative.  He'd pick up the eggs, but did not want to put them in his bucket.  He kept giving them to Opa, in hopes that Opa would make them go away.

Once Luke realized that his little brother was getting all the eggs, he decided that his temper tantrum was ill-timed and high tailed it outside.  And thus, the hunt was started.  Cue dramatic music.

Matt saw Luke pick up the eggs and put them in his bucket. Suddenly Matt wasn't handing eggs over to Opa anymore. Instantaneously he became a little 2 year old plastic egg hoarder. Luke quickly realized that Matt might be small, but that meant he was stealthy. This made Luke mad. He was suddenly looking into Matt's basket to see how many eggs Matt had. Matt took offense to this. If one thought the other was collecting more Easter bounty, he'd steal eggs from the other's bucket.  We had to make sure things stayed even because there is some serious brother competition developing between Luke and Matt.

Every now and again, they'd come together to strategize.

But that only lasted for a second before they went back to sneaky egg hunting.

Will took the high road.  He and Oma went the other way around the house, found their own eggs, and stayed away from all that rivalry stuff.

And finally, finally, finally, Will gave us a smile when Luke shared some of his fought over eggs.  They're learning!  And loving... just in their own way. How long does this rivalry last?