Where Does the Time Go?

I started writing a blog update 6 months ago but never finished it. I will try to resume where I left off. Happy Birthday to Nathan. Nathan celebrated his 6th birthday on March 1st. It’s so hard to believe that 6 1/2 years have passed since he came into this world. I figured I should write something before many more months or years pass and I forget the details.

Nathan’s seizure saga continues. We can never get or keep control. We started him on another seizure med three months ago. I still have visions of reducing his anti-convulsant meds which could mean reducing side effects, lethargy, etc. But, we added on another one because we so desperately want to find some relief and each different drug holds an elusive promise of a better life for Nathan. So, he is now back to 4 anti-convulsants and is following the same path that he's been down so many times before. We get a honeymoon period after starting a med, but after a few weeks we go back to status quo. Sigh!

Nathan is getting bigger and heavier. His nutritionist and GI doc are very proud of him as he is finally at a good weight for height. He is starting “early puberty” (another side effect of cerebral palsy and possibly the anti-convulsants), so he is going thru an early growth spurt. With our bathroom remodel behind us, we are now dreaming of a converted mini-van and an in-home lift system , which of course continues to push out the kitchen remodel we wanted to do 6 years ago. Some of Nathan’s nurses will not lift him or push his wheelchair up the clunky steep metal ramp to get into our non-converted van. It is starting to be our warning flag to think about assistive lifting devices and changing our lifestyle overall. I also now have a bulging disc in my neck, which may or may not have been triggered by lifting Nathan, but definitely worries me as Nathan continues to grow.

Nathan had 4 baby teeth pulled a few months ago to prevent possible aspiration should they fall out on their own. He went thru it like the trooper that he always is, with only local anesthesia. He recovered great, and now we are anxiously awaiting his permanent teeth while we enjoy his sweet toothless grin. On the downside, his left hip has now completely dislocated. For those of you that have been followers of Nathan's blog for a few years, you may remember that we painstakingly decided not to put Nathan through a massive surgery that could have prevented dislocation. The decision was made when doctors warned us that he might not make it through the procedure or recovery. Fast forward to now - we do not regret our choice and so far Nathan is not in pain from the hip. Like all other things, we will deal with it when/if it happens. The dislocation is not causing any other problems at this time other than awkward sitting positions.

We have just spent our summer trying to live the typical family lifestyle. Kind of hard when you are not a typical family - LOL. For the most part, we have been successful despite all of the extra planning and preparation that is required for Nathan's medical needs on the go. We kicked off the summer with a long visit with my sister and her husband, where we spent most of our days playing in the pool. The pool remodel (aka - Nathan's Cabo Shelf) is working out great for him as he now has a safe place to hang out where he can enjoy the water with all of us. After that, we went on our annual Beach/Disneyland vacation with our dear friends. This year, we stayed in a house right on the beach in Sunset Beach. It was a fabulous location that gave us so much more flexibility with Nathan, without compromising Madison and Zachary's beach fun. As usual, we enjoyed Disneyland for a couple days. Nathan especially enjoyed his repeat rides on “It’s A Small World” offered by the fabulous staff from the Happiest Place on Earth. The ocean and sand is calming for all of us, so we spent days and hours just enjoying the simple things in life. After we returned from SoCal, we decided to try our luck with our 2nd annual trip to Lake Tahoe with Jim’s family. This trip, while shorter in distance and duration, is a little tougher for Nathan as accessibility and oxygen are both challenges. We were more prepared this year with plenty of oxygen, monitors, and a borrowed jogger stroller. It all worked out perfectly, although Nathan seemed a little sad to miss out on swimming in the lake with the other kids. The water in Lake Tahoe is much too cold for Nathan. The gap in activities that the kids enjoy is getting greater and we find ourselves making more compromises so that each one of them can experience the childhood that we wish for them. It was exceptionally hard earlier this year when we left Nathan behind for the first time ever to take a day trip with the other kids to go sledding in the snow – something we know that Nathan would have hated, but so sad to experience without him.

Nathan is starting his new school year next week, along with the other kids. I’m not really sure what grade Nathan is in, but for the sake of “labels”, we could say that Nathan is starting 1st grade. He will continue on his Medical Independent Study program where his teachers and therapists come to our home. It is always a bit hectic and sometimes overwhelming to have so many people parade through our home, but when I think about the alternative of Nathan attending school with all of the germs, I am thankful we have this option. Nathan is making slow yet steady progress with his communication devices and other school activities. It is fun to watch him so engaged with school and making progress in areas that no one believed he could just a few years ago. Nathan is out to prove all the "experts" wrong.

Madison and Nathan are beginning to ask more questions about Nathan as they get older. Madison wants to know if Nathan will ever get married. Zach wants to know if he will be “like” Nathan when he is Nathan’s age. He also wants to know how long Nathan will live. The doctors told us that Nathan wouldn’t live to see his 1st birthday and he is 6 now. So, what do you tell a 4 year old when you don't even know what to tell yourself. How does one explain the unexplainable? We believe that God has a path for Nathan, and for all of us on this journey. I’ve been at peace with Nathan’s health, diagnosis, prognosis, and the fact that he is growing, learning, and surviving despite all odds for six years now. There are moments, however, that take me back to the dark place of uncertainty and fear – Nathan lost a dear friend this year to pneumonia. He was the same age as Nathan. There are other moments when I take in the stares, the questions, the judgment, and the people that illegally park in the only “van accessible” parking spots and just pray for a more accepting world (or sometimes I just scream). Then there are moments that make me smile - like when the 7 year old girl who met Nathan last weekend said “I think he wants to dance”, not “what’s wrong with him?” as Nathan was moving his hands and feet to the music. Sometimes I drive myself crazy trying to figure out Nathan’s path, but I just come back to the mantra that we must take one day at a time. We are thankful for every day and every moment we have. We are thankful that Nathan enjoys “It’s a Small World” year after year. We are thankful for all of you – some of you whom have been part of our lives for many years, and others that we know because of Nathan. Thank you for reading this and for cheering Nathan on for another year.

Happy New Year

Dear Friends and Fam,

Happy New Year! I did not mean to leave you all hanging for so many months wondering how Nathan’s major medication changes played out. Time just keeps going so fast and every day brings new challenges or hurdles to climb for Nathan and the rest of us.

When I last left off, Nathan’s seizures had improved but his behavior had become worrisome. He was not sleeping (ever – it seemed), and was hollering out non-stop. Then, things improved dramatically for a couple months. We were at a very good seizure place, for Nathan. I never in a million years would have thought that 10 seizures per day was a good place to be. But, everything is relative in our world. Nathan calmed down and seemed to be genuinely happy. He began sleeping through the night (thanks to our friend, Melatonin) and staying awake/alert through the days. He was doing amazing in school - using 2 switches, smiling, playing, walking backwards in his gait trainer, using his hands for exploration, etc…

But then, gradually the honeymoon period of this new drug wore off. His seizures came back. Not quite as bad as before, but enough to begin making him more lethargic and less interested in the world. We chased the dosage of this medication, as we have done so many times in the past. But as history continues to repeat itself, chasing a dosage does not help.

During this period, his torticollis became worse and he began losing the ability to hit his head switch as frequently because his neck was so tight. This is critical to Nathan’s quality of life as the head switch is his access to the world – toys, communication, etc.. We decided to have botox injections in his neck to loosen this muscle and hopefully give him more head range. Now, many of you are thinking “cool – botox injections”. I was thinking about the risk of botox injections in the neck of a 5 year old. As always, Nathan was a trooper and did amazing. The injections did loosen up his neck which is great, but it caused him to lose a lot of artificial strength in his head. He is back to dropping his head all the time, and especially worrisome is the head dropping in his wheelchair when I’m driving him to appointments without someone else in the car to help. I’m back to pulling over on the highway to fix his head so we can continue our journey. We are going to wait another month to determine if we do repeat injections as the botox wears off about every 3 months.

Next on the ever growing list of medical challenges is that his adult teeth are ahead of schedule. Really? We are preparing for extraction of 6 of his baby teeth to make way for his over-sized adult teeth that are beginning to cut into the roots of other teeth. The dentist and his doctors think we can do this under local anesthesia in the dentist office, so we hope all goes well with that.

Probably the most worrisome news right now is that he, at 5 years old, is already starting puberty. This may be the cause of the worsening seizures, but we don’t know for sure. We still have to have him evaluated by a pediatric endocrinologist (another hurdle). But a few of the tell-tale signs are there which is pretty undeniable. We know that many children with CP enter puberty early, but 5 years old seems really unfair to Nathan.

For the good news. He has remained healthy over the holidays and the winter season to date. We finally completed our bathroom remodel for roll-in shower accessibility. This was so exciting for us as we never liked the downstairs tiny bathroom to begin with. It was hideously designed with tile, linoleum, fixtures, and wallpaper from the 80s, even though our house was built in the 90s. So, we got to design from scratch, knock out a closet next to the bathroom to give us more space, and build a roll-in sloped tile floor with an extra large shower giving Nathan, his caregivers, and the rest of the family the flexibility and functionality of a 'luxury' bathroom. Now, if only we could remodel the rest of the house…

This is the new year, and as I write about all of our challenges, I am reminded that we do continue to count our blessings and look forward to a wonderful 2011. We are blessed with 3 unique children, and wonderful family and friends that have helped us through everything on this unplanned journey. We are blessed to have kept our jobs (and health care insurance) this year thru the economic downturn. We know of so many tragic events that have impacted family, friends, and strangers alike this year and we try not to take a single day for granted. Nathan keeps showing us how to weather each storm with a sweet smile and so much unconditional love. He has brought amazing people into our lives and has helped us to understand that every day is a gift.

We wish all of you a joyous, peaceful, and prosperous year.

Love, the McCues

Be Careful What You Wish For

Well, Friends, here we are again in the world of the unexpected and bizarre.

As of last update, we were waiting for Nathan to come off of some meds and adjust to the new meds in order to get a feel for his new baseline. Would he be better or worse than where he was 3 weeks ago? Our prayers have been for Nathan to become less sedated even at a price of more seizures. The last two weeks have been a series of ups and downs with bizarre behavior for which we cannot explain. Is it caused by some new type of seizure, a medication side effect, or something else? I have sat up with him night after night wondering if he is going to come out of what may or may not be a seizure and have driven myself crazy with worry and guilt for initating this medication experiement.


While waiting for the neurologist to return from his vacation, we tweaked his meds a little, but after a day or two, he would settle right back into a pattern of uncontrollable movement patterns with his arms, legs, and head, paired with constant moaning/crying vocalizations, lip smacking, irritability, and insomnia.


Ok - we did wish for less sedation. But we didn't mean this...


So, last week, we went in for an emergency EEG to see what was going on with his brain this time. My fear was that whatever we did, had made things truly worse. Low and behold - his brain waves have improved quite a bit. Most likely due to this new medication. We think this is the result we were hoping for, but nothing can ever be easy or simple with Nathan.


Which leads us to why the behavior change? We think it is probably due to one of three things (or a combo) - 1) a side effect of the new medication, 2) improved brain activity that allows the real Nathan to shine through, or 3) a movement disorder that was hidden underneath the fog of the seizures/meds.


The neurologist was quite pleased with the improved EEG results and said that often times when he fixes or improves one brain issue in a child, it creates a new issue that was always underlying, but masked by the other. And now, our sweet little, quiet Nathan may be a high maintenance, insomniac, that cries all the time. We now have to get to know the new Nathan.



We are again tweaking the med dosages and moving the sedating ones to bedtime in hopes that he will once again sleep through the night. We are adding melatonin and a muscle relaxant to help with the irritability and possible movement disorder. However, we have found that the muscle relaxant relaxes the heart and lungs too much, so that may not be a viable option for Nathan.

I wrote the above paragraphs several days ago, but forgot to post. As usual, Nathan has continuned to be unpredictable. We are getting a bit more sleep, thinking that the melatonin regimen is helping. Nathan is awake much more of the daytime (good thing), but he is often irritable still and sometimes cries all day and night for no apparant reason (bad thing). He is having fewer big seizures (good thing), but many more little myoclonic seizures (bad thing). His teachers are impressed with the new and improved (read ALERT) kiddo, but they do not sit up with him at night with worry. He has increased tone which helps with strength for holding up his head and pushing himself backwards in his gait trainer (good thing), but his increased tone is also causing tighter muscles and worsening torticollis (bad thing). We will keep plugging along and the only thing I'm sure of is that by the time I write again, things will be different.

Thanks for all the prayers and well wishes, and for following this recent saga of Nathan's.

Luv, The McCues

Nathan's Seizures

Hi Folks. Just a quick update to let you all know that Nathan is home. He actually came home late Friday night after I decided not to stick around with the night shift. As of my last blog entry, Nathan was having a lot more myoclonic seizures on day 3 of our experiment. We had added back one medication, and I was relieved that he had fallen into a deep sleep for the night. Well, Friday morning, he woke up and went into status grand mal seizures. It was very scary for awhile. After giving him high doses of valium, he calmed down and slept for a little bit (about 45 minutes). The neurologist then added back another med and adjusted his Vegus Nerve Stimulator to what is called 'rapid cycling'. That means that he went from getting 20 seconds electrical stimulation to the brain every 3 minutes to getting 15 seconds of electrical stimulation every 20 seconds.


Then he woke up, and began having status clonic seizures. The doctor added more drugs to get his brain to calm down. This experiement was about eliminating drugs, not adding. Ugghh. I can only say that when you are watching your child seize, you want nothing more than to stop it anyway possible. So, pumped full of drugs and now electrical brain stimulation every 15 seconds, Nathan decided to take another nap. The rest of the human population would have slept for days after all of that. Nathan woke up after 2 hours and resumed what I consider to be "just a crappy seizure day". That means it is not our favorite type of day but one that we are used to and know how to handle.


The neuro was leaving town for the weekend and wrote discharge orders to go home when we felt he was stable, yet offered to let Nathan stay the weekend given his instability. The night shift was not the most proficient, and his nurse was rather intimidated by his situation. The carbohydrates and miserable cot were wearing on me, so we packed up and went home at 10pm figuring that we can always call 911 if he went back into status seizures. The neuro also left me with a regimen of medication options should we not be able to stop a seizure with our usual means.


The happy ending here is that we stayed home all weekend, did not add any more meds, and his seizures have settled into typical crappy day seizures. It will take a couple weeks to work all the meds in and out of his system to see what his new baseline is. Until then...

Nathan's August Hospital Update

Hello Again Friends of Nathan! For those of you that follow along on Facebook, you may already know that I’m hanging out this week at the hospital with Nathan. This was a planned visit – not an emergency, but in many ways everything feels like an emergency with Nathan.

Nathan’s seizures have continued to be just as bad, and some days worse, than before the Vagus Nerve Stimulator was implanted in April. We have not seen any improvement from this device yet, however the neurologist continues to caution us that it can take up to a year to provide any benefit. We continue to hope and pray that he is right.

After many debates with the neurologist on medicating Nathan, we have decided to change the approach. Nathan has been on 4 major anti-convulsant medications for over a couple years and we still see between 25-100 seizures daily. On top of that, he has to deal with many of the undesirable side effects of these meds including sedation, excess saliva production (aspiration risk), gum overgrowth, impaired GI function, etc.. Our goal with Nathan has always been quality of life, and since he cannot tell us what he wishes in this regard, we base our judgment on our own desires. I truly believe that he does not wish to be highly sedated all the time even if sometimes I wish I could be sedated (LOL) and even if it makes his challenges easier to bear. My heart absolutely breaks each time I look at pictures of him when he was 2. Even though his respiratory health was much worse, he had a smile that could light up a room and his eyes were open & alert a lot. He moved his arms and legs to music and coo’ed when he was happy. Now, he is so mellow, sleeps alot, and rarely opens his eyes widely or smiles spontaneously. Even if he could be more awake & alert at the expense of incremental seizures, perhaps it is worth it to Nathan to get those simple joys back. We did not make this decision lightly, but did decide that we would try to quit the medications in pursuit of getting back Nathan’s personality.

So, that brings us to the hospital. It is impractical (per our experience) to slowly wean Nathan off of anti-convulsants at home. It takes too long, and we end up over-reacting to changes in seizure activity. We decided, with the neurologist, to put him in the hospital, hook him up to a video EEG monitor for a few days while taking him off of his meds in a cold turkey fashion. The downside of this method – well, there could be a lot of downsides – status seizures, shock, withdrawal, etc. But Nathan faces most of those risks on a daily basis anyway. Now, we don’t always see eye to eye, but as an experienced Epileptologist, we do allow our trusted doctor to call some of the shots some of the time. That means we have acquiesced to let Nathan switch to one new anti-convulsant through this process and pending the results of our experiment, are open to going back on some of the meds if necessary.

As I write this blog entry, it is late in the day on Day 3 of this experiment. Nathan has been taken off of his 4 original meds, started the 1 new med, and restarted 1 of the original 4. All was going quite well until today when we dropped my least desirable 2 meds. His seizures took a fast downward spiral. I’m not happy about that, but am glad to have the information that at least one of the two was possibly providing a significant benefit. Now figuring out which of the two, or perhaps the cocktail of the two is our next challenge.

The other discouraging tidbit is that this renowned epileptologist has never seen EEG results comparable to Nathan’s. Apparently when Nathan is seizing, his brain waves become more typical. When he is not seizing, his brain waves are very jumbled like you would expect to see when you are having a seizure. Now, how does one treat that? We still know that fewer seizures means higher quality of life, but even if we stopped the seizures, his brain activity would still be pretty messed up.

I don’t know what the next 24 hours has in store for Nathan, but we will keep chugging along to finish this experiment that we started with the best possible course.

I never imagined living in this medical world. Before Nathan, I only knew of the epilepsy you see in the movies. Before Nathan, I never knew that a person could have 100 seizures a day. I never knew that you could go into a seizure and not come out. I never knew that the smartest doctors in the world have no idea how to treat it, or that my child could have brain wave patterns that have never been seen before. I never knew the most absolute gut wrenching feeling that I got today when I overheard another family get a diagnosis of "infantile spasms" for their baby. I never knew how much research is truly needed in this field and am shocked at how many people I know today, 5 years later, that have been diagnosed with one or more forms of epilepsy.

To end on a lighter note, I’d like to share some hospital humor.

1) A healthy/fit looking man in his thirties takes the last remaining handicapped parking spot, which is also the only van accessible spot in a HOSPITAL parking lot. When I ask him if he is leaving, he says “No, just got here. Borrowed the placard from my Dad so that I could get a good parking spot” as if I'd be impressed with this illegal move. Then he asks me if I’d like him to move so that I can park my van and get my child out on his 5 foot wheelchair ramp. DUH.

2) I receive a Ketogenic diet hospital meal for Nathan. The ketogenic diet is a seizure control diet which consists of ZERO carbohydrates. On the tray is a lump of mashed potatoes, a huge pile of corn, and a side dish of ice cream. I do not think that is ZERO carbohydrates. Good thing that Nathan cannot eat orally. Perhaps the hospital dietician read it wrong and thought the diet was supposed to be ALL Carbohydrates. Either way, should they really be serving all those carbs to anyone?

3) A woman pushing her IV cart and coughing up a storm asks me to hold the elevator door for her so that she can go outside to smoke a cigarette.

4) And last, but not least, 3 medication errors in 2 days. Ok – so this one is not humorous. It is a public service announcement to not let your loved ones stay in a hospital unsupervised.

Well, that's it for now. Nathan has stopped seizing now for what I hope to be a good nights sleep. Good night to all.

Nathan's Recovery

It's taken me awhile to write an update on Nathan. He has been recovering quite well from his surgery two weeks ago. In fact, as of tomorrow, he will no longer be under any physical restrictions (imposed by the surgeon, that is). His incisions look great, considering. The first few days were rough as he had a tough time keeping medications and food down, and he ran a fever on and off for about a week. The worst part was removing the bandages after 4 days. They were stuck so tightly to his skin, that I think the pain of removing the bandages was as bad as the pain of the incisions themsevles. Since then, he has been doing amazing - he's such a trooper for what he goes through.

The VNS was turned on to a low constant voltage on Day 2 and will be increased every 1 to 2 weeks for the next couple months. The neurologist continues to tell us that we may not see any improvement for 6 months to one year, or even two years. That is a long time to wait to see improvement or even know if this was successful. But, we went into this all knowing and understanding that the success rate is not high for Nathan's type of epilepsy. We will just continue to hope and pray. There are other side benefits that may show over time such as improved behavior or mood and increased alertness. For now, his seizures are the same as they were before. Some days they seem worse and some days slightly better, but that is how it has been for the last six months.

The biggest challenge now is trying to find a rehab vendor to help us get new wheelchair straps for Nathan. The vendor that my insurance company switched to this year would see nothing urgent about a house burning down. Our earliest emergency appointment is still 2 weeks away. I was able to get my insurance company to agree to let us go back to our old company for his existing rehab equipment, but apparantly they don't want our business. After 2 weeks of phone calls and emails offering to pay cash, I cannot even get any response. So, in the meantime Nathan has to use inappropriate constraining straps. We have modified them a bit ourselves, but he really needs some that do not pull tight across his incisions or his newly implanted device. His only method of transport is by riding in the wheelchair in our van, so it is not an option to leave him out of the wheelchair in the meantime. What a frustrating industry!!!

We are now turning our sites to a much needed family vacation to Disneyland in early June. The last trip to Disneyland was wonderful for Nathan, his disposition, and his seizures. We look forward to another fun filled adventure. More to come on that later.

As always, thank you all for your kind words, prayers, and support as Nathan went thru this procedure. It is some higher power that keeps Nathan going and you are all part of that for our family.

Nathan's Post Op

Dear Friends & Fam,

Thank you all for your prayers and well wishes for Nathan. He made it through his surgery today like a champ. Everything went smoothly including the surgery occuring on-time despite an afternoon slot. The surgical procedure was a success, assuming all heals well. The success of the VNS will not be known for some time. We will have the device turned on tomorrow by the neurologist and will see where we go from there. We could see results soon, after a year, or not at all. I'm going to take the rainbow we saw on the drive home as a good sign that there is pot of gold at the other end of this journey.

We are thrilled with how today went. Anethesia is very scary for Nathan, and it went very well. He was taken off of oxygen about 1 1/2 hours into his post op recovery. Although he did not want to wake up for a very long time, we finally got him roused enough to bring him home. He's doing okay so far. He is very tender in both of his incision areas and unfortunately vomitted up his pain & seizure meds tonight at home. Hopefully we will be able to get some more meds in him in a few hours and keep them down.

We encountered some wonderful nurses and doctors today and were especially thrilled with the child life specialist that brought Nathan a CD player to listen to while waiting to go to surgery. Such a nice touch in the hustle & bustle of a hospital.

We are also so very touched by all the prayers and well wishes from all of you. Thanks to all of you of and an extra special thanks to Amy & Barb for taking care of Madison & Zach this evening.

We will post more when we know more.