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.

April Update

Happy 5th Birthday to Nathan. Wow – it’s been an amazing five years for the little man. His birthday was over one month ago, on March 1st, and I’ve been meaning to post about his general well being and birthday ever since.

Nathan’s birthday celebration was pretty low key as he was still sick. As usual, we celebrated his birthday with the McCue clan. We also had a very nice visit with Auntie Glo from Indiana a week before his birthday.

Nathan was sick for 2 months starting in January, but dare I jinx it to say that he is doing better? He was on oxygen for 2 months which was a really long stint. We never got a real diagnosis or cause of his symptoms despite millions of tests. Ok, maybe not millions, but it sure felt like it. He would spike a really high fever every 2-3 days, was incredibly lethargic, and had constant low oxygen saturation levels. We ruled out pneumonia, and a host of other infections. So, we rode it out like most of his challenges and we are now enjoying his sweet disposition again.

Unfortunately the seizures are still really bad. Maybe worse than before the illness. It’s hard to tell. We took him off the new seizure med he started (the one with blindness as a side effect). We didn’t think it was helping and the timing coincided with his illness. Not saying there is a correlation, but definitely a coincidence. After we stopped the med, he began to get healthier. We may try it again down the road, but not right now.

Nathan's big news is that we finally have his surgery to implant a Vegus Nerve Stimulator (VNS) scheduled on Monday. Yikes! That's in just 2 more days. The procedure should be pretty straightforward (for a neuro-surgeon, that is), but the anesthesia is always scary. And then there is the risk of infection. And then he will have a device implanted in him forever. We so hope it works. This really is the last available option we have for seizure control at this point in time. We’ve done everything else and hope that if this does not work that medical research will progress to the point that we have a better treatment for epilepsy in Nathan's (and so many other children's) lifetime. It is so incredibly heartbreaking to watch seizures take away a little of someone's congitive development and life day after day.

We would appreciate your prayers and well wishes for a safe surgery, speedy recovery, and most importantly to Nathan - improved seizure control. He is very blessed to have so many people that love him in his life (and so are we). The surgery is scheduled for 1pm at Sutter Memorial Hospital on Monday.

Thank you as always....

I’ll post sometime after the surgery to let you all know how it goes.

February Health Update

Just a quick update in hopes that sharing bad news will turn our karma back around. Just a few days after I posted the last blog gloating about Nathan’s good health, he became ill requiring constant use of oxygen, suctioning, and TLC. The urgent care docs initially diagnosed him with pneumonia, but the pulmonologist disagreed. So, we put him through painful shots of Rocephin (1 in each thigh) at the urgent care center and then put him on another antibiotic which caused horrible diarrhea - all for nothing. Turns out he has a bad bronchial virus which has landed him back on constant oxygen and landed me back in battle with Apria, our DME provider, to get oxygen delivered, fix Nathan’s malfunctioning pulse oximeter, and deliver his other needed respiratory supplies. Arggg!

In the meantime, we started the new seizure med (the one that can cause blindness). My mental timeline was to give it 1 month and if there was no significant improvement we would take him off of it to preserve his vision. It is impossible to reach any conclusion when Nathan is sick as the seizures are usually much worse when his body is stressed. So, while Nathan has been battling a fever on and off, he has also been battling absolutely miserable seizures. In between, we will have a good day where we see only very small tonic seizures and think that the new drug is working. But my conclusion after 2.5 weeks on the med is that I have no idea if it has or if it is going to help at all. We don’t want to throw in the towel without good data, so I guess we will have to leave him on the med for longer to monitor.

Lastly, many of you have asked about Nathan’s surgery. It was scheduled for today – Feb 1st. But the illness has set us back at least one month. He will not be cleared for surgery until he is off of the oxygen for several weeks. No one knows when that will be since rebounding is tough for him. We will wait and see and keep all of you posted.

Oh – and one last complaint while I'm venting. My health insurance company dropped the Rehab company that has provided every last piece of rehab equipment for Nathan – wheelchair, hospital bed, shower chair, gait trainer, stander, etc. for the last 5 years. All of these items require constant maintenance and adjustments by trained technicians. The company we were working with was not spectacular, but it will not be easy to start over after 5 years. Nor will it be easy to obtain maintenance on our current equipment. I tried to schedule a wheelchair adjustment last week for his armrest that is jammed only to be told that the earliest will be mid-March. Huh?? Are they serious?? What about Nathan's arm?

WHO MOVED MY CHEESE?

Please keep Nathan in your thoughts and prayers for a rapid recovery / seizure improvement and me for the strength and patience to deal with all the health care bureaucracy while worrying about Nathan every second. Thanks for tuning in and following Nathan's journey. Nathan is blessed to have such a supportive network of friends and family.

Happy New Year

Happy New Year, Friends! Nathan’s blog has somehow turned into an annual update - our last update was right after Nathan’s 4th birthday and he will be turning 5 in just another month. Wow! The good news is that we have not had much bad news to write about it. So, what better way to start the New Year than to reflect on the blessings we have had through 2009.

Nathan had an entirely hospital-stay free year. Yippee. Nathan has remained stable in most every medical facet this year. He has also grown a lot. At 40 inches and 35 pounds, our everyday life keeps getting more challenging as he still does not help with any weight bearing or shifting. Nathan probably had a few mild & undiagnosed pneumonias in the past year, but nothing that made the radar screen. He was suspected of having the H1N1 virus, but he came thru it like a champ. And since the diagnosis was unconfirmed, we even took him to wait in line with the rest of Sacramento at a county clinic for the H1N1 vaccine (which is another story that I won’t even delve into). Despite a significant worsening of his bone density and a severe osteoporosis label, Nathan has not fractured any bones this year. And although we still carry an oxygen tank with us everywhere we go, he has rarely had to use it except when ill and while sleeping. I’m afraid to unbolt the tank from his wheelchair in case that jinxes us into needing it. His apnea has worsened, and the docs are considering removing his tonsils and adenoids to help his breathing. We will be doing some more tests to determine if this would be beneficial. Nathan’s hip dislocation progression has slowed down which means we are still holding off on any major hip operation. We will continue to re-assess every 6 months, however he is already sitting sideways crooked and one leg is longer now due to the amount of subluxation of his left hip.

Despite all the good health karma we have had this year, the one constant that hangs like a dark cloud over us is Nathan’s ever worsening seizure disorder. Nathan will experience a few good weeks on the seizure front (which means <20 seizures per day), but then he will have multiple bad weeks of up to 100 seizures per day. This seizure disorder (Lennox Gastaut) has a nasty reputation and seems to live up to its name in Nathan. All the functional gains Nathan makes seem to get wiped out when the seizures escalate. Our lives often feel like the movie “Groundhog Day” – the same thing over and over. Or one step forward and two steps back which is worse than Groundhog Day.

On the cognitive front, Nathan has been using an access switch placed next to his forehead for about 6 months now. This has been really cool to see progress. He uses this to activate adapted toys so that he can finally control (or play with) toys on his own. Unfortunately the selection of adapted toys for his functional level is not very diverse or exciting and is incredibly expensive.. He had initially started using his hands to push a hand switch, but he no longer has the strength to lift his hand, push a button, and release the button which are all crucial steps required to use a hand switch. Nathan also recently started using a communication device called the “Cheaptalk” for his school. I wish I could say this was working well, but it really is not yet. The device itself is not the most intuitive and every time you want to change what you are doing, it requires re-setting the mode and messages. We are trying to use it to help Nathan learn to make choices between two things or activities, but he still has a long way to go. We know that Nathan understands a lot more than his body allows him to convey so we just keep trekking along giving him the benefit of the doubt. For awhile Nathan was regularly responding to the phrase “I Love You” with a 3 syllable response that sounds like “I OOO UUU”. Unfortunately, this response is not as forthcoming now as either he is becoming an independent almost 5 year old or his vocalization skills are deteriorating from the seizures. I know it is the latter which breaks my heart every day. Nathan continues to absolutely love being read to, talked to, snuggled, and listening to all sorts of music (and especially his music therapist, Anne). He also enjoys walking around in his gait trainer even though he still needs a lot of support and assistance to make much traction.

We have finally made two gut wrenching decisions for Nathan’s course of seizure treatments. We plan to put him on a medication (Vigabatrin) that causes peripheral blindness. It has been offered to us for 3 years as a medication that holds the most hope for seizure improvement. But for 3 years we have declined it because Nathan’s limited vision is his peripheral vision. We have finally reached that desperation stage. Nathan will start this medication tomorrow when it arrives in the mail thru the FDA controlled pharmacy. The 2nd decision is that he will be going through surgery in a couple weeks to implant a Vagus Nerve Stimulator (VNS). This is a device that is implanted under the skin which delivers electrical stimulation bursts to the brain via the vagus nerve every few minutes – similar to a pacemaker for the brain. We have delayed on this option for a few years also as the neurologists can only predict a best case seizure improvement of 20-30% and it requires a surgery with all the standard surgery / anesthesia risks. Again – I can only say that we have reached that point where we feel that any upside is better than where we are at, even weighing the heavy costs.

The other good news for the year is that we are no longer battling with the school district (that is at least until next school year). We finally hired a professional advocate after fighting an uphill battle on our own for a year and a half. I think a combination of our advocate, the districts’ past blatant disregard for upholding the special education laws for Nathan, and a turnover in administration/staff enabled us to create an improved IEP (Individual Education Plan). There are many other options that we would like for Nathan, but for now we are pleased that the district finally provided assessments whose results semi-accurately reflect his abilities. Based on these results, we now have him on a “Home Hospital” program where his teacher, speech, occupational, and physical therapist all come to our home to work with him. Although it is sad that he no longer gets the benefit of the social interaction at school, he is much more alert during his education sessions and is getting so much more out of it. It is personally tough having so many people parade through our home every day of the week, but the benefits for Nathan are worth it.

Throughout everything, Nathan maintains the most easy going and sweet disposition. He is so accepting of new people in his lives – therapists, teachers, doctors, nurses, etc. and rarely complains except when he is ill. I wish I could say the same about myself (LOL). Madison and Zachary are both adjusting well too. Zachary has finally transitioned into a “big” brother role with Nathan where he is becoming protective and helpful. He loves to run wild with Nathan's wheelchair and we always have to keep an eye on what danger sport Zachary may enlist Nathan in when he is on wheels. Perhaps one day Zachary will run marathons with Nathan in tow. Madison is still extremely nurturing and supportive of Nathan. She is always cheering him on and will hang out with him for hours trying to entertain, make him smile, or help him play with a toy. She is convinced that she wants to grow up to become a "special needs teacher".

Our lives continue to be an amazing journey with Nathan for all the challenges and all the rewards. Thank you all for being part of that journey and for your thoughts, prayers, and cheers along the way. We will try to update after Nathan's surgery.

Birthday Reflections

As usual, it has been a very long time since our last blog entry. Things have been busy in the McCue home - juggling the 3 kids, jobs, and all the extra-curricular activities. We'll try to catch everyone up on the highlights of the last 6 months in this entry.

The last two weeks have hosted 2 birthdays in the family. First, Madison turned 8 last week and celebrated with a "Rock Star Slumber Party" with friends. It was the first sleepover party for Madison as well as Mom and Dad, so there was some concern (fear) heading into the party. But, the girls were too busy with the new karaoke machine, Twister game, and High School Musical 3 DVD to be too much trouble. They outlasted the parents well into the night, but a good time was had by all.

Yesterday, we had a family celebration for Madison and Nathan. Nathan's 4th birthday is today. We had a nice day with Uncle John, Aunt Kelley, cousin Jennifer, Grandma, and Pop at the house. Nathan took a brief snooze during the gathering, but was awake to open/receive many new CDs to enjoy for a long time to come. Nathan's favorite activity continues to be music so he really enjoys receiving a variety.

It is hard to believe that we are celebrating his fourth birthday when many of his first doctors did not expect him to celebrate even one. Apparently, those doctors were not considering Nathan's will and wonderful support group which includes family, friends, therapists, and even people who hardly know him. We are so grateful for all of the help, thoughts, and prayers that have helped our family get to this point.

So, getting to Nathan, it has been a LONG time since we have posted any news about his health or status. He has set an amazing record by staying out of the hospital for 8 months. I have to be careful not to jinx anything (my track record of posting good news in the blog is not very good), but this has been a good run. He has had a few upper respiratory infections and other unexplained illnesses during this time, but we are usually prepared for those and they were not too serious. Unfortunately, he did spend his Christmas break sick and is now fighting some bug that makes it tough for him to really enjoy his birthday.

We still have not had success controlling his seizures and the frequency of the seizures continue to wreak havoc on his strength development and retention. He has had a few really scary seizures that make us stop and wonder what may happen next. We don't have any promise of new or different treatments, but there is a new seizure med on the market that is targeted for his type of seizure disorder. His neurologist does not hold out much hope that this would work, but it something we may try. The most recent visit to Shriner's Hospital determined that his left hip continues to sublux and is likely to be completely dislocated within a year. There is a strong likelihood that the right hip would be next to go, too. Additionally, his bone density is still a concern. They are fairly brittle and the lack of weight-bearing on his legs keeps the bones from strengthening despite efforts to build strength with his stander and gait trainer. We will keep working him on this equipment, of course, in the hopes that he can improve his weight-bearing to supplement all the calcium supplements he gets daily. The one upshot of the hip issues is that Nathan's low muscle tone seems to have kept him from experiencing pain from the dislocation (at least, as far as he has expressed to us). We are also very excited that Nathan is now using a gait trainer and absolutely loves it. He is not exactly walking in it, but he does lift his legs as if he is trying to take steps independently. Very Cool!

The other major bummer of late has been our seemingly futile effort with the school district. It is too complex to explain it all in this blog, but we continue to spend a lot of our energy just trying to get Nathan the bare minimum services and to hang on to his private nursing. We may end up not having him in school, which is too bad because he does really enjoy it. I was hoping that the school district would employ the trained professionals that could help us develop his speech & communication skills, among other things. But it was clear to us in our last annual review that the school specialists that have been working with him for one year, do not even understand his current abilities to communicate, recognize cause and effect, and his love for using his vision to look at books. The cool thing is that we do know that Nathan has these talents and is really trying to communicate with back and forth vocalizations, using switches, and expressing his likes / dislikes. It may be up to us to develop the rest over time.

Well, that's it for now. Nathan's birthday is usually a time of reflection for us - for the blessings we have with him, for his wonderful network of supporters, for his health (both good and bad), and for his developmental milestones (also both good and bad). Thank you all for being part of it.

Much Love, The McCues

What's Up With Nathan

This entry is all about Nathan. Many of you have inquired so I figured I would just write a complete Nathan blog update to catch everyone up on his life.

I’ll start with health. Nathan has had a fairly healthy summer with just three or four URI’s. The early summer fire season in California this year was rough on his respiratory system. The very smoky air caused him to spend more time on his home oxygen, but we’ve learned to keep him indoors when the wind blows. He started pre-school a few weeks ago and came home from his 3rd day with a 104.5 fever. Usually this is very bad news (read pneumonia). The doc diagnosed him with a sinus infection. I don’t know if I completely agree, but he was fighting some infection and his course of antibiotics seemed to take care of things. He stayed home for a few days and returned to school ready to learn. Aside from a runny nose and occasional fever since, he has been doing well.

Next – his seizures. This felt like a losing battle until about 2 weeks ago. All summer he had good days and bad days, but a lot more bad than good. He went back to greater than 50 seizures on a typical day, including adding a few new types of seizures to his repertoire, consistent with his syndrome’s prognosis. Nathan’s ketosis state has only returned in the last two weeks, so it is too soon to tell if it will stick yet. It took many months to get to ketosis when he first began the ketogenic diet, and then it took several more months to reap the seizure benefit. Bottom line – this is a never ending game of watching and waiting. He did have a great low-seizure week when we went to Huntington Beach and Disneyland. We’re not sure if it was the weather, the fun, or something unrelated, but we may have to move to Huntington Beach someday. About 2 weeks ago, his seizures did a major turnaround – perhaps related to his ketosis state. We are only seeing about 3-5 grand mal seizures each day along with a handful of absence seizures. I try not to jinx it by talking about it too much. And we really don’t know what has triggered the change or if it will last. It could be that he is in ketosis, better respiratory health (for him), the new mulit-vitamin he started (hooray for bugs bunny sugar free vitamins), stopping his allegra allergy med, or something else. What we do know is that we will definitely cherish every day and moment that he is seizure free (or anything less than 20 per day).

Now the bad news – his bones. Nathan was diagnosed with osteopenia after an x-ray of the lower GI system for an unrelated issue in June. The endocrinologist ordered a dexa scan even though they are not calibrated for children under 6. The dexa scan diagnosed osteoperosis which basically means he will easily break his bones. This is not what we want to hear, especially since Nathan has such a hard time expressing pain. As we learned when he broke his shoulder, he will not let us know specifically where the pain is, nor when it starts or stops. The treatment options consist of increasing his calcium & vitamin D intake as well as other meds or IV therapy. We will start the increased calcium/vitamin D this week after we receive the expensive “no sugar/carbs” version via mail order. We will wait to consider the other treatments. We have also now seen a few surgeons for his subluxed hips. The prevailing recommendation (1st, 2nd, and 3rd opinions) is to have a femur osteotomy which is the MAJOR surgery I mentioned a few blogs ago. It is such a tough decision, but we have temporarily decided to NOT put Nathan through such a rough surgery and 10+ week recovery in full body spica cast. One of the surgeons asked me if I could live with my decision if he did not make it through the surgery or recovery. That pretty much sealed the deal. She also said she was not sure she could live with herself if he did not make it through the surgery. Sorry, Doc – but your record and feelings are not my concern, although I get your point. We had new x-rays taken last week which showed that there has not been any worsening of the hips in the last 3 months. This is positive. Our overall goal for Nathan is pain avoidance and thus far, we don’t think has pain. We did spend 4 hours last Thursday getting x-rays and visiting doctors because we feared that he had broken another bone. He was (and still is) in pain from something that is intensified when he is “transferred” or lowered into his bathing chair. It is probably just a strained muscle as the x-rays showed nothing wrong, but something else to worry about.



The exciting updates - Nathan’s education / cognitive development. Nathan’s classroom got a new teacher this year that seems wonderful. She treats the children and parents with respect and has a curriculum geared towards the children’s cognitive and physical level. Wow! Nathan seems very energetic and engaged at school and still loves to ride the bus. He continues to say “ma-ma” and will occasionally grunt “yea” when you ask him if he wants something. Last week, his music therapist swears he said “arm” as she was engaging his arms in the music curriculum. This is all exciting stuff. When you walk away from him, he hollers out (he is showing a bit of his toddler side, now). And the other night during dinner, both Madison and Zachary were making funny noises and misbehaving. As Jim and I were trying to settle the other two, Nathan joined into the noise making session. I know all of this probably does not sound so exciting to many of you, but to Nathan and us – it is HUGE to see the cognitive side shine through the body that does not cooperate. The downside of his education is that the school wants to take away his home nursing. It is too hard to explain how/why in a couple sentences, but it is very possible that we could lose our home nursing if we continue to send him to school. So, unfortunately, if it comes down to school or nursing, we will have to pick nursing and keep him home. Wish us luck as we pursue what is likely to be a long battle…

And while we are on the topic of nurses, our Friday and occasional respite nurse took a new job somewhere else. She will still work occasionally, but we do not have any nursing on Fridays or on “predictable” evenings right now. Nathan is very attached to her and we miss her greatly, even though the new job is better for her. It has not impacted our lives yet since I have been off from work this summer, but it will be a big deal when I return to work next week. We did train a new nurse this past Friday, so we are crossing our fingers that she works out (we’ve trained some before only to have them never return).

Well, that is Nathan’s update in a nutshell. Hope this update finds you all well. Thank you for reading and caring/cheering for Nathan.

Just Monkeying Around

After returning from our Indiana trip, we decided to embark on a project to provide a play structure for the kids in our side yard. Research into available products showed that plenty of monstrocities that include castles, forts, and climbing walls are available to take up an entire yard. It also showed that the cost of buying a simple monkey bar/swing combo is not practical.

So, Jim drew up a sketch/plan to build a play structure and consulted with Pop. After some minor tweaks to the design and despite the lingering doubts from Tricia that the pair could build a structure that would hold up without getting hurt or breaking the structure in disgust, it was "go time." The July 4 weekend was the proposed building time.

Saturday morning involved buying lumber, pipe (for the monkey bars), hardware, and an assortment of "swingset supplies." Then, the hard work started. The bars were assembled on Saturday and most cuts were made in preparation for assembly on Sunday. The second day saw the project come together. And, with some help from friends and neighbors with heavy lifting/holding, the play structure was completed on Sunday evening.

Big thanks go out to Pop (Jim's dad) for his help in the design and construction and for providing the tools (and some of the liquid refreshments) for the project. The kids love the play structure (Zach might warm up to swinging soon) and Madison and Nathan have enjoyed the swings immensely. We have even had friends over and the structure is holding up fine for now.

Planes, Trains, & Automobiles (or Wheelchairs)

Nathan has had a lot of excitement since May. He finally recovered from his last pneumonia and broken shoulder, although he has still not gotten back into ketosis for seizure control. He started summer school for a few weeks, and then we went to Indiana to see the Axsom family. Of course, it was quite an adventure, as everything in Nathan’s life usually is.

We chose to fly Frontier airlines to Indiana since they had the lowest fares and what we thought were the best flight times. For future reference, Zachary does not like red-eye flights. But, Nathan thoroughly enjoyed the airplane ride and especially liked the personal tv screen in front of him which flashed constant advertisements. He cooed most of the ride. But, what we expected to be the end of our rough night en route with 3 kids, ended up being just the beginning.

The airline busted Nathan’s wheelchair. Nathan’s wheelchair is more than a chair – it is his livelihood. The chair helps him to sit upright and hold his head up – two things he cannot do on his own and both critical for his health and safety, not to mention comfort. It is also his transportation. We knew that flying with his chair was a risk, but we had done it once before and really had no other choice. The most surprising part was Frontier’s complete disregard for the damage they did to his chair including an attempt to “cover-up” the damage. The story gets even more disheartening as the Frontier manager in charge at Indianapolis shrugged us off – telling us to leave our info with an associate because she had many other customers that she had to attend to. The best response we could get was that we had to leave the chair at Indianapolis and they would call us when they weren’t so busy. Yet there was no commitment to fix it, pay for fixing it, or acceptance of accountability for the chair. They also broke the handles off of Zachary’s stroller and told us that stroller damage would not be covered. It is now 4 weeks later and we still do not have it resolved with Frontier although we did get it “functionally” repaired the week after we returned.

I won’t bore you with the details of our next several days of logistics, other than to give a positive plug for an amazing rehab equipment company in Ft. Wayne, IN. Hamilton HAS went above and beyond in customizing a “demo” wheelchair (Kidcart) for Nathan’s use for the week. They did all this for a nominal labor fee since we did not know if Frontier was going to cover our costs. Midwestern hospitality was at its finest with these genuine people who really cared about the child and not the money. The chair was not ideal for Nathan’s needs, but it was an acceptable stand in – and certainly better than we expected given our situation.

Unfortunately, the next day Nathan’s feeding pump malfunctioned. This is his life support. He cannot eat through his feeding tube without a feeding pump and therefore this problem is classified as an emergency (at least in my book). It is too bad that Apria employees in the Midwest do not have that same Midwestern hospitality as the wheelchair company. They give the same shoddy customer service they give in California. Again, I won’t bore you with the details - after 10 hours of phone calls we did finally get a replacement pump (with a bad battery back-up). We chalk this up to more of Nathan’s (and my) daily trials and tribulations.

So, on with our vacation (vacation, yeah right). We did manage to have a nice time visiting friends and family. It thunder stormed just about everyday that we were there, so some of our plans did not pan out. But we did get to spend a lot of time with my sister (Auntie Glo), brother-in-law, and parents which was the real purpose of the trip anyway. The kids all enjoyed real Midwestern thunderstorms (and lawn mowers). We visited a very cool science museum one day and enjoyed a few down home “cook-outs”. Nathan stayed healthy which was our biggest wish, even though he missed his creature comforts of home and his nurses. The trip ended successfully with an uneventful return flight and with Nathan ecstatic to see Sandy, his nurse, again. He cooed for hours once reunited.

Well, since it has taken me so long to write this update, I will wait to post an entry with the highlights of our July trip to Disneyland & the beach at a later time. Oh, and if you have not already, check out Jim's entry below about his whirlwind getaway with brother-in-law Kevin during our Indiana visit.

Love, the McCues

Fighting Irish and Betting Indians

During our trip to Fort Wayne, I (Jim) had a chance to get away for about 24 hours with brother-in-law, Kevin. On Friday afternoon, we headed northwest from Fort Wayne to South Bend where Kevin’s mother, Midge, provided a rapid-fire tour of the Notre Dame campus. Her “hang tag” helped with parking and access into a couple of administrative buildings and her knowledge of the “lay of the land” allowed for us to see lots of things in a short amount of time.

We started in the football building where my appointment with Irish head coach Charlie Weis was not found by the receptionist (the communication for the meeting was as successful as the 2007 Notre Dame offense), but we saw his patio and then went on to the larger facilities that house the National Championship trophy, Tim Brown’s Heisman Trophy, and an enormous weight room for the players.
From there, we hit the Joyce Center which houses the Irish hockey team’s home ice as well as the basketball arena. Inside the facility is also the Notre Dame Sports Hall of Honor, which houses past uniforms, awards, photos, and plenty of other memorabilia from the glory days. It was pretty awesome to see sections honoring Knute Rockne, Heisman Trophy winners, national championship coaches and teams, and even some honored athletes from other sports programs at Notre Dame.

Sports turned to art as the tour took us to the main administration building which sports the legendary “Golden Dome.” The interior is amazing with murals and a stunning rotunda. All of the art and history housed in a building that makes the university go on a daily basis seems strange when one thinks of all of the technology to keep a school running in the 21st Century.

The next stop was the basilica, an amazing church that reminded me of the basilicas in Europe. From the large central portal where mass is held to the big pipe organ and ornate pews, the basilica was an intimidating building that seems to humble visitors who enter. Sticking with the religious theme, we then walked over to the Grotto. A very spiritual setting, the Grotto is like a half-cave that houses rows and rows of candles that are lit in prayer or memory of loved ones, friends, and others. It was a powerful experience walking by the candles and taking in the atmosphere with cards and pictures of loved ones left by people after lighting their candles.

After that experience, the stadium and bookstore harkened a shift from the Catholic Church to the Church of Football and Merchandising. Shirts were bought in hopes that the atrocity of the 2007 season is an aberration as everyone is now unbeaten again. The final stop outside the stadium was along the grass leading to the Hesburgh Library building that hosts “Touchdown Jesus” on its side – a Notre Dame icon almost as well-known as Rockne.
In all, the 2 hours on campus were awesome, especially considering that we covered so much ground and just about all of the important landmarks at Notre Dame. Having spent four years at a much newer university (Pepperdine’s Malibu campus opened for student enrollment in 1972 whereas Notre Dame was established in South Bend in 1842), the architecture and ambience were an obvious throwback to a different time and a very different collegial atmosphere.

The tour concluded, we headed back to Midge’s apartment to prepare for the next phase of our adventure – the Four Winds Casino Resort. The first stop was at the home of Kevin’s brother, Wayne, just a short drive away near South Bend in Granger where cold beers awaited before changing cars and hitting the road again (Kevin and I had the beers and Wayne drove). Our road trip took us north into Michigan and then west along the Michigan border to New Buffalo on the shore of Lake Michigan. We ventured down a road to view million dollar homes on the lake that look out toward Chicago (if the weather was better, we might have been able to look across the lake to see the Sears Tower and downtown Chicago) and the million dollar views of the lake.

As it was, we concluded our trip into the neighborhood and headed to the casino. The Four Winds Casino Resort is a luxurious casino and hotel opened in August 2007 by the Pokagon Band of Potawatomi Indians (http://www.fourwindscasino.com/). Nestled in the woods of New Buffalo, it boasts a large gaming floor (it would be the third largest gaming room in Las Vegas) and a great atmosphere. I hit the Pai Gow table and spent about $20 for a few hours of entertainment. We also feasted at the Copper Rock restaurant (try the prime rib, it’s delicious) before heading back to Granger to finally end the day’s travel.

On Saturday, after a hearty breakfast, we concluded our South Bend get-away with a trip to the National College Football Hall of Fame. Packed with memorabilia, displays, and interactive exhibits, the HOF captures the history of the college game and the legends that played it. The evolution of equipment, uniforms, players, coaches, and the way people enjoy them is displayed in great detail and in a manner that is easy for the casual to die-hard fan to enjoy. My only complaint is that the HOF had no display or mention of George Pepperdine College’s 38-13 victory over Nebraska-Wesleyan in the First Annual Will Rogers Bowl Classic in Oklahoma City or of the school’s undefeated 1947 season.

Home Again

Nathan got to come home from the hospital this evening. Yippee! He is doing fairly well and we are really excited to be home. Juggling the other kids, work, sleep, meals, and the rest of life is just so difficult when Nathan is in the hospital.

After a few more tests, we determined that Nathan does not need surgery, now. We will keep an eye on the hernia and hope that it does not get worse. It is not predicted to get better, but it may or may not get worse. The big downside of this type of hernia for Nathan is potential for increased reflux. And for Nathan, that means increased risk of aspiration, more pnuemonias, more discomfort, etc. But the other tests show no significant risks at this time which is better than the downside of the surgery options.

The infection (whatever it was) seems to be mostly gone. His fever has been gone for more than 24 hours and he has not required supplemental oxygen all day. His spirits are back up and he is chatting loudly in his own bed as I type. I believe he is out of the woods with this illness, although it feels like we've all lost another 2 weeks of our lives. Somehow we made it to Madison's first performance in a school play last night (thanks to Nathan's wonderful nurses who stayed with Nathan and babysat Zachary).

We did have a couple problems during this hospital stay. The first was a medication snafu. It is our first issue at this hospital which is very dissapointing. By last night, I had gotten too comfortable in the staff to do things right for Nathan that I did not give each nurse the full line up of questions before every med was administered (which I usually do). Yesterday, the docs took Nathan off his IV meds and switched to oral meds which we dispense thru his feeding tube. Since Nathan is on the "no carb" ketogenic diet for seizure control, the medicines that he receives cannot have any carbs (sugars, etc.). We were so careful to be sure that the barium in the barium swallow test and everything else dispensed to him through the week was carb free. But somehow the oral meds they swithched him to last night contained sugar without our knowledge. Nathan's seizures were sooo bad today. After his 3rd dosage of one of his meds today, I accidently pulled his feeding tube loose and the meds spilled on me. My first thought was concern that he would miss that dose. But my 2nd thought was - hey, that smells & feels like sticky sweet medicine. So, I questioned the nurses, pharmacist, & doctors only to find out that they all made a mistake. Ok, so this was not a life threatening mistake. But it is a huge mistake to make for a patient who is getting some or total seizure control on the keto diet. This is the one hospital in the Sacramento area that actively prescribes & monitors this diet. For Nathan, we don't know how out of balance this will send him or for how long. He's only recently started getting the benefits of a ketotic state, so we don't know how hard it will be to get him back. Lesson learned for our next visit never let my guard down, even for a sleep deprived second.

The 2nd problem that happened was that his broken shoulder worsened. He had been pain free for about one week when he went to the hospital, but he is now in pain again. The painful crying first occured when a nurse was changing his nightgown and was moving the right arm. I thought she might have injured it accidently, so I had the hospital re-xray it to see if had fractured again. It turns out that the fracture has not changed at all on xray. This means that the fracture had not recovered as it should have after 2 weeks. Why the pain suddenly came back is inexplicable, but he sees the othepedist on Monday so we will hopefully understand more then.

On the upside, our excitement for the day was meeting Celebrity Tyler Hilton. I did not know that at the time, but he came into Nathan's hospital room and sang/played the guitar. I thought he was a volunteer musician/therapist making the rounds to cheer up patients, but after he came in and started singing, a crew came in behind him with cameras and releases to use Nathan's pics for PR purposes. If you don't know who I am talking about - he is on the show "One Tree Hill" and he also played Elvis on Walk The Line. It's sad to say that I'm either too old or too out of mainstream culture to have a clue who he is. His music is very good, so maybe someday Nathan can say he knows a superstar. Nathan got an autographed picture as well, which we will hang on to just in case.

Thank you all for your prayers and phone calls and emails. We couldn't make it through all the ups and downs without you in our lives. Nathan has a wonderful cheering team that makes his spirit stronger.

Until we write again....

Mystery Diagnosis Part II

Well, the plot thickens. We have some answers, but also more questions. Nathan does have a hiatal hernia. And for those of you (like me) that wonder exactly what that is, I've copied the definition from webmd - "A hernia occurs when one part of the body protrudes through a gap or opening into another part. A hiatal hernia forms at the opening in your diaphragm where your food pipe (esophagus) joins your stomach. Part of the stomach pushes through this opening causing a hiatal hernia".

Cause unknown. Impact unknown. Next steps - unknown. Reason for fever & high white blood count - still unknown.

As we have learned thru our hospital stays, there is often lots of talk about many different courses of action before there is ever a true recommendation. For those that are weak of heart, it is a tough road. Luckily, my typical worrisome self has somewhat mellowed thru the last 3 years. I kind of just wait until the doctors get to their own recommendations - bringing in all the various experts and then balance that against our family wishes. Nathan has been 'threatened' with many surgeries thru the last 2 years. For this hernia, one doc thinks he needs surgery and another doc thinks he does not. Typically, surgery would not be done for this type of hernia, but opinions change when an immobile child with feeding tube and cerebal palsy is the patient. So, we will wait this one out to see where it leads us.

In the meantime, the family is hanging in there. Thank you all for your prayers and well wishes. It means a lot to Nathan and the family.

Mystery Diagnosis

Dear Friends,
Sometimes I feel like our (or Nathan's) life should be captured on a "Mystery Diagnosis" series. Nathan is back in the hospital, this time with another unknown problem.

To catch everyone up, Nathan's pneomonia worsened last week. Last Friday we were sent to the hospital by the pediatrician, but then sent back home with different medications by the pulmonary doctor. On Monday, we had a checkup with the pulmonologist who agreed with our assessment that Nathan was recovering as expected. But on Tuesday afternoon, things took another turn for the worse. His fever spiked sky high again along with a lot of other symptoms. Tuesday night was rough. Then, yesterday morning we took him back to the pulmonologist. He sent us all over town for blood tests, stool samples, and chest x-rays. After 4 hours of testing and running around, we went back to the doctor to review the results. According to his chest x-ray, it appeared that Nathan's stomach was in his chest wall on top of his left lung so he sent us straight to the hospital.

Now, another 15 hours later, we are in the ICU at Sutter Memorial hospital (our home away from home). All of his tests thus far have stumped the docs. His body shows lots of signs of infection, but no more evidence of pneumonia. A GI doc will be performing a barium swallow study on him in a few hours to verify or rule out a hiatal hernia (which is the most probable theory they have right now). The hernia should not cause fever/infection, so perhaps he has something else going on, too. A surgeon is also coming in for a consultation this morning which I guess suggests they think surgery will be on his agenda one way or another.

Anyway - please say a little prayer for Nathan for a speedy recovery (and a not so bad diagnosis).

I just discovered wireless in the hospital so as we know more I will post updates.

Love, the McCues

Get Well Wishes

Well, as I mentioned in last week's udpate, Nathan's good news is usually hampered with some not so good stuff. Somehow we seem to jinx ourselves when we share the good news. Nathan broke his shoulder last week. I wish we could say that we know how, but we really don't know. It could be from routine physical therapy, contractures, or even a seizure. The break is in a strange place for a typical movement, but it is what it is and now he must recover from it. He first started letting us know he had some discomfort on Wednesday, and by Friday he was yelling/crying every time we moved him. So, another visit to xray lab & ER confirmed the reason. He had a painful weekend, but seems much better with the pain today. They don't cast for this type of break, so he is wearing a sling and is not supposed to move his arm for several weeks.

Unfortunately he also has pneumonia now (I never should have bragged about just 1 pneunmonia). This one is not confirmed, but he has all the symptoms (fever, oxygen desaturation, lethargy, junky sounding lungs, etc.). With the broken shoulder, we don't want to put him thru the pain of chest x-rays just to get it confirmed. So, for now, he is being treated at home with a strong antibiotic & round the clock nebulizer treatments.

The poor guy. He endures so much, yet stays so sweet. Please pray for a speedy recovery and no hospitalization this time around. Thank you all for keeping him in your thoughts.

Love, the McCues

Spring News

Dear Friends,

As usual, time keeps flying and we don’t get around to posting updates as often as we’d like – but we think of all or our friends/family often and thank you for keeping Nathan in your thoughts. For those of you that missed it, Jim did take some time last month to post a birthday update on Nathan, so check out his posting below.

Nathan has even bigger news this month. He started pre-school last week. It’s hard to believe that the day came for him to go off to school. We never imagined this when he was born and even as we’ve learned that Nathan’s life prognosis would be much longer than originally predicted, we still did not imagine him at school. So far, the school has exceeded our expectations, but our expectations were rock bottom, so don’t get too excited yet. They have a long way to go to meet Nathan’s and his classmate’s educational needs/goals, but it is a start. It is also a very bad time with the California (and thus education) budget crisis. The district faced with 3 pre-school aged children that are orthepedically impaired (OI), as well as medically fragile & cognitively delayed, realized (or were forced) to provide something more suitable than a “behaviorally” challenged special day class with kids that are walking, talking, and throwing chairs (yes, I did say throwing chairs). So, they created an OI class for the 3 boys. There are pros and cons of this and I won’t bore you with the details. But I will tell you that Nathan absolutely loves riding a bus to school – he smiles and coos and looks out the window while bumping along in the back of the bus.

He has participated in just about everything the curriculum has provided thus far including the computer (with an adaptive switch in place of a mouse), banging a big drum, and taking “appropriate” turns vocalizing with the speech therapist. They still don’t have an appropriate chair for him to sit in or other equipment that was promised. The teacher is still afraid of touching him and is openly dissatisfied with her first year teaching job in special ed with these OI kiddos. But the classroom aides and other therapists (vision, speech, occupational) all seem great with him thus far. Our hope is that the district will find a teacher with a passion & qualifications for this job & will continue growing this OI program in Folsom. I personally have really enjoyed my 4 days that I’ve spent in the classroom and think it would be great to go into this field myself. Maybe, someday. But back to Nathan - I look for a whole new world to open up to him now that he is not just isolated with the family, home therapists & his nurse. He seems to be thriving in his new environment (except for the cold that he has developed). Exciting times... Stay tuned.

Independent of school, Nathan has now said 3 real words. He said "Ma-Ma" to me the night I returned home from a 2 week business trip to Malaysia. He has continued to say "mama", although somewhat sparingly. He has also said "Anne" to his music therapist named Anne and "Hi" during a music therapy session when he was cued to say "hello". We keep working with him in hopes that he will continue using those words and pick up some new words along the way.

We are also happy to report that we have entered the spring season with only 2 winter pneomonias this year, requiring only one hospitalization. Progress!

Now for the bad news. Unfortunately, Nathan’s good news is usually watered down with some bad news. We are being told that he needs major orthopedic surgery to correct his hip joints which are subluxated. They have been progressing at a fast pace, so the docs think he needs this surgery asap to keep them from dislocating and causing significant pain. We will be going for second opinions and surgeon consults soon to help us make this heartwrenching decision. The surgery recovery alone is about 8-12 weeks in a spica (full body) cast. And the surgery is not a guarantee that his hips won’t go on to dislocate anyway.

Nathan’s seizures are still bad and inconsistent. We went thru a few months where his seizures were better than average. Which means he was having about 50-60 seizures per day versus 100 per day. For some unknown reason, he then took a downturn and the seizures got worse. Not only was he having more, but they were wiping him out more. Many times he’d just fall asleep right after one and need 30 minutes or so just to recover. His reflux worsened and he just didn’t seem happy much of the time. I can’t blame him. We made a few changes – added an allergy med & changed his reflux med at about the same time. We are seeing some improvement now in both the seizures and reflux, but can’t conclude that it is due to the meds. We have also decided to try a seizure med that is not FDA approved – clobazam. We just ordered our 1st 3 month’s supply from Canada. It is not cheap and, of course, insurance will not pay for a non-FDA approved drug. If it provides some seizure relief for him, we will stick with it and look for some alternative funding sources (clinical trials, manufacturer, etc..). If it does not work, we will chalk it up to another failed medicine and move on.

Other family side notes – Zachary had tubes put in his ears last month. It has already made a tremendous difference. No ear infection for the last month, sleeping better, and starting to talk more. Madison is growing up fast – asking how to text message, drive a car, and wondering when she will have her first boyfriend. She continues to be Nathan’s biggest cheerleader and best friend (or BFF). She reads to him and plays with him daily despite not getting much feedback from Nathan. It is so heartwarming to watch. She really has a special place in her heart for the “special” people in this world. If only her and Zach could get along as well.

I’m going on my sabbatical from Intel this summer which means I will be off from work for most of the summer. Lots of house & kid projects await. So does some restful sleep which has been rare lately. We are tentatively planning an excursion to Indiana to visit my family once we work thru the logistics of Nathan on an airplane (wheelchair, oxygen, equipment galore, etc.). We are also talking of a family roadtrip to southern CA again with our family friends. I should have more time to write this summer to share Nathan’s on-going adventures.