Wednesday, October 20, 2010

Strippin' down.

Elliot and I just returned late Monday night from a lovely, fun-farm-zoo-aquarium-football-sister-Auntie-filled week. I miss my sister. A lot. She loves to laugh. Loves to be silly. She's whimsical. She's also kind, compassionate and has a big heart that is just oozing with love for her family.

It was harder for Elliot to adjust to the three hour time zone difference than I thought it would be, and our sleep was pretty limited, but flying with him was a piece of cake. He loved the indoor train and moving walkways in the Detroit airport. He perfected the word "pizza," given several opportunities as we passed by the numerous California Pizza Kitchens in the Minneapolis airport, to smell it and then demand it (I swore by the third one, that he could read). He made countless weary passengers smile and laugh, including an older Indian couple who were straight-faced as they sat down in the seats behind us and who, a few minutes later, were playing peek-a-boo and tickling a squealing twenty month old through the spaces between the seats. Out of all of the possibilities, he chose a woman from Vashon Island, our neighbor on our flight out East, as his favorite friend and asked about "Margie" for days, even mistaking another woman on our flight back home for this sweet woman. No meltdowns. No crying.

Dad was happy to have him return home and they have resumed their father-son breakfasting.

Owen. I missed him so much, his absence in my life amplified by the fact that we had just recently spent so many intense hours and days together throughout the last three months. I was so happy and ready to return to my two-of-three guys.

Owen was perfect while I was away. Slept great. Smiled a lot. Janet, Leslie and Herb enjoyed spending time with him and he benefitted greatly from their grandparent love. Kelsey was super-Dad and sent a number of photos of the two of them that kept me from missing them beyond way too much.

It's impossible to convey how much taking Owen off of Keppra has changed him - brought out his personality, made his eyes brighter and his smile more vivid. It has changed our lives. He'll be completely off of it in another week. The Keppra was most likely the biggest contributor to two years of agitation and fussiness. From the very first day we started Owen on Keppra, a broad-spectrum seizure medication, he responded with "Kepprage."

Why do they call it "Kepprage?" This was written by a grown man who had to endure it.

And I thought another comment left one of the epilepsy forums summed it up perfectly: "There is a term. I believe it was created by patients and parents not doctors, called "kepp-rage." It is used to describe the emotional spells caused by the side effects of Keppra. It seems that anger, and bouts of crying are the most reported."

Of course it's not coined by doctors.

It's tough, though, when your child is diagnosed with debilitating seizures, the worst form of pediatric epilepsy. Evil vs. Evil.

Another drug soon to be out the door... Clonidine. Owen is down to 1/5 of his highest dose and we will have him off of this sometime in November. The use of this medication, initially prescribed in June of 2009 as a sleep aid, has done nothing except make our lives miserable. It is a loaded gun for Owen, causing seizures when used at higher levels and causing withdrawl effects when not taken every six to seven hours. Way too volatile for a little guy whose life is already full of so much unpredictability and discomfort.

And, yes. We also took him off of Baclofen. It did nothing for the pain episodes he was having and actually increased his spasticity (most likely his response to its side effects). Dr. M in the Neurodevelopmental clinic told me he didn't believe it would work. I should have listened.

Just going through the list of what we are taking him OFF of makes me a little jittery and in need of fresh air. It should not happen OR be this easy that you find yourself looking at your son who is on too many, and too many of the wrong kinds, of medication. Too much. Too many.

The outcome of our appointment with the otolaryngologist (ENT surgeon) yesterday in Bellevue... Tonsils = small and not contributing to airway obstruction. Adenoids = large. As he was manuvering the scope through Owen's nose and into his throat and airway, the ENT doc says, "Wow, guys. Good news. He has big adenoids. Look at the size of those." I'm considering keeping a quote book from our specialist appointments.

So. Another hospital stay. Sometime in November or December. The surgeon said he is certain this procedure WILL improve Owen's sleep apnea. We just won't know how much until after the surgery. He reminded us that Owen has SEVERE sleep apnea and that even a decrease to moderate apnea would be a really good shift. He's hoping, as are we, that it will result in a shift to mild apnea (no apnea is not very likely given Owen's lack of tone/CP). According to the specialist, apnea at this current (i.e. severe) level causes irritability, cognitive dysfunction, inability to retain information and, long term, can lead to heart failure and respiratory distress. *sigh*

It will be a two night, three-day in-patient stay at Seattle Children's Hospital, the lengthy visit mostly due to Owen's CP and the fact that he runs the risk of fluid build-up in the lungs post-operatvely. They will monitor him in the ICU for a bit and then transfer him when he's stable to keep a close eye on him for another couple of days. It will be another week of recovery at home. Then, a healthy, restful Christmas at home. Yes, yes.

This is good news - the large adenoids. The surgery. It really is. It is something we can do. We are hopeful.

I will save a discussion on the other interventions, especially "Number Three," for some day when I am reflecting on how wonderful the adenoid surgery ended up being for Owen. How it helped him sleep better and made all of us happier and healthier.

But, the BEST news! After three months of waiting, we finally received the call this morning to let us know that Owen was approved to have a "WISH" granted from the Seattle Chapter of the Make-A-Wish Foundation. These granted wishes are reserved for children who are diagnosed with a life-threatening medical condition. Owen's underlying seizure disorder and severe cerebral palsy put him at risk for a short life-span. This is a hard pill to swallow and one that we don't dwell on. Instead, we celebrate his life and this news that we received today is just one more opportunity to do just that. Working with the Make-A-Wish volunteers over the course of the next couple of months to determine what would bring Owen great joy, is going to be so, so fun.

We'll keep you posted on what Owen wishes for...

~ S

Friday, October 1, 2010

Up and down and back again.

Owen has severe sleep apnea. No surprise there. Thankfully, three months ago, in my sleep deprived state, with the support of my sleep deprived husband and in the company of my sleep deprived eldest son, I requested that this recent sleep study be performed. Because, I kept saying to all of the specialists, "NO ONE IS SLEEPING!" 

What is surprising is that Owen had ninety (90) sleep apnea episodes in a four hour period. He was roused from stage 2 and stage 3 sleep ninety times. He never entered REM sleep, the restorative sleep that we all need to grow, learn, heal.

The data they were able to collect was both fascinating and the most helpful of any, from any specialist, to-date. Owen has a very distinct neurological response to these apneic episodes. If you look at his EEG absent of the sleep study data, you see bursts of "multifocal" activity which, taken out of context, are highly irregular. But when the sleep study data is laid down on top of the EEG tracings, as the sleep specialist pointed out, you can see where Owen's sleep apnea initiates (appears just prior to) these irregular EEG patterns. His brain is very angry about the fact that it's being ripped out of sleep for the ninetieth time. 

We also learned from the sleep study readings that his oxygen saturation is excellent (except when he's not breathing due to an apneic episode, of course) his CO2 exchange is normal and his lung/chest exertion is rhythmic, strong and in concert with the work that his abdomen is doing.

One good thing about being in the "severe" category for anything (although I really think it should be referred to as "exceptional") is that you get priority loading. Owen will be seeing an Ear, Nose and Throat specialist at Children's very soon to discuss a tonsil and adenoids removal to open up his airway. This works much of the time to open up the airway enough to resolve the apneic episodes. The scar tissue from the removal also helps to strengthen the tone of the airway, making it less floppy and prone to collapsing during sleep.

So another inpatient stay. A surgery. Seattle Children's. But not for a few weeks. Elliot and I are leaving in a week and a half for a week-long, much-needed, play date with my sister in D.C.

And word from the orthopedic surgeon. No growing rods. 

I've lost more sleep over this issue than any other, I think. If I have slept, nightmares.

Kelsey and I were both shocked. Elated. It's not even the case that Dr. S. said that it was optional and that we chose the chicken path. Dr. S. said it's not necessary. He said he won't do it. He's not concerned right now. He was direct. Knowlegable. He had talked to our pediatrician. To the neurodevelopmental pediatrician. He knew we were coming.

He showed us the final read of the spinal films. He measured and compared. What matters, they've discovered (the spine guys), is the flexibility of the curve, the degree of curve during the traction film. Owen's is thirty-five degrees at the point of the greatest curve. They start to become concerned at fifty. He indicated that Owen's curve has not actually increased much at all in two years. This is good, the spine guy said, since the spine grows most intensively from birth to age three (and again in the pre-teen years). It's all arms and legs for awhile. 

Organs. Fine. Lungs. Fine. Neither are much at risk right now, especially the organs which are flexible and can shift and float around. One kiddo, curve much greater, older, had a kidney removed which increased significantly, his lung capacity (crazy what you learn...). Lungs are compromised with much greater degrees curves and, especially, more rigid curves. He was pleased with Owen's flexibility - in his spine, hips and legs. 

Oh... the hip. Dr. S., also a hip guy, said the hip is not only far from dislocated, but that it's pretty well seated still and not causing any pain. This meshes with the read from two others (Owen's chiropractor who provides cranial-sacral therapy and his feldenkrais practitioner, who is also a physical therapist).

Speaking of... Resuming regular cranial-sacral sessions has almost eliminated Owen's acute pain episodes. Too much "sacral-sitting" in a poorly fitted car seat (a common problem, I guess, according to Owen's new physical therapist at the Harrison Pediatric Rehab Clinic in Silverdale). Pinching of nerves between L5 and the sacrum. Tight illopsoas and hamstrings. These things discovered by touch. Trained hands. Owen's chiroprator and cranial-sacral provider. Thank you, Mari.

My "musts" for Owen. Cranial-sacral. Feldenkrais. Massage. And his new physical therapist is fabulous.

And, yes. The new office in Bellevue is indeed, quite fancy. Lovely, really. But it's good to be heading back home. Again.

~ S

Another day.

Over in the city. Hours full of appointments. Clinic rooms. Hospitals...

Kelsey is with us on this lovely, sunny Autumn day. We'll be receiving the sleep study results from the sleep specialist (pulmonologist) in his office in Issaquah. Then, we'll be making a trip up to Bellevue, to the fancy, new offices of the Seattle Children's satellite clinic where the orthopedic surgeon has his fancy, new office. Bellevue's a fancy place. We'll be hearing, directly from the orthopedist, whether surgical intervention - growing rods along Owen's spine - are necessary, right now, at age three, to help maintain his respiratory health and keep him from suffocating under the weight of his own body. Serious shit. I can't even begin to articulate the fear, anxiety and saddness I feel surrounding this issue.

It's a serious one. A serious concern. Owen caught a cold this week from Elliot. We've been up every night with him, suctioning the mucous out of his throat to keep it out if his chest. Fear. But, this time, it seems as though he'll be fine. Hope.

~ S