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

5 comments:

MizzMarr said...

So glad you have good news. We continue to hold nothing but the best thoughts for Owen, and all of you. You're such an inspiring, beautiful family--we love you!!

karen gerstenberger said...

I'm very happy to read all of this news. Your trip was well-deserved and sounds soul-nourishing. Owen's new medicine routine (less) sounds wonderfully hopeful for all of you, as does the surgery. I know that any surgery brings risk and worry, but this one sounds well-planned and worth it. I love the staff in the ICU at Children's. They took such tender, loving care of Katie and of us. They will do the same for Owen and you, too.
God bless all of you!

Katy said...

Very serious question--I hope you'll answer me--what IS he taking? For seizures, I mean. We're on Keppra and I've felt good about it when compared to Phenobarb, but I wonder if it's a good choice after hearing your description of Owen. I hate anti-seizure meds, I really do. I have days where I swear up and down that I'm going to Charlie on a crazy diet to see if we can calm down his EEG any, but he's so freakin picky about food--I'm not sure it could be done.

Your trip sounds fabulous--family is good for the soul.

Sarah said...

What will he wish for? PLEASE TELL! I really like hearing about people's wishes.

Elizabeth said...

I'm so happy to get back to your blog and to hear of your recent trip and then this update on Owen. I was especially interested in the effects you're seeing withdrawing Keppra from his regimen. Sophie has been on Keppra for so many years that I can't remember, and while her dose is exceptionally small and we've never experienced anything unusual it certainly doesn't do anything for the seizures. She's having a really hard time, now and I'm wondering what's next.

I'm glad to have re-found you and look forward to catching up. Thank you for your kind comments over on my blog!