Thursday, August 26, 2010

Four weeks.

July 23rd: Owen diagnosed with his first bout of pneumonia. He's prescribed two, heavy duty antibiotics. Kelsey and I say between ourselves, "Wow, the fact that this is the first real episode of respiratory illness, bodes well for Owen. Hopefully, the antibiotics will knock it out quickly." We listen to him gurgle, crack and cough the next several nights.

July 28th: Severe GI distress and diarrhea from the antibiotics. SEVERE. This is also the start of severe sleep deprivation for Owen and his parents. Elliot sleeps perfectly. Twelve hours a night. Uninterrupted.

Late July: Owen begins having spells where he gets really fussy, arches, cries, goes rigid, gets red in the face and then screams and screams with a look of terror on his face. He becomes paralyzed with pain. Is it pain? Fear? This happens most frequently when he is upright in his stroller or in his car seat. So. We stop taking him anywhere unless we absolutely have to. We take video of the episodes and start looking for answers. Elliot has taken to running up to Owen, when he hears him crying out, saying "Owen, Owen," and then "Pat, pat." He pats him gently on the chest hoping that this will soothe him.

Early August: We are giving Owen probiotics, soaking him in epsom salt baths, trying to get him to his cranial-sacral and feldenkrais appointments. But inevitably, while in the car, he has a spell. I have to pull the car over, take him out of his car seat and try to soothe him. What ARE these episodes and why can't we think our way out of this one?

August 16th: Enough of this. Off to the ER. Pack up Owen. To Seattle Children's Hospital. Pack up Elliot. To Oma and Grandpa's house. X-rays, blood draws, oxygen saturation monitors. "We can't find anything wrong. If the episodes get worse or more frequent, come back." "No. You don't understand. I can't get out of the house with him. Something is wrong. He's horribly uncomfortable." They agree to admit Owen. We stay two days.

August 17th: Day of discharge. Owen is constipated. So much so that the attending physician, during rounds, says to the team while showing everyone the films of Owen's little abdomen, "Folks, that's a lot of poop." He also has eight teeth coming in and when he has these "episodes," clenches down on his erupting molars and surrounding tissue so much that they are a bloody mess. He opens his mouth and looks like a prizefighter. Miralax for the constipation. Tylenol for the teething. Home.

August 18th: At home the episodes persist. No sleep for anyone except Elliot. And Dutch. Lucky dog.

August 20th: Make calls and send emails to specialists' offices at Seattle Children's. "Owen is trying to tell us that something is wrong. We need help figuring out what is going on. Will you help us?" One is kind enough to see us the following week, even though he's booked out through 2010. Thank you, Dr. M.

August 24th: Dr. M. says, after viewing Owen and looking at the video. "We don't want to mask this with medication. We need to find out why he is in pain" Thank you. "Owen is trying to tell us that something is wrong." Thank you. More labs ordered. More blood drawn. Another abdominal x-ray. Abdominal ultrasound ordered.

August 26th: At Seattle Children's Hospital again, all day, except for an 8:30 neurology follow-up at Swedish. Owen and I have crashed at the Silver Cloud at Broadway and Madison Wednesday night (eight down pillows PER bed!) since trying to do an appointment while overnighting at home would have required a 4:00 a.m. wake-up call from Dutch. Nope. Neurology visit goes well. Owen will begin the year-long wean off of the ketogenic diet in mid-September. IF we can stabilize him. Owen has an abdomnal ultrasound to look for problems with kidneys, pancreas, gallbladder... At his orthopedic appointment, after a review of the spine and hip x-rays, we learn that his scoliosis is bad. Really bad. Fifty-five degree curve. They recommend that a "growing rod" be attached to his spine. A metal rod that is surgically inserted and screwed in at the top and the bottom of the spine. On the ferry, on our way home, Owen has another episode.

I say, "enough already!" Geesh.


Tiff said...

Enough already is right! Poor kid! This is when you want to wave the fairy wand and say..."poof" and it's all better. Too bad it is not that easy! Love-hugs and most of all know that we all send our love to you and think of you all the time! Thanks so much for the update. We love being able to keep tabs like this. Xo Tiff and fam~

Shannon said...

Oh Stacy,

I agree! Enough already! Ugh. I wish you and Owen and everyone didn't have to deal with this. ((HUGS))

karen gerstenberger said...

I'm so sorry to read this! -but so glad that you posted. You and your family are in my prayers.

The fact that you are persistent is one of Owen's great blessings - as you well know, it's necessary. You know Owen the best, and you are his best advocates. They will listen to you at Children's; I pray that a test or scan will reveal what is going on, soon.

That photo of Owen in his stroller is pure joy to the eyes...I pray that he will soon be feeling that way again.

Lisa said...
This comment has been removed by a blog administrator.