Operation Owen 2012

Owen is a remarkable little guy.  In the past 72 hours he has managed to stir up a lot of drama and emotion surrounding his health and life expectancy.  He has caused a lot of tears, a flurry of prayers, and has succeeded in aging me another 5-7 years in just a 3 day period.  Love this little guy to pieces, but SERIOUSLY, he is rapidly surpassing his big sister in the drama department.

Early Sunday morning was a difficult time for him.  He had a bout of inconsolable crying that lasted from 2am until 6am.  Pete's mom was doing an overnight shift for us, allowing us to catch up on some sleep.  At 6am, Pete woke up to hear Owen crying (I now sleep with ear plugs, so was still happily in dreamland), and came down to check on him.  After hearing that he had been crying for 4 hours straight, Pete dug out the bottle of Morphine and gave him a dose.  We have had this prescription for a few weeks now and have not used it.  Morphine is a big time drug and one that is scary to us.  We didn't want to give it to him unless we felt it was the only way to help him.  This was by no means his first 4 hour stretch of crying.  He has had many during the past 2 months (post diagnosis) and they are heartbreaking to watch.  If comfort is the ultimate goal for Owen, then Morphine might be the ticket to providing it.

It succeeded in calming him, but he was still clearly in some kind of distress.  All day Sunday and Monday, his breathing was very labored, there was a wheeze to it, he was not interested in eating, and suddenly was sleeping for long stretches of time.   In consultation with Dr. F (who I am lucky enough to call Karen and will refer to her as that going forward), she thought he was in the beginning stages of aspiration pneumonia.  This was scary news to us because we have been prepared that aspiration pneumonia is most likely going to be the cause of Owen's death.  Her recommendation was to bring him to our pediatrician and have him checked to see if that was what Owen was distressed about.

At the pediatrician's office, Owen showed no sign of fever, his oxygen saturation levels were normal, and his lungs where clear. All good news that points away from pneumonia, but his breathing was still very labored.  The doctor concluded that this was an upper airway obstruction/ constriction and was due to his advancing neurological problems.  More calls were made between the pediatrician, Karen, and me, and the determination was that this was very serious.  Owen was baptized on Monday night in our home (the regularly scheduled baptism is on Saturday with his godparents and grandparents), immediate family was called and told about the severity of his illness, food and family arrived in an endless stream, Owen was referred to hospice, and grey hairs continued to sprout in my hair by the hour.

On Tuesday, Pete and I both went to work, while Owen rested in the arms of his Mammie and Mimi (Pete's mom and my mom).  Karen came up on Tuesday night to examine him.  She brought a gift in a blue box - his farewell gift.  Owen sensed her arrival and woke up about 10 minutes before she walked in the door.  As I have mentioned before, Owen likes to preform for his doctors, and he did just that while she was here.  Bright eyed, alert, congested, and happy.  A completely different Owen then the one who had been living with us for the past 3 days.  If he could have had a conversation with Karen, I am certain it would have gone something like this: "Seriously, I am fine.  Just a little cold. cough, cough.   It is wonderful to see you, have I mentioned how pretty you are?" all while batting his long eyelashes at her.

And there you have it. Just a cold. Honestly, this kid!  Please know that I am thrilled with this news, but SERIOUSLY!  Just a cold.  What we have decided is this was Owen's version of a fire drill.  I am happy to report that everyone responded to their stations appropriately and in a timely fashion.  Operation Owen 2012 was a success and everyone can now return to their regularly scheduled lives.  Please be on standby because I know he is going to insist on a few more drills this year.  Love that little guy!

Karen took her farewell gift with her when she left.  I think that is a pretty good sign.