The end, or the beginning?

April 22, 2016

Surgery was successful today.  Our surgeon said that everything went well, and Ethan is snoozing away in ICU this evening.  His surgery lasted from 1:30 - 5pm, and it's now 8:00 and he's still sleeping, so my guess is that the pain meds are kicking in and keeping him out of pain.  

 

For those who don't know the back story, here is the abridged version.  Ethan was diagnosed as failure to thrive at 11 months, and then the past 4 years I have noticed him fatiguing easily, having restless sleep, and coughing when he drinks.  Through some tests at Mayo Clinic (back when he was 2) and then at National Jewish these past few years, they figured out that he was aspiration when he drank, but they couldn't pinpoint the cause.  We visited Children's Hospital of Colorado for his fatigue and restless sleep over the years, and they (much to my disappointment) were pretty dismissive.  My final conversation with them went like this:

 

me: Why is my son so fatigued and his oxygen saturation so low?

doc: Well, maybe you just live a sedentary lifestyle.

me: how can I have one child who is a phenomenal athlete and the other so sedentary he can't get off the couch?

doc: i don't know, you should go back to your family practitioner.

 

Needless to say, the experience left me frustrated, but it was meant to happen to get us to the right place, the Mayo Clinic.  Back in January 2016, we did a week of diagnostic testing and they found out that Ethan has a rare condition known as a Chiari 1 Malformation, depicted here on his MRI.  For those of you not familiar with reading MRI's, ha ha ha, that means that his brain is dropping below his skull, in this case 11.85mm below.  He also has a second issue called a retroflexed ondontoid process, which is basically a pointy bone by his C1 vertebrae where a curved bone should be.  

While it's very disappointing that Children's Hospital didn't take further steps in their testing throughout the years, both issues were causing his brain stem to be compressed and therefore send mixed signals to his brain, causing his swallowing difficulties and his lack of quality sleep which led to fatigue.  After years of searching for an answer, it was both a blessing and a curse.

 

We left the Mayo Clinic back in January with a plan to return as soon as tax season was over.  It was a stressful few months of anticipation, but we made it today and the surgery (to remove some bone from the back of his skull to make room for his brain over-crowding) went great.  Unfortunately, this is not necessarily a cure all, and it could be a very long journey for Ethan (Chiari Malformations have a high surgical re-occurrence rate, and the odontoid process issue could require surgery in the future as well), but for now, we are happy to get through the first step in a very long process!

 

 

Ethan is now recovering in ICU for the evening.  Most surgical patients don't need these step, but because his has central sleep apnea they want to keep a close eye on him.  My (wonderful, awesome, amazing) boyfriend, Jim, is pulling the night shift with me, and Dave and his (wonderful, awesome, amazing) girlfriend, Krista, have Jacob with them at the hotel.  We are all doing our best, and as usual, Ethan is happy to keep us all entertained!

 

He actually just woke up for the first time in ICU and said "they did a good job with this IV, it's not too tight at all."   He is definitely a glass half full kind of kid, and that makes my life a whole lot easier!

 

 One side note: today was extra special because we had Ethan baptized in the Mayo Clinic Chapel...no time like the present!!!!

 

 

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