Another BAD word… an update.

The day has been filled with numerous tests, numerous teams of doctors. Overall, a good but tiring day. Most importantly, know that Ethan has full MOVEMENT and STRENGTH back in his left arm and left leg. Only the doctors can tell there is a slight impairment in the left side of his face…I can not..and that’s continuing to get better.

Ethan has his large bandages that were wrapped around his head removed (these were from the magnet removal surgery). He looks great underneath all that gauze, and is happy to give his hairy head some air. He can now turn his head a bit when he sleeps. He’s ordered to remain flat at all times. He can sit up for a few seconds here and there, to stretch, to drink…but due to the stroke, and his lumbar puncture, he’s to remain flat at all times.

Ethan’s audiologist responds with a magnet miracle. Okay, further explanation required…Without having magnets in Ethan’s head, his “sound” he wears on his ear can not stick to his head. Dr. Neault brings small adhesive circles that contain a magnet in them. We can literally stick this small circle on the outside of Ethan’s head/hair via the adhesive backing, and then his “sound” will attach to that and stay in place on his head. This is our solution…this is what we’ll continue to do…follow-up MRIs may need to be done over the next few days, weeks, months…who knows…but will need to be done. This is our interim solution so that we don’t have to put Ethan’s magnets back in his head, only to have to remove them again at a later date. THANK YOU MARILYN!

We have a slightly better understanding of Ethan’s stroke. I realize today how much I don’t know about the circulatory system. Everyone’s question has been “how” and “why”…so many test are pending yet…but doctors have a suspicion. An ecocardiogram is one of the test done…an ultrasound of the heart. We don’t have a radiologist read on it yet, but we think it may show a a defect in the wall between the two upper (atrial) chambers of the heart (this is called a Patent Foramen Ovale – PFO). It’s essentially an incomplete closure of the atrial septum that results in the creation of an opening in the atrial septal wall. A PFO is frequent in everyone before birth but seals shut in about 80% of people.

SO…THIS MEANS….that potentially his central line that he still has in his chest, may have formed a blood clot, a piece of that clot broke off went into the heart, through this hole, and up into the brain. IF THIS HOLE WASN’T THERE…the clot would never be able to get to the brain, and would be sent from the heart into the lungs and get filtered in the lungs.

Tomorrow they are doing a test to show if there is a clot on/near Ethan’s central line. Regardless of what it shows, the central line will be pulled during our stay at this hospital…Most likely sometime next week.

THE GOOD NEWS? Is there good news to Ethan having a STROKE? Well, as always, there is a bright side…The bright side here is that as of right now we don’t think Ethan has a blood disorder, extreme neurological damage, a rare disease, etc. We think it’s a FLUKE…another (I want to swear here, but I won’t…) FLUKE!

We’ll be here for days, not weeks…maybe mid-week next week. We’ll see…

Tomorrow Santa’s making a visit…so we’ll bring in Em and Eliot too and have a great “family day” here in 6 West.

More to come…as always, thank you for your support and prayers…