Tuesday, June 26, 2012

Wow! Mayo has done it again

 Monday we were at the clinic all day, from 7am-5pm.  We saw the main doctor coordinating our care and spent about 2hrs with her.  We went over all of her symptoms and problems she is having. She agreed that Cloey has some sort of autonomic disorder that is causing her problems and set us up to test for one specifically called POTS that day.  The test was about an hour long and basically tested her nervous system and autonomic responses.  We discussed have a bronchoscopy on Wed to see what her airway looks like now that she hasn't been on ventilator support for a year.  We than had x-rays done of basically her whole skeletal system and saw the orthopedic surgeon who has been following her since she was 2.  For the first time he said her bone structure was "essentially normal", those two words never describe her so they were like music to our ears.  He said her spinal fusion looks great and her abnormalities look better than he expected them to look at this age. yay! Recommendations are to just to continue to monitor her about every 2 years, but to expect only minor fixable problems. double yay! This was one of our worries about her getting older, having to repeat the fusion or wear a brace or surgery on her elbows and hips.  So to hear that we are nearly out of the woods with that one is great.  We also saw pediatric surgery who is going to resize and replace her g-tube on wed while she is having the bronch done.

Today we saw the pulmonologist.  He had the test results from the test the day before and let us know that it did show she has autonomic dysfunction, it may be POTS or something similar.  We have not reviewed the results with the main doctor yet, so I won't go into specifics because we simply don't have them, but it means we have a disorder we can manage instead of putting her to sleep every night and wondering if she is going to wake up the next morning.  He went on to examine her and determined that from his stand point, she does not need the trach or the vent.  Whatever was causing her to need it before she has outgrown.  Probably fusion done 6 years ago has relieved the pressure on her brain and the damage from the "almost" Chiari, has repaired itself.  The neurons have had time to rebuild pathways.  Also, her facial structure that was preventing her airway has grown and opened up, allowing her to breath normally.  He shared his opinion with the sleep specialist who is also a neurologist and recommended a sleep study to determine if this is actually what is happening.  We see him in the morning.  He also is going to run a blood test to test for a specific gene for central hypoventalation syndrome (brain forgetting to breath) if she doesn't have it that is more evidence that she no longer needs the vent.  This is why we come here! more than an hour with each doc. Doc's working together and thinking outside of the box, or even just outside of their specialty. Combining studies and tests so she doesn't have to be under anesthesia more than once.  And most importantly, seeing her quality of life as a person and not just "one of these kids" and a chart to pass on. 
Than we saw the ENT.  She agreed with pulmonary, and from her stand point if the scope tomorrow and the sleep study come back clear.  SHE WILL TAKE THE TRACH OUT FRIDAY!!!! We were in complete shock, Ty literally asked her to clarify three times.  Decanulating (removing the trach) is usually a big deal involving reconstructive surgery, but in Cloey's case it wasn't placed because of her airway, it was placed because of abnormalities in her facial structure and brain, so her airy was is "essentially normal" meaning the hole will close on it's own, or at least mostly and may need only a minor surgery if it is not completely closed in 6 weeks. When it was placed we were told to consider it permanent, even if she got off the vent the chances of her facial structure and brain issues resolving were slim to none.  

Our heads have been spinning the rest of the day.  This changes everything! A year ago at this time we were preparing to say goodbye to her.  Maybe all the fighting for her for 10 years, giving her everything she needs no matter the cost, is finally going to pay off.  We are positively giddy at the idea of possibly seeing Cloey blossom without a trach or vent.  We also see what a miracle she continues to be, and the power of prayer.  eeeek!

Ok, back down to reality. We can't let our hopes get too high.  She still has to "pass" the sleep study and scope, and we don't know all that her autonomic disorder entails, but it's still exciting.

Ronald McDonald House was full, so we are on the wait list and are staying at a hotel at a discounted rate.  Everything else has gone amazingly smooth.  Of course, having both of us here helps a lot.  I am so grateful to everyone who has helped us financially and logistically so that we both can be here to share the burden and so we can make what has turned out to be some pretty BIG decisions as a team. It has really helped.

Tomorrow we will know lots more.....

Here is a picture of Cloey standing in front of a mirror that hangs in radiology.  when we first saw this mirror 9 years ago, it reminded us of her and we both got misty.  Ty says he is going to make one for her someday.  She has looked at her reflection in it every time we have come here since.


Geneva Hornecker said...


Anonymous said...

Wonderful news! I am a huge fan and supporter of RMH and hope they have an opening for you soon. I have a good 500 pull tabs to drop off at our local chapter too. :)