Update on Jackson
Those of you on Facebook know that Jackson went in for a(nother) tonsillectomy on Tuesday. I've been avoiding posting an update makes me sad and tired to think about, but we need prayers and good thoughts (and maybe a whole bunch of love and support) so here's the scoop.
Thursday 4/23 we went to see Jackson's ENT to get the results of his sleep study. The results were BAD - severe sleep apnea, severe desaturations. The ENT did a nasal endoscopy in the office and found that his lingual tonsils (the ones on his tongue and throat) were GIGANTIC, the biggest she's ever seen, and surrounded his whole pharynx (usually they're just on the base of the tongue) and even down to his epiglottis. No wonder the kid wasn't breathing well at night. Either the tonsils weren't taken out completely the first time (last August) or else they grew back, or a combination of the two. ENT said the tonsils had to come out, of course. We scheduled the procedure for Tuesday.
The surgery itself went OK (with the exception of all 6 of his emerged teeth falling out/getting pulled out during the procedure 
). After the surgery they were able to extubate him but he was having trouble keeping his oxygen levels up and his airway open. They opted to insert a nasal trumpet (short tube in through his nose and down his throat, not as far down as the ET tube used during surgery) in the hopes that would prop open his airway enough to help him. He was transferred to the PICU (as planned) and stabilized there. Overnight he was still having trouble keeping his oxygen up and also spiked a temp. A chest xray the next morning (Wednesday) showed an area of white in his right lung, and the docs weren't sure if it was pneumonia or atelectasis (collapsed areas). He was started on IV antibiotics and aggressive respiratory therapy. All of this has helped and he's doing much better now, but we'll probably still be in here for a few more days. We're going to start weaning down his O2 today and see how he tolerates it.
In other news... we drew an enzyme level last week and the results were very low - so low that it's very possible that we may need to return to Duke for a second transplant. We're still discussing the right course of action. Jackson had an MRI on Tuesday prior to surgery and we're waiting on the results. They will be compared to his most recent MRI from August of last year. If they see disease progression, we'll need to head back to Duke as soon as Jackson is stable enough to travel. If the MRI is unchanged, we have some time to further discuss our options and plan our move. But the doc we trust the most is recommending a second transplant, and barring unforseen circumstances or changes, I feel fairly certain that we'll follow her recommendation.
Please keep Jackson in your prayers. I'll try to update again when I can.
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Love,
Kelly
Comment by Kelly Mellen [Visitor] · http://www.followfaithfully.com — 05/07/09 @ 11:12
Well, I know this is certainly not the news you had been hoping for. But sometimes test results don't show what you see everyday, a beautiful, sweet, happy, smart boy. And from what I can tell from seeing Jackson's pictures, he is JUST THAT. And he's also so very blessed to have a Mom & Dad like you all to be his biggest advocates, ensuring that he gets the best care.
I do hope the stay in the hospital is a short one and Jackson is feeling better soon. And hopefully, he will be able to sleep more restfully now (as will you, I am sure).
Please keep us posted...in the meantime, your entire family will be in our thoughts.
All Our Love,
Amy (and Jason, too...I will fill him in tonight!)
Comment by Amy Heflin [Visitor] — 05/07/09 @ 13:18
Ken. XX
O Lord, Holy Father, creator of the universe, author of its laws, you who can bring the dead back to life, and heal those who are sick. We pray for our sick brother Jackson that he may feel your hand upon him, renewing his body and refreshing his soul. Show to him the affection in which you hold all your creatures.
Amen.
Dimma, a seventh century Irish monk
Comment by Ken Roberts [Visitor] — 05/07/09 @ 13:22
peace,
patience
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Comment by Christina Levasheff [Visitor] · http://www.storyofjudson.com — 05/07/09 @ 13:51
I am so sorry to hear of jackson's latest challenges.... I will definately say a prayer .....
Positive thoughts going your way.
Elise, chris juliana and genevieve
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