Tonsillectomy in a toddler with Down Syndrome

Our sweet, sweet George is having surgery on Wednesday.  Wouldn’t you think that since he’s sailed through four surgeries already in his brief 2.5 years that I’d be confident that all will go well?

And what about Danny?  My experience with him should be helping me now.  He’s had general anesthesia more times than any person of any age I’ve ever known.  Shouldn’t it all be so routine for our family by now that I don’t waste valuable emotional resources worrying?

But George is so little, and so sweet, and so perfect… I just want to protect him from anything even remotely painful or risky. 

George has obstructive sleep apnea.  His has two causes besides just the Downs.  He has laryngomalacia, so his airway is floppy (like the rest of him) and just collapses, keeping the air from flowing freely.  He’s had this since he’s been born.  And he has huge tonsils, in a posterior pharynx that’s smaller than usual due to the Downs. 

So the tonsils have to go.  This sleep apnea is putting terrible stress on his heart, and it’s not good for his brain, either, although that’s harder to quantify.  The problem is that tonsillectomy in children younger than three is riskier.  Tonsillectomy in children with DS is riskier.  Tonsillectomy in children with laryngomalacia is riskier.

Here’s one way to visualize it:  He has this little, floppy airway with BIG tonsils in it.  The tonsils have to go.  BUT…. what if (and this happens) George’s big old tonsils are actually providing some scaffolding to hold up and open his airway?  Take them out and it falls down worse.  Uh oh.  Plus, those huge tonsils have sort of been like barriers, keeping his tongue forward and out of the way of his airway. 

All children have swelling where the tonsils were after surgery.  Remember from high school physics about the inverse relationship between flow and radius?  And it’s actually squared, so a little decrease in size of the tube can lead to a big decrease in air flow.  When you start out with a little tube, and that little tube gets smaller, it can stress a mama out.

And then there are the down syndrome anesthesia risks… low heart rate, slow recovery and resumption of independent breathing….

You know what else?  We all think George is a pretty smart guy, but he’s just not going to understand what’s going on, and why he hurts and why all those people keep messing with his mouth and his monitors and his IV and all…

Taking too many flash pictures right before bedtime can stress George out… sorry, sweet boy!

So anyway, George is having this surgery Wednesday.  It just couldn’t wait until he’s three years old.  Obviously, he’s not going to be having this outpatient in the surgi-center… he’s getting admitted to Presby for the duration.

You know I try to avoid micromanagement in my prayer life.  “Thy Will Be Done” is about as specific as I get sometimes.  However, Wednesday calls for details.

First, I’m praying that Dixon has an easy night at work tonight… his last night for a week… so that he’s fully recovered and back on regular day/night schedule FAST.  He’s going to stay with George in the hospital, I’m just not strong enough.

I’m going to pray that little George is a good sport about not being able to eat or drink until 11:00 (his surgery time… WAY late for a little guy, but that’s one trouble with having to be in the big main hospital…)

I’m going to pray that he goes off to sleep peacefully and that anesthesia is safe and easy, with no troubles with bradycardia (too slow heart rate), no troubles getting him intubated despite his crazy airway, and that they get his IV on the first try (now THAT would be a miracle!!!)

I’m going to pray that the surgeon scoops those tonsils out carefully and precisely, so that there’s no bleeding and no excessive tissue trauma that would cause swelling.

I’m going to pray that when he’s all done, and they take the breathing tube out, his airway stays WIDE open, and that his tongue stays forward.   And along with that, I’m going to pray that this dramatic change in airway mechanics doesn’t cause pulmonary edema  (fluid in the lungs…. complicated story involving PEEP… not the marshmallow kind either….) 

So basically we’re praying for ZERO obstructive apnea after surgery. 

I’m also going to pray that he has very little pain, because he’s going to be a good boy about taking all his medicine.  And I’m going to pray that his IV stays in and working so that we don’t have to fight too much with him about eating and drinking until we make sure everything else is fine.

But come Thursday or so, I’m going to start praying that he can eat and drink easily, so that as long as he’s not in the ICU, he might be able to come home soon. 

Please pray with me.  George needs you.

39 thoughts on “Tonsillectomy in a toddler with Down Syndrome

  1. May it comfort you to know that you and George are being prayed for – even by strangers who never even knew about George until “accidently” finding him on a friend’s facebook wall. That’s how God works – he brings people together when He wants to, so that they may support one another and work miracles of grace with Him.
    What a beautiful son you have been given. God will be holding him tightly in His arms as He always has been. Be at peace and know that all will be well!

  2. Oh my, that is a lot to have to worry about. I will be praying for less stress for you and Dixon as well, and guided hands every step of the way. My prayers have started.

  3. We are praying for George all the way from Norway, praying for calm hearts and painfree days ,good sleep and lots of icecream!
    Emma and my children ,who loves George dearly !

  4. Lots of prayers coming your way, for sweet George, his special family, and that caring and well skilled medical team, too!

    Have I ever told you that you are the best photographer, EVER? (Maybe I have mentioned it once or twice)?

    Just know we will all be with you Wednesday (in thoughts, prayers and spirit).

    Love, prayers and hugs!

  5. I will pray! I just this morning heard a great talk on EWTN radio about our angels. Be sure to ask George’s angel to be with him, to help guide his doctors and nurses — there is a great power source in our angels, we just have to ask. Prayers for you, too, mama.

  6. Praying for you and your sweet family. Hopefully the tonsillectomy will alleviate all the breathing issues. My son has an anoxic brain injury and his his tonsils out last April. It was difficult, many of the same issues you mention but we made it through with flying colors

  7. I have been following your blog and admiring the strength of you and your family. My children and husband and I pray for you each night before sleep.

    Most sincere prayers and petitions for you, your husband and your sweet George continually coming your way from Cary, NC.

    JMJ

  8. I am praying very hard for George’s surgery tomorrow. I’m also praying hard for you, Dixon and your family. Love to you all!

  9. I’m praying for all those specifics, Elizabeth. I like specifics and I believe God does too. Believing and looking forward to the first good report.

  10. praying for you all this morning ~
    George, the surgons, nurses, you and Dixon and the other kids too ~
    we had them out with Kaitlin too ~ I understand the mama worries.

  11. I have been touched in so many ways as I follow your blog. Your family is beautiful and a blessing to readers like me. I have a 6 year old son with ds who had tonsillectomy a few years ago with quite good results. Please know that George has been in my rosary intentions for the last two days for a successful surgery and smooth recovery. Prayers will continue for sweet George. Many prayers for your dear family from Ohio.

  12. For sure you all are in my prayers. Our oldest had her tonisl out at age six – without any of George’s issues – and I was a total nervous wreck. I thinkhis dad being with George will be a HUGE help for both of them.

  13. Hope George got through his surgery today. Spencer had his tonsils taken out when he was 5 due to some of the same things. We were in the hospital for one night. He did great until the third day when the steroid wore off. We were almost back in the hospital but I just kept giving him a small syringe of fluid every 30 minutes for several days. he lost some weight but as long as I kept him hydrated he was ok. It took about two weeks for him to eat normal. In the end it was worth it. At one point in time I had to stop reading about all the extra risks our special children are subject to. They seem to be pretty resiliant. Praying for quick healing for George and peace and rest for you and your family.

  14. I keep all of you in my prayers. I too have a DS Angel, Joseph turned 2 in July. He has had several sugeries, including removal of his adenoids. Each surgery is a post operative nightmare. He has developed collapsed lungs from the General Anesthesia, severe desats for several days post surgery, requiring lengthy inpatient stays. My heart goes out to you and your suffering over your baby’s suffering. Please update us soon as to how George faired w/ the surgery and his status now!

    In Christ, through Mary,
    Alexandra

  15. Wow I just found out my 2yr old needs the surgery too. He is also DS and has had 7 other surgeries but add to that, he has pulmonary hypertension and is Oxygen dependent. I will pray for you and your son and I also always pray His will be done. God bless you and your family(;

  16. My 5 year old son who has DS is having a tonsilectomy, new tubes, and a submucousal resection of the inferior turbinates, on Wednesday 5/2/12. I don’t see any posts about how George did. I hope all went well! Please pray for Aaron.

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