As most of you know, Madelyn has never really been well. Besides her heart, which is doing fine, she stays sick with ear infections and resp. infections constantly. Even when not sick with a virus, she breathes very loud. I finally put my foot down and told her pediatrician that I wanted to see a specialist. He reviewed her chart and agreed that an Ear, Nose and Throat specialist might be a good idea. We have visited 2 diff ENTs in the past 2 weeks. Today our visit at AR Children's was enlightening, but sad too.
She has fluid in her middle ear, causing her pain and hearing problems. She didn't do well on her hearing tests today and is 2 levels below normal. This will improve after tubes are put in.
Her adenoids are large. Her tonsils are HUGE, so huge they are touching each other. She can't breathe out of her nose, and it is causing sleep apnea and her repeated illness and breathing difficulty. This is hard on her heart, so intervention is urgently needed.
The Treatment:
Put tubes in her ears to drain fluid and prevent future infections (very common procedure).
Remove her adenoids and tonsils. (Not so routine in a baby her age, but fairly safe in a hospital setting.)
Her surgery is Feb 27th at Children's and we will be staying for a few nights until she is drinking fluids willingly. Up to 2 wks Recovery at home. Possibly a really rough 2 wks.
She will also be having a endoscopy type procedure where they will look at her trachea. The ENT is concerned about her rattly breathing, and mentioned that she may have a condition known as tracheomalacia, a "floppiness in the trachea" that causes wheezing and frequent resp illness. It is often seen in kids with her heart defect, Tetralogy of Fallot. Its pretty rare, and kids usually grow out of it. Surgery is only needed in severe cases. Pretty scary to hear on top of everything else!
It is really heartbreaking to think about going through any more surgeries, but after she's recovered her quality of life will be so much better. Right now she is not sleeping well, her speech is delayed b/c she can't hear well, she's off balance, she chokes on food, etc. It all makes sense now that we know there is a problem. Poor baby. I don't know why her luck has been so bad, but she's a trooper through everything! Its Mommy and Daddy who usually have the hardest time dealing with it. Ready to get her healthy and on with life! Please keep her in your prayers!
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2 comments:
I hate to hear that! But I know she will be so much happier and healthier when it is all said and done. You guys will be in my prayers. Please keep me posted!
Hey guys! Poor Maddie, that is a lot of bad news! Be strong though, i just met with a couple the other day at head start going through similar complications. However,there little girl is a bit older 25 months i believe. They are going on there 3rd week of recovery! It can really be stressful! Hopefully all will go well, and Maddie will be back to full potential just in time for Easter! Hope all is well, we will keep Maddie in our prayers! Lots of love you guys!!! Keep us updated as well!!!
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