More news on Annie: Today Annie had a bronchoscopy to check for possible causes to the apneic spells. To do this procedure (pretty invasive and considered to be a surgery) they had to sedate her. Nicki and I were both a bit worried about this because of her already weak body and breathing ability. However, the need for the procedure outweighed the worries and we went ahead. The result was that nothing looked too serious. She does have some spots on her trachea--possibly caused by reflux, and she does have a bronchial sinus which is an extra passage off the trachea. No big deal there. Well, recovery from this procedure has been difficult for Annie and she has been on the ventilator most of the day following the procedure.
For those of you who have seen your child on a ventilator you know what that feels like. I CAN'T STAND it! It's so sad to see your little baby crying--tears flowing--but making no sound because the tube is blocking her vocal chords. It looks like it feels horrible.
So, tonight they tried a few times to ween her off the vent but she kept having more apneic spells and it wasn't looking too hopeful for a quick transition back onto the high flow. The hope following extubation is for Annie to have a PH test done to measure the PH level of her reflux. This test is done by inserting a tube into her nose and then monitoring over a 24 hour span her various levels. This test can't be done until she's off the vent though.
Good news however....the nurse just called 15 minutes ago and said she was charting and all of the sudden heard Annie coughing and then crying! You can't cry out loud with the tube in, and the nurse soon discovered Annie had coughed or pulled the vent out. So, they just left it out and turned on the high flow O2--and she seems to be doing fine right now. Hopefully she'll continue to do well through the night and tomorrow they'll be able to run the tests.
One last thing. We have received so many phone calls, e-mails, texts, facebook messages etc from so many of you--thank you so much for your love and support. It means a lot to us knowing you are praying and thinking of us and Annie.
3 comments:
My prayers are with you guys and your family and your little Annie. Everytime I read the updates I think of what we went through with our little Matt. He and Annie seem to live parallel lives - the same issues, the same tests, etc. I remember Matt turning blue after a feeding and Alan giving him CPR to revive him. And ultimately, he was diagnosed with reflux after the all important ph test. Hopefully, Annie can stabilize in order to take the test and hopefully it will bring you answers and solutions. Keep us updated and if reflux is the diagnosis, please don't hesitate to call, fb or email with questions. We have been there and please lean on your friends. We are continually praying for you all and I do know the power of prayer in these situations.
Ryan and Nicki, I have been so out of touch. I've just been catching up on Annie's story. Please know that she and all of you are in our thoughts and prayers. I can't imagine going through even half of what you've been through. I don't know why, but Heavenly Father has seen fit to bless our little family with good health and I wonder at the trials in health that so many friends and family face on a daily basis. I hope you will gain strength from our prayers and knowing that we are with you in spirit. All our love!
It is so hard to see your baby like that. I agree. But you have to know that she's in the best hands right now. Hope all is figured out soon and she gets better with her breathing spells, sweet thing.
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