Gracie has been doing pretty well today. She is currently on another trial off the ventilator and she is holding her own. They are trying to have her off for about 2 hours this time. She has thrown up a couple of times. We have decided that she just hates her breathing tube and has an ultra sensitive gag reflex. (She gets that from her dad and sister!) So they want her to move around more to get rid of her edema (swelling), but when she does the breathing tube irritates her gag reflex and she starts to gag and get really mad and sometimes throw up. She also has a bit of a diaper rash that bugs her too.
The plastic surgeon came by and checked her incision and said that it looked good. Also on her echo they found that she had a pocket of fluid behind her left lung. They are hoping it will subside with the help of her diuretics, if not, they go in and put a chest tube in to drain it.
Other than that, she is doing well. Thanks for all the prayers!
10 comments:
Gracie is having a busy day. Our prayer's are with you sweet Gracie. We Love You so much. Take Care Tom and Michele, your the Greates parents ever.
Grandpa Gledhill
Isn't it amazing that "little procedures" for her would be major surgery for anyone else. She is a real trooper, I don't blame her for gagging, I would too if I had some tube down my throat! I gag on my toothbrush sometimes, hopefully she will get the breathing down and they can take that dang thing out!
God is working his miracles! That's so amazing that she is doing good! I'll still be praying for ya Gracie!!!!
Much Love and Many Prayers~
Allysa
Ryker developed the pocket of fluid a couple of times. They found out it was Chylothorax, and it is caused when they knick the lymphatic system during heart surgery. When they start introducing breast milk or formula, the body dumps the fatty liquid from the lymphatic system and into the area around the lungs. It is pretty common at PCMC, and they treat it by putting a drainage tube in, and putting them on a special fat free formula. My husband had it when he was 13 and had his heart surgery. Hopefully she will continue to do well with the trials. She is so strong and really an amazing little girl!
Good news about the ventilator, the more she gets feeling better the more she will start to hate the ventilator, good luck with all the throw up, I remember Sydney doing that a lot! I also remember all those trial runs off the ventilator it seemed to take forever before Sydney was strong enough to breath on her own. Every day the doctors would say "maybe tomorrow she will get off the ventilator," tomorrow came and they would say the same thing! Don't get to frustrated if it takes a long time for these little ones to finally be strong enough to breath on there own, especially after a machine has been breathing for them! Gracie is still in my prayers!
-Caralee
Wow-she has been a busy girl. I am sorry little Gracie that you are having to be bugged so much! And Michele-hang in there-these days are rough on the mama too!! Thinking of you always and praying for her to continue to make progress!!! Love to all! Shari
Oh I can't even begin to imagine what you two are going through as well. There is nothing harder then watching your children suffer through anything small let alone something so major. Hang in there! Everyone is still praying for that sweet Gracie and for you entire family! So many blessings already and so many more to come!
love,
Aunt Annette (or do I say Great-Aunt yipes that sounds too old)
Hugs and kisses for that little angel baby...
How is Max doing? I've worried about him...he's a good big brother!
Hug him for us!!!
It's so good to hear that Gracie is still hanging in there and fighting hard. It's good to have a little attitude/feisty temper! We are still praying for her as a family every day. We all love her very much and we haven't even had the chance of meeting her yet! Hang in there girl!
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