Annie is doing well! After they closed her chest, she struggled some to keep her blood pressure up, but by that evening she had stabilized. She still has arrhythmias when she gets upset, but in general, they seem to be decreasing. Her bronchus has remained open and her lungs have shown gradual improvement every day. This is really good news and we are very grateful for how well she has done since her second surgery. Her recovery has been so much better this time around. It took her more than a month following the first surgery to reach the same level of recovery that she has reached following this surgery in about about a week. They are slowly removing lines and tubes, and hopefully we will be able to hold her soon. All eyes are again on the ventilator as we look to weaning her from it. Her ventilator settings are still quite low, and will not need to be adjusted much before extubation, but Annie is very weak. The focus is now on increasing her nutrition and helping her gain strength. The doctors have all expressed concern that Annie may not be successful in coming off of the ventilator as it is providing positive pressure that helps to stent open her airways. Of course, I am nervous about this and have known all along that this would be a very big hurdle for Annie. But, I am thankful for how far she has come and have hope that she will continue to make progress towards our biggest goal for her at this point: coming home to our family.
Thank you to all that have sent letters to Annie! I know that they will be a treasure to her some day. Thank you for your love and prayers for Annie and our family. This has been such a long journey, and it is far from finished, but you have stuck with us through it all. We really are so blessed.
Getting off of the vent can be such a long haul. We learned previously that nutrition is such an important part of getting off the ventilator. They burn so many calories just trying to breathe on their own and getting Annie beefed up will only help her in the end. We'll keep praying for you!
ReplyDeleteI am so happy that things are looking better for sweet Annie. I know the road ahead is still filled with many unknowns but I am certain she is in capable hands. We pray for you and your doctors and especially that you both will know which path to take when that time comes. Love you all!
ReplyDeleteSo glad to hear some positive news! Just wanted to send you our love and to let you know we put Annie's name on the prayer roll last week.
ReplyDeleteDear Annie,
ReplyDeleteIt seems there is never a day that I do not worry about you; your heart beats too fast, then too slow, your blood pressure rises, you get a fever, and today I learn you have been throwing up. I am sick in my own stomach as the worry carries me away.
The truth is, I am an expert at worrying, I mean a real pro, after raising 5 children of my own, and these were all healthy babies, your mom in the middle. My mind and thoughts return to you and your struggle over and over again in as the minutes of my life quickly pass, and I cry an awful lot these days.
When I sit with you at the hospital, I can see in your eyes when you are troubled: that you are in pain, or uncomfortable or need the nurse to come and suction you once more to make breathing just a little easier. My heart aches for all you are going through, and I feel at a loss to really help you in any way at all. I lightly touch the top of your head and hum a little tune to you and you close your eyes, almost every time. I believe that you know I am there, that maybe, even, you have started to recognize my voice.
It hurts to watch your mom and dad go through all of this as well, loving you so very tenderly as they do. They long to bring you home. Your mommy chose your first name, Annie, and your daddy chose Grace. You could not have a name more lovely or fitting. You are truly a beautiful little girl, with the brightest eyes I have ever seen, my first thought every morning and my last at night. You are a gift in every way, teaching me lessons each day I live, more than you will ever know. I thank you, Annie Grace,
With so much Love, Gramma Teri
My name is Janalee Adams. My son has Tet as well and will be having his full repair on Tuesday. I have been following your blog and reading about little Annie. I am so glad she is doing better now and I hope she continues do get better and gets to go home soon. I would love to meet you and Annie next week. It is amazing what the Drs can do now days and gives me full confidence in them. You can read my blog if you would like to. It is randalljanaleefamily.blogspot.com
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