Well, Just received a bit of bad news, I'm posting this yes, at 2:13 am this morning because I can't sleep. Cammy was taken off of Nitric Oxide today for about 8 hours and she has gotten worse. We went to see her today and she didn't look so well, her lungs were really compressing, just found out they had to put her back on the Nitric Oxide and turned up her oxygen to stablize her again, she had a partial right lung collapse. They gave her a c-pap to help this also. The nurses think its the strain on her body from having the operation since she had the nitric turned down and practically off and she seemed fine before the operation. Maybe, hopefully its just a temporary set back. We are going to talk to the doctors in the morning and see what the next step is. The nurses think it will take some time for her to recover and then they can start to reduce the amount of Nitric Oxide until it is gone. Thank You StaceyO and goldengirlfan, You gals have helped make my day a little easier. Thank You all for your thoughts and prayers....
Hang in there SDman. By the looks of your little girl, you and your family loads of good times ahead with her. Loved those pictures you posted. Well, except for the scary looking man in one of them! Take a load off and try to get some rest. Soon she will be home and keeping you up at night for real.
Thanks Grad99. We just talked to the doctors and they say she has pneumonia now. They say it is a minor setback? Anyway she should be better in a few days and that they will call us if it gets worse. Were back to the waiting game! :dis: :cry:
I'm sending more prayers and good vibes your way. Why do precious little babies have to struggle and suffer?
I don't know nor do I understand it, If there is a god and I think there is one Since I am a christian, there has to be a reason. Not that long ago I talked to someone by email who has been at this forum before, I don't remember their handle here but they lost a child to cancer 10 years ago and I think the child was around 14 months old. I'm hoping that one day I'll know the answer to that question, it may not be in this world! :yelwink2: It can always get worse I think? I'm going to leave for the hospital real sono and see her. They have put her on the ventilater and the doctors are optimistic that she will be ok again given a little bit of time. God Bless and Thank You!
God bless Cammy. It is one of those strange questions. I wrote a column in The Dallas Morning News about a Sept. 11th victim who shared my birthday (9.22.70) and died in the attacks 11 days before his first child was born. I felt close to this victim I'd never met because of our birthdays and because my first child was only a month old on 9/11/01. Later, his wife in New Jersey wrote to me because she'd seen my column on the Internet. She had many of the same feelings which she was working through. Why didn't her husband get to meet their daughter? Why was she robbed of her husband just days before their daughter's birth? I know that there is a God because I have felt his presence many times before. Still, sometimes things happen that test even the most faithful people. Keep your faith, which I know is a challenge because I don't know how I would handle such serious health problems with either of my daughters. I assume that God would hold me up, as He is doing for you these past few months.
A new Cammy update.... Cammy looks much better today than I've seen her since before the operation. I went to a G-tube class today to learn about the stomach tube and how to maintain it, what to do if it comes out, etc. If you have a child with pulmonary Hypertension you either have to go to Denver or New York, Luckily we are in the Denver area. I can only imagine how worse things could've been had we lived somewhere else. I met Dr. Ivey for the first time today, he is the #1 pulmonary Dr in the USA from what I've heard. You could geaux to the pulmonary hypertension board and read some of the stories of how he's saved childrens lives. I thought he would be quite older, aren't impressions before you meet someone always wrong? Cammy has 2 holes in her heart, they don't seem too concerned about those yet. Her heart doesn't pump the blood the same from the left side to the right but her body is adapting. I was told also that the infection in her lungs could've been created by her acid reflux before the surgery on Tuesday. She had acid reflux pretty bad before they tied the top of her stomach. Milk and stomach acids could've went up into her lungs in other words. I've been told there are childrent and adults out there with similar issues, the body adapts well, when your young anyway. I also learned that there could be a child with the same problems as Cammy but have something totally different causing the problem. Through this whole process I am slowly becoming a nurse? Cammy is now 9 lbs 10 oz's by the way. The doctors did an echo yesterday and found NO difference between Cammy on Nitric Oxide and off of it, that is a big, big step. My biggest fear the other night was that she would need Nitric Oxide and we would've been back to square 1. The doctors are waiting for the infection to go away then she will be off the ventilater and the Nitric. Her ventilater was at 55 and now it is at 35 Thank You all and God bless!
