My daughter was born on christmas eve (12/24/12) and she was perfectly healthy and wonderful. Things were good... for a while. Then about two weeks later she started getting a little sick, a small cough which was hardly anything and what seemed to be a little congestion. She was sick for a week and things started to get worse, she was coughing worse and turning red from trying to cough so hard when she needed to and was occasionally throwing up from it. I finally took her to an urgent care on a sunday, it was january 13th. The doctor there completely misdiagnosed her and said she was a little congested and would be better by tuesday. Wow was he wrong.
He gave me some medication for her which turned out to do more harm than good, with in a 24 hour period she went from bad to almost dying.
On monday the 14th, she was pale, hardly breathing and wasn't eating anymore since the medicine completely knocked her out. Her fingernails had turned purple and she was dehydrated from lack of food.
I took her to her pediatrictians office without an appointment, which some offices let you do that, and they looked her over and took good care of her but she stopped breathing for what was probably seconds but it scared all of us. They grabbed her from me and called an ambulance to take her to the hospital.
She was rushed in and after one simple test that takes half an hour to get results to, they discovered what they had already suspected.. she had rsv.
(Respiratory syncytial virus)
They got her stabalized and then transferred her to cardinal glennon children's hospital in st. louis missouri which is one of the top hospitals in the country. She was brought in on monday january 14th. They kept her on cpap for a while but on tuesday the 15th they finally had to put in a breathing tube. She was also on a feeding tube.
She has slowly made progress and a few days ago they told me that she has a bacteria in her lungs called h-flu. It's not an actual flu and they gave her antibiotics to get rid of it. She has been on two different anibiotics and given breathing treatment and medicines to keep her calm and of course tylonol for any discomfort or fever which she has had almost every day. There is probably more meds but that's the basics.
About 4 days ago they had to put in a new iv because the one they had went bad and sadly they had to put the new one in her head which is one of the most horrible things. I really hope she never has to have that again.
Today is january 25th, she turned one month yesterday. We are still in the hospital but she has made a lot of progress today. This morning she got tired of having the breathing and feeding tubes in and pulled them out even though she had been restrained for a week now. The breathing tube had been turned down all the way so she wasn't using it much but the doctors weren't quite ready for it to come out.. I guess she had other plans.
Right now she is on a high flow nasal breathing tube which just barely enters her nose, so no real tubes going anywhere anymore. They are already weaning her off of it and she was able to keep the feeding tube out too. Unfortunately, they won't be feeding her until she is completely off the high flow and put on the regular which is making her cranky.
The iv in her head went bad today too so they put a new one in her arm which looks a lot more comfortable. Hopefully it will stay good until we leave.
She has made tons of progress today. She will probably be taken off the high flow tomorrow sometime, hopefully in the early morning so that she can finally eat.
Which if anyone is wondering, I am pumping breast milk so that she can continue breast feeding when we go home. They were putting it in her feeding tube and now they will put it in bottles so that she still gets the good boobie milk. :)
I am so proud of her, she has been such a fighter. A week and a half ago she almost died from a virus I have never heard of and now she is probably days away from going home with me. Which by the way, I have not left this hospital since we came in and after this people are probably going to have to fight me to hold her. lol
I can't wait for all of this to be over. I finally got to hold her for the first time today since that tuesday morning on the 15th before they put in the breathing tube.
It was heaven.
I don't really know why I am posting all of this, I guess I thought that maybe our story would educate people on rsv. I had never heard of it and look what happened. It wasn't all because of the virus, it didn't help that a doctor sent us away without doing any testing but from now on I can tell you that when rsv season hits (fall to spring), I'm gonna be looking out for the symptoms.
Thanks to anyone who actually read through all of this, I know it is long and I went on forever. I hope that nobody has to go through any of this with their baby.
Take care and I pray for all the sick babies and children out there. There are way to many here and I feel awful for the families.
I will let everyone know what happens next and I'm really hoping that we will be out of here on or around monday the 28th.
Mackenzi - 1/17/13