“Free Emily!!”
Sorry we haven’t been able to post till now. The Internet was down for 2 days at the time that I normally post. Then when it finally got back up I had a backlog of things to do and so posting got pushed back.
Emily has been doing okay on the c-pap. She has been at 100% (though the machine says 94%) for about 3 days now. Yesterday they even increased her c-pap to 8. She has occasional desats that I think are more or less mechanical then anything else. Normally they don’t go below the high 80’s. She was able to eat from a bottle/breast and was put on the high flow cannula to do so. However the last few days it has been clear that she needed the C-pap so I haven’t even asked if I could do it.
We put her in her Christmas dress on Christmas and she promptly decided to throw up on it within 30 minutes of getting in it. So unfortunately we were unable to get a family picture. We are planning on trying again but I don’t know when that will be.
She had some hum dinger of poo’s recently. Grandpa B you smell like roses compared to her. She actually makes your eyes water and one nurse said she felt like she was going to throw up just testing it (they test the poo for blood). In other words, when she stinks, run for the hills!!
What else can I say about her… Well the doctor talked to me yesterday and said that he is going to try one more c-pap machine that they are trying to bring into the hospital. This c-pap can give inspitory pressure (or pressure when she breaths in, I still don’t quite understand how it is different then C-pap but it is) which they tried to do on one of the other c-pap machines that they currently have and couldn’t get it to work. He says that if this doesn’t work then we should plan on going to the children’s hospital by mid January for the trache. We are nervous, scared, and I think I am a bit excited for that day. Excited because then we will have a set plan and road to head down and hopefully this would lead to her going home sooner rather then later. Also I want her to be able to take from the bottle and we can’t really do that now. I know that no procedure is not with out it’s risks but I hope that Emily will be able to come out of this relatively well.
That is about all the news I have for now. Talk to you all later!
Jennifer
Jennifer,
I am so sorry you are going the trach route but if it helps Emily like it helped my daughter it is very worth it. I was glad to see you posting on the message board at tracheostomy.com. Everyone on there is very supportive and you will soon concider them some of your best friends. I hope a miracle happens and Emily dont need the trach. but if she does you will get through it.
Hugs
mandi http://www.caringbridge.org/visit/alissa
She looks beautiful in her Christmas dress. I hope that you and your husband were able to spend lots of time loving on her over the holiday.
I hope the new CPAP works well for Emily. The pressure support with each breath is extremely beneficial.
I don’t mean to laugh at her, but I couldn’t help but crack up when I saw the picture of Emily in jail. I knew we were kindred spirits! I will have to free her tomorrow night for some extra play time.
Luv, Rebecca