About Me

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Born in Atmore, United States
Wife & Mommy. I have a wonderful husband who loves me deeply and three great kids. I believe in my Creator who guides me everyday. My favorite interest are stage/theatre, music/singing, antiques and art.

Thursday, August 14, 2014

St. Jude week

So...I've wanted to sit down and write, but who has time for that?
Updates and upcoming events are as follows.
 Ivee has struggled with congestion. It isn't really mucus, it's just thick, thick saliva. I think she has some allergies, and we used a prescription allergy spray on her. However, I don't think it helps. After the next few events, I'm going to push her to be allergy tested. Obviously, I will have no food allergies, as she doesn't eat by mouth, but seasonal allergies HAVE to be in the picture. For those who do not know the full understanding of her issues, the gist is:
Paralyzed vocal chord=aspiration of saliva
Aspiration of saliva=oxygen absorption problems in lungs, and enzymes getting into the lungs from the saliva that doesn't belong there
She has had to have breathing treatments throughout the day to thin secretions, and then has to heave to get all the secretions up as mom suctions them out with a machine. This all in an effort to keep her oxygen levels in the 90s (if you don't know, we all breath at a 97%+ oxygen intake as normal people, even on our bad days). Ivee breaths at 90-93 on a daily average, and when congested she stays around 88-89. These stats would put most of us in the hospital. She had pneumonia, for the first time ever, in June and the child is still struggling to get back to her normal. She has had a few xrays since in TX, and there has been something on the film to concern her pulmonologist. He believes it might be scarring from a previous illness, but is not certain without the following...Friday she had a CT with contrast dye Friday. We will receive results next week. 
We are in Memphis for MRI cancer scans and other check ups. She is a VERY hard stick, and by the grace of God, someone invented something called a J-Tip so she doesn't feel the shot. Every hospital needs these things! Emla creme and freeze spray are great, but J-Tips have them beat! She was stuck twice today, the first time she flipped, but the second time she was brave, as she keeps stating. We are, once again, praying for clear and stable scans. She is currently in MRI and we see Dr. merchant this afetrnoon. 
Ivee has a tonsillectomy/adenoid scheduled in Sept. She sleeps with a Bipap and oxygen at night, and does have some obstructive sleep apena. (This is quite evident when I am sleeping with  her  at night and she rolls on her back) I know she would benefit from the surgery, but oxygen is a problem, sedation is a problem, and that tiny little mouth is a worry.
PRAYERS- It's what we need, what we always need. Taking care of my little girl is a full time job, and not one that I can call into if I'm sick, tired or need a break. She is our families blessing, but it can be a huge struggle, especially in seasons like this one where I can't seem to do much to help.
I adore all of you that check in, pray and love on us. YOU are a blessing!!!

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