Wednesday, April 22, 2009

Updates and prayers.. many of each.

Two posts in one day, wow.

First off, Kayleigh is holding her own.
It appears that sometime during or shortly after her surgery last week that her brain had lack of blood and oxygen. But, again it's too early to tell. The good news is that she is coming down on her breathing settings (she's on a trach.), but since the surgery she is NOT breathing on her own. She is no longer on pain meds, her bp is normal, and her oxygen stats are on room temp. She has "woken" up, and moved around, but she has a blank stare and repetive movements that are consistent with being brain dead and a sign that something is very wrong. Her parents are asking for some additional tests to be done to see if there is anything that can be done to "fix" her or to find out what went wrong.
Please continue to keep this family in your prayers.

Secondly, I realized this afternoon that I didn't update about Stellan's surgery yesterday. He was the reason I didn't sleep night before last. I was awake praying and worrying all night. But, Stellan made it through the almost 5 hr. (suppose to be 3hr) surgery. Every possible scenario that could have happened did, but Stellan made it. God was truly at work in Stellan yesterday. He does have some residual/maybe permanent heart damage, but his heart is still too small to tell for sure. His mom posted about everything that happened during the surgery on her blog.

Third, last Saturday I went to the new Children's hospital in town to visit Dakota . Her mom came and visited me last year when I was in the hospital, so I returned the favor this year. We had a great visit, but sadly, Dakota will not be coming home anytime soon. Her situation is VERY complicated, so if you want to know more, visit her page. Please just pray for this family, as Dakota has been IN the hospital more this year than OUT of it, and it's only April. With this current visit, she has atleast 2, maybe 3 more weeks. Dakota has 2 older siblings at home, so time with mom is a bit different now. Please pray that the next few weeks go by quickly, and that this will be her last hospitalization for a while.

Fourth, Tricia is back in the hospital with pneoumnia. It has been a year since her double lung transplant, and she's been doing well. A few weeks ago she started feeling bad and could tell something wasn't right, but her tests came back fine. She went to the ER yesterday morning and that's when they found the pneoumnia. Please pray that she gets better quickly.

And lastly there's me.
I have been working all week on a post, and it still isn't done. It has never taken me this long to write a blog post. But, this post is very deep, and it is coming straight from the deepest depths of my heart. It has alot in it, so I don't know if it will be published in sections or all at once.

Today was a good day. I had lunch with my family out of town to celebrate my cousin's birthday. I couldn't eat but 3 very small pieces of a cheese quesadilla. Then the pain set in, and I am still hurting. While driving home, I called my GI Dr. and spoke with the office manager for 20 min. (supposedly there's a flag on my chart that whenever I call in, I talk to the office manager before making any appts.). I told him the same thing I've been saying for almost a year now. I've had 2 botox procedures in the past 8 months, neither helped or worked. I've been off ALL narcotic pain meds for the past 3 weeks, pain is still there when I eat and equally when I do my tube feeds. And hearing that in the year 2009 there is NOTHING that can be done is no longer acceptable by me. I want answers, I want to eat a "real" meal again. I don't want to be in constant pain. I don't want a feeding tube.
Tomorrow I have 2 appts. - a Dr.'s and my theraphy. I'm also having lunch with a really good friend. We're going to Souper Salad, since I know that I will be able to eat soup.
Friday is a big day as I will be volunteering with Austin's newest quintuplets!!! The 5 babies were born in January, and being a nanny and already having volunteered with Austin's first set of quints, I wanted more fun. I am doing this on a volunteer basis, I love babies & kids, God has given me a gift of working with babies & kids, why not put my skills to good use. Besides, with having quints, help is always needed and wanted. Hopefully my health will continue to be good and I will be able to help on a weekly basis. Something to keep me busy and out of the house.

Thanks to all those who have been praying for the babies this week. Sometimes, I wish that more people read my blog, but then I remember in time maybe that will happen. For now I am OK with the 10 or 20 people that read it. That allows me to post more meanigful things and know that it won't be traveling very far.

1 comment:

CFHusband said...

thinking and praying for you today, emily... hope they resolve your problems going on!