Fall 2011

I haven't updated since May and I haven't had anything big happen.
I am still battling a several different medical issues: a bummed knee (that will require surgery to fix), degenerative disc disorder in my lower back, heart issues, frequent pneumonia (caused by aspirating, can only be fixed by surgery), severe pain problems (even though I'm on huge doses of pain meds), there is more stuff, but these are just a few things I dealing with.
I have wanted to write more, but there just isn't much to say.
All I can do is ask for prayers.

Still Here

I know it has been a while since I last wrote, but I have had nothing to write about.
I had pneoumnia 2 weeks ago, and was in the hospital for 5 days. I'm still recovering from that. I have a cough.
I'm stll having issues eating. Everything hurts when I swallow.

My aunt fell Monday night and had urgery yesterday to put her ankle back together. She now has 9 screws and 2 plates. The ortho surgeon told my aunt that her injury/break was the worse the surgeon had ever seen.
She'll be on crutches and not allowed to put any weight on it for 6 weeks.

I have some other medical stuff going on, but will discuss when I know more. Please pray for my health, my aunt, and some other issues going on.

Cardio Appt.

Today was my Cardio appt. and I really liked the Cardio Dr.
I had some lab work done, and in 2 weeks I will have an echocardiogram done and will also be fitted with and wear a holter moniter for 24 hrs. The holter measures my heart beats/rythym for 24 hrs.
Today I had an EEG done and it showed that my heart is not beating the way it is suppose to.
Hopefully we can figure out what is going on, because I never knew I had heart problems.

I have a huge update on the way, but please keep me in your prayers.

Quick Update

Here is a quick update, since I am not feeling well and want to back back to bed.
I am still having alot of problems with my pain and I'm starting to have problems with the medication. Thankfully, I am seeing a new pain Doc on Thurs. (my previous one quit the practice).
Secondly, I am having 2 other scary medical problems, both will require me to see a specialist. The first is that I am loosing feeling in my fingers. This started about a month ago and has just been getting worse. I can be doing any number of everyday things and all of sudden I will realize that I can no longer feel my fingers. Sometimes it lasts for 10-20 min. , sometimes up to a hour. The second is that I am having problems with my feet swelling. I've had this problem off and on all year, but after not having the problem for 4 months when it did occur again, it took me by surprise. I don't know what causes it, but the #1 concern is that something is wrong with my heart. And since I have a history of heart problems, it is something I need to get checked out. Because of the swelling I can only wear flip-flops, as my feet are too swollen to fit into tennis shoes.

But, I do have some good news. My depression is getting better. I no longer have insoumnia, and I am able to go to sleep on my own, and without the help of a sleep aid. I am sleeping soundly at night and don't wake up in the middle of life like I used to.

Please continue to keep me in your prayers, and I will update better when I can.

So Many Things

Sorry for the lack of posts, I haven't felt like writing much.

I have an update on my health/care.
A few weeks ago my pain meds were increased & added on to. My main pain med had the dosage increased to 75mcg (micrograms per hr) and I had a secondary pain med added because my pain has gotten worse.
I am thinking that increasing that pain med has caused my sleep to be way off. I am not going to sleep well, sleeping all day/afternoon and up most of the night. My Dr. that I have beening at the pain med. clinic quit, so when I call the office on Tuesday I will have a new Dr., but don't know who yet. My sleep issues are becoming too irregular to go on much longer, so I will be calling the Dr. on Tuesday.
My mom has ordered some more feeding bags, so I will start taking tube feeds again. That will help, because I don't eat much anymore, atleast not enought to sustain me and give me the nutrients I need.
I started on a new, but been on before, anti-depressant and I seem to be doing better in that aspect.
I still haven't needed to go to the ER, but I have come close these past few weeks. I am very proud of myself for not going and for sticking it out at home.
I know that I am doing alot better health wise, except for my sleeping. Once that gets back on track I will feel good.
I am wanting to start volunteering at a local school, but can't do that with my sleep the way it is.

Now, I have some prayer requests:
1. My uncle was in a very bad motorcycle crash last week, and because of that he is having his foot reconstructed. Luckily he had his helmet on, because without it he wouldn't have made it. Please keep him in your prayers, as he has several more surgeries to go and is recovering from other wounds.
2. I little girl, named Brianna, passed away yesterday from T-18. I have talked alot about T-8 in the past and how most babies born with it, don't live past their 1st year, because T-18 is not compatiable with life. Brianna was 2 yrs old. Just making it past a year is a miracle. Please keep her family in your prayers as they deal with her loss, but they were prepared for this as she had been going down hill for several weeks.
3. Sara Rose is a 3 month old preemie, who was born at 27 weeks. She has been at home and thriving, but this past week she was diagonised with bacterial meningitis, a very fatal infection. Please pray that she will make it through this, and for strength for her family.
4. I have added a new prayer button for a little baby named Ryan. He had surgery this week, and is recovering well. Please check out his blog for more info.
5. Gavin, and his family are going through a really hard time right now. Please check out his blog for more info and ways you can be praying. You can get to his blog by clicking on his prayer button to the left.

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.

Is there anything else that can be done?

Well, I have started to take a turn for the worse again.

First off, the pain has returned with a vengenace. I am on my pain med, which is Dilaulid, and to give you an idea what kind of main med that is: it's about 10 times as strong as morphine. Morphine is what most people get after they have had surgery. I am on pills, and although I have requested liquid form from my Dr. he won't give it to me. If I had the liquid kind I could put it in my tube, and it would get entered into my blood stream and stop the pain faster. My Dr. said I could crush the pills and make it into a liquid by adding sugar and water, but didn't tell me how much of each to add, so fo now I will stay on the pills, till I go back to my Dr. in mid- Feb. for a check-up, unless I get worse. So, for that please pray that the Dr. will give me the liquid form.

I have had to cancel all my activites and other Dr. appts this week, because I can't drive on the pain meds, and I've been in to much pain to leave the house.

Second, the pain has been located in my intestines and stomach area, which means that something is wrong. I called to make an appt. with my gastro Dr. and the first available wasn't until Feb. 2nd. I was not happy, especially since I had spoken to the office manager and he said that he could get me in withing the next week. If I'm not better by Monday, I'm calling the office manager back. I had originally called the office manager because I wanted to switch Dr.'s because my GI had told me at my last visit that he doesn't know what else to do for me and that there is nothing else he can do. It's very disheartening to hear that from a Dr.
I have lost my appetite, and should be doing my tube feeds, but I can't motivate myself enough to connect myself to it again, since I have been doing so good for these past few months. I know that I will need to connect eventually to keep my nutrients up, but I just can't imagine going back to it.

Please pray that I can start wanting to do my tube feeds and pray that I can get an earlier appt. for my GI dr.

Third, the botox in my esphagus is starting to wear off, and it shouldn't be. The Dr. put double the dose in this past time, in July, and it should last 2-3 years, but it's only been 6 months. Swallowing foods is becoming increasingly difficult and more painful. My mom wants to go back to the Dr. who did it in St. Louis, but I remember him saying that if the botox didn't work, than he'd put a feeding tube in, and I already have that. So, I don't know what else he can do.

I don't know what else anyone can do. I have heard of 1 case of a person's esphagus being removed completly, and the small intestine being stretched into a new esphagus. That's very drastic, and I'm not there yet.

Please pray that my pain will either stop or something can be figured out. Pray that I can get in quicker to see my GI Dr. Pray for my body, as I being to start to relapse again, that it will stop and get better.

Life and Death

Today is Jacob Ryan and Mary Grace's 1st birthdays. But, instead of celebrating on earth today, they are with Jesus, celebrating with Jesus, while their families are celebrating on earth. Both of these babies were born with T-18. Jacob lived 138 days and Mary Grace lived 7 short hours.
Tomorrow is Magdalena Grace's funeral. Please wear pink in honor of her life. Please keep her family in your prayers as they prepare to bury their daughter tomorrow morning. Pray for peace, strength, and calmness.

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My health is taking a bad turn again, and I'm going back to the GI dr. later this month. I am desperately seeking answers, a shadow of hope, or some kind of procedure that can be done to help me get better, or cure me, but I don't think that exists. Today has been the first day in 4 days that I have needed my pain meds.
Please pray that I can find something to help me and pray for wisdom for my Dr.'s . Pray that the pain will go away and for a wanting to do what I know is good for me.