Thursday, November 03, 2011

Seems like lately it's one trial, after another trial, after another trial . . . . .

I so wanted to keep up my last post a little bit longer, I love looking at all the pictures of the wonderful memory filled retreat weekend. But alas I need to update on how Luke is doing, since this blog is all about Luke after all.

Luke & I at one of his many Dr. appointments
It seems like since the end of July Luke has been having one trial after another, after another, after another. If it's not pneumonia, it's blood coming out of his g-tube, if it's not one Dr. appointment, it's another Dr. appointment, if it's not one blood draw it's another blood draw, after blood draw, after blood draw, if it's not one x-ray, ultrasound, x-ray, it's another x-ray, if it's not one procedure, it's another cat scan, if it's not one seizure, it's another seizure, if it's not gallstones, it's trying decided whether doing surgery to take them out is the right thing for Luke, if it's not trying this medication, it's trying another one unsuccessfully, I think you get the picture.

Gordy and I sat down on Saturday and had a real heart to heart talk about what we are going to do about Luke. I just don't know how much longer I can go without getting any sleep at night, it's not only hard on my body, my mind, my spirit, it's also hard on my other children as I can not be there for them as I should be. We both came to the conclusion that if Luke getting a trach is our answer to getting him the help that he desperately needs then we have to be willing to talk to the Dr. about this happening. Though it did take me a few more nights of no sleep before I finally put the call through to the Pulmonologist today. To find the courage and strength to make that phone call today is nothing short of a miracle for me.

I know many of you are saying what's the big deal about Luke getting a trach??? Lot's of kids have trach's, Luke had a trach, trach's help kids live better lives. A trach will most likely get you nursing help again, a trach will help get that gunk out of his lungs, a trach may help Luke take deeper breaths causing him to finally open up the lower part of his lungs that have been collasped for many years now. While all those things are most likely true, the part about getting a trach that I don't like at all is it complicates our lives, no longer will I be able to get just anyone that is willing to learn how to watch Luke, I will now have to be sure they are certified to do trach care.

While nurses are a huge blessing, they can also be a huge trial, we were blessed in the fact that after many months we found some great nurses, but finding those nurses caused many days and nights full of frustration and tears. Just imagine for a moment having someone come over to your house everyday, on all those days whether you feel like having someone over or not they are coming, you fell like you need to keep your house a bit cleaner, you fell like you can not always be the "real"you, you may live in fear that if you discipline your child in a way that the nurse doesn't agree with they could call CPS to do an investigation on your family, that has happened more than once to many of my friends. It's weird to go to bed knowing that you have someone sitting in your home awake, taking care of your precious child, thinking I should be the one to be there if they need something. I think you get the picture.

As mentioned above I did call to make an appointment for Luke to go into his Pulmonologist today only to find out that he is at a Cystic Fibrosis conference, he won't be back until Monday. We are therefore trying out a new Pulmonologist tomorrow. Will you be praying with me that he will help us think of some other options that we haven't tried yet before giving us the option of a trach?? I keep thinking we haven't tried everything yet and perhaps that one new medication or treatment will be just the thing that will help Luke out.

I am thankful, so very thankful for all your prayers, I know I say it over and over again, but it's true, they really are what keep us going. It is only because of God's supernatural strength that I'm able to rise out of bed everyday with enough energy to not only get through all the stuff I need to get done, but also with enough energy to walk at least 2-4 miles a day. The walk keeps me sane:-) May God richly bless you for your faithfulness.

Love in Christ,
Luke's Mommy Sue

1 comment:

Michelle said...

Great post. Nurses can be a blessing and at times a trial. We have nursing care for at least one more year (till Emily turns 18, DDD tells us that we get none after that). I'm so thankful for all the days we have our nurses. I've had a rough go with some of them, but I also have found great friendship and support in some others.

I think of you guys often.
Michelle & girls