Tuesday, November 18, 2008

Will this all ever End!

If its not one thing it is something else. Everything is either a little worse or their are new things. The Dr's aren't sure what is going on, so tomorrow she is going to have a double PIC put in through her arm so that they can have more access to her veins.A PIC is another central line instead of a second IV that we have been using in her hand. Her veins are just too small to maintain a continual IV in the hand or foot. Then while she is under anesthesia she is going to have a biopsy on a nodule on her leg. She developed the nodules today, or at least that is when we found them. We have since discovered at least 6. They think that what ever infection is invading her has built up in a couple little spots on her body causing the nodules. So hopefully biopsying them tomorrow will tell us what is going on. She continues to run fevers over 103 degrees, they break with Tylenol, but they just return toward the end of the 4 hours and then we take Tylenol again.
She is also being taken off the NG tube (feeding tube) but unfortunately that is not a good thing. She is going to start being fed through her IV. That is not a normal way for the body to process food and so it is the least preferred way to feed someone, but she is just not tolerating her feeds and her brain has shown some shrinkage due to the lack of nutrition. I know that sounds totally weird and scary, but the Dr's have assured me it is OK and it will return, she is just lacking nutrition right now and the brain is made up of fat, so as she is losing fat through out her body she is also losing it in her brain causing a slight shrinkage. Obviously it is not a good thing, but they assure me that she is young and very resilient and that this does not mean she will be brain damaged, I don't know if there are any side effects to expect, I was a little overwhelmed to ask.
She also had another CT scan today to look at her lungs and to make sure nothing has popped up anywhere else.
There are lots of other things going on too, but honestly I am exhausted and not feeling much like talking about it any more. I am sorry if that sounds cruel or short, I don't mean to be, I am just feeling a little overwhelmed and tired by the days events. It has been a long and busy day trying to figure things out.
I am hoping tomorrow will bring some answers.
This is a list of all of the different Dr's and specialists that were in our room today, I just find it interesting to share this: Oncologist(several times a day), Oncologist Nurse Practitioner, Infectious Disease Control Dr., Cardiologist, Surgical Nurse Practitioner, Wound Nurse,Speech Pathologist, Physical Therapist, Occupational Therapist, not sure what to call the CT person who did the ct scan, Social worker, Case manager, and our nurses. It makes for a very busy day dealing with all of that and emotionally just very draining.
She did play with some play dough during Occupational therapy and that actually went well. It is at least one good thing that we can get her to start interacting more.

4 comments:

Eric & Penny Kunz Family said...

I am so glad to hear of improvements even if there are setbacks as well. It's the improvements that keep you going. When I read your post "Breaking Point" and talking about being a robot I could so relate. When our daughter was sick I was just that: a robot, non-emotional, strong, I think part was personality and the other part was the Lord carrying me through. It was later after she was home and well that I cried and grieved. It was so odd to me and I still feel myself recovering and I think to myself I should just be so grateful that my daughter is home and well but I really did have to grieve. So as I read your post I guess I wanted to let you know I understand. Our stay was so short compared to yours but I have often compared that trial to a cup that was full and by the end my cup was empty and just now am I feeling like its full again. Hang in there and we will pray for a Christmas morning all together for you.

Joel and Kristie said...

I am so sorry that you have to go through all of this, you don't sound cruel, you just sound like an exhausted mom that wants her little girl back! I'm sooo sorry!! We are going to fast for your sweet family this month and keep the prayers flowing your way.

Unknown said...

Love you guys,-Fryars

Sharon Gallup said...

Jenell,
I want you to know that our family still thinks about you every day. Brooklynn still talks about when Avarie gets better, she can come over and play. I have something that I would like to bring to you. If you could let me know when you will be home next, that would be great. If it would be better to just drop it by anytime, just let me know. WIth Love, Sharon Gallup