Tuesday, August 25, 2009

Another Night

Last night and yesterday were pretty rough.

Since I didn't sleep a wink Sunday night, my head was spinning all day Monday. There's so much information and so much to do. I was stressed out before, but now with the added burden of diabetes and all that entails, I'm on overload. I became extremely frustrated with the diabetic educator since none of the information she was giving us pertained to Kendall. (for instance normally if blood sugar gets below 80, you give juice, but with Kendall on the Ketodiet, its 60) She didn't have any good answers for us. She finally madethe decision to meet with the Dr.s and come back tomorrow. Complete waste of time.

After a very traumatic blood draw, my mom and I had to leave the room or else we were going to hurt someone. They ran out of places to draw blood. They were looking for a vein in her HEAD.

Because of the extended period of time she was screaming, she of course developed a runny nose and sore throat. We haven't been able to get her to eat a bottle since we've been here and she started to sound very raspy. 3 breathing treatments later, she still looks like she's struggling to breathe. It is slowly making its way down to her chest. Needless to say, not much sleep again last night. She will be receiving a chest x-ray today.

Today we should hear from the Metabolic Geneticist. I have a laundry list of questions for her. Apparently performing the muscle biopsy is a familydecision. Justin would like to know, Im not so sure. I broke down a few times yesterday. I guess I feel like we are coming to a new crossroad with Kendall. I spend so much of my time and energy just hoping and praying and working on seeing some (any) development. I often thought about how lucky we were none of her issues would get worse and she wouldn't lose skills she was able to master. Now I feel like we may be heading in a new direction. I took for granted that her organs would continue to work properly. I feel like I'm reaching a new place. A place where we need to just take one day at a time and celebrate every moment we have with her. I've been angry with myself for not doing that sooner.
She is so precious to us.

Big thanks to my friends and family. Theresa was here last night wheneveryone else went home and she was able to pull me out of my funk. My amazing friends are preparing dinner for Justin and Kamden throughout theweek. My sister has been great handling work issues for me too. Apparently some people just don't respect family medical leave and if I had to talk to them it wouldn't have been pretty. My work phone is also my regular phone and I had one guy call 6 times in a row. Seriously?! My parents have spent countless hours here with us and Im so grateful. Justin wont be going in to work today so at least some relief is in my near future. Kendall won't stop crying unless she's being held.

Please continue to keep us in your prayers.

12 comments:

K D said...

You and Kendall are all in our prayers.

Cjengo said...

Many prayers!!!

Val said...

You are solid as a rock, and your courage is amazing... Blessed be!

C. said...

You are in my thoughts and prayers. You are amazing and holding it together probably better than you think, you are still walking, talking, and moving forward; that's what your little girl needs. Vent in any way you need, you are an inspiration!

Karen Owens said...

If you have any questions regarding muscle biopsy let me know. We have been there done that and had a lot of conflicting feelings.

adamandkaren@comcast.net

jamie said...

my heart goes out to you guys, it really, really does....your in my thoughts.

Rochelle said...

You are in our prayers for strength, peace, comfort and great test results for Kendall.


Jason, Rochelle, Aidan & Alayna (friends of Kelsey)

Reagan Leigh said...

We're actually at that same point with Reagan. I think we're definitely going to go forth with a muscle biopsy to check for mitochondrial disorder in the next couple months. I've been told by the doctors that it's unlikely but she could very well have it. So although her skin biopsy came back negative, the muscle biopsy could still come back positive. Hang in there! I'm so glad you have a strong support system to help out right now! Please let me know if there's anything we can do!

Lynne Christen said...

Hi Jocalyn,

I am so very sorry to hear about Kendall's problems. It was so heartening to hear that your vacation here in Destin went well and she was seizure-free for the entire time. Sending lots of energy and prayers for Kendall and your family. I only hope if we face similar trials we will have your courage and strength.

Lynne Christen
Camilla's "Diva"

Anonymous said...

Please don't be offended by the nurses looking for a vein in her head. We know how awful that is to know about and/or watch. Sometimes it is the best site, though. They may have seen visible, good sized veins, versus blindly sticking her and hoping in another place.

therextras said...

I am praying for Kendall and her family.

Barbara

Anonymous said...

Jocie- I was just taking a few minutes to catch up with my blogging friends and I'm glad I did. You are amazing and just wanted to remind you we pray for Kendall and ya'll everyday. We will continue to do so.

Love you,

Susannah & Jon