Tuesday, March 24, 2009

Fear...

There are so many things that I am fearing today. In an effort to get them off my chest I'd figure I'd tell you all about them...

One is that Gavin will never "wake up." For those who do not know, ever since Gavin's surgery to remove his large and small intestine as well as his gallbladder, he has not been the same. He is in a sleepy, floppy and withdrawn state for much of the day. Today was particularly bad -- he slept for 24 hours -- and he is still asleep. At this point we are naming the Mito as the culprit -- his body's energy stores are completly depleted leaving him totally drained.

I fear Gavin will never pee again on his own, forcing me his mother to invade his last area not taken over by tubes. I hate that I know that in four hours I'm going to cause Gavin pain -- breaks my heart. I'm mad that we can't leave the foley cath in due to his high infection risk.

I fear that the surgery was unsuccessful. This fear has no basis as cultures are still negative. The only way we could say that the surgery did not work is if Gavin starts to have cycles of sepsis due to bowel bugs, which he has been clear of for over a month now.

I fear that I will not be able to keep this up -- I'm getting tired and there are days I pray for a "new job."

With all these fears -- somehow I'm still looking to the One who conquers all fear. Although my words sound lost at times, deep in my heart I know we have not been forgotten, and though we may feel this life sucks, Adam and I both trust that there is a greater purpose in all of this chaos.

As for Gavin -- He is a swollen little boy. His eyes, from which I can tell, are almost totally swollen shut. His counts have all drastically dropped and he received some albumin this morning in an effort to pull the fulid out of his tissues and back into his vessels. We are running lasix now and I convinced them to place a foley for a few hours to let his pee drain freely. Ever since the antibiotics began Gavin's fever broke. What caused the fever and the drop in blood counts?

We don't know.

22 comments:

Jennifer said...

I'm so sorry, for everything. I feel so helpless...I can only imagine how it must feel for you. No, I take that back, I can't imagine. But I can pray. I can, I will, I am, and will continue.

Kris said...

I'm so, so sorry. I have no words. I feel your helplessness through the blogwaves and have been praying for your family - for Gavin since coming across this blog a month or more ago. I have nothing more than to join you by faith, that God has not turned His back - and am praying. And praying some more.

twinkle said...

No words...just praying...

Lindsey said...

Praying for you and your family and especially Gavin. I hope his pain is lifted soon.

Ashley said...

I'm just so sorry. For his pain, for your fear, for everything your family endures. I don't have the words, but I feel yours deep in my soul. Sincerely, Trish Adams

OConnor Family said...

We know that no words that we have can help today, so just know that you are in our thoughts.

Jason, Deb, Ryan & Sam

all4boys said...

Karen, it's okay to write out your frustrations...we're here, and we're listening. I wish I could do something more than this...but I've been praying for Gav. all day. Love you, my sister in Christ.

Jodi R said...

Karen and Adam, I wish I could give you a big hug right now! I don't know what else to say. Wake up Gavin.

grey like snuffie said...

praying

~ Lisa @ AbidingThere~ said...

Sweet Mama. Just crawl up in God's lap, let out a deep breath and have a good cry. I know you must be so exhausted - physically, mentally, emotionally. We will be strong in prayer so you can rest. Tomorrow you can wake up and get your God on - fresh and new for the day. Tonight we've got you covered. You can rest.

brandiandboys said...

karen... my heart breaks as i read about your fear and pain. i'm continuing to pray for gavin as well and you three. love from tennessee.

Anonymous said...

I am so sorry. I know that no words can help with your sitaution but I just wanted to know that I am praying for you all.
Em
from Australia

Anonymous said...

Karen, As I read your post it reminded of how David wrote in the Psalms. You poured out your struggles and your fears and then you still mentioned of your confidence in the Lord and His purposes. That is alot like the way David wrote. I continue to pray for all that concerns you and your family. Again I want to thank you for sharing your journey here on this site. You, Adam, Madi and Gavin are aweome testimonies to many people of how awesome are God is in the lives of ordinary people in extraordinary circumstances. Be blessed and be safe in Him! ~Debbie Heisey

Tiffani said...

Jehovah Rapha--the God who Heals...

I am claiming healing and improvement in that sweet name...

and that your fears will be quieted...may be slow but sure...

Tiffani

Kelli said...

Praying for you right now as you are fearing so much and feeling so worn. May the Lord lift you up and sustain you.

Just Another Ordinary Miracle said...

Karen,
I am speechless. I wish I could be there and give you help. Just a break from the continual routine so that you could rest. You know, sometimes with drastic changes Ivey sleeps more. Once upon a time when she was first trached, she slept for a month solid, but then gradually started coming around. Maybe it will take time - more than our patients can tolerate. I remember the fear of wondering if she would ever come back. I wish I could help.
G.

Anonymous said...

There is peace, strength, joy and refreshing in the presence of the Lord. I know that in this time of chaos it is hard to make yourself find time, but press into His presence. He knows how you feel and He has Gavin in His hands.
- Arkansas

Linda Marie said...

Hi Karen,
You don't know us, but we pray for your family and for Gavin. We've been through similar troubles with my daughter (though she is much older, she also has mito) and we had a terrible time with her after her surgeries (colectomy, splenectomy, open-heart, etc.) and septic problems with bacteremias and fungemias. She couldn't wake up and could not understand anything around her. Her body was so depleted that her adrenals had given out and they had to give her high doses of steroids. Hang in there, God's strength will sustain you. I well remember that fear (and will likely visit it again as the disease progresses) and hope you can take some comfort in this:
"Let us courageously cast all our fears upon the Lord and leave it to Him to dispel them." "'Twas Grace that taught my heart to fear and grace my fears relieved." (from Mark Mason's "The Gospel According to Job").
We pray things get better quickly!
-Lyn

Rob, Tina and the boys said...

I've been reading for a while now and following your journey. I have no words for you, just my thoughts and prayers for strength.

Tina

Robyn said...

I just don't know what to say. I'm so, so sorry. I am praying, and crying, and praying some more. Sure wish I could do more...

Anonymous said...

Karen & Adam: We don't know what to say. Our hearts break for you as we cannot even imagine what you are going through. We can only pray that your Faith will hold you together and keep you strong.That God will surround you with His Presence and that you will not feel alone. Know we are holding you and Gavin up in prayer...Love you guys!
~Marilyn & Randy

Taria M. said...

My heart just breaks for all of you... for the unknown, the fears, anxiety, exhaustion - all of it. I cannot imagine what you feel. You are all in my prayers, and will remain there. I know it may not be in the ways you want or expect, but GOD WILL PROVIDE for all of you, and He loves you.