Wednesday, October 28, 2009

Yesterday's Surgery...

Sorry for the lack of posting yesterday -- I was just so tired.  Yesterday was a very difficult day for me, I think it was probably because things just started to sink in.  Gavin was very restless and uncomfortable all morning and would not even tolerate being held, which of course broke my heart.  


On the infection front, we were certainly loosing.  The cultures from two days ago began to grow a secondary infection, which often happens because when Gavin gets sick he tends to just get sicker and weaker and unable to fight anything off.  The even worse news is that it grew fungus, which is our number one enemy and the even worser news, if that's even a word, is that he also grew out a fairly common bug, but one that has become so resistant that we are now on isolation.


With that said, the line is now out so we just need to pray very hard that the nasty bugs didn't make there way to any other part of his body.  It's so hard to tell just how he is doing.  He's not really mounting a response to these infections beside being in pain.  He has not had a fever the entire time we have been inpatient -- but is obviously very sick.


Yesterday we also had another carnival of infusions, with Gavin receiving blood, albumin and IVIG.  I asked that he only be given a small amount, due to the fact that he is so swollen and his belly will only hurt more after the blood gets trapped in his liver and spleen.  I guess we will see what his counts do today.


Today will just be another day of managing his comfort.  He is now on a high enough dose on the Morphine pump to be switched over to the fentanyl patch.  I'm not sure if this is the plan or not.  We also have been looking into lots of different hospice options.  I was referred to a place that sounded like a prefect fit for our family with lots of creative therapies but later found out that we live out of their treatment area.  All the other places just don't fit us -- even their web pages make me feel like I'm in a nursing home -- that's not our life.  We are a young family - active and still full of so much life despite Gavin's illness.  I'm praying we will find some type of program.


Thanks for all your continued prayers and support.  In case you are wondering due to the rain I think our move in date to Gavin's House will be delayed -- I guess someone doesn't want to do electrical work out in the rain.


What's wrong with that?

21 comments:

Ellen said...

Praying for Gavin!

kate said...

Karen,
I'm so sorry you are dealing with all of this - and isolated to boot. I will continue to pray for Gavin and your family. I wish there was something I could do. Email me if you think of a job for me.
xoxoxo always.
kate.

Anonymous said...

Thinking of Gavin and your family today! Praying very hard! Try to keep your spirits up! Everyone is pulling for you guys! Always in my thoughts and prayers!

Tina said...

Praying hard here for you.

Tina

Amy said...

Thinking of you and praying for your family.

Anonymous said...

I've been worried about something and am going to come right out and ask. Will your new house still be yours even if the worst happens and Gavin doesn't get to come home to it? I would hate to think you'd have to find another place to live. Your family deserves THE BEST. You are amazingly strong and courageous and have been a inspiration to so many.
Just wondering...thanks!

Christina said...

We keep your family in our prayers, always!

I do have a quick question & I can't be the only one wondering.....how do infections keep getting into that adorable little boy. With being so closely monitored, and spending so much time in the hospital, you would think he'd be the most sterilized... "no infection getn near this boy" around.

Okay, so I am no doctor.......and there is probably a simple answer {and I might have even made myself look dumb even asking}..... I am just curious, because that seems to be Gavin's enemy.

Love & Prayers from Pooh's Corner

Karen Owens said...

Yes -- this house is and will be a huge blessing to our family both during this crazy time and also after it's Gavin's time to go.

Anonymous said...

Oh dear. Don't even know what to write. I have been following your blog and praying for you all for at least a year now. I am asking the Lord to lift you up and ease some of your weariness. I have to say, your last little line in today's post gives me great hope---are you weary, down-hearted, exhausted? Yes. Is there still the little spark of hope and even wry humor? YES, blessed be God. Prayers, hugs and lots of love for Gavin and his family.

Anonymous said...

Praying for Gavins comfort and rest. Thinking of you all!
~Moses'

Karen Owens said...

Christina -- Most of the time Gavin is neutropenic meaning he has almost no natural immune system and cannot fight infection. We all have bugs floating around in our blood stream but most of us can fight them off and we never have any type of complications.

Initially we were admitted with one line infection, with a bacteria that most likely came from his sick bowel and stomach. The lining of his gut is so thin due to his progressive diease that it allows bacteria to pass through into his blood stream.

As Gavin gets sicker with one inital infection his bowel and belly becomes even more weak and "leaks" or translocate addition bugs in to his blood and then they attach to the plastic catheter in his chest.

The hospital is the dirtiest place around. There are more infections aquired in medical institutions than at home. That's just how it is everywhere.

Sean, Chelle and Carter Cates said...

Adam and Karen,

Words cannot describe the emotions that we have for your family. Unfortunately, when you feel like you can muster the confidence or feel like you have the eloquent words of comfort, the days pass and you miss the opportunity. I want you to know that PRAYER in capital letters has been in full force down here in Texas for you every day and every night. Many days we check the site frequently to see the progress on both Gavin and your awesome gift of HOME. We are saddened that we cannot contribute physically to the renovation as we would thoroughly like to give in that way. Please know that your family has touched us in ways that only family can - and the truest of friends. We love you and pray that with the line out, Gavin may get better. Love the Maddie photos and glad the news story got posted (thank you Erin's Dream, too!). Stay strong Owens family - you guys are the rock of Gilbratar.

Love and prayers,

Sean, Chelle and Carter Cates

Chelle Cates said...

I just wanted to let you know we are praying and sending love from Texas. I hate that things are not better and I am praying for better days ahead!

love,
Chelle

Anonymous said...

I check your blog every morning hoping and praying that Gavin has somehow improved. I can't even fathom what you go through on a daily basis as his Mommy. Our prayers are with the Owens family.

Chelle said...

ok, I had to add- Sean and I are not in the same place, I didn't know he posted- see, just tells you how much we think about you guys... right!

Jen said...

still praying for you all!

Anonymous said...

Karen,

I'm so very sorry Gavin is so sick right now. My heart breaks when I read your words. The hardest thing I've ever done is sit by and watch as Ash hurt and know that nothing I could do would help her. Your strength and grace is amazing. As a mommy I know your heart is breaking, but yet you still find the courage to keep us all informed. Thank you for your thoughtfulness toward all of us. We are all standing with you, loving your beautiful children, supporting each difficult decision, and praying for God to grant you more days, more time, more memories and more blessings with your family. Hold tight my friends. Sincerely, Trish Adams

linaviolina said...

My mom and I are praying and fasting for Gavin right now at lunchtime. Just wanted to let you know! And our Tuesday night prayer group at Morning Star prayed for him yesterday! I mean, we REALLY prayed hard the whole time about an hour and a half for him and your family.
Just wanted to let you know.

amy said...

praying for peace, rest, strength, comfort....and that the perfect hospice group can be found for your family!

E said...

I work in hospice as a music therapist and know the power of those therapy options... they are SO important!! I get to bring comfort and peace to so many throughout the day in what could be their last days/months. I hate that the one program is not within your area! I pray that some wonderful program comes available for you in the coming days/weeks... MANY prayers and hugs sent your way for you and your family.

Lorra said...

Gavin is so precious. So glad he is resting. Praying for God to restore his little body. Keeping the Owens family in my thoughts and prayers.