Saturday, January 3, 2009

Oh Goodness...

I really wish I could give everyone who reads this blog a glimpse into how our life really is. The colors of emotions that are seem in one given day is enough to fill a rainbow. For example, Gavin was very sick yesterday, crying a lot and generally in a lot of pain. In that same day I spent about an hour in the hall with Madison and the Nurse Aide playing a crazy game of twister filled with giggles and smiles. Within five minutes of entering Gavin room again I have a talk with some of the nurses about end of life issues. This back and forth is what really makes this journey difficult. So many other families sit next to there children today in this and other hospitals feeling this same range of emotions. Many have other children at home, husbands at work and friends somewhere back on their path. It's a crazy life.

With that said -- Today Gavin took a turn for the better. So we all sigh with relief but at the same time our frustration levels rise even higher as we have no answers for the chaos churning in his body. These are the things we know:

Gavin's blood counts dropped and today he will be transfused.

An ultrasound yesterday sent panic through the chain of command that Gavin's spleen is "huge" (we already knew that -- but it was interesting seeing the look of their faces)

That same ultrasound also revealed that Gavin has Gallstones -- go figure. I guess he has been sneaking way to many double cheeseburgers. The doc does not think that this is related to this current episode but now we have another problem that needs to be monitored.

We did a culture from his J tube which still shows fungus living in the bowel, which can be normal but we were hoping there wasn't any as he in on so many anti fungals and as we know from history whatever bugs are in his bowels will eventually end up in his blood stream.

Our doctor is going to be away for one month starting Monday. Ahhhhh -- can you sense my panic? Thankfully today he will be sitting down with both Adam and I and discussing every possible scenario and what we need to do while he is gone.

Thanks so much for all the support on our last post. Adam and I sit here at the hospital and read them all, which gives is so much comfort. When we are so far away from reality is is often to easy to get lost and feel alone. Thanks for choosing to be apart of our life.


Anonymous said...

Praying for you all! We love you!
Doug and Sarah

Ilina said...

Your post title are exactly the words that came out of my mouth when I read it. Prayers for you all. Your little guy is such a cutie.

Domestic Extraordinaire said...

Many hugs and prayers coming out to you. I have never been here before, Psychmamma sent me. I will come back and I will keep praying for your family. (((Hugs)))

grey like snuffie said...

Astounding what each day can bring, thankful He knows before and can be all you guys need!

Father, I thank You for all the wonderful doctors, nurses and other staff; continue to grant them Your wisdom. I'm thankful that even though Gavin's doctor is leaving for a month YOU are not. Help the transition to a new doc for awhile be smooth and grant them favor with that person, that communication will flow well. Grant the new doc LOTS of wisdom to step in and watch over Gavin.

Father, I can not imagine a more bizarre daily life but God You know what they need. Thank You for fun times, thank You for turn arounds that don't make sense. Lord, I would boldly ask that You dissolve those gall stones, in Jesus name!
And most especially continue to whisper to little Gavin of Your love, that in his way he knows Your presence, Your comfort. Words seem so easy to speak but Your Spirit can ignite them in Karen and Adam's spirit to revive them, strengthen them, help them to persevere and to know Your peace.
Thank You for hugging Madison and helping her through these days. In Jesus name, AMEN

Anonymous said...

There are no words. But I am so, so very sorry your darling, precious boy is not well and that you all must endure this. Your whole family is in our prayers.

Lena said...

Oh Goodness is right! What a whirl tunnel! Thank God baby Gavin turned the corner in some way and is feeling a bit better. What a little fighter. We have SO much to learn from him :o)

Karen and Adam, I am sure it is very scary that your doctor is leaving. But I am sure everything happens for a reason and for the best (I know, at times it's impossible to believe). I wonder if a new doctor will bring a new perspective, a new glimpse into Gavin's situation and may be will see something unique that will help him while others who're closer might not pay as much attention to.

Hugs to you and kisses to Gavin and Madison

Anonymous said...

I'll say it too, dear sister..."Oh Goodness"...even though I've been following your journey for the past several months, my heart just dropped when you wrote "end of life". I can not imagine how your mother's heart aches, but I do know that our dear Lord is right here with you and I am so grateful that you know this as well.

"For I know the plans that I have for you (GAVIN, Karen, Adam & Madison) ," declares the LORD, "plans for welfare and not for calamity to give you a future and a hope". Jeremiah 29:11

Oh I WISH that Gavin's "future and hope" was here on earth at least for the next 8 or 9 decades...but since this does not seem to be the case, my prayer for you is that you(somehow?!?!) find comfort in the "future and hope" of heaven.

Continued prayers, tears and hugs from a friend you've never met in Michigan.


Anonymous said...

First of all, you captured a beautiful shot of Gavi in teh hospital... I know you want to have some hospital photos but dont want them to be depressing (for lack of a better word) that picture from yesterday was perfect.
(i hope that didnt sound weird)

I am glad he is feeling better, but I know that doesnt erase fears and anxiety adn take away all the underlying issues. Karen-- i am praying for a moment of peace for you today...and a burst of refreshing far more than a cup of coffee could offer.
wish i could be there to sit with you.

Heather of the EO said...

You have a beautiful boy. I'm so sorry for all that you and your family are going through.

My son recently had a brain shunt put in (hydrocephalus) and all the medical stuff was so scary and stressful. While at the hospital I thought A LOT about families with on-going conditions that keep them spending much of their life behind those walls. One mom said, "Oh, you just get used to it, it becomes home." Ugh. I'm so sorry. It's so hard to see your baby struggling. I hope you find answers and healing comes quickly.

Prayers to you


Heather said...

The tide rolls in the tide rolls out.So goes the ebb and flow of our lives.But with each and every wave comes a bit of stillness .... if only for a moment.And in that silence we are able to hear a voice saying,no matter what,I will not abandon you.I will walk beside you and I will carry you when life's load has weighed you down.Your load has been far too heavy my friends.Gavins load has been far too heavy.I wish I had the words to lighten that load.I wish,on our own journey that we continue to navigate, that I have had some epiphany of wisdom to impart but I do not.So we rely on our knowledge of One far greater than all of this and we turn to those who love us and support us.We love you and support from afar Owens family.Peace.

therextras said...

The thanks goes to you - for sharing your loving struggle with us.

Gavin (and you) have likely touched more people's lives than you will ever know.

Praying for your whole family, Barbara

ISO (In search of) said...

I'm so glad he's doing better tonight. I'm praying for you all.

Anonymous said...

I "came upon" your blogs through a blog of a blog.... And I'm not one to leave comments, but ever since I started reading on here, I think about the four of you so often and pray for all that you're enduring. I just wanted to say Thank You for being an example of the selfless love of Jesus. The strength and perseverence that you show as a family is more amazing than words can really express. To me you are a beautiful example of our Saviour.
I pray His covering, peace and rest on the four of you in a powerful way, In Jesus Name.
Rachael in California

Anonymous said...

We are here for you, praying, praying, praying....May you sense God's strength and presence today.
~Marilyn & Randy

Lisa and Michael said...

Hi Adam and Karen and kiddos, we were sad to miss you all during our trip up at Thanksgiving this year. But we've been reading the blog and praying for you all. (I've also got my parents praying for Gavin now too!) Can't possibly imagine all you're going through, just want you to know we love you and you are in our thoughts and prayers. Thank you for sharing your beautiful son with us all, his strength and courage are an inspiration, all of you are. Love and Hugs, Lisa, Mike, Josiah and Lydia Walk