Home Sweet Home!

We were discharged at 2pm today by Dr. Jen Arnold(yes, that doc) and after the nurse provided more explanation than the biggest idiot on the planet would need, we were off. The drive was uneventful, Kim sat in the back and smiled the whole way home. Savy was super excited to see her little bro, and Cash has slept and ate, and slept again. Thank you all for the kind words, we are so lucky to have so many thoughtful friends and family in our lives. So, as a thank you, here are some pics of our day!

Dr. Arnold and staff

Last nurse feed

 Rock and Roll Baby!

 What is taking so long? I'm getting bored!

 'Nuff said

 After an hour long car ride, this is what I chose to do.

This is why I'm hot...

So You're Sayin' There's A Chance...

Last week I hinted at the possible arrival of our son Cash, coming home to his family after a 5 and a half month fight. The opportunity was first mentioned last Wednesday, but over the last couple days it has become a reality. We are scheduled for discharge this Tuesday, April 10th, 2012.

God has truly worked miracles in all of us lately. He has managed to provide the strength Kimberley and I  have needed to survive the most stressful months we have ever experienced, and he has been preparing us for the trials ahead. He has given Savanah an unbelievable amount of good charm, willingness to follow her parents lead and a solid foundation to rely on him for answers none of us can explain. I thank him everyday for giving Kim and I the forseight to nurture and encourage her faith well before Cash's struggle.

Last but not least, Cash has been so strong; he is eating more than ever, healthier than we could have wished and such a good natured little soul. He is so peaceful, and we get comments about his demeanor often from the TCH staff. Rarely does he cry, and almost certainly it is for something specific, usually for just a few seconds. He smiles exactly when we need it, while holding our fingers with a grip tighter than I have ever felt. His little lungs are getting better every day, and finally the staff at TCH has recognized all of this, giving us the greatest news we could wish for. The chance to go home.

Kimberley and I have managed to make 2-3 feeds a day for the last week, upping his avg intake and getting us the sign off from his doctors that he is meeting his requirements. His o2 is almost at an 1/8th of a liter, nearly room air; allowing the doctors to feels comfortable he will flourish in his new environment, home.

Our race is not over, but we feel so blessed to have finally gotten to this point. What an amazing Easter this has been, one with a sense of promise and hope like we have never experienced before.

Pending a change in our schedule, I will update the blog with my sons coming home on Tuesday. We can hardly wait the remaining 48 hours, we are so excited and grateful.

Thanks again for all your prayers, and Happy Easter!

God Bless!

Visitation: Kimberley and I would like to ask our friends and family, as much as you all want to meet our new arrival, to allow some time to get adjusted, and him the opportunity to get stronger to resist any infection or bacteria that may hinder his continued recovery. We have been told to avoid exposing him to folks outside of the home for a minimum of 30 days, and no groups for 60. Please understand, and forgive us when we pass on your holiday events, parties and requests to visit. We will definitely let you know when we are all ready to show off our little man!

I keep singing in my head the following two songs...

Emmerson Drive

You're like a Sunday morning, pleasin' my eyes
You're a mid-summer's dream under a star-soaked sky
That peaceful, easy feelin' at the end of a long, long road
You're like comin' home
You're like comin' home
You're like comin' home

AND, one of my faves...

John Denver's Take Me Home Country Roads

I just replace West Virginia with West Texas and mountain momma with Texas Momma. Sounds better to me!

The Son Keeps Shining...

So I named my blog to reference the fact that my son would prevail in his fight for life. It is becoming increasingly apparant to me that our Lord had plans for Cash that we could never imagine, and the symbolism with which this title has at this time of year was no accident! I am in no way comparing Cash to the one and only; but I am expressing how during this week of observance, one that is so critical to all that I believe, my son has shown his strength while providing hope to us.

I cannot have known the timing for his upcoming arrival, and pending an unexpected setback, he will make this "coming home" quite possibly on Good Friday, maybe sooner.

Would I have preferred an earlier date to bring my little boy home, sure; but will I take this time and remember it for the rest of my life, certainly.

Happy Palm Sunday everyone, appreciate and remember what this week is about...
God's son, who gave his everything to offer you hope that your soul may live in peace for eternity, as long as you believe in him.

God Bless.

The Franek Family

Lemme Tell Ya A Story...

Let me tell you a story about a boy named Cash.
This little kiddo is so strong! His persistance and unwillingness to quit has been inspirational for me to witness. After all my whining, what I am going through is nothing compared to what he has endured.

My last post was all about how we were desperately needing some "fuel for the tank" to get us through this last stretch before he came home. I am so happy to report that our little man provided that and more over the last few days! Kimberley and I have been leaning on each other with help from Savy to keep it together, but Cash rose to the challenge again this week. He not only proved to us he is strong, but confirmed just how much of a miracle he is!

Since this past Wednesday, Cash has resumed his bottle feeds, and he did it in a big way. His 2-2.5oz feeds are being taken almost completely by bottle! Not just 4, 5 or 6 bottles a day, but 7 and even 8!!! That means he is nearly completely off the feeding tube! The nurse told us that even if he comes home with a feeding tube, that we can pull it out and work through getting him completely on bottles. This is a big relief, we were not looking forward to dealing with that at home.

This has been such a great thing for us to celebrate over these last few days, and it could not have come at a better time. I thank the nurses of Level 3 and Dr. Abramson for their excellent communication and willingness to follow Cash's lead.

Now, as great as all this is, there's more! Today, after leaving Port Lavaca and visiting my parents, we drove to TCH and visited with Cash. When we got there he was sleeping soundly so we spoke with the nurse. Here is as close as I can remember the conversation...

Us: How's Cash doing today?

Nurse: He's been great. He is such a little fighter, and what a chubby wubby he is! He took almost his entire bottle feed and I gave him the rest through his tube. He loves his boppy, and has been sleeping so well. He has been very steady with his saturation limits, and in fact he was hi-sat'ing to 100% so much that I decided to turn off his o2.

Me: What? You mean you turned off his o2? Completely? Ummm, when did you do that?

Nurse: Maybe 15 minutes ago. He has been keeping steady around 97-98%. Is that ok?

Us: Of course! We want to try and see what he can do! Wow! So he has no artificial oxygen, breathing completely on his own right now?

Nurse: Yes. He is doing great. I will keep a close I on him.

Kim and I looked at each other almost in shock. We decided not to mess with him, allowing him to focus on his breathing and have an undisturbed chance to show us how long he can go without additional help. As much as we wanted to hold him, and see his pretty baby blues look up at us, we let him be. We've learned this "do not disturb" method is necessary at times, especially in a hospital setting. Off we went.

Savy was clueless as to why we left, once in the hallway she asked, "Why are you two smiling so much?" After explaining to her how big of a step this is for Cash, no matter how long he lasts without help, she was ecstatic. We were in a great mood the whole drive home. What a great way to spend a beautiful day. Happy!!

In conclusion, I just got off the phone with his nurse and my little monster lasted about an hour without any additional o2, and probably would have gone longer but due to the feeds being such an important step she decided to turn the o2 back on to prevent him from getting tired. I'll take an hour! Next time, 2 and so on.

We are literally dealing with baby steps here, but we are so excited with each one!

Enjoy your weekend and tomorrow when you are praying for your friends and family, put Cash in the "Thank You" category. I think the Lord deserves credit for this miracle he has given us. Amen.

 

Hurt....watch it if you haven't.

The first of the song here is the video release.

The second part has the words. Both are extremely powerful.

and now for the words...

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything

[Chorus:]
What have I become
My sweetest friend
Everyone I know goes away
In the end
And you could have it all
My empire of dirt
I will let you down
I will make you hurt

I wear this crown of thorns
Upon my liar's chair
Full of broken thoughts
I cannot repair
Beneath the stains of time
The feelings disappear
You are someone else
I am still right here

[Chorus:]
What have I become
My sweetest friend
Everyone I know goes away
In the end
And you could have it all
My empire of dirt
I will let you down
I will make you hurt

If I could start again
A million miles away
I would keep myself
I would find a way

GBJC

The RSV Incident

So after it was determined that Cash has RSV, back to Level 3, on the CPAP and 100% feeding tube meals ensued. This was not only difficult to see and hear, it was also a sure sign that any chance of coming home without a feeding tube and o2 was basically impossible.

This setback has really gotten us upset. I just don't know how we have been able to "keep it on the rails" this last week. Once again the proverbial rug had been pulled out from under us, without notice, just days before we were to be home. Savy plays a big part in keeping us sane and preventing a complete meltdown. Her smiles, laughter and funny antecdotes definitely help keep our spirits up. We thank her and the big man upstairs every day for this. More than once she has unknowingly pulled me out of a slump.

Kimberley and I are both as fragile as fine china. Everything and anything can set us off. Our nerves are shot, fuses short and bubbles ready to burst. It really sucks. The good thing is we both recognize this, and we offer more comfort, hugs and talks than ever before. This has truly been a test, no doubt one that will make us stronger. An example of my short fuse: Last week we headed to Cy-Fest down the road from us to hang with friends and see Kevin Fowler. After seeing a line of cars to park, and being told that we would have to walk a fair distance from a parking lot about a mile away, I just said, "Sorry babe. Im outta here". Took me about 5 seconds to say, screw it. Not worth getting my blood pressure up anymore than it was. I also barked at the after school care lady for not having the normal gate open when I picked Savy up, and the nurses and docs at TCH don't stand a chance. I'm sure I am quickly earning a reputation up there. All of these complaints are probably justified, but I would normally handle them better. My apologies to anyone in the path of Hurricane Franek.

Bottom line, I'm at my tipping point. If I don't get some positive news very soon, I'm going to lose it.
This leads me to today. Cash is 8 days into this RSV setback, and finally doing good enough for the doctor (who I like btw) to try and get him off CPAP and back on the nasal cannula. This is a tall order considering Cash is still on level 8 with 38% o2 with the CPAP. As you may recall, we want 20% o2.
At any rate, we need your prayers, again. We need it for his health, AND for us to get something positive. Good news refills our tank so we can continue down this very long road.

Thanks and God bless.

Sorry for being short, negative and all around an ass.

Here are a couple pics of our most recent Cash delivery.

Much Ado About Nothing...

Well, all the hoopla about getting Cash home this week has come to a bittersweet halt.
First, the bad news. We were hoping to have Cash home by Wed or so, and thats now been put off til at least next Monday; mainly due to a continued anti-biotic treatment for the infection at his shunt site on his head. Not to be confused with the still negative spinal fluid concern from last week. So, we are looking at at least another week til our little boy can come home.

BUT, as the eternal optimist I have good news to report as well! First off, there is still no sign of any deficiency in Cash per the docs. We are blessed for sure. No doubt that all your prayers have been heard!

Also, over the next week, due to the "feeding prowess" of our little Cashew, the docs are going to try and get him off his feeding tube before he comes home!!!! This would be a huge relief for us. He is at feed 6 now and needs to get to 8 to make that happen. This is looking like a decent possibility at this point. Fingers, toes and arms crossed while on bended knee. Additionally, although less likely, they will be doing another o2 test late this week to attempt getting him off the nasal cannula!

The setback on time could be a blessing in the long run, as tough as it is on us. We will prevail, and so will Cash, no matter what damn tube he has shooting from his little 9.5lbs body!

I wanted to add some new pics as well. The first is Cashmonster, the second is of Kimberley and my awesome cousin Michelle who played the role of "girlfriend" today at the hospital. Kinda funny. Her words, not mine. Michelle-You are as much a sister to us as a cousin. You are such great family and more importantly, a friend. We love you very much! Last is of one of the tanks delivered to our house today. Its the large one. LOL.

Hug your kids!

Love,

The Franeks