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

Tuesday's Gone...

So we all slept well Monday night with great expectations of a full recovery for Cash. Kim headed back to work, only to call me with horrible news. All hope for an uneventful day is gone. Kim was told that the cultures for Cash' spinal fluid came back positive for infection. He would now have to go back to the ER to have not one or two additional surgeries, but three!

Needless to say we are devestated. A crushing blow for sure. How would he be able to pull through all of this without additional brain damage, or worse? Kim and I head directly to the hospital without saying a word the whole way. This was going to be a long day.

How did it come to this? Just a few days before we were prepping for Cash to come home. The rollercoaster continues. I wonder how much more we can take of these emotional let downs.

Upon arriving we see the nurse practitioner and the doctor at bedside. They explain that they are prepping Cash for surgery per the positive cultures. Kim holds Cash for a bit while we wait for Neuro to come by. I step outside and text as many of our family and friends as possible to pray for our son; soon after, Pastor Bob arrives. Tears are abundant. I request someone without an accent from Neuro to speak with about all this, referably the surgeon. The doctor is apologetic about our situation.

3 hours go by and the Neurosurgeon arrives with a happy go lucky attitiude. I'm livid. I ask the surgeon to explain whats going on. He is a bit taken back by my attitude and proceeds to tell me all is well. Just before my head explodes, the attending doctor tells the surgeon that Cash is prepped for surgery. He looks perplexed and asks why. She tells him what the results of the culture are and he basically says "No". We are all confused.

Someone had incorrectly input the info from the cultures!!! There is no infection with regards to the spinal fluid. The surgery was a success and the shunt is working perfectly. The culture that came back positive was the one from the incision on his head. The infection is minor and external.

WTF!!??!!  Seriously! All of this the past 4 hours is caused by a clerical error? Unbelievable. The doctors have words, but in the end the surgeon assures us there is no major concern, and no surgery in our future pending a positive culture in spinal fluid over the next 72 hours. We can breathe, and relax.
The docotors all apologize for the "miscommunication". I reply with, "Miscommunication? Seriously? That is not what I call it!" I'm out of energy, so whats the point in continuing this. My boy is ok, and my wife is able to relax.

I think Pastor Bob was at a loss for words. He has another person to visit in MD Anderson and we tell him thanks for visiting. Our tears are dry, but a little on edge as we have 3 more days with our fingers crossed for a continued negative result on the culture. Meanwhile anti-biotics are started for a 10 day period to kill any external infection.

We dodged a bullet! Though not the way we wanted to get there, we finally got some sort of resolution that Cash would be ok. Meanwhile we are searching for the results to both the audio and visual tests conducted at the end of the previous week. Finally we get the results, and after all the worry, both come back good. 100% normal! Cash can hear and see just fine, AND his brain is reading the signals properly. Its a miracle by all accounts, considering the amount of atrophy in the area of the brain that is responsible for that stuff. Once again the big man upstairs has provided for us.

Over the next 3 days the good news continued, without clerical error. Feeds are getting better and his o2 levels are improving by the day. The countdown to get my son home continues!

Now, you would think with all our visits, phone in check-ups and pleads for constant communication we would be up to speed on all things Cash related. Nope. Check this out. Yesterday we are finally getting Cash' room in order, its a happy day. I've attached some pics below. At any rate we get a phone call around 4pm to schedule delivery of 02 to the house and a time to learn how to work the air at bedside on Monday. Kimberley ask why we are scheduling this, as we haven't been given a date to plan on bringing Cash home. The lady on the other end says, and I quote, "We have discharge papers for early next week, ma'am.". Obviously we are floored. How does she have this and we haven't been told a thing?

As I type this, Kimberley is holding our precious little miracle, and just spoke to the nurse about a possible discharge on Wednesday. I'm not holding my breath, but to be close is a blessing for sure. By this time next week, barring a setback, I'll be typing an update on Cash while he sleeps in front of me.

Tuesday is gone for sure.
Let the good times roll!

 

The last few days...

The last few days have been taxing to say the least. Here is a recap.

Saturday and Sunday were great. Savy was in Austin with her Papaw for Spring Break, giving Kimberley and I some much needed alone time and ample opportunity to visit with Cash. We spent about 4-5 hours with him each day, finished getting the last of the baby stuff and enjoyed a great dinner of Crawfish!
Sunday we slept in, and after visiting Cash, came home and relaxed. Good times!

Monday started like any other. Not 3 minutes after Kim walks out the door for work, she calls me to tell me the nurse told her Cash had developed an issue at the entry point of his shunt to his brain. There was always a bit of a bump, but now it had turned red and swelled up causing the surgeon to get him on the docket for surgery to make a minor adjustment smoothing the shunt out on the head and resewing him to provide more skin over it. I rush to the hospital. It's now about 9:30 and I'm waiting for a 2pm surgery. Kim should be here by 1. The seconds go by slowly as I watch the nurses prep Cash for his second surgery in 35 days. I am assured by the Fellow that this is minor and quick. There will be no change to the entry point or movement of the shunt and will not take more than 30-45 minutes. The worst part is he will have to be intubated again, which is a risk to get back to the nasal cannula he is on, and as always there are the risks of anesthesia. This has been done before, but the fear is still there.

My cousin Merry hears that I'm at the hospital and takes time from a friend whose son was just admitted to come see us. After her visit we have lunch with her friend, and I explain our issue, listen to hers and prep her for a sometimes bumpy road here at TCH. Poor thing is scared out of her wits, but has a good face about it. Its strange how the wheel of bad luck is spun and lands on good folks. 12pm arrives and so does Kim.
Cash looks great. No fever, awake but hungry, no food til 3 hours after surgery.

2pm finally arrives, but they still arent ready for him. 2:35, the Surgeon and the Resident arrive. They review the procedure, which sounds a bit more serious than we had expected after the Surgeon tells me he is concerned for infection and that the red spot has gotten worse over the last few hours. I begin to get pissed. If an infection is even possible, and it can get that much worse so quickly, why are we not getting him to surgery sooner? Even on time? After all, even their own time has passed. It's 3pm now, and I have an African transplant trying to explain the disclaimers etc to me but I cannot understand one damn word. I'm steaming. The doctors sense my anger. Kim takes over the discussions and I step aside. I see nothing but red. So as they poke and prod at him, I finally say; "If this is so urgent and time is of the essence, after all we are discussing an infection on my sons brain, why are you just standing here ? Get him to surgery now! Apparently hours and minutes count and we are already over an hour behind!" I ask about the length of the surgery, am told 90min to 2 hours. What? I was told earlier 30-45 minutes!! Livid is an understatement. I pop an aspirin to thin my blood, go find a seat and wait. Pastor Bob arrived at some point, not sure when, but glad he did. He sits with us and gives me the chance to vent a bit to someone other than Kim.

2 hours go by, now nearly 6 hours into my hospital visit, and the Surgeon stops by to tell us he is doing well. The immediate culture shows no infection and he is hopeful all will be fine. We sigh in relief and he says, "Don't celebrate and pop the champagne yet." and leaves. Kims sister is here now as well. Cash is in recovery, needs to get back off the ventillator and wake up from anesthesia. They say it could be another couple hours til we can see him. Pastor Bob says a prayer with us and leaves. I turn to Kim and say, "Celebrate? I need to get drunk! Pop it." I jest of course.

45 more minutes goes by and I'm toast. Kim stays and I'm headed home. "I will see Cash tomorrow, but send me pics!" She does and I've attached it as the first pic below. The second pic is of the stitches. He looks great! My boy is a stud! What a strong little boy he is. Like his mother, he's a rock.  Kim holds him for an hour plus and comes home around 9:30. Long day.

Well my boy dodged a bullet, finally he catches a much needed break without infection. We both sleep well. Can't wait to see him tomorrow!

to be continued...

Not Just Yet...

Well, today we were told that our hopes of having Cash home this week would not happen after all. This was really tough on Kimberley, as her hopes were as high as ever to finally get her little boy home. We both realize that whatever is best for Cash is what needs to happen, but this roller coaster ride must come to an end, and soon.

We have tried so hard to remain at peace, be accepting and allow for all of this to be absorbed one day at a time. Days like today make it tough. Sometimes we feel the doctors can be cold in their delivery, even short. Other times we wonder which doctor is doing the right thing. Why have the three previous doctors not mentioned anything this doctor is saying? Why would one attending physician give us a 10 day window to come home, and the next doctor only three days later say we would be lucky to leave in 30 days? I think anyone who has gone through a medical situation of this magnitude can identify with us, when we ask these questions. It is nothing short of heart breaking.

My encouragement and attempts to calm Kim are wearing thin. I know she tries, and with my help, takes a deep breath, but I know the number of times for this left to happen are numbered.  We need him home so badly, especially Kimberley.

Cash is a miracle. He has beaten the odds so far. I believe his road, no matter how long will be a beautiful one. With prayer, his family, friends and lots of hard work, Cash will be all that he is supposed to be. Today just felt like that road won't begin as soon as we had hoped.

So here is what happened. We understood that there was a test he needed to take to determine his O2 needs. They are not sure if he will need oxygen to come home and this was to determine that. Otherwise, we needed him to reach 8 full bottle feeds a day, then he could come home. He had been taking five feeds a day for a few days, and had started his sixth. We figured in a week he would be at 8. Also the training we needed and a car seat test. We have completed the training.

Today, Kim gets a call at work letting her know that the following tests needed to be done prior to him going home to diagnose as much of his deficiencies as possible. By the way, this doctor is new for this month, and in 5 days of us waiting to meet her, she has not come around when we were there. So this unknown doctor who has only known Cash for 5 days tells her the following...

*Vision test. Determine whether his eyes, which are "good", are being "read" by his brain.
*Hearing test. Same as above. The ears are good, but is his brain reading the signals.
*Kidney test. Due to the diauretics, has there been damage, specifically calcium build up.
*Change diauretic to weaker option, and determine if it is adequate for him.
OSRG-are something, not exactly sure; this is the respiratory test mentioned earlier to determine o2 need.
*Blood gas test. Get a recent reading of his CO2 levels.
*Ultrasound on brain, due every 30 days.
*PMR doctor visit and diagnosis. This is basically a PT Medicine angle, including medical device needs. Splints were mentioned.
*Aspiration testing. Need to determine if it happening and to what degree.

So this is all dropped on Kimberley in a 30 minute call from a strange new doctor. Needless to say this wasn't taken well. It broke her.

I called the doctor after Kim arrived home, as she couldn't stay at work and be productive. My conversation went pretty well. I got the answers I needed, although not real happy about the timing let down. I am meeting the doc tomorrow morning. All the tests are on the "checklist" to go home, but they will be providing details to Cash's situation. This scares us. It is necessary to understand these things and prepare for them being as informed as possible, but certainly doesnt make this week any easier.

As a husband, the last thing you want to see is your wife crying and there be nothing you can do to "fix" it. Helplessness is an understatement. So you do what you can, say what you must to calm her down and pray your hug will ease her pain. Meanwhile you want to cry, but you can't. The last thing you can be is another weight added to her already heavy shoulders. Your tears would just cause the situation to spiral. We've had enough of those days and nights.

So I'm left writing this at 11pm, by myself. Its okay I guess; after all, it works. Cathartic is the word.
Blabbing about our drama helps me to cope.

Please keep the prayers coming. This could be a very hard week for us. Although, it could be a relief!
Fingers crossed, knees bent since 11/3/11.



 

Good Morning...

Good morning...my beautiful little boy. I hope you slept well last night, with sweet dreams of coming home. I know we did. Your momma, sister and daddy are so excited to introduce you to your real home.

I'm sure you know this already, but today was to be your real birthday! I know you were too excited, and decided to come early to meet all of us, but I just wanted to let you know.

Your stength amazes all of us. For such a small baby, you have a big heart; your perfect little hands are strong, perfect to hold my fingers with. I love when you squeeze them. I also love when you smile, especially right after you hear my voice. You are perfect in every way!

Today starts a new chapter for all of us and its fitting that it begins on your original birthdate. From here on we will focus on getting you into a routine at home and making sure you have every opportunity to grow into the great little boy you have already begun to be. We will count your progress from today, knowing you had a tough start. For now on, you can count on us, not nurses, to care, hold and comfort you. We will never leave you alone.

You have a great family, and already have many friends who will support you through the years. In fact, one of them is on his way today! His name is Gage Cooper, and he will join you at the NICU for a short visit after he makes his grand entrance at 12:30 today. He is the son of our dear friends Todd and Shelly Cooper, who have visited you while you were in Level 3. He should be a great buddy to fish with in the future.

We love you Cash Wyatt, and will never stop working to make sure you have the best in life. We could never repay the joy you have and will bring us, so never worry about any disappointments. Never give up working hard to meet your potential. Always trust your faith and family to guide you. Always believe you can and will be the best at whatever you do. Nothing comes easy, stay strong and determined to meet your goals and know that you have an army standing next to you.

Keep fighting the good fight little man.

We love you and happy birthday!

Love,

Mommy Daddy and Sis