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

The Latest...

Cash: 7lbs 3oz! Taking 5 bottles a day now, though not always finishing them. Usually hits the 35cc mark, shooting for 50+. The remaining feeds are still via tube. He is growing out of his onesies, and will be fully into 0-3 months and out of preemie stuff in days. o2 levels are stable, and the his desats are becoming less and less. Now has a little swing next to his bed, which he gets to enjoy once a day for a bit. Trying to get him ready for the car seat test. Told we may need to go home with 02, but not for sure yet. He sleeps a lot! The feeds tire him out. He is a calm baby, despite all he has been through, and is a pleasure for the nurses and us to care for. His eyes are getting better, and now only tested every two weeks! ETA to home, 10 days and counting!

Momma: She is tired. Frustrated at times, but always tired. I don't blame her, the schedule to provide Cash as much parental care as possible is a daunting task. She has gotten better over the last few days, and is getting excited to finally bring her boy home. The nursery is coming together nicely, and the shower should round out any important stuff left to include. How Kim has managed all of this and staying on top of her work I will never no. Divine intervention for sure.

Savy: Can you say on Cloud 9? She got to hold Cash for the first time Saturday, and cannot stop asking when she will again. She is also being a big help around the house keeping clothes up and now even clearing the table after dinner. She is also our "go to" praying person at dinner time. They always bring a smile to our face. Thank God for our first little miracle; she is such a joy.

Me: Busy, but good. We are all putting serious miles on the highway these days, but I've nearly doubled my miles in only 4 months!!! The gas bills are atrocious, but worth it. We were given a parking chip for $115 free parking, which I am using up quickly. I'm looking forward to Gunpowder and Wings during the shower this weekend!

Thats about it for the quick update, and am glad you are still here!
God Bless Yall!

Matthew

Picture Time Again...

This time we have included Cash AND some of the great gifts we have received!
Not everything we have gotten is on here, but I've had some folks wanting to see "baby stuff", so here it is.

Thanks again to all those who have sent gifts; they brighten our day, save us dinero and help make our little booger that much more comfy!

To: Team Cash, Team Cash VA, The 11/3/11 Crew, Kappa Sigma, Music Row, The Port Lavaca Posse, RCS and RUMC

Greetings Everyone!

Today was a big milestone in little Cash's life, he moved to Level 2. Momma and I are a bit anxious with the 1:4 nurse to kid ratio, and less phone access, but all in all it was another great day! We have so much to be thankful for, and many of those is all of you!

I wanted to send each of you our biggest thanks for your support, prayers, likes, comments, gifts and love you have sent our way. There is no doubt that without these we would have cracked. Instead we bent but did not break. Our biggest family challenge to date, was made easier by knowing how many of you were thinking of us. From family and close friends, to business associates, distant family friends, old friends and even those we don't know; all of you have played a part on our life stage.

Kim doesn't say much on here, but I can assure you she feels the same. I cannot tell you how many times she asked how such caring and thoughtful words can come from someone she doesn't even know. We are humbled at the outpouring of support.

As much as you have all done, I leave you tonight with a request. As big of a challenge as the last few months have been, our future is still in question. We hope and pray everyday that little Cash comes home ready to take on any hurdle facing him, but we still need your support. I promise to continue updating, and the whole family promises to cherish every single click, letter and prayer you send our way as much as we have in the past.

I know life is fast, and volunteer time can be hard to come by, but I promise you if you want to experience a life changing event, visit Texas Childrens Hospital. If you ever want to teach your children gratitude, take them up to see just how lucky they are. Any floor, dept or age will sufficed to say impact you in so many ways. If you need more info, I will gladly send it your way.

One final note. Kim and I will be creating a non-profit 501C3 in honor of Cash's struggles, and for those parents who are going through the same thing we have. Focusing on micro-premies and their family's tough road, we will be providing a "Survival Guide/Micro-Premies For Dummies" kit/bag, including all the ins and outs to make their life easier, explaining terms, what to expect and a copy of my Prayers For Cash Blog. I will let you all know when that goes live.

God bless you all for everything you have done and will do, it has truly affected us in so many positive ways.

Love,

The Franek Family

Savy Talks To Cash

Now for the video.