Most of you have followed our story from day one, and many know the tests that have been put in front of us over the last 11 months. We never know exactly how or when these little tests pop up, but they do and we learn to cope. Adapt. Like Darwin said, the survivors are not necessarily the strongest, but those who willfully adapt.
Over the last two months our medical supply company changed, and we've not been happy about it. New company means retraining, reordering, new delivery times etc etc. The most important of these are the pulse oximeter probes that we wrap around Cash's feet, which plug into the monitor. They keep track of his pulse and oxygen levels.
After a hiccup in delivery, we only received 2 probes which is nearly impossible to stretch out over a month's worth of use. So we adapted. Last night Cash slept without being monitored for the first time in his life. A pacifier for us, to lose this monitoring was nerve busting to say the least. He survived.
The point of this blog is not to mull the details of probes, but to emphasize the point that as a family we have learned to morph and adapt, adjust and change into the new normal. I think we are doing very well.
Savy has been a big concern for us, for obvious reasons. She has the occasional break down at school and home, but for the most part she has been great. Yesterday we met with her new teachers and they gave us a huge compliment. Not only is Savy doing well in school with regards to grades, but they also made note that she avoids drama(Probably already has enough). They continued, saying she is very empathetic, caring for other kids and always lending a hand. What a great thing to hear!! We were so proud.
So we are just trucking along, doing the routine and adjusting into our La Vida Loca. As I type this Cash is having his 4th therapy session this week. He continues to amaze me. What a strong will and headstrong determination he has. I love him so much.
Thank you God for all your blessings. Amen
Friday, September 28, 2012
Wednesday, September 19, 2012
My Wife/His Mother
The list of reasons why we all love our wives and mothers is sure to be the longest. It is for all these reasons that authors, songwriters, poets and speakers have given so much thought and paper to the subject. To try and make a list for Kimberley would be futile; nothing more than a re-hash of what has already been said.
The simple fact that only a woman may carry our most precious gifts in life is testament enough to the respect they deserve, have earned and should be given. The list of women who have made the history books or are revered in the scripture are plenty. Many times they give us a perspective in life that could only be defined through the eyes and thoughts of an experienced, responsible woman.
My wife is no different. On the outside she is tougher than she needs to be. An armour encases her that is nearly impenetrable. I've been lucky enough to get past it, ashave her children. Few people will ever have that pleasure, nor the ability to do so.
Todays post is about her "inside". That glitter glue that holds her together. At her core, Kimberley is a traditional mother. Her work is important, but she prides herself most on her children. She is firm but fair, kind and reasonable, but has high standards. She smiles the most when around her kids. She has high hopes, big dreams and many goals for anyone in her life, but her children will always have a high bar to clear.
These traits are all what I admire most about her. In an age of mediocrity, low standards, gray areas and exceptions, Kimberley says no. She wants the best. It is why we fight to keep Savy in private school, push her to want more and have provided the best in care and therapy for Cash. If we had to sell everything to give either of them anything for their education or health, it would be done without thinking twice.
All of this comes with a price however, and I'm not talking about money this time. To raise your children with this mantra takes effort, time and resilience to stay the course. We are problem solvers, never blaming another and always taking full responsibility. Our methods and measuring stick must change for Cash. Kimberley is having a hard time of it.
With Savy, its easy: She comes home with an 88 on a spelling test and you ask her if she did her best. The next week we study a few minutes more and poof its a 100. Problem solved.
Health issues are different, specifically disabilities. If you get sick, you do what you can to get well. Most disease can be fought, sometimes at much cost. Vaccines prevent, eating right drops the pounds and an antibiotic kills the bug. Disabilities, at least CP, cannot be "fixed". For a problem solving mother who believes trying harder and doing your best will get you your reward, this is baffling.
Savy is becoming more aware of the differences between Cash and other children his age, now 10.5 months. It has been hard for us to explain this to her and having her understand that this is not a punishment of sins, rather a blessing we cannot explain, yet. These conversations are taxing for Kimberley and I, taking our already emotionally charged minds to another stratosphere. Anyone who has dealt with a long term illness or disability can attest that there are times you are completely consumed by the thoughts of why, how etc. These emotional rollercoasters, I assume, will level off in time as the "new normal" places itself firmly in our everyday lives. I pray. On the other hand, on good days, you don't stop thinking about it, but you cope and manage your way through it. Think about the first time your child drove a car without you, or went on a date. You know how you are thinking about them the whole time they are away, that little worry or concern you cannot let go of until they walk back through the door; this is our good day.
We are hypersensitive to all of Cash's needs. If Savy has a bump or bruise, we look, apply the band-aid and tell her to get over it. Cash is another matter. I'll give you an example. CP kids work so hard to move, and the effort to make a movement takes more energy and time than most. There are times Cash will be in a completely relaxed state, recharging his batteries if you will, while just staring at you. This happened last night while Kim took Cash for a walk. She came back within 5 minutes upset and beside herself. Crying, she explained that he seemed distant and blank. Her time is valuable with Cash and that he wasn't having an "interactive" time with her, hurt her feelings. She asked if there was something wrong with him. Is the shunt blocked? Had the surgery gone wrong? Will he not be able to communicate with us? Questions that are hard to ask, much less answer. I explained that he has these moments and why. She should not worry, but my words can only ease the concern, not make it go away.
We have a lot in front of us, and the how's, why's and worry will continue, possibly forever.
We can learn to cope and measure Cash by another stick, and he will make progress,as he already has. We will communicate, no telling exactly how just yet. Maybe he will be a writer, or maybe he will just smile a lot, but one thing is for sure; no one will ever understand our son like we will.
Kimberley is having a rough time, it is to be expected; she will adapt. Her standards will remain high, but how she grades the report will have to change. We must not jump to conclusions, no matter how much we need answers. Savy must remain a priority and not allow her to get lost in our shortcomings and stress, all the while including her in our journey to understanding.
Meanwhile, Cash will rest, grow and become stronger; laughing and smiling when he deems fit.
Kimberley,
I want you to always know you are not on your own. I will always be here for you, as will Savy.
Find your peace in knowing you have been chosen to care for a miracle. When I get down, I look at him and think of 11/4/11; he has come so far, so have we. Much too far to give credit only to health providors and our efforts. God is working in him and us. We must let him continue to do so. I would not want anyone else to walk this path with me. Remember the picture I made for you? Its a mountain in front of us, but we get to the top by climbing the hills.
I love you,
Matthew
Here are some verses I find helpful:
Matthew 5:5 Blessed are the meek, for they shall inherit the earth.
Phillipians 4:13 I can do all things through Christ which strengtheneth me
1 Peter 4:1 Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin...
The simple fact that only a woman may carry our most precious gifts in life is testament enough to the respect they deserve, have earned and should be given. The list of women who have made the history books or are revered in the scripture are plenty. Many times they give us a perspective in life that could only be defined through the eyes and thoughts of an experienced, responsible woman.
My wife is no different. On the outside she is tougher than she needs to be. An armour encases her that is nearly impenetrable. I've been lucky enough to get past it, ashave her children. Few people will ever have that pleasure, nor the ability to do so.
Todays post is about her "inside". That glitter glue that holds her together. At her core, Kimberley is a traditional mother. Her work is important, but she prides herself most on her children. She is firm but fair, kind and reasonable, but has high standards. She smiles the most when around her kids. She has high hopes, big dreams and many goals for anyone in her life, but her children will always have a high bar to clear.
These traits are all what I admire most about her. In an age of mediocrity, low standards, gray areas and exceptions, Kimberley says no. She wants the best. It is why we fight to keep Savy in private school, push her to want more and have provided the best in care and therapy for Cash. If we had to sell everything to give either of them anything for their education or health, it would be done without thinking twice.
All of this comes with a price however, and I'm not talking about money this time. To raise your children with this mantra takes effort, time and resilience to stay the course. We are problem solvers, never blaming another and always taking full responsibility. Our methods and measuring stick must change for Cash. Kimberley is having a hard time of it.
With Savy, its easy: She comes home with an 88 on a spelling test and you ask her if she did her best. The next week we study a few minutes more and poof its a 100. Problem solved.
Health issues are different, specifically disabilities. If you get sick, you do what you can to get well. Most disease can be fought, sometimes at much cost. Vaccines prevent, eating right drops the pounds and an antibiotic kills the bug. Disabilities, at least CP, cannot be "fixed". For a problem solving mother who believes trying harder and doing your best will get you your reward, this is baffling.
Savy is becoming more aware of the differences between Cash and other children his age, now 10.5 months. It has been hard for us to explain this to her and having her understand that this is not a punishment of sins, rather a blessing we cannot explain, yet. These conversations are taxing for Kimberley and I, taking our already emotionally charged minds to another stratosphere. Anyone who has dealt with a long term illness or disability can attest that there are times you are completely consumed by the thoughts of why, how etc. These emotional rollercoasters, I assume, will level off in time as the "new normal" places itself firmly in our everyday lives. I pray. On the other hand, on good days, you don't stop thinking about it, but you cope and manage your way through it. Think about the first time your child drove a car without you, or went on a date. You know how you are thinking about them the whole time they are away, that little worry or concern you cannot let go of until they walk back through the door; this is our good day.
We are hypersensitive to all of Cash's needs. If Savy has a bump or bruise, we look, apply the band-aid and tell her to get over it. Cash is another matter. I'll give you an example. CP kids work so hard to move, and the effort to make a movement takes more energy and time than most. There are times Cash will be in a completely relaxed state, recharging his batteries if you will, while just staring at you. This happened last night while Kim took Cash for a walk. She came back within 5 minutes upset and beside herself. Crying, she explained that he seemed distant and blank. Her time is valuable with Cash and that he wasn't having an "interactive" time with her, hurt her feelings. She asked if there was something wrong with him. Is the shunt blocked? Had the surgery gone wrong? Will he not be able to communicate with us? Questions that are hard to ask, much less answer. I explained that he has these moments and why. She should not worry, but my words can only ease the concern, not make it go away.
We have a lot in front of us, and the how's, why's and worry will continue, possibly forever.
We can learn to cope and measure Cash by another stick, and he will make progress,as he already has. We will communicate, no telling exactly how just yet. Maybe he will be a writer, or maybe he will just smile a lot, but one thing is for sure; no one will ever understand our son like we will.
Kimberley is having a rough time, it is to be expected; she will adapt. Her standards will remain high, but how she grades the report will have to change. We must not jump to conclusions, no matter how much we need answers. Savy must remain a priority and not allow her to get lost in our shortcomings and stress, all the while including her in our journey to understanding.
Meanwhile, Cash will rest, grow and become stronger; laughing and smiling when he deems fit.
Kimberley,
I want you to always know you are not on your own. I will always be here for you, as will Savy.
Find your peace in knowing you have been chosen to care for a miracle. When I get down, I look at him and think of 11/4/11; he has come so far, so have we. Much too far to give credit only to health providors and our efforts. God is working in him and us. We must let him continue to do so. I would not want anyone else to walk this path with me. Remember the picture I made for you? Its a mountain in front of us, but we get to the top by climbing the hills.
I love you,
Matthew
Here are some verses I find helpful:
Matthew 5:5 Blessed are the meek, for they shall inherit the earth.
Phillipians 4:13 I can do all things through Christ which strengtheneth me
1 Peter 4:1 Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin...
Thursday, September 13, 2012
Surgery...again
Not as big of a deal, but still a surgery.
Cash has had a hernia since birth that needs to be corrected. It has also prevented one testicle from dropping. Then theres the old circumcision, put on hold til now. These three minor procedures will begin at 8:15am Friday Sept 14, 2012.
The only part we are really worried about is that he will be put under, and will be assisted with O2.
This may cause him to need O2 assistance for a day or two after. We are just nervous about taking steps backwards in this department. He is still a little shaky in his O2 levels.
The surgery is scheduled overnight, but they will release him if doing well, the same day.
Bubba aint gonna be a happy camper the next few days, thats for sure. Thankfully we have our outstanding nurse coming Saturday to help us the first day with cleaning incisions and keeping Cash comfortable.
So, it looks like this weekend will be football overload while we care for our little boy. Here's to hoping we don't have any complications or additional surgeries for at least a year. Thanks for your prayers in advance!
Cashtons Daddy
Cash has had a hernia since birth that needs to be corrected. It has also prevented one testicle from dropping. Then theres the old circumcision, put on hold til now. These three minor procedures will begin at 8:15am Friday Sept 14, 2012.
The only part we are really worried about is that he will be put under, and will be assisted with O2.
This may cause him to need O2 assistance for a day or two after. We are just nervous about taking steps backwards in this department. He is still a little shaky in his O2 levels.
The surgery is scheduled overnight, but they will release him if doing well, the same day.
Bubba aint gonna be a happy camper the next few days, thats for sure. Thankfully we have our outstanding nurse coming Saturday to help us the first day with cleaning incisions and keeping Cash comfortable.
So, it looks like this weekend will be football overload while we care for our little boy. Here's to hoping we don't have any complications or additional surgeries for at least a year. Thanks for your prayers in advance!
Cashtons Daddy
Wednesday, September 5, 2012
My Biggest Fear...
I was asked recently what my biggest fear for Cash is.
Aside from losing him, here was my response and explanation.
My biggest fear for Cash is that he will never get to experience love. The kind you have with your spouse/significant other. Therapy, Special Education, wheelchairs, even surgery do not scare me as much as the possibility Cash never finds love, the romantic kind. A broken heart is better than to never have been loved at all, right?
As a parent, we wish all these things for our kids, many of which I've found to be more for me than him. To see him suit up for a game, or get stuck in the mud at the bay; run across a field chasing after a dove or play hide and seek with his best friend. These are what little kids do, and I want that for him. That being said, there are lots of kids who have never done some of those things, I'm sure there are many who haven't done a one thing mentioned and they live happy fulfilling lives, but what if they never experienced falling in love? I couldn't imagine.
When I was younger, I always had a girl on my mind; he doesn't necessarily need the "always", but it would be tough to see him "never" have that thought or feeling. Worse yet, he has those feelings but they are not returned. Will he remain constantly heart broken and never "good enough" to be considered a worthy partner in life? Will a young lady ever look at my son and see a man, and not just one to be cared for, but as a lover, partner and potential father; all that goes with a life with someone you love.
We just assume this will happen at some point for our kids right? I mean, when was the last time you looked at your child and thought, "I really am concerned that someone may never love you." It's heartbreaking, no?
We always look at them and think, "I hope you live up to your potential and get straight A's," or "You look just like your mother, and you have her quick wit." Meanwhile they are jabbering about their day or what just happened on TV, but you are thinking all these thoughts about how perfect they are, or depending on the day, how much they frustrate you because they cannot seem to turn the damn lights off in any room at any time ever!!!
Regardless, we all think these random thoughts, but never in the last 8 yrs of Savy's life have I looked at her and thought, "Will someone be able to fall in love with her? Will she experience the beauty of a loving relationship? A family? A true love?" In fact its just the opposite for me when I watch Savy talk. I'm thinking, "This girl is gonna have to beat the guys off with a stick! She is awesome!" You see, I think the same things about Cash, cuz he is awesome too. He's adorable, and I'm sure he will dazzle the ladies with his sky blue eyes, but after they get past those windows to his soul will they think, "What a cute guy, I'll always be here as his friend to help him." or will they think, "I can love this man."
I know it seems like I am rambling a bit, and to be honest I am, but its my fear. I was asked.
Aside from losing him, here was my response and explanation.
My biggest fear for Cash is that he will never get to experience love. The kind you have with your spouse/significant other. Therapy, Special Education, wheelchairs, even surgery do not scare me as much as the possibility Cash never finds love, the romantic kind. A broken heart is better than to never have been loved at all, right?
As a parent, we wish all these things for our kids, many of which I've found to be more for me than him. To see him suit up for a game, or get stuck in the mud at the bay; run across a field chasing after a dove or play hide and seek with his best friend. These are what little kids do, and I want that for him. That being said, there are lots of kids who have never done some of those things, I'm sure there are many who haven't done a one thing mentioned and they live happy fulfilling lives, but what if they never experienced falling in love? I couldn't imagine.
When I was younger, I always had a girl on my mind; he doesn't necessarily need the "always", but it would be tough to see him "never" have that thought or feeling. Worse yet, he has those feelings but they are not returned. Will he remain constantly heart broken and never "good enough" to be considered a worthy partner in life? Will a young lady ever look at my son and see a man, and not just one to be cared for, but as a lover, partner and potential father; all that goes with a life with someone you love.
We just assume this will happen at some point for our kids right? I mean, when was the last time you looked at your child and thought, "I really am concerned that someone may never love you." It's heartbreaking, no?
We always look at them and think, "I hope you live up to your potential and get straight A's," or "You look just like your mother, and you have her quick wit." Meanwhile they are jabbering about their day or what just happened on TV, but you are thinking all these thoughts about how perfect they are, or depending on the day, how much they frustrate you because they cannot seem to turn the damn lights off in any room at any time ever!!!
Regardless, we all think these random thoughts, but never in the last 8 yrs of Savy's life have I looked at her and thought, "Will someone be able to fall in love with her? Will she experience the beauty of a loving relationship? A family? A true love?" In fact its just the opposite for me when I watch Savy talk. I'm thinking, "This girl is gonna have to beat the guys off with a stick! She is awesome!" You see, I think the same things about Cash, cuz he is awesome too. He's adorable, and I'm sure he will dazzle the ladies with his sky blue eyes, but after they get past those windows to his soul will they think, "What a cute guy, I'll always be here as his friend to help him." or will they think, "I can love this man."
I know it seems like I am rambling a bit, and to be honest I am, but its my fear. I was asked.
Sunday, August 26, 2012
Pics Galore!
Some old, some new; all are precious. Enjoy!
Couple videos at the bottom!
Now the vids...
There will be more of this sort of post in the future, as I have finally uploaded all my phone pics on my computer.
Cashtons Grace Foundation is coming along, and the Facebook fan page is up as well. The website, although not finished yet, should be live by September first so we can get to helping all those preemie parents who feel lost and confused.
Thanks for visiting! Chat soon.
God Bless!
Thursday, August 16, 2012
The Teeter Totter
It has been said, "If you love someone set them free..." you know the line.
The problem for me is I really don't want to have to hunt them down. The setting free part is comendable, but what if they don't come back? Or if they do, what if they are different?
I think this is the reason so many parents allow their children to move back in after college(and I'm not talking about a short time while looking for work etc, I'm talking about the 25 yr old who never left and mom still folds his laundry).
Todays post is about my sweet little daughter Savy. Oh man has she grown up a bunch in the last year or two, and I'm having a real problem with it. For the most part, I think its due to Cash. Any newborn needs attention, they need care and love, even coddling and extra concern; but with Cash I worry about him more than I ever did Savy. This is all understandable to most, and I don't apologize for being overprotective of him, but how is this translating to my other child?
I'm left-handed, in the "right" frame of my mind, so I think more in overlapping circles than compartmentalized squares. Savy is left-handed, and 8. Sometimes we are so in line with our thoughts, and other times I feel like a satellite flung out, about to hit the point where I shoot back like a rubberband towards earth just as she's headed towards me the other direction. We pass quickly and then, poof, we cannot even see each other.
So I've been thinking about all this, how our talking about Cash this and Cash that and no I'm sorry we cannot do that because we have a doctors appointment for Cash or the multitude of I forgots presumably due to 99% of my brain mulling over Cash stuff. Guilty. Very guilty everytime it happens.
Now though, she is keeping score and I'm afraid I'm down at least a couple touchdowns.
We bring it back to Savy as much as possible, even taking her on our once Date Nights so she feels special and not forgotten. Her summer was extraordinarily busy with lots of great visits, camps etc, all focused on making sure she wasn't just sitting in doctors offices or therapy sessions watching Cash. I think we did a good job.
But I am reminded of the story my mother has told me countless times about my brother Gerald not long after he came home. Mom asked her 4 yr old(me) to sit with him while she made lunch just a few steps away, then it happened, a blood curdling scream straight from her newborns lips. She darted back to see what was the matter, and I had Geralds fingers clamped between my teeth. I was not letting go. After he settled down, she asked me why, and I said, "I hate him, he took my mommy."
This is all fairly common between siblings, nothing to crazy, but the point is, I was able to get my frustration out and tell my mother why I was angry. Savy has never had that opportunity. Her situation is different, older than I was for sure, but more importantly, she knew he could "break" or maybe a step further, "he was broken already, and needed to be fixed". So out of her good nature, she had to suppress any of those feelings.
This past Sunday Kimbeley left for an out of town job, coming back Tuesday night. Within seconds of her walking in the door, Savy makes it clear she wants her mommy back, even saying to me "I wish you and Cash were not here, and I could snuggle with mommy." I guess she symbolically bit his fingers.
Is it the love she has for her mother, or anxiety from lack of attachment that frustrated her. Are Savy and I butting heads for which reason? Will this question be asked when she goes off to college ? Jealousy? Just growing pains and nothing more? I'm at a loss.
One thing I know for sure, I finally know the answer to how parents love their children diefferently. Its very weird to say you love your kids the same, but at the same time different. Volumes of pages could be written just describing how this works, exists and ultimately benefits each child. It is nearly impossible to really explain, but as a parent you just nod your head and agree.
We don't mean to, and don't really want to, it just is. How we demonstrate this balancing act is kind of like sitting on a teeter totter with your kid. It goes up and down, you doing the majority of the work, but nevertheless it rocks back and forth. One day your kid is up and one day they are down, and same to you; but put another kid of a different weight on the other end and it takes a different amount of effort. I hope I balance the love I have with both, I think I do anyhow. As the parent on one side of that teeter, you just have to make sure the kid waiting their turn doesnt see their siblings totter go higher; or you risk getting scolded, or worse.
To tie all this together, I think Savy is growing up beautifully. I genuinely like her and guess she will have many friends. She has a great demeaner. So we've done something right so far. That being said, I have to let the rope out a little further, while making sure that when she looks back she sees me watching her; all the while, holding Cash.
When I finally have to set her free, I hope she comes back. More importantly, I hope she comes back happy and grateful for the sacrifices her parents made. One thing is for sure, I must let her know how grateful we are for the sacrifices she has and will continue to make. Until then I'll keep the teeter tottering, loving both my kids to the best of my ability. Maybe we all will get through this rough patch as we blaze this path none of us have ever walked before.
I love you Savy. Thank you for everything!
The problem for me is I really don't want to have to hunt them down. The setting free part is comendable, but what if they don't come back? Or if they do, what if they are different?
I think this is the reason so many parents allow their children to move back in after college(and I'm not talking about a short time while looking for work etc, I'm talking about the 25 yr old who never left and mom still folds his laundry).
Todays post is about my sweet little daughter Savy. Oh man has she grown up a bunch in the last year or two, and I'm having a real problem with it. For the most part, I think its due to Cash. Any newborn needs attention, they need care and love, even coddling and extra concern; but with Cash I worry about him more than I ever did Savy. This is all understandable to most, and I don't apologize for being overprotective of him, but how is this translating to my other child?
I'm left-handed, in the "right" frame of my mind, so I think more in overlapping circles than compartmentalized squares. Savy is left-handed, and 8. Sometimes we are so in line with our thoughts, and other times I feel like a satellite flung out, about to hit the point where I shoot back like a rubberband towards earth just as she's headed towards me the other direction. We pass quickly and then, poof, we cannot even see each other.
So I've been thinking about all this, how our talking about Cash this and Cash that and no I'm sorry we cannot do that because we have a doctors appointment for Cash or the multitude of I forgots presumably due to 99% of my brain mulling over Cash stuff. Guilty. Very guilty everytime it happens.
Now though, she is keeping score and I'm afraid I'm down at least a couple touchdowns.
We bring it back to Savy as much as possible, even taking her on our once Date Nights so she feels special and not forgotten. Her summer was extraordinarily busy with lots of great visits, camps etc, all focused on making sure she wasn't just sitting in doctors offices or therapy sessions watching Cash. I think we did a good job.
But I am reminded of the story my mother has told me countless times about my brother Gerald not long after he came home. Mom asked her 4 yr old(me) to sit with him while she made lunch just a few steps away, then it happened, a blood curdling scream straight from her newborns lips. She darted back to see what was the matter, and I had Geralds fingers clamped between my teeth. I was not letting go. After he settled down, she asked me why, and I said, "I hate him, he took my mommy."
This is all fairly common between siblings, nothing to crazy, but the point is, I was able to get my frustration out and tell my mother why I was angry. Savy has never had that opportunity. Her situation is different, older than I was for sure, but more importantly, she knew he could "break" or maybe a step further, "he was broken already, and needed to be fixed". So out of her good nature, she had to suppress any of those feelings.
This past Sunday Kimbeley left for an out of town job, coming back Tuesday night. Within seconds of her walking in the door, Savy makes it clear she wants her mommy back, even saying to me "I wish you and Cash were not here, and I could snuggle with mommy." I guess she symbolically bit his fingers.
Is it the love she has for her mother, or anxiety from lack of attachment that frustrated her. Are Savy and I butting heads for which reason? Will this question be asked when she goes off to college ? Jealousy? Just growing pains and nothing more? I'm at a loss.
One thing I know for sure, I finally know the answer to how parents love their children diefferently. Its very weird to say you love your kids the same, but at the same time different. Volumes of pages could be written just describing how this works, exists and ultimately benefits each child. It is nearly impossible to really explain, but as a parent you just nod your head and agree.
We don't mean to, and don't really want to, it just is. How we demonstrate this balancing act is kind of like sitting on a teeter totter with your kid. It goes up and down, you doing the majority of the work, but nevertheless it rocks back and forth. One day your kid is up and one day they are down, and same to you; but put another kid of a different weight on the other end and it takes a different amount of effort. I hope I balance the love I have with both, I think I do anyhow. As the parent on one side of that teeter, you just have to make sure the kid waiting their turn doesnt see their siblings totter go higher; or you risk getting scolded, or worse.
To tie all this together, I think Savy is growing up beautifully. I genuinely like her and guess she will have many friends. She has a great demeaner. So we've done something right so far. That being said, I have to let the rope out a little further, while making sure that when she looks back she sees me watching her; all the while, holding Cash.
When I finally have to set her free, I hope she comes back. More importantly, I hope she comes back happy and grateful for the sacrifices her parents made. One thing is for sure, I must let her know how grateful we are for the sacrifices she has and will continue to make. Until then I'll keep the teeter tottering, loving both my kids to the best of my ability. Maybe we all will get through this rough patch as we blaze this path none of us have ever walked before.
I love you Savy. Thank you for everything!
Thursday, July 26, 2012
My Son Has Cerebral Palsy
At exactly 1:17 pm, Thursday July 26th, 2012 my son was officially diagnosed with CP. At 1:18 pm, I was absolutely resolute to not allow this to prevent my child from being the best he can be while coping with his condition.
Since December 2011 we knew this was the most likely outcome of Cashton's early arrival.
Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive,[1][2] non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement. Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.[4][5] Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases. CP, no matter what the type, is often accompanied by secondary musculoskeletal problems that arise as a result of the underlying etiology.
We have been blessed with a gorgeous child, who has brought so much joy to us already, but needs us more than ever. His mother and I will provide anything that helps, no matter the cost; but most importantly, will keep giving him all the love he needs to master every milestone the Lord allows him.
Savanah, his big sister, will hug, kiss and play with him like she always has-she is his best friend.
I am heartbroken.
Since December 2011 we knew this was the most likely outcome of Cashton's early arrival.
Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive,[1][2] non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement. Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.[4][5] Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases. CP, no matter what the type, is often accompanied by secondary musculoskeletal problems that arise as a result of the underlying etiology.
We have been blessed with a gorgeous child, who has brought so much joy to us already, but needs us more than ever. His mother and I will provide anything that helps, no matter the cost; but most importantly, will keep giving him all the love he needs to master every milestone the Lord allows him.
Savanah, his big sister, will hug, kiss and play with him like she always has-she is his best friend.
I am heartbroken.
Saturday, July 21, 2012
The Stocking...
Kimberley and I enjoy having breakfast together. Savy watches Cash, or I should say, Cash watches Savy. Anyhow, it gives us time to reconnect and get the day started right, and gives us another opportunity to share thoughts about our kiddos.
This mornings chat was a good one, so I wanted to post it as soon as possible, preserving our thoughts and feelings for our future reflection.
Kim: So yesterday on the way home from work I was thinking about when I will decorate for Christmas.(Yes, K is a control freak/planner. We are going on a family trip the day after Turkey day, the normal time she decorates the house for Christmas) She starts tearing up. K: I remember packing up after Christmas last year and when I Put Cashton's stocking away, I cried and prayed as I folded it up. Me: It was tough not having him home last year, wasn't it? Crying she says K: Yes, but I wasn't sure he would be with us this year. I thought about how hard it would be to open up the boxes and find his stocking if we had lost him. (I sat there speechless) Choked up Me: That prayer has been answered, hasn't it? K: Yes, it has.
We hugged.
I love how close these feelings and talks make us. We cannot believe we are getting so close to his first birthday; miracles do happen, everyday.
Have a great weekend everyone!
This mornings chat was a good one, so I wanted to post it as soon as possible, preserving our thoughts and feelings for our future reflection.
Kim: So yesterday on the way home from work I was thinking about when I will decorate for Christmas.(Yes, K is a control freak/planner. We are going on a family trip the day after Turkey day, the normal time she decorates the house for Christmas) She starts tearing up. K: I remember packing up after Christmas last year and when I Put Cashton's stocking away, I cried and prayed as I folded it up. Me: It was tough not having him home last year, wasn't it? Crying she says K: Yes, but I wasn't sure he would be with us this year. I thought about how hard it would be to open up the boxes and find his stocking if we had lost him. (I sat there speechless) Choked up Me: That prayer has been answered, hasn't it? K: Yes, it has.
We hugged.
I love how close these feelings and talks make us. We cannot believe we are getting so close to his first birthday; miracles do happen, everyday.
Have a great weekend everyone!
Wednesday, July 11, 2012
One Mans Small Is Another Mans Big
They tell you when you start PT or visit with the Neurologist that improvement or change comes in baby steps. You will nod your head in agreement, but hope that the developmental milestones come sooner rather than later. Many times they do. Sometimes they don't.
Cash has now been receiving therapy for about 6 weeks. The first few times are pretty tough to see. Your parental instinct to comfort your baby is strong, and each time he cries you want to jump up and say "Stop!". You know whats best for him, so you allow it to continue. The therapist is pushing your child to do their best and that sometimes means a few tears. I equate it to an adult working out and grunting. It's no fun, but you know whats necessary for you to acheive your goals.
Four times a week, I witness my son screaming, breathing hard and the tears roll down his cheeks. Its just short of miserable, but the end goal makes it worth it. Our therapists are great, and they give Cash time to recover and after a bit, even they know when to say when. We are lucky to have them, good therapists are hard to find.
My pointing this out is not to gain sympathy, but to express how tough these days can be, sometimes. Then there are those amazing moments, like when your child lifts his head and turns it while on his belly. Most parents enjoy this as a typical milestone, expecting it to come in time. We may appreciate it more than most, considering it took about 40 hrs of therapy to reach that goal. Between the therapists four, one hour visits and our additional 30 min to hour workout we give Cash each day, it adds up. Think about Crossfit, or some other hardcore workout, then apply it to a 4 month old(corrected age) and consider it 7 days a week. Sometimes even more. It's a commitment, no doubt.
The little victories that we as parents experience with our children are memorable. The first crawl, the first bite, the first word etc. As a parent of a child with special needs, we get excited when the leg is moved up, before the crawl. One mans small, is another mans big.
Kimberley pulled out the first multiple head rotation while on his belly the other day. I'm glad it happened on her watch, I know that sometimes she feels a little in the dark in regards to therapy.
When these little miracles happen, I always go back to Cash' birth, the viability test and when the nurses started calling Cash Rocky. We've come a long way, but have a long road ahead.
I pray for the strength on those days I don't want to make the drive to PT, or those weeks of seemingly no change, to keep it up and stay positive. I guess I'll just hold my little warrior and wait for his smile, its better than coffee or a red bull. Cash provides the motivation, does the work and manages the shortcomings; all I have to do is encorage him. My job is easy.
Cash has now been receiving therapy for about 6 weeks. The first few times are pretty tough to see. Your parental instinct to comfort your baby is strong, and each time he cries you want to jump up and say "Stop!". You know whats best for him, so you allow it to continue. The therapist is pushing your child to do their best and that sometimes means a few tears. I equate it to an adult working out and grunting. It's no fun, but you know whats necessary for you to acheive your goals.
Four times a week, I witness my son screaming, breathing hard and the tears roll down his cheeks. Its just short of miserable, but the end goal makes it worth it. Our therapists are great, and they give Cash time to recover and after a bit, even they know when to say when. We are lucky to have them, good therapists are hard to find.
My pointing this out is not to gain sympathy, but to express how tough these days can be, sometimes. Then there are those amazing moments, like when your child lifts his head and turns it while on his belly. Most parents enjoy this as a typical milestone, expecting it to come in time. We may appreciate it more than most, considering it took about 40 hrs of therapy to reach that goal. Between the therapists four, one hour visits and our additional 30 min to hour workout we give Cash each day, it adds up. Think about Crossfit, or some other hardcore workout, then apply it to a 4 month old(corrected age) and consider it 7 days a week. Sometimes even more. It's a commitment, no doubt.
The little victories that we as parents experience with our children are memorable. The first crawl, the first bite, the first word etc. As a parent of a child with special needs, we get excited when the leg is moved up, before the crawl. One mans small, is another mans big.
Kimberley pulled out the first multiple head rotation while on his belly the other day. I'm glad it happened on her watch, I know that sometimes she feels a little in the dark in regards to therapy.
When these little miracles happen, I always go back to Cash' birth, the viability test and when the nurses started calling Cash Rocky. We've come a long way, but have a long road ahead.
I pray for the strength on those days I don't want to make the drive to PT, or those weeks of seemingly no change, to keep it up and stay positive. I guess I'll just hold my little warrior and wait for his smile, its better than coffee or a red bull. Cash provides the motivation, does the work and manages the shortcomings; all I have to do is encorage him. My job is easy.
Friday, June 22, 2012
The O2 dilemma
So it goes without saying that we want to get rid of the O2. The cumbersome cords for the pusle oximeter, air tube and tank slow us down, irritate him and prevent easy travel. That being said, its tough for us hypersensitive parents to break the chain.
Cash is constantly pulling on the nasal canula, rubbing his nose and getting ticked off by the uncomfortableness of it all. I couldn't imagine. On the flip side, Kim, Savy and I are always worried about the tube getting pinched, the pusle ox having power, the tank leaking or falling etc... Its a pain in the rumpus!
We are trying to keep the O2 off Cash as much as possible, without tiring him out. Usually thats about 5 hrs a day. Sometimes when we dont have OT or PT we can pull off 8 hrs. We really need to get him to a full day before July 5, our next OCRG test, but thats probably not gonna happen. It is what it is.
To give you an idea, think about how much it takes to move a newborn; all the stuff you gotta load up in the car. All the prep thats needed and checklists to run through for a "normal" kid grows by 50%.
So you got the usual stuff; baby bag and all the stuff in it, strollers, car seats, toys, pacifier etc. Then add to that an air tank, a pulse oximeter, the cords for both, a tank carrier, placement of it all, proper placement of the nasal canula, tape for the nasal canula, the air tank key and make sure there's enough O2 in the tank to last the entire trip. Then while traveling, hearing the monitor beeping will drive ya nuts! Like I said, a real pain. I couldn't imagine those who must do more than us, with wheelchairs etc.
God bless them all.
My youngest brother is getting hitched next weekend, and we are making the trip down to the ceremony, but Kim and the kids are coming back immediately afterwards strictly due to the O2 and pulse ox monitor. The monitor beeps everytime he yawns, needs to burp, passes gas or the sensor is hardly touched. This amount of beeps would drive a hotel guest crazy, and since the volume cannot be lowered, it would keep not just us up all night, but our hotel neighbors as well. So it goes, just gotta cope.
My point is not to whine about the situation, but to explain why we gotta get him off this O2 assistance. As soon as we do, we are gonna start making some road trips. I'm seeing a tank free Cashmonster in Austin, eating at a taco trailer and walking south Congress. Maybe taking a train ride at Zilker. Going to the Houston zoo or seeing the coast for the first time. I cannot wait to explore the world with him, introducing him to more than just a doctors office, hospital or our living room.
The time will come when we can sleep all night, wake up refreshed and ready to take on his other challenges without being exhausted from the rough nights sleep before. The time will come when we can have someone watch him and not be scared by seeing the extra baggage he comes with. The time will come. Patience. Breathe.
I slept for shit last night. Ha!
On the bright side, Cash loves to play. His nurse Ms. Rhonda has taught him to play peek a boo. Here is a quick clip of him being a ham.
Cash is constantly pulling on the nasal canula, rubbing his nose and getting ticked off by the uncomfortableness of it all. I couldn't imagine. On the flip side, Kim, Savy and I are always worried about the tube getting pinched, the pusle ox having power, the tank leaking or falling etc... Its a pain in the rumpus!
We are trying to keep the O2 off Cash as much as possible, without tiring him out. Usually thats about 5 hrs a day. Sometimes when we dont have OT or PT we can pull off 8 hrs. We really need to get him to a full day before July 5, our next OCRG test, but thats probably not gonna happen. It is what it is.
To give you an idea, think about how much it takes to move a newborn; all the stuff you gotta load up in the car. All the prep thats needed and checklists to run through for a "normal" kid grows by 50%.
So you got the usual stuff; baby bag and all the stuff in it, strollers, car seats, toys, pacifier etc. Then add to that an air tank, a pulse oximeter, the cords for both, a tank carrier, placement of it all, proper placement of the nasal canula, tape for the nasal canula, the air tank key and make sure there's enough O2 in the tank to last the entire trip. Then while traveling, hearing the monitor beeping will drive ya nuts! Like I said, a real pain. I couldn't imagine those who must do more than us, with wheelchairs etc.
God bless them all.
My youngest brother is getting hitched next weekend, and we are making the trip down to the ceremony, but Kim and the kids are coming back immediately afterwards strictly due to the O2 and pulse ox monitor. The monitor beeps everytime he yawns, needs to burp, passes gas or the sensor is hardly touched. This amount of beeps would drive a hotel guest crazy, and since the volume cannot be lowered, it would keep not just us up all night, but our hotel neighbors as well. So it goes, just gotta cope.
My point is not to whine about the situation, but to explain why we gotta get him off this O2 assistance. As soon as we do, we are gonna start making some road trips. I'm seeing a tank free Cashmonster in Austin, eating at a taco trailer and walking south Congress. Maybe taking a train ride at Zilker. Going to the Houston zoo or seeing the coast for the first time. I cannot wait to explore the world with him, introducing him to more than just a doctors office, hospital or our living room.
The time will come when we can sleep all night, wake up refreshed and ready to take on his other challenges without being exhausted from the rough nights sleep before. The time will come when we can have someone watch him and not be scared by seeing the extra baggage he comes with. The time will come. Patience. Breathe.
I slept for shit last night. Ha!
On the bright side, Cash loves to play. His nurse Ms. Rhonda has taught him to play peek a boo. Here is a quick clip of him being a ham.
Wednesday, June 13, 2012
Let The Love Flow
Well I'm happy to report that the family is finally getting into a stable routine, much happier and learning how best to cope with the challenges ahead! This post will all be rainbows and butterflies. Thank God!
So since my last post we have had 3 doctor, 6 therapy and 2 eval appointments for Cash. In total, starting next week we will have 16 therapy and 3 doc appointments scheduled each month for at least 2 years, which is more than a part time job by itself. Thankfully we have the greatest nurse to help me, and its summer for Savy allowing for more flexibility.
The oxygen situation has improved tremendously, and after our next test on July 5th, I'd be surprised if he's still needing it, at least not more than an as needed basis.
Cash is such a strong little boy. He goes through therapy fighting the whole way. Its humbling to say the least. So much character in such a little man. His smile is beautiful, and he is starting to gigle a little bit. Oh, and he gives us kisses. The sloppiest, wettest goodness anyone could wish for! I admit, I cried like a 5 yr old little girl the first time he did it. There was a time I wasn't sure I'd ever get it.
Regarding the therapy, I must give a huge thank you to our friend Brenda Hudson for getting it going for us. She took him on as her PT patient then got us our OT as well! She is a big part in all the little victories we have experienced recently. Thank you Brenda!!
Lets do a recap of our Victory list shall we...
Much improved head control
Eats like a champ, up to 6 oz now
Starting on cereal
Found his hands
Better eye tracking
Smiles galore
Ending 2 meds next week
Discovering his personality
Knows his mommy, daddy and big sisters voices
Smiles more with Savy than anyone
Rarely spits up
Lung strength is way up
Can turn his head when on his stomach, when he gets pissed, not all the time, but still much better
Sleeps 10+ hrs each night with one feed usually around 3-4am
Loves mobiles
Holds and shakes his rattle when interested
One other thing, my boy is handsome. Seriously, this kids eyes are more blue than the Carribean. He has slightly wavy dirty blonde hair. A nicely shaped nose and perfect puffy lips. I'm proud. What can I say?!
He loves to be read to, but you better make sure he can see the pictures. He is as strong as an ox. I aint kidding, this kid can almost do pullups!! In a month or two, with all this working out he's getting even stronger.
Momma is fully back to work, and I'm, well, busy. I do wish I had been able to keep the online store we purchased for me to work from home, but as Cash' appointments piled up and some other circumstances arose we sold it. In due time I will be working as Franek Consultings meeting planner, marketing/sales. Hopefully that will happen by the spring.
Savy is at camp, and each day I get the mail hoping for a letter, but no go so far. I sure do miss her, but I'm guessing she's having the time of her life. No time for dear old dad.
Last but not least, we have not forgotten the other babies in the NICU, as well as their parents; hope to start working on our foundation soon.
Thats it folks. Told ya nothing but rabbit farts and fairy burps this go round. Its all good at mi casa.
Oh, and I'm joining the church choir in August. Time to give back.
Peace out yall!
So since my last post we have had 3 doctor, 6 therapy and 2 eval appointments for Cash. In total, starting next week we will have 16 therapy and 3 doc appointments scheduled each month for at least 2 years, which is more than a part time job by itself. Thankfully we have the greatest nurse to help me, and its summer for Savy allowing for more flexibility.
The oxygen situation has improved tremendously, and after our next test on July 5th, I'd be surprised if he's still needing it, at least not more than an as needed basis.
Cash is such a strong little boy. He goes through therapy fighting the whole way. Its humbling to say the least. So much character in such a little man. His smile is beautiful, and he is starting to gigle a little bit. Oh, and he gives us kisses. The sloppiest, wettest goodness anyone could wish for! I admit, I cried like a 5 yr old little girl the first time he did it. There was a time I wasn't sure I'd ever get it.
Regarding the therapy, I must give a huge thank you to our friend Brenda Hudson for getting it going for us. She took him on as her PT patient then got us our OT as well! She is a big part in all the little victories we have experienced recently. Thank you Brenda!!
Lets do a recap of our Victory list shall we...
Much improved head control
Eats like a champ, up to 6 oz now
Starting on cereal
Found his hands
Better eye tracking
Smiles galore
Ending 2 meds next week
Discovering his personality
Knows his mommy, daddy and big sisters voices
Smiles more with Savy than anyone
Rarely spits up
Lung strength is way up
Can turn his head when on his stomach, when he gets pissed, not all the time, but still much better
Sleeps 10+ hrs each night with one feed usually around 3-4am
Loves mobiles
Holds and shakes his rattle when interested
One other thing, my boy is handsome. Seriously, this kids eyes are more blue than the Carribean. He has slightly wavy dirty blonde hair. A nicely shaped nose and perfect puffy lips. I'm proud. What can I say?!
He loves to be read to, but you better make sure he can see the pictures. He is as strong as an ox. I aint kidding, this kid can almost do pullups!! In a month or two, with all this working out he's getting even stronger.
Momma is fully back to work, and I'm, well, busy. I do wish I had been able to keep the online store we purchased for me to work from home, but as Cash' appointments piled up and some other circumstances arose we sold it. In due time I will be working as Franek Consultings meeting planner, marketing/sales. Hopefully that will happen by the spring.
Savy is at camp, and each day I get the mail hoping for a letter, but no go so far. I sure do miss her, but I'm guessing she's having the time of her life. No time for dear old dad.
Last but not least, we have not forgotten the other babies in the NICU, as well as their parents; hope to start working on our foundation soon.
Thats it folks. Told ya nothing but rabbit farts and fairy burps this go round. Its all good at mi casa.
Oh, and I'm joining the church choir in August. Time to give back.
Peace out yall!
Wednesday, May 16, 2012
Post-Op Update
So I ended my last post with all things pre-op. Today will be during and after our last surgery, which took place May 7th 2012.
May 7 am
Up and at 'em, we arrive at the hospital for Cash' surgery at 6:15am. Surgery is scheduled for 7:30am. After some delays, we finally get into the pre-op room around 9:45am. Cash is in good spirits, but starving and thirsty since his last meal allowed was at 10:30pm the previous night. Nurses begin prepping Cash, I cry like a baby, yada yada yada. Dr. Whitehead tells us the risks, expects an hour so for the surgery and explains what he is doing. Off Cash goes.
Here are the basics: There are 4 ventricles(V) in your brain, they are each filled with spinal fluid. Ventricle 1 is fine and always has been. V2 enlarged to a 3, on a scale from 1-4, 4 being worst. It stopped expanding on its own. V3 got to a 4 and would have continued expanding, hence the shunt. V4 was a slight concern when Cash was in the NICU, but the doc was hoping it would stop growing, it didn't. Pressure was building over the 2 1/2 weeks since leaving the hospital causing the increased size in Cash head that the pediatrician measured. As an aside, Kimberley noticed the fontanelle(the soft spot) had gotten a bit firmer our first day home, we went to pediatrician and she said it was fine. Looking back, Kim was right.
So Cash' production of spinal fluid in his 4th V was not stopping, putting pressure on the brain and risking further brain damage, requiring this surgery. There is a membrane that seperates each ventricle, making each V its own little balloon. Dr. Whitehead, in order to avoid needing an additional shunt, decided to pierce the membrane between the 4th and 3rd V, allowing the spinal fluid to flow between the two ventricles, and draining out the shunt.
11:30am, the nurse comes to update us that Cash was out of surgery and doing well and already back on the nasal canula. Since he was put under, he was intubated, which scared us as to how long it would take to progress back to where we were. I know its weird to those who haven't experienced this, but the little victories are huge, its what keeps us going. So we are very happy and cannot wait to see Cash. About noon we get to see our little miracle.
May 7 pm
12:10pm - So we roll into the post-op room, which if you have never seen it, sucks. Poor kids are all lined out after surgery. Moaning and crying are heard all around. Many parents sitting next to their children of all ages feeling hopeless, happy, sad and mad. Its a surreal experience. I pray I never have to go back. So in the farthest corner from the door, lays my little bundle of joy, stoned out of his mind. After passing all the other patients I am pretty depressed, but as soon as Cash hears his mommy and daddy's voice he perks up! His beautiful blue eyes open up and they still have that spark we all love to see in our kiddos. He's tired, but he is ok. Thank you Doctor Whitehead for keeping my little boy safe! The doc doesnt anticipate there was any additional brain damage from the 4th V swelling, we caught it in time. The nurses and doctors all say he was great and never cried. The surgery was succesful and easy, although he did say he went ahead and replaced the shunt catheter as it was developing some scar tissue that could have made it malfunction. They do ask for a precautionary CT to double check a couple things. We do it, and he passes with flying colors. Here is what the CT scan process looks like. Terrible to see your baby going through this, but its still a marvel of science.
1:30 pm - We check into our room. Cash is looking good, Kim and I are exhausted. I stick around til 4pm before getting Kim some overnight food and bev. I kiss them both goodbye as I rush home to be with Savy and give her the good news about Cash' surgery. By the way, my father-in-law Pat came this whole week to help with Savy, getting her to and from school when needed, thank you Pat!
8pm - Good night Savy, good night world. This was a long day.
May 8/9 - Kim stayed with Cash the whole time, changing his diaper, feeding him and loving on him all day and night. This was a big task, and I applaud her for her strength. I know it was long, lonely and sleep deprived. The stay was mostly typical, nurses in and out, drab colors and lots of poking and prodding for Cash. I came and went to give Savy some stability, bring in fresh food and drinks for Kim and grab stuff from home Kim needed. I also got our handicap parking sign which will give us much needed room to load and unload all things Cash. I promise not to use it unless he's in the car with me, or I'm in a rush. Relax, its only good til November.
There is one story I will relay, and it has to do with parents/family always know the patient better than the docs. Its also a challenge to any of you who will deal with docs in the future. Here goes...
On Tuesday, I arrived to see Cash was still on 1/2 liter of O2. We had expected this to be at 1/4 by now, same as home. The pulminologist won't let Cash go home til he is on 1/4 liter, so this was a big deal. So I discussed this with Kimberley, and watched him closely as I listened. She was going on and on about the nurse interruptions every 3 hours or more, docs parading in and out and the beeps of all the machines preventing quality rest. So I just asked myself, "Self, how miserable would you be recovering from brain surgery, not getting good sleep, and having all these wires and tubes everywhere with beeps going at all times?" The answer was simple, end it all. So first I call the nurse, tell her my plan and send her on her way to make it happen. Here is what I did...
1) Put sign on door that noone enters without nurse approval.
2) On sign say, "When you enter, be quiet and dont turn on lights unless necessary"
3) Get the pulminary team in here asap
4) Take off as many wires as possible
5) Mute that damn monitor and
6) If he is eating well, remove the electrolytes so he has one less tube.
7) Replace the canula, and put it on CORRECTLY!!!
The sign was done in 5 minutes. 5 wires removed and 1 tube were taken off within an hour with doctor approval; I was able to get them to use the pulse oxymeter to monitor his HR and O2, which he still had on and was used to. Duh. That got rid of the monitor as well, and the electrolytes were 86'd as well. The nurse helped us correct the canula placement as well. Poof, he fell straight to sleep, and Kim's nerves were calming down. Within 15 minutes Kim was sleeping.
Now the pulminary team. I see them looking through his window, staring at reports etc on the computer, so I go meet them in the hall. Here is what I said. "Who is in charge here? (They all pointed to 1 guy) "Alright man, reports aint gonna get you the answer, you gotta come watch him. You can stare at that screen all day, and nothing is going to change. Common sense is what we need here, now follow me." They all kinda looked perplexed, but they agreed to follow me in to see Cash. "First, I just had a bunch of wires removed that yall had on him, all adult sized btw; now he is sleeping and his O2 levels are at a 100. Isn't 97 the ideal rate? Ive been told 100 is too high." The lead doc says, "The extra O2 isn't going to hurt him." I reply, "Except you won't give us the go-ahead to discharge if he isn't on 1/4 or less, right?" "Yes", he says. "So my plan is to get him home, so follow me on this. If you will turn his O2 down to 1/4 liter, I bet he does great, especially now that I've made him comfortable."
At this point, the team all decide its ok. Kim and I are praying I am right. Show em what you can do, my little beast, one more time. One of the docs watches him sleep while the other 3 and myself talk about his recovery etc etc. The one watching is occasionally saying his saturation rates out loud. "98, 97, 99, 97, 98..." Meanwhile I keep talking about how uncomfortable he was, and that I think we would be checking out already if they had stopped looking at the computer and spent more time with the patient. A few minutes goes by then my worst fear; beep beep beep. The main doc looks at me and says, "Oh, thats not good, he may need a bit more O2 a little longer." Then the doc who was watching Cash says, "Actually, the canula came out of his nose a minute ago, and I was just watching to see how well he would do without it."
Booyah!! Bite me old man, my boy just sucker punched you! The canula slipped back in place and he continues at the 96-98 rate. To sum it up, they agreed to leave him at 1/4, but we must stay one more night.
So Kim and Cash are sleeping soundly and so I don't wake them up while eating my kettle cooked N'awlins Crawtators potato chips I step outside in the hall just as the pulminary team was leaving and heard the following exchange. "That dad was a hoot, huh?" says one of the team to the main doc, "Yes, but he was right" says the doc.
I tell you this story in detail, mainly because it is sometimes necessary to speak your mind to the docs. They are not God, no matter how much they may think so. You have to stand up and be loud, but you better have your facts straight. Noone will ever know or care for your children like you do; sometimes you have to prove it.
May 9 - We got discharged. Coming home was sweet.
May 13 - Cash is happy!
May 7 am
Up and at 'em, we arrive at the hospital for Cash' surgery at 6:15am. Surgery is scheduled for 7:30am. After some delays, we finally get into the pre-op room around 9:45am. Cash is in good spirits, but starving and thirsty since his last meal allowed was at 10:30pm the previous night. Nurses begin prepping Cash, I cry like a baby, yada yada yada. Dr. Whitehead tells us the risks, expects an hour so for the surgery and explains what he is doing. Off Cash goes.
Here are the basics: There are 4 ventricles(V) in your brain, they are each filled with spinal fluid. Ventricle 1 is fine and always has been. V2 enlarged to a 3, on a scale from 1-4, 4 being worst. It stopped expanding on its own. V3 got to a 4 and would have continued expanding, hence the shunt. V4 was a slight concern when Cash was in the NICU, but the doc was hoping it would stop growing, it didn't. Pressure was building over the 2 1/2 weeks since leaving the hospital causing the increased size in Cash head that the pediatrician measured. As an aside, Kimberley noticed the fontanelle(the soft spot) had gotten a bit firmer our first day home, we went to pediatrician and she said it was fine. Looking back, Kim was right.
So Cash' production of spinal fluid in his 4th V was not stopping, putting pressure on the brain and risking further brain damage, requiring this surgery. There is a membrane that seperates each ventricle, making each V its own little balloon. Dr. Whitehead, in order to avoid needing an additional shunt, decided to pierce the membrane between the 4th and 3rd V, allowing the spinal fluid to flow between the two ventricles, and draining out the shunt.
11:30am, the nurse comes to update us that Cash was out of surgery and doing well and already back on the nasal canula. Since he was put under, he was intubated, which scared us as to how long it would take to progress back to where we were. I know its weird to those who haven't experienced this, but the little victories are huge, its what keeps us going. So we are very happy and cannot wait to see Cash. About noon we get to see our little miracle.
May 7 pm
12:10pm - So we roll into the post-op room, which if you have never seen it, sucks. Poor kids are all lined out after surgery. Moaning and crying are heard all around. Many parents sitting next to their children of all ages feeling hopeless, happy, sad and mad. Its a surreal experience. I pray I never have to go back. So in the farthest corner from the door, lays my little bundle of joy, stoned out of his mind. After passing all the other patients I am pretty depressed, but as soon as Cash hears his mommy and daddy's voice he perks up! His beautiful blue eyes open up and they still have that spark we all love to see in our kiddos. He's tired, but he is ok. Thank you Doctor Whitehead for keeping my little boy safe! The doc doesnt anticipate there was any additional brain damage from the 4th V swelling, we caught it in time. The nurses and doctors all say he was great and never cried. The surgery was succesful and easy, although he did say he went ahead and replaced the shunt catheter as it was developing some scar tissue that could have made it malfunction. They do ask for a precautionary CT to double check a couple things. We do it, and he passes with flying colors. Here is what the CT scan process looks like. Terrible to see your baby going through this, but its still a marvel of science.
1:30 pm - We check into our room. Cash is looking good, Kim and I are exhausted. I stick around til 4pm before getting Kim some overnight food and bev. I kiss them both goodbye as I rush home to be with Savy and give her the good news about Cash' surgery. By the way, my father-in-law Pat came this whole week to help with Savy, getting her to and from school when needed, thank you Pat!
8pm - Good night Savy, good night world. This was a long day.
May 8/9 - Kim stayed with Cash the whole time, changing his diaper, feeding him and loving on him all day and night. This was a big task, and I applaud her for her strength. I know it was long, lonely and sleep deprived. The stay was mostly typical, nurses in and out, drab colors and lots of poking and prodding for Cash. I came and went to give Savy some stability, bring in fresh food and drinks for Kim and grab stuff from home Kim needed. I also got our handicap parking sign which will give us much needed room to load and unload all things Cash. I promise not to use it unless he's in the car with me, or I'm in a rush. Relax, its only good til November.
There is one story I will relay, and it has to do with parents/family always know the patient better than the docs. Its also a challenge to any of you who will deal with docs in the future. Here goes...
On Tuesday, I arrived to see Cash was still on 1/2 liter of O2. We had expected this to be at 1/4 by now, same as home. The pulminologist won't let Cash go home til he is on 1/4 liter, so this was a big deal. So I discussed this with Kimberley, and watched him closely as I listened. She was going on and on about the nurse interruptions every 3 hours or more, docs parading in and out and the beeps of all the machines preventing quality rest. So I just asked myself, "Self, how miserable would you be recovering from brain surgery, not getting good sleep, and having all these wires and tubes everywhere with beeps going at all times?" The answer was simple, end it all. So first I call the nurse, tell her my plan and send her on her way to make it happen. Here is what I did...
1) Put sign on door that noone enters without nurse approval.
2) On sign say, "When you enter, be quiet and dont turn on lights unless necessary"
3) Get the pulminary team in here asap
4) Take off as many wires as possible
5) Mute that damn monitor and
6) If he is eating well, remove the electrolytes so he has one less tube.
7) Replace the canula, and put it on CORRECTLY!!!
The sign was done in 5 minutes. 5 wires removed and 1 tube were taken off within an hour with doctor approval; I was able to get them to use the pulse oxymeter to monitor his HR and O2, which he still had on and was used to. Duh. That got rid of the monitor as well, and the electrolytes were 86'd as well. The nurse helped us correct the canula placement as well. Poof, he fell straight to sleep, and Kim's nerves were calming down. Within 15 minutes Kim was sleeping.
Now the pulminary team. I see them looking through his window, staring at reports etc on the computer, so I go meet them in the hall. Here is what I said. "Who is in charge here? (They all pointed to 1 guy) "Alright man, reports aint gonna get you the answer, you gotta come watch him. You can stare at that screen all day, and nothing is going to change. Common sense is what we need here, now follow me." They all kinda looked perplexed, but they agreed to follow me in to see Cash. "First, I just had a bunch of wires removed that yall had on him, all adult sized btw; now he is sleeping and his O2 levels are at a 100. Isn't 97 the ideal rate? Ive been told 100 is too high." The lead doc says, "The extra O2 isn't going to hurt him." I reply, "Except you won't give us the go-ahead to discharge if he isn't on 1/4 or less, right?" "Yes", he says. "So my plan is to get him home, so follow me on this. If you will turn his O2 down to 1/4 liter, I bet he does great, especially now that I've made him comfortable."
At this point, the team all decide its ok. Kim and I are praying I am right. Show em what you can do, my little beast, one more time. One of the docs watches him sleep while the other 3 and myself talk about his recovery etc etc. The one watching is occasionally saying his saturation rates out loud. "98, 97, 99, 97, 98..." Meanwhile I keep talking about how uncomfortable he was, and that I think we would be checking out already if they had stopped looking at the computer and spent more time with the patient. A few minutes goes by then my worst fear; beep beep beep. The main doc looks at me and says, "Oh, thats not good, he may need a bit more O2 a little longer." Then the doc who was watching Cash says, "Actually, the canula came out of his nose a minute ago, and I was just watching to see how well he would do without it."
Booyah!! Bite me old man, my boy just sucker punched you! The canula slipped back in place and he continues at the 96-98 rate. To sum it up, they agreed to leave him at 1/4, but we must stay one more night.
So Kim and Cash are sleeping soundly and so I don't wake them up while eating my kettle cooked N'awlins Crawtators potato chips I step outside in the hall just as the pulminary team was leaving and heard the following exchange. "That dad was a hoot, huh?" says one of the team to the main doc, "Yes, but he was right" says the doc.
I tell you this story in detail, mainly because it is sometimes necessary to speak your mind to the docs. They are not God, no matter how much they may think so. You have to stand up and be loud, but you better have your facts straight. Noone will ever know or care for your children like you do; sometimes you have to prove it.
May 9 - We got discharged. Coming home was sweet.
May 13 - Cash is happy!
Tuesday, May 8, 2012
One Word: Emotional
THIS ENTRY WAS WRITTEN OVER A MONTHS TIME.
April 21
Since we got home nearly 2 weeks ago the roller coaster of emotions hasn't stopped. The high we were on getting him home lasted the first two days, then the reality set in on all things baby. Been a while since we've done this, and getting into the rhythm has taken me longer than Kim. Thankfully she took on the challenge successfully and without frustration so I could follow her lead.
Cash has been great, he even slept a solid 4+ hours night one. We are up to 5 hours now, so we only need to get up once per night for a feed. He has done very well with his feeds which were a big concern at TCH. He's taking about 4oz 6-7 feeds a day. 12.6 lbs!!! Gettin' big for sure. We visited the pediatrician twice and neuro doc once. Pulminologist in 2 weeks. Working on PT and hopefully an in home nurse a couple times a week. Probably the most difficult thing is to manage the o2. The tank and monitor with hose and wire are cumbersome to say the least. Basically, we are trapped in a 20 ft area all day, unless we hook up a smaller tank, unplug the monitor from wall and load everything into the stroller. Carrying Cash from room to room is impossible. This makes for a pretty unproductive day.
May 2
Now close to a month home, we have settled into a good routine. Cash sleeps well at night and Kim and I are swapping nights to get up and feed him around 2:30am. Savy isn't holding up as well. Her school work has suffered a bit, and attitude has been abundant. We are trying to consider her feelings when we reprimand her but that is sometimes hard to do. Nothing huge, just a bunch of little stuff that's adding up. For the most part, we think Savy has handled Cash coming home pretty well. Its a huge change for any kid who has a new baby in the house, but after 6 months of hospital stress, I think its a little harder on Savy. We never got the big happy coming home most families enjoy, and by the time we did get Cash home we were all so relieved and exhausted that we just tried to sleep through it.
Well crap, the monster is at it again; gotta get him settled down. Til next time...
May 3
Pediatrician apptmnt, 10:30; In-Home nursing admit 12. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 3 evening
Well shit, the doctor measured Cash' head and its grown nearly 2 inches in less than a month. This is definitely not good. Called Neuro for update and advice and they scheduled us to come in tomorrow at 2. I have a feeling we will be back in the hospital soon. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 4 morning
Kim and I took Cashmonster to his doc apptmnt. These tanks and monitors are brutal to move around. When we were in the room waiting for the doc Kim looked at me and said thank you. She realized how hard it is for me when I am doing all this alone. The nurses don't have much compassion for the logistical nightmare it is to weigh Cash without his clothes on so they can get an accurate reading. Deduct 4oz for the onesie, and we will call it even, jeesh!
We are keeping a good face, but we know the 2pm apptmnt is a big hurdle for us. Cash seems to be a bit more cranky, and we are noticing his eating is suffering. The unknown is scary.
May 4 evening
Just as we thought, the 4th ventricle is swelling considerably. After a CT scan its confirmed, we will have surgery first thing Monday morning. He will be admitted for 3 days. Just got a call from school, Savy has a fever. My brother Louis is picking Savy up and taking her to doc for script and watching her til we get home. I love my brother, he has been a great listener and a reliable assistant through all this. I owe him.
Questions I am asking...
When will we ever get to be "normal"? Why is it that every time there is a "chance" of a problem, it comes to fruition? When will Cash ever get a break? How will K and I cope with this? Will Savy be ok knowing her brother is going into surgery, again, while she is at school? How many more times will I be told by Savys teachers, school parents, peers etc that she broke down crying at lunch, during a test or got mad at something small? Will she run and play at recess or will she sit by herself, again? Do we need counseling?
Can we just sleep through this? Will Cash' strength fail him? Whats the % of error in brain surgery, and do three of them start testing our luck? Who will watch Savy during these three days? Will Kims clients understand? What if we lose another client, will we be able to pay our bills? Can we afford to keep Savy at private school? Will our financial aid request for Savy school be denied, then what? Should Kim be going out of town? Should I cancel my brothers bachelor party trip? Will the in-home nurse do everything right?
Will Cash' head ever get to a normal size? Can Kimberley maintain her workload? Will the maid change her schedule this week? Will we qualify again for medicaid? When will our insurance stop paying? Does Cash' head hurt him? Will he get an infection? How many times do we have to do this? Will I ever get to be alone with Kim again? How can I help Kim and lighten her load? Does Savy feel left out, and how much of this does she really understand? How much of this do I understand?
May 5
Cinco De Marco party. Attended, but wasn't really there. Glad to see all the neighbors, most of whom have been helpful and thoughtful. Peace out, I'm going to bed.
April 21
Since we got home nearly 2 weeks ago the roller coaster of emotions hasn't stopped. The high we were on getting him home lasted the first two days, then the reality set in on all things baby. Been a while since we've done this, and getting into the rhythm has taken me longer than Kim. Thankfully she took on the challenge successfully and without frustration so I could follow her lead.
Cash has been great, he even slept a solid 4+ hours night one. We are up to 5 hours now, so we only need to get up once per night for a feed. He has done very well with his feeds which were a big concern at TCH. He's taking about 4oz 6-7 feeds a day. 12.6 lbs!!! Gettin' big for sure. We visited the pediatrician twice and neuro doc once. Pulminologist in 2 weeks. Working on PT and hopefully an in home nurse a couple times a week. Probably the most difficult thing is to manage the o2. The tank and monitor with hose and wire are cumbersome to say the least. Basically, we are trapped in a 20 ft area all day, unless we hook up a smaller tank, unplug the monitor from wall and load everything into the stroller. Carrying Cash from room to room is impossible. This makes for a pretty unproductive day.
May 2
Now close to a month home, we have settled into a good routine. Cash sleeps well at night and Kim and I are swapping nights to get up and feed him around 2:30am. Savy isn't holding up as well. Her school work has suffered a bit, and attitude has been abundant. We are trying to consider her feelings when we reprimand her but that is sometimes hard to do. Nothing huge, just a bunch of little stuff that's adding up. For the most part, we think Savy has handled Cash coming home pretty well. Its a huge change for any kid who has a new baby in the house, but after 6 months of hospital stress, I think its a little harder on Savy. We never got the big happy coming home most families enjoy, and by the time we did get Cash home we were all so relieved and exhausted that we just tried to sleep through it.
Well crap, the monster is at it again; gotta get him settled down. Til next time...
May 3
Pediatrician apptmnt, 10:30; In-Home nursing admit 12. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 3 evening
Well shit, the doctor measured Cash' head and its grown nearly 2 inches in less than a month. This is definitely not good. Called Neuro for update and advice and they scheduled us to come in tomorrow at 2. I have a feeling we will be back in the hospital soon. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!
May 4 morning
Kim and I took Cashmonster to his doc apptmnt. These tanks and monitors are brutal to move around. When we were in the room waiting for the doc Kim looked at me and said thank you. She realized how hard it is for me when I am doing all this alone. The nurses don't have much compassion for the logistical nightmare it is to weigh Cash without his clothes on so they can get an accurate reading. Deduct 4oz for the onesie, and we will call it even, jeesh!
We are keeping a good face, but we know the 2pm apptmnt is a big hurdle for us. Cash seems to be a bit more cranky, and we are noticing his eating is suffering. The unknown is scary.
May 4 evening
Just as we thought, the 4th ventricle is swelling considerably. After a CT scan its confirmed, we will have surgery first thing Monday morning. He will be admitted for 3 days. Just got a call from school, Savy has a fever. My brother Louis is picking Savy up and taking her to doc for script and watching her til we get home. I love my brother, he has been a great listener and a reliable assistant through all this. I owe him.
Questions I am asking...
When will we ever get to be "normal"? Why is it that every time there is a "chance" of a problem, it comes to fruition? When will Cash ever get a break? How will K and I cope with this? Will Savy be ok knowing her brother is going into surgery, again, while she is at school? How many more times will I be told by Savys teachers, school parents, peers etc that she broke down crying at lunch, during a test or got mad at something small? Will she run and play at recess or will she sit by herself, again? Do we need counseling?
Can we just sleep through this? Will Cash' strength fail him? Whats the % of error in brain surgery, and do three of them start testing our luck? Who will watch Savy during these three days? Will Kims clients understand? What if we lose another client, will we be able to pay our bills? Can we afford to keep Savy at private school? Will our financial aid request for Savy school be denied, then what? Should Kim be going out of town? Should I cancel my brothers bachelor party trip? Will the in-home nurse do everything right?
Will Cash' head ever get to a normal size? Can Kimberley maintain her workload? Will the maid change her schedule this week? Will we qualify again for medicaid? When will our insurance stop paying? Does Cash' head hurt him? Will he get an infection? How many times do we have to do this? Will I ever get to be alone with Kim again? How can I help Kim and lighten her load? Does Savy feel left out, and how much of this does she really understand? How much of this do I understand?
May 5
Cinco De Marco party. Attended, but wasn't really there. Glad to see all the neighbors, most of whom have been helpful and thoughtful. Peace out, I'm going to bed.
Tuesday, April 10, 2012
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...
Sunday, April 8, 2012
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!
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
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!
Sunday, April 1, 2012
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
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
Saturday, March 31, 2012
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...
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.
Wednesday, March 28, 2012
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
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.
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.
Monday, March 19, 2012
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.
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
Saturday, March 17, 2012
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!
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!
Subscribe to:
Posts (Atom)