Tuesday, October 29, 2013

It's A Hospital, Not A Coffee Shop

For those of us that has had the unfortunate luck to spend any length of time in the hospital with a child or loved one, you can probably appreciate the depth of exhaustion that comes with it. There is absolutely no rest. Tired does not even begin adequately define how your body and soul feels.  It doesn't matter how many times you have been in and out of that setting, it never changes.  It is a 24 hour a day revolving door.

Matthew was hospitalized again last week with a virus and dehydration.  One thing led to another, as it always does, and his heart rate dropped.  A person's heart rate will almost always increase in the setting of dehydration, but for some still unknown reason, his decided to drop and hover in the 40's and 50's.  Initially he was admitted to a hospital close to home that we rarely use for him.  All of his specialist are nearly two hours away and this is typically where we go. But, in this case, we assumed it would be a simple admit for fluids and observation.  I should have known nothing is ever text book with him.

As we got settled in, the constant stream of residents, nurses, hospitalists, techs, housekeeping, dietary, and the mail man (not really, but it sounded good), began to rain in.  The same history and background that I have spewed out countless times over the years to new doctors was recited for yet another team.  His complex renal history is always of interest, especially to the eager med students and residents.  It is so tiring to go through it each and every time.

Being close to home this time, we had the comfort of visits from his little brother and daddy.  We were also pleased to have some visits from some other friends.  They were perfectly timed visits.  Prayers were offered up, a quick word of hello, and well wishes. This was certainly a treat and a welcome distraction to the necessary evils of a hospitalization. When we are in New Orleans, a visitor is nearly unheard of due to the distance. There have been many times over the years where the walls can almost feel as though they are closing in. 

But, how long is an appropriate amount of time to stay if you visit in the hospital. Five minutes? Ten minutes? Half an hour? There is not magic number.  Every situation differs.  It can vary greatly.  I think it takes some common sense on the part of the visitor.  You need to assess the condition of the person you are visiting.  Are they napping? Are they in pain? For me personally, I have made it a rule of thumb that I just don't visit in the hospital, unless it is a close family member or a close friend.  If it is just an acquaintance I would not want to chance bringing anything to someone that is trying to heal.  A germ that may not bother me, could become serious business to someone with a weakened immune system.  If I do visit someone that I am close to, I am careful to watch the time and not overstay.  If I want to chat with someone, we can do that on much more pleasant terms when they are feeling better. 

Visits can be exhausting to Matthew.  He is one that always feels the need to be polite and "entertain" if you will.  He likes to engage in conversation.  When you are sick, you just don't have the energy to do those things.  I thought back to his very first hospitalization in 2007.  After three days in the PICU, I finally cornered his nurse and pleaded with her with tears rolling down my face to help me find a way to limit his visitors.  There was a FLOOD of people who wanted to come by to see Matthew, and to check on me and Billy.  This was something that we truly and genuinely appreciated.  Every visit was with good intentions.  However, the sheer volume of people was beginning to be overwhelming. We were asked the same questions over and over again that we just didn't have the answers to. I was too emotionally exhausted to politely ask that visitors keep their voices low and visits short. No one could even really talk to Matthew, he was just too sick. 

Matthew's sweet nurse assured me that she could help out.  A sign was made and placed on his door that read only two visitors at a time and visits must be limited to 5 minutes or less.  She went on to tell me that each nurse from shift to shift would be notified.   

I don't guess there is a "right" or "perfect" setting for anyone that is sick and in the hospital.  Too many visitors can be overwhelming; and no visitors can be lonely.  If there was only a way to just wiggle our noses and create the perfect environment at the exact time we need it.  Just as with anything in life, it's about balance.  Thankfully nearly everyone has been respectful and has allowed Matthew the rest that his necessary to heal each time.

He is home now and feeling much better.  Thankfully!  God has again heard our prayers! Back to school tomorrow.

Tuesday, October 22, 2013

Really God...Again?

Why does my view once again include the Air Med landing pad?  Well, Matthew is once again back in the hospital.  I find myself more often than I would prefer updating family and friends via FB on Matthew's health status.  Oh how I wish it could just be pictures of an innocent 11 year old playing and doing the things little boys his age do.

Then that sweet boy reminds me with all the wisdom of a 90 year old man that this too is part of God's great plan for his life.  It never ceases to fill me with amazement the amount of grace that Matthew has been given by God.  He will never fail us and he will never leave us.  All things will happen for a reason.

After spending the past 24 hours with a nasty stomach bug, his pediatrician looked at him this morning and wanted him admitted for observation and fluids.  So, we have checked into his "suite" at the hospital.  He has been dining on beef broth and jello!  Yummy!  Poor guy would be much happier with the pot roast. All in good time!

It is so affirming to me that when I have low times and want to call into question "WHY", Matthew is always there to remind us of the answer.  Because it is in His plan.  After that there is no further explanation.  We will continue to find positivity in all that we endure.  We will continue to provide education and advocacy on bp issues in children.  We willl continue to share His word in hopes that it can provide comfort to someone who may need it. 

As a mom, I could not have more pride than I do in my two children.  Those boys understand more at 8 and 11 about God's love and patience than I did at 25. 

Sunday, October 20, 2013

Not Yet God

When thinking back over all of the hurdles we have crossed with Matthew since 2007, the hardest emotionally, is thinking back to the day that changed our lives forever. It was the day Matthew had a glimpse into the beauty and love that is heaven.

It had been a harrowing week of no answers and no hope.  It was all in God's hands and the medical professionals that were entrusted to care for him. Believe me when I say they were doing EVERYTHING in their power to try and figure out what was causing this tiny, innocent four year old to be in such critical condition.  With blood pressures soaring over 200, 210, 220 systolic, we knew that stroke, heart attack, or death could be imminent.  These were deadly blood pressures for any adult, but when you see this thin, frail little body with numbers like this ravaging his body, it was gut clenching.

The day had finally come. It was to be the day he was transferred to another hospital with a specialized team of nephrologists trained to diagnose and treat whatever kidney issue was at work here. Tests had identified the renal system, but without the help of a skilled pediatric nephrologist, a clear cut diagnosis could not be made.

A trauma nurse was sent with the ambulance to make the ride to New Orleans.  The team had arrived and now we just needed to wait for Matthew to wake completely from the bed side procedure he had just gone through to reposition his arterial line and insert a central line.  After a few minutes we were let back into his room. His daddy, myself, and his nanny (who by the way is a registered nurse) gathered around his bed. There was a lot of nervous excitement in the room.  We knew this would be the day to bring more answers.  With answers would come a game plan.  Within just a couple of minutes he woke up and smiled looking almost refreshed.  The dark black circles remained around his hallow eyes. 

"Hey Buddy! Are you ready to go on a fun ride in the ambulance?" He smiled with the tiny bit of energy he had in him. He talked about riding in the ambulance. He was looking forward to it.  Being a huge automobile lover, this was a real treat for him. There was chit chat. He was very lucid and coherent.  Very aware of his surroundings and what was happening this day.

The preparations were under way to get him from his bed to the stretcher and out the door.  This required unhooking the leads and monitors that he had been chained to for the past week.  As the portable monitors were being set up we continued to talk about how much fun the ride would be to New Orleans.  His daddy would be going with him as well. Then, just like the snap of a finger, his eyes rolled back in his head and he was out.  Not asleep, but out. Solid.

There was not immediate panic.  I mentally told myself that he was very tired and maybe the medicine from his bed side procedure was at play.  Even though he had been so awake just a few seconds earlier.  At first there was quiet, stroking of his hands and face. "Matthew, wake up.  Come on baby, time to get up and go."  After an amount of time had passed the attention from the medical staff quickly turned from portable monitors to that of Matthew.  The nurse began trying to ease him awake.  As did his nanny.  I trusted that they knew what to do and what was going on. This was normal right?  This is supposed to happen right?

The nurse immediately pressed the call button for the doctor to come in, and when she didn't come right back in, the nurse bolted from the door.  I could hear the conversation outside the room.  By this time, Matthew's color had turned nearly pale white. His lips lost all evidence of the pink color of life. Our world started whirling at the speed of light.  In an instant, his nanny, quickly moved to the side and told my husband and I to get close and talk to him.  Tell him everything you want to say.  This was an urgent, pressing statement. One I knew that I needed to treat with importance.  We gathered on each side of his head and began persuading.  "Come on Matthew!  It is time to wake up.  We need you to wake up.  Mommy and daddy love you."  The pleas turned from "wake up" to " we love you with all our hearts."  I remember my husband and I glancing quickly up at each other.  Each of us had eyes filled with tears the size of the ocean.  Unspoken words of dread and fear were all over our faces.  We knew this was not good. 

Outside the room, I could hear the doctor calling to the hospital in New Orleans he was to be transferred to.  The call to the PICU stated the down turn in his condition.  When I heard the sentence, "I don't know if he is going to make it" I wanted to just crumble into the floor and pretend none of this was happening.

Then the prayers started pouring from me.  "Please God, don't take my baby yet! He is so young and innocent.  He has a life of greatness to live."  Not really knowing if they would be heard, I just kept repeating them.  "God, not yet.  If you give my son back to me, I will give my life to you."

As the clocked ticked by it seemed more and more hopeless.  Sobs were uncontrollable.  We continued to stroke Matthew's sweet cheeks and kiss him.  Tell him we love him.  This all elapsed over a period that was documented in his medical record as about three to five minutes.  It may as well been five years.

Then, just like that, his beautiful hazel eyes shot open!  It was a second of disbelief.  God, have you really given him back?  He glanced around the room and said, "Mom, why is everyone crying?"  There was a collective sigh that I am sure could have been heard down the hallway of the PICU.  There are simply no words that I have been able to use in the past six years that can truly describe the intense, amazing, emotional weight that was lifted in an instant. 

We just looked at Matthew and I asked him with the biggest smile if he had a nice nap.  There was no time for words.  The medical staff went into high gear prepping him for immediate transfer to New Orleans.  Another call was made to the PICU letting them know Matthew did indeed pull through and was headed there ASAP.  There was to be a full battery of tests to be done as a workup to determine what had just happened in that room.

We would come to realize in later months, that there was such a higher power at work. A power that would lead Matthew nearly two months later to share the most amazing journey of his walk with four angels as he neared the gates of heaven.

His story has been a testament of the power of prayer and the ability to have faith even in the darkest times.  The chance for us to share this, to bring hope and an insight into what is on the other side has been nothing but a blessing. It's a journey that's not over yet. 

A Boy Back From Heaven--Coming March 11th!
Want to learn more? www.celestegoodwin.com

Wednesday, October 2, 2013

I Don't Want To Be Like the Jones Or Smiths Or Any Other Proverbial Family

I read an interesting blog post this morning that spoke volumes to me.  I am a Facebook devotee just like many of you, I love to see what is happening in the world of my friends and family.  Not because I need to see what outfit I am striving for next, or what cool new thing my kids "must have." But, because in the busy lives that we all lead, I simply just don't have time to call up everyone everyday and chat.  I love Facebook for this very reason.  People share snippets of their comings and goings and, to me, it is just a tool of the times we live in to communicate.  It is a tool for information sharing.  Having kids in school, it is great to see reminders posted by other school mommies.  And yes, I have been reminded of something I've overlooked at 11PM the night before something was going on at school the next day.  (Nothing like panic at almost midnight!)

Having raved about how awesome I think Facebook is, I am not na├»ve to realize there are certainly drawbacks.  I have come to the conclusion that you must be an emotionally strong person to use Facebook's platform.  If not, it could literally drive you insane.  And I have seen it happen!  It's human nature to want to share all of the AAAMMMMAAAZIING (yes, that is sarcasm) things happening in your life.  I am guilty!  When one of my children does something that makes my heart beam, I want to share it with the world. After all, that's what proud mommies do, right?  If they excel at something, or achieve something they have really been working hard on, I get very proud of their efforts. 

Now, if you start and end your day going through your feeds to only see all of the stellar accomplishments of your friends, their children, and families, one can tend to start to loose self worth.  Especially if you have had one of "those" mommy days.  A day where nothing goes right and you think you would have been better off just staying in bed.  A day where kids are arguing, can't find your keys, humidity hair, and any other host of issues that can make you feel blah.  Then, you open up your FB page, and right there like a blaring siren, you see a post from Mrs. Smith, or Ms. Jones going on and on about her son's achievement in this, or daughter's achievement in that.  Immediately, your self value begins to plummet like a penny off the Empire State Building roof. 

If you are not emotionally ready to see it you think, why did she have to post that picture of herself looking drop dead gorgeous next to her perfect children and perfect husband, on her perfectly manicured lawn, in front of the beautifully decorated door????

What should our reaction be?  Well, if you are a true friend, it should be shared happiness at the great things she is posting! (And we know that no one would ever post anything to make someone else envious, right? HA!) We all have one of those FB friends who gets a thrill from making her life seem seamlessly perfect!  (Deep down, just remember, she has probably cleaned a toilet just like you have!) There should be joy at the good things happening to those you care for.  If you can't filter through the rubbish, fake life posts, and be accepting of the positives, Facebook can drive you insane. 

I have never thought of myself as being someone who was envious or jealous of the great clothes, cars, or things of others.  I put worth on things that are much more important to me deep down.  The love of God that I have in my heart,  the blessings He has given me in my children, husband, family, and friends, the ability to serve Him and other through volunteerism and giving back, and being able to see that the superficial things in life are the least important.  I am happy when great things happen to those I care for.  I don't think less of them.  Nor, do I have a need to be just like them.  Their life is theirs, and mine is mine.  I kind of like it that way!

John 15:12-15 “This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends. You are my friends if you do what I command you. No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you.