September 18, 2013

Winding Down...

So two Fridays ago, I ended up in the ER.  I was home with Clayton and started having chest pain that radiated through my left arm and up through my neck and head, all on my left side.  I am not a hypochondriac nor am I am one to freak out about pain or bodily cramps.  But I had never felt anything like this and with all of our stress with Clayton, my getting older and my being overweight (I've gained 25 lbs since Clayton got cancer), I was a bit worried.  Since my normal doc was not in, I went to the ER to be safe.  They did all kinds of tests to rule out anything life threatening.  The diagnosis was unspecified chest pain.  It seems to have been a severe anxiety attack.  Not gonna lie though, I thought I might have been having a heart attack.  The irony of that for me was that I spent a lot of time this summer trying to get healthy even when I wasn't losing weight.  I was easily gettinig my 30 minutes of physical activity daily around the hospital, I wasn't eating as much meat and I was eating and drinking fruits and veggies like they were going out of style (yes drinking because of juicing).  I stay away from foods with MSG, hormones, antibiotics, artificial preservatives, flavoring, etc., and foods that are GMOs.  In other words, probably 80% (maybe more) of my diet are healthy whole foods.  So the idea that I could have been having a heart attack after changing my lifestyle over the past couple of years and especially over the past few months was incredibly ironic to me at the time.
The fact is though, I am getting closer to thirty, under extreme pressure on a daily basis and overweight.  A heart attack is more and more likely.   It is not unheard of for women to have heart attacks at 30 (which I'm getting closer too).  I am becoming more and more aware that I am aging and I have to continue to grow and respect my body through diet and exercise.  Not to mention my risk for cancer.  My grandmother had cancer, my father had cancer and my son has/had cancer, so what reason to I have to believe that I won't get cancer myself? I have none. 
One of the things that started me changing our diets over the past couple of years was watching what Clayton's body has gone through and my growing respect for both the power and the vulnerability of the human body.  I mean seriously, when is the last time any of you parents watched your child breath in and out and thanked God for the ability for those lungs to breathe in and out again and again.  Really, how many of you have stared at the rise and fall of your child's chest and thought about their lungs as magic?  I have.  I have because I have seen how quickly that one seemingly "expected" bodily function can stop working properly.  Everything we have witnessed with Clayton has given me a deep respect for the human body and what we ask it to endure.  I have grown to understand both how delicate it is to our environment, as well as how receptive it is to healing when possible.  One of the things I started doing over the summer was juicing.  I juice fresh fruits and vegetables everyday.  Even Clayton drinks the juice of about four freshly juiced carrots each day for their powerful antioxidants.  I've also reduced the amount of meat I eat and cut out most grains.  Clayton continues to drink his organic milk and apple juice and we have finally gotten him off of Apple Jacks and onto organic honey O's.  Progress.  I know there are many people who think this stuff is a waste, but my child had cancer and I beleive in this stuff.  I believe it can help his body recover from the past two years and I believe it can act as a preventative when used properly.  I have to thank my friend Annabeth and her angel Abigail for inspiring me to take my family's health further and explore many of these lifestyle changes.  Here's the thing: as crazy as some might things I am about this, I don't want to put Clayton through chemo again.  Once was enough.  It sucked.  It sucked bad and now feels like a bad nightmare.  So if I can do something while the cancer is not growing that could potentially keep it from coming back, then hell yea I'm going to do it.  I will do whatever I can to spare Clayton, George and myself from enduring that hell all over again.  So if that makes me a hippie or a health nut, then I'll be the happiest damn hippie-health nut you ever saw!
Maybe it's because I have spent the past two years surrounded by so many beautiful souls fighting for life.  I have lived in one hospital after another.  I have rested my head on the edge of one hospital bed after another with weary eyes while caring for Clayton post op.  In 2013 alone, I have spent four out of nine months away from home. I have spent time with beautiful children who have died.  I have watched many children vomit uncontrollably just trying to make it down a hallway as they endure the chemo being used to fight their cancer.  I have watched children grit through the pain of spinal surgeries as they have to find the strength to walk again.  I have seen children bouncing around on their new prosthetic limbs like they had just been handed the world.  I have seen so many sweet sweet sweet little beings for whom their lives will end too soon or for whom they have been asked to endure a lifestyle most people could not imagine. And I describe it as though witnessing these things makes me special.  Not what I mean.  It doesn't.  It makes me aware.  More aware than most people, which is why all of these things have changed me and shaped me these past two years.  I live in constant fear Clayton's life will end too soon.  And now I'm starting to fear my own life will end too soon.  I'm tired and trying to keep whatever strands of sanity I can still cling too.  Now that we are past his back surgery and home again, I am turning all of my attention to Clayton, our health and The George Clayton Childhood Cancer Foundation.  So you won't hear a whole lot from me.  I'll still post from time to time and if we have anything big happen I'll certainly keep everyone updated through the blog, but on a regular basis, I'll be more absent.  BUT Clayton and I will be at the store a few days a week and will pop in and out even when we don't spend he day there, if anybody wants to come visit.
As for how Clayton is doing now... Good.  Much more himself.  Moving good, but ready to get the cast off mid October.  

September 11, 2013

September 11, 2013

Sorry for the lack of updates.  Friday night we got to have an overnight pass and since things went great, they discharged us Saturday morning.  Usually they like you to stay local for a day or two, but since we had been inpatient for more than a week post op and Clayton seemed to be doing well, the doctor told us we could go ahead and head home if we liked.  We liked.  So we snuck home Saturday and got in that evening.  Things have been good at home.  Some days Clayton walks a decent amount and other days he doesn't want to walk at all.  He is hard to handle right now since he doesn't walk a lot, can't get up and down on his own with the cast and weighs so much with the cast.  All of this makes it hard for our mothers to handle him on their own.  Plus he can't ride in a regular car seat right now. Things will be like this for the next month, but hopefully will get better when the cast is removed.  George and I can say for sure that if I had not resigned from my job before this trip, I would have had to resign once I got back.  Clayton can't go to school and is a little much for our moms to handle right now, plus he wants me.  I really am the only one that can care for him right now.  Which is awesome that I get to be with him, but a little hard too.  Things are going pretty good though.  More later...

September 3, 2013

September 3, 2013

Lots of ups and downs the past few days.  Sunday was great, Monday mostly sucked and today wasn't so bad.  We seem to have gotten most things under control and are now battling not constipation, but gas.  Poor buddy has lots and lots and lots of gas.  And I know because I saw it on the x-ray today.  We are trying to give him some relief from that.  The really bad news is that the gas seems to be keeping him from wanting to walk and until he is walking and more himself, we definitely can't go home.  I was really hoping maybe Friday we could leave, but that is looking unlikely now.  Maybe by Tuesday...

First time sitting him up:

Trying to get him to stand for first time:

Much better at sitting up now:

Trying to adjust to limited mobility with his cast:

His poor fingers from his blood sugar pricks and his swollen elbow from the infiltrated IV:

He is adjusting though and doing much better with the cast.  The doctors had to "crack him like a peanut" as they put it and that has made the cast much more comfortable for him.

September 2, 2013

September 1, 2013

Looking back, Tuesday night through Thursday night were miserable.
After a rough night Thursday night, Clayton's CO2 and PH levels didn't appear to be getting much better.  In the end everyone agreed we needed to split his cast and give him more room to take deep breaths.  So like Dr. Sucato said, we cracked him like a peanut.  From that point on, his CO2 and PH levels stabilized and later that night began improving.  So all in all things seem to be getting better Friday.  Our biggest problem seemed to become his constipation and keeping his glucose stable.
Saturday things again improved.  His respiratory got better and better and late in the day he finally had some BMs.  He also seemed more comfortable sitting up.  The downfall Saturday was that Clayton's extra IV line came out and later in the day his IV line in use infiltrated.  And because of the potassium in his fluids, his left arm was swollen at his elbow and on his hand from the irritation caused by the potassium.  With his cast, we couldn't access his port, so we had to stick him that night which was a disaster.  I think they (even the anesthesiologist tried) tried to get an IV six or seven times without any luck.  It was miserable to have to do that to Clayton.  Oh yeah, he did take just a couple of steps Saturday.  They were uncomfortable and just a few, but they were steps.
Which brings us to Sunday morning.  Since we couldn't get an IV we had to cut an opening in his cast for his port.  Not what we wanted to wake up and do.  Thankfully after we did, we got to leave him alone and not access his port, but instead give his body a chance to do its thing.  And low and behold it did.  Who would have thought.  The doctor managing all of these things is not Dr. Sucato, but the on staff pediatrician.  He is a numbers man.  And a paranoid man.  What I have learned in all of my time with Clayton's medical, is that sometimes doctors have a hard time letting go of medicine and giving the body a chance to do what God designed it to do.  They use IVs and fluids and drugs as a crutch.  These things are designed to help, not to hinder and that seems to be a fine line many doctors struggle with.  Saturday morning Clayton had two IV lines and an arterial line.  By 1 a.m. Sunday morning, all of these lines had come out on their own...contrary to what the doctor would have liked.  Then they could not get an IV on him.  Because of this, Sunday we had a good reason to argue to not put Clayton on fluids or anything and to instead try and get him to eat and drink properly.  Something he had not been doing since surgery.  We did, and he did and his body responded by finally stabilizing his glucose like we had been hoping it would.  Something the dextrose in his fluids never helped his body to do.  I fully believe that Clayton's little body said enough is enough, if the doctor isn't going to to the dang thing then I will and "spit" those IVs out.  His body knew it was time and didn't care if the doctor believed it or not.  Clayton's body has always done its own thing in a way that has always led us in the right direction.  I know some people squawk at the idea that the human body can do anything right without intervention from modern medicine, but maybe those people have not seen the miraculous things I have seen through Clayton.  Anyway...Just saying.
Sunday turned out to be a good day.  He did great with respiratory and pain management and finally took some good steps walking four to five feet the first time and ten or so feet the second time.  He also ate two hotdogs, one and a half chicken nuggets, a nutter butter cookie and drank two sippie cups of milk.  So we're getting somewhere.  Blood sugars have stayed good all day and he's doing great sitting up.
It has definitely been a very long week though.  And for me and Clayton followed by a very long two and a half months cooped up in this hospital.  And to think we might be out of here on Friday and headed home...first order of business will be to get some mums and pumpkins for my front porch and for the store...because its fall!  My favorite time of year!  Of course, we have a busy schedule ahead.
September- See Dr. Terry to figure out our next move with the stent (we have to do something with it by beginning of November)
October - Check in here with Dr. Sucato and get cast off and later scans in NYC
November- Back to Dallas for another check in with Sucato and at some point stent stuff.

Busy, busy, busy...