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...

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