August 30, 2013

The Story...

I'm going to try and put the last 48 hours in a nutshell...
After surgery, Clayton appeared to be doing great.  Throughout that first night, he still seemed to be doing well.  Around 8 a.m. Wednesday morning, we noticed his blood pressure drop drastically.  The anesthesiologist over seeing his post-op care at the time said we would watch him, but she was OK with that due to his meds.  He was on a continuous morphine drip and some precidex.  He slept most all day.  As the day went on, he wanted to wake less and less, his blood pressures stayed low and his O2 saturations got worse.  The nurses continued doing tests throughout the morning, but it wasn't until nearly 2 p.m that they tested his blood sugar and found that it was 23.  If your not sure just how low that is, Google it.  It's low.  He was nearly comatose.  They decided to take him off of the morphine and precidex.  So no pain meds.  After major back surgery.  But they wanted to be sure he would wake.  Slowly he did.  Meanwhile, they gave him dextrose through his IV.  The problem with their plan, was once he woke he had no pain meds and because they couldn't decide what pain meds to give him, he was without them for nearly three and a half hours last night.  At 9 p.m. he got a pain med that didn't seem to make any difference, then around 10 p.m. he got some morphine and slept through the night slept on and off.  His respiratory rate improved, but his O2 stats still sucked.  
Thursday, today, his heart rate and respiratory rate were slightly improved, but no luck with his O2.  We monitored his glucose and blood gas every two hours.  Levels showed he was a little acidotic and not holding his blood sugar levels.  After a long day of waiting, we were finally able to make a plan with the doctor (not our orthopedic surgeon, but the doc overseeing his post-op care).  We were finally able to get his blood sugar stable, but his CO2 and PH levels have been up and down.  It's been kind of  a mess...oh and the bad news is that right now, because of respiratory issues we have had to put him on pain management that does not involve sedatives.  Not an easy thing to do.  We are having to try IV Tylenol only.  Rough go of it for everyone right now...

August 29, 2013

August 29, 2013

Bad day yesterday. Bad night. And today is TBD.  Details later...

August 28, 2013

August 28, 2013

Clayton had a good night and this morning he got to graduate from a mask to just blo-bi in his face.  I expect things will get harder after today as we have to start sitting him up and getting him on his feet.  That is the horrible part.  Here are some pics.  You can see his green cast covering his torso complete with his tummy cutout.  He'll have that for 6-8 weeks.  More later...

August 27, 2013

All Done...

We got to talk to the doctor at 5 and he reported things went well.  They followed their plan no problems.  No spinal cord changes during monitoring, minimal blood loss and great respiration.  We finally got to see Clayton around 7:30 this evening.  He has a continuous morphine drip and continuous presidex (sleepy medicine).  George is sleeping with him tonight and I am staying in our normal room down the hall trying to rest up for the coming days.  The next few days will be very difficult.  Especially days 3,4 and 5.  Please pray for Clayton's swift healing during this time. And pray for pee pee ASAP.  Always an issue after surgery.  More tomorrow...Goodnight for now.  Thank you for all of the many many prayers today, please keep them coming.

Still Waiting... 3:45

Still in surgery. Just got an update that things are going good.  It could be another hour to finish surgery and close things up and another hour for the cast.  Did I mention he was coming home in a cast?  Well, he is for 6 weeks.  Since he is prone to tantrums and thrusting his body around, we have to be sure and protect his back.  Anyway it'll be between 5 and 6 before we see the doctor probably.
Waiting sucks...


The doctor got his part started around 9:30.  His part should take roughly six hours.  We got a two hour update at 11:30 and everything is going according to plan.  Which is good I guess.  All I can say finding Dr. Sucato was a blessing.  More waiting...

Getting Started...

They just took him back at 8.  Now I'm left trying to work through the pain of them wheeling him away and the knowledge of the hardships the coming days will hold.

August 26, 2013

Not sure what to say this past week.  Tomorrow and the next few days are really going to suck.  Bad.  Supposively day six post op is the magic day...maybe a few days earlier for some.  Dr. Sucato's actually came by on Sunday to talk with us about the surgery...More on that later.  
They will take him down at 6:50 tomorrow morning and start around 8 or a little after.  No words for now.  Keep everyone updated.

August 22, 2013

August 22, 2013

MIBG and CT look good.  6 days for bone marrow results.  Thank you God!  Now we can breathe a little easier for the next three months while we focus on his back surgery and its healing process.  

August 21, 2013

August 21, 2013

Little man is doing scans now.  I got him a special for after all is said and done.  He wasn't exactly good going into it, but I'd give him the world if I could anyway.  It's hard to find the line between being exhausted by his crazy behavior and understanding why he behaves that way and being sympathetic.  Always feel torn.  Still have 4 hours of tests ahead...  

August 20, 2013

August 20, 2013

So it seems we are doing most of our cancer scans tomorrow.  We will do a MIBG, bone marrows and CT all under the same sedation. Very different than how we normally do it.  Because it will mean he will be sedated for three to four hours, they will be putting a breathing tube in.  George and I are definitely not happy about that, but if that's they way they have to do it, then we feel like we're backed into a corner if we want him screened for cancer.  Had we done this weeks ago as requested things would be much different and much more normal and familiar to us.  Big thanks to the nurse who couldn't get her ducks in a row and almost screwed us out of scans pre surgery all together (it would have been at least 6 weeks post op before we could do scans too).  This makes the second time she has fouled things up and the good doctor has had to swoop in and make things happen.  I'm just a little peeved with her right now and I think she knows it, because she hasn't been by to see us again or called.  I hate we have to do all of this before surgery.  I had hoped this could be a very pleasant-quiet- week.
Please pray the screening tomorrow goes safely...breathing tube and all.  And please pray for NED!

August 19, 2013

Loneliest weekend ever here.  All of our buddies are going home or are in the ICU after surgery.  There were only three of us long timers rolling the halls this weekend.  So glad folks are coming in starting Friday and I won't have to be by myself again!  It has been a full month since Clayton and I had any visitors.  We love each other, but we need a break.  
That aside, we have had some struggles with a couple of Dr. Sucato's staff about Clayton's cancer scans.  Not the good doc himself and not any of the inpatient staff, but a couple of his staff members who a month ago said no scans until after surgery, then last week they changed their tune and said no scans after surgery for a while so they scheduled them for this week, but that posed a respiratory risk with his surgery just a week away.  Then we thought we might be doing just a CT today, but no other scans before surgery.  It was a tough concept, but George and I made peace with that.   Then this morning they weren't ready for the CT, there were issues about contrast and it all turned into a roller coaster of a mess.  So today has been an adventure in trying to sort things out.  As it stands, I think we are actually going to attempt to do all of the tests in one sedation on Wednesday.  Unexpected decision, but the anesthesiologist in charge here said she would be comfortable with it, so here we go...
After writing this I finally got to talk with the good doctor who apologized for the way things were handled and assured me he would have everything taken care of.  He means business, so I know he will.  He is the type of man who calls people's cell phone to get what he wants and because he is the brilliant doc he is, people jump/respond.  There is still one test we won't be doing, but it seems we will be fitting the others in.  Now we just see if everything goes smoothly...
If things go smoothly, and we have good results, hopefully George and I can breath a little easier going into this surgery.

August 17, 2013

August Something 2013

I think I'm losing it.  I am so paranoid about losing Clayton right now.  He acts fine, his oxygen levels are great, his blood pressures are great, he wakes up raring to go, he's happy and laughing and moving all day long, he's eating and drinking and peeing great.  It's me, it's not him.  The idea of no cancer scans freaks me out!  Or at least late cancer scans.  Then this damn surgery.  Holy crap.  I'm scared out of my mind about this surgery.  I just don't know what to expect.  Clayton's surgery is riskier than many of the spinal fusions done here regularly because they are resecting one of Clayton's vertebrate.  Still wrapping my head around what we are about to do.  I wish I could tell him and him understand.  Maybe it would feel less like a betrayal if I could.  Instead all I can think is please forgive me.

Please pray that Clayton stays cancer free and especially that he stays cancer free while we do this surgery and he heals over the next couple of months.  We want him cancer free always, but we need extra prayers while we cannot do our regular scans.  God please protect this sweet boy and watch over him while the doctors can't search for cancer...Please.

August 15, 2013

August 15, 2013

My cancer anxiety is in full swing.  We are one week overdue for scans and my mind is racing.  Dr. Kushner talked with the docs here and said it would be fine to wait until he got his halo off before we did the scans, but as the parent that waiting is not so easy.  There is a certain amount of pain that comes with the waiting and the uncertainty; especially given what we are doing.  It was an enormously tough decision for George and I to make to bring Clayton here to correct his back while he was NED and still at such a great risk of relapse.  The idea that he could relapse a month from now or even now and we have spent some of his healthy days in a hospital has weighed heavily on us.  I knew though that if he ever did relapse he was going to need every respiratory advantage he could get, which meant a straight back.  So here we are...waiting to do scans almost a month late and about to go through what is likely Clayton's toughest surgery yet.  It's funny too, I did not realize how much I was going to miss MSKCC until having to seriously consider doing these scans somewhere else.  I'm fine with doing the CT and MRI here because we're comfortable here, but I hate the idea of taking him to a hospital/oncology team we're not familiar with to do the MIBG and bone marrows.  It's so nice because at MSKCC we know every doctor, most nurses, all of the recovery nurses, the anesthesiologist,  most everyone.  And they know Clayton.  At least we will definitely be seeing them for our next scans...
I feel as though I am surrounded by fear.  On the one side I have cancer and on the other side I have an incredibly risky spinal surgery.  This surgery that is only 12 days away will be Clayton's 15th operation and his 3rd major operation.  Did you catch that? He is not yet 5 and this will be his 15th procedure.  
Skipping around, this week has been a busy week at the hospital.  One of our buddies had his major surgery Tuesday, another got her halo vest off today, another had his major surgery today and another has her major surgery tomorrow.  That's the most action our little group of patients has seen around here amongst themselves.  We've spent all of this time watching others come and go and now our names are being called one by one.  It's scary even when it's not your child because you spend so much time with these children and their families.  And you know that the day will come when you are left waiting for what feels like dusk until dawn for your child to come out of surgery.  It is one of the most anxiety riddled experiences that is then followed by some of the hardest days ever.  They usually let them sleep the first day (which is when you also have to keep a close eye on respiratory after such a long surgery) and day two they make them sit up for an hour.  Day three they have to start walking.  I've been told by another mother that days 2-5 are miserable and day 6 is the magic day.  We'll see...
Oh and to make worries worse I found out my favorite cancer buddy,Justin, who relapsed for the 6th time and was declared NED in early July has just had his 7th relapse confirmed after being NED for just 4 weeks.  His body is weak and the cancer is progressing, so his only option is to go home, do some chemo, pray his cancer will be stable and then maybe he can be eligible for a study or trial somewhere.

Sorry about my skipping around with all of my random ramblings...if you could only see how these things go through my head...

August 13, 2013

August 12, 2013

Happy for now...

August 12, 2013

August 12, 2012

Clayton has continued to start tossing and turning every night around 4 a.m.  This morning around 4 he threw up again too.  I'm not sure what the reason for all of this is.  He has no fevers, blood pressure is great, his input and output are excellent, he doesn't have the runs and during the day he acts perfectly normal and even wakes up smiling.  My best guess is it has something to do with his antibiotic and maybe he needs to be on an antacid while he continues on the antibiotic.  The good news is he gets to shower today!  First time in a few weeks! Washing away that sweet little boy stink.  
It appears we are definitely doing the riskier of the surgeries, the vertebral column resection, in hopes that it will gives us more long term freedom and overall better results. Very nervous, but I know we have the best doctor to do it.  Only a very few doctors in the world are qualified to do this surgery correctly and ours is at the top of the list.  Dr. Sucato is to pediatric orthopedic surgery what Dr. La Quaglia is to pediatric solid mass tumors.  They rock their fields!
Just 15 days until surgery and in less than a month Clayton and I should be home!  After 3 months living in the hospital the idea of going home seems too good to be true.  God willing though we will be home soon...and home safely...and Clayton will be a lot straighter!  We would have a 6 week post op visit back here and we know we have to get scans immediately after his recovery and then, two months after surgery we have to have his stent replaced/removed or something.  So we will still be busy, but we will be home.  Mostly.  We might have to go to Birmingham for scans.  Figure all of that out later- we are not going to NYC for scans though this time.  Maybe for the next set.  If we choose not to do the treatment in Michigan and do natural therapies at home, then we will probably still go to NYC for scans every six months and see if we can do our scans in between closer to home.  NYC does more thorough bone marrow checks, so it is still important to check in with them.  Again, still sorting all of that out.  We have to continue doing three month scans for another two years.

Here is Clayton's model of his spine.  We would be removing one vertebrate- the one in the middle at the apex of the curve.  This surgery could give us an additional 30 degrees of correction!  That would bring his curve down to a 32 or so based off of our last X-rays.  Hopefully even more than that since we haven't had X-rays in a while.  That's 70+ degrees of correction in three months.  Rocks my world!

August 10, 2013

August 10, 2013

Its insane to think that someone so sweet can fill me with so much fear.  We've obviously had a rough week from which we are hopefully recovering.  Clayton's urine has gone from sweet tea colored to a more normal golden.  He has his new halo on and the vomiting spell was hopefully just a one time deal.  The last few nights I have lived and breathed by the numbers monitoring Clayton's oxygen.  He was only hooked up to it because I wanted him to be and was concerned.  Well, the last two night he has been hanging out between 90-94 when he should definitely be above 95.  He was also dropping to 88 from time to time.  My guess was that it had to do with two sedations this week and a lot of time laying down.  So today, I overcame my fear of the walker and put him in his new walker with the hope that his lungs would benefit from his getting up and moving.  One hand on it at all times of course.  This walker rides much smoother BTW.  Hoping for a quiet weekend...

August 9, 2013


5:30 a.m. and Clayton has been having episodes of nausea every 15 minutes or so for the last hour.  Not sure why.  Though it would be unusual for him, I am hoping it simply has something to do with his pain med wearing off.  Just gave him some Zophran; hope that helps. Please pray this little boy starts feeling better soon!

August 8, 2013

August 8, 2013

Clayton got a new halo today.  They used the same pin sites as before.  I hadn't had a chance to update on this, but since Mondays procedure, his urine had looked like sweet tea, but it finally started clearing up today.  We think it was just from old blood/debris in his bladder.  Either way, it is getting clearer and his labs looked good.  While getting his halo today, they also removed his nephrostomy tube.  One less attachment.  
God help me.  My heart just hurts.  I'm constantly scared this child is going to break my heart...and if he doesn't break it he is just going to scare me to death.  Why oh why do SO many things happen to him...

August 7, 2013

I had planned on updating tonight, but Clayton had an accident. I'll explain better later, but he fell, the pins holding the halo in place moved so we took the halo off and now we're waiting to see what the game plan will be in the morning... In the picture, you see the old pin sites and where they are now.  That happened to 7 out of 10 of his pins.  I 100% blame his walker for his fall.  I told orthodics before something was wrong with it and they checked it out, sent it back to me and told me they couldn't find anything wrong...bullshit.  If he somehow were to get another halo, he will not go back in that walker under any circumstances.  Always makes you feel like a failure when you can't prevent something like this.  Seriously, can't this kid catch a break!

August 5, 2013

Good News?

They got the stent in!  Hoping there are no more complications, in which case this buys us three months time before we have to do something about this stent...

12:00 pm

Just now took him back for procedure.  Please pray they can get stent in!

...there really is a lot riding on this.  If they can't get a stent in, then he has to have a nephrostomy tube through his back surgery and then shortly after his back surgery, he will need to have an additional and significant surgery to remove any obstruction in his ureter.  We would do that in Birmingham.  I just keep reminding myself, that other stent had to come out no matter what.  We had to face this.  The only thing we might could have done different was was to replace the old stent in the same procedure.  That was the docs call not mine.  So much is riding on this and this could mean more trauma for our family...waiting for answers sucks...
Please God let them successfully get in a stent and let it function properly.

August 5, 2013

Still waiting to do the procedure.  Things are running behind.

August 4, 2013

August 3, 2013

We are going to try and place a stent in Clayton's ureter Monday morning at 10:30.  The doctors are slightly worried about whether they will be able to since the contrast media did not appear to go down his ureter at all.  Please pray we will be able to place the stent without complications.  I'll update as soon as I know how it goes.