Tuesday, June 28, 2011

Last night Skyler started the cleanse for his scopes today.  They had him on a constant drip of "poop juice" all night.  It was a fun night of getting up and running to the bathroom.  The endoscopy and colonoscopy werent scheduled until four this afternoon because we were an add on so I also had a very hungry grumpy boy on my hands.  Before the scope Skyler went and had an echo done.  Dr. Lemons informed me today that he heard a heart murmmer in Sky's heart so he wanted to check for any vegetation or infection.  I still havent heard back from that yet.  They werent too concerned because it can be normal to have murmmers once in awhile but they just wanted to make sure.  After that we were wheeled down to the O.R.  We havent been down there for awhile so it was weird taking that walk again.  Skyler has had so many procedures done that after awhile it just got routine for me, but today was much harder on both of us.  When he went through all of his surgeries he was too sick to even realize most of the time that he was going in for surgery.  So I was able to watch them wheel him back and not get too upset because he didnt really know what was coming.  Today as the anesthesiologist was walking him back he was screaming and crying for me.  I had to watch them walk down the hall as he was holding his arms out for me and screaming "I want my mommy"  I got a call in the waiting room though saying he did well and fell asleep in the anesthesiologists lap.  But who knows, they may say that to every parent to try and console them.  It worked though and I felt a little better about it.  Along with the two scopes they did a bone marrow biopsy as well just to make sure we arent dealing with a relapse here.  I got good news from both.  So far his bone marrow looks free of cancerous cells.  Its just preliminary though, they still have to look at it closer and do cultures.  Also the GI doc said everything looked great.  No signs of infection.  They did take some biopsies though so we wont here back from that for a couple days. 

So basically we are back at not knowing.  We did rule some things out  though so thats good.  I have a feeling we may be looking at fungus again.  We have a couple things we are going to try next.  One is (im not sure of the name) but they tag some white cells and look and see where they go to and light up in his body.  They will go to the places of infection.  The problem with this is that it may light up so many places in Skylers body because of old infection that it really wont be conclusive.  Its worth a shot though.  I really want to see where they end up in his liver.  I really think thats where the fungus is hiding.  Another thing is to stop all antibiotics and then draw cultures.  It may be that all the antibiotics are suppressing an infection so we cant detect it while he is on them.  So while he is in the hospital they can monitor him after they take him completely off in case he gets too sick.  One more possibility is adding on another antifungal med and see how he does.  I will know more tomorrow when I talk to the infectious disease docs again.

Last night I was feeling really down and upset about things but as I sat and read other blogs I realized how lucky I actually am.  There have too many of our cancer friends that have lost their lives to this horrible disease.  Not even just cancer, there are so many other diseases that are taking these innocent childrens lives.  Even though we are still going through some hard things, Skyler is still here.  I can still hold him and kiss and hug him.  At one point I was told that wasnt going to be the case but he survived, I still have my little boy here and thats all that matters.  We are very blessed!

He gets really attached to his teddy bears now.  He got one from another cancer friend also named Skyler, and then I got him this new one.  Their names are Teddy and Max and he loves sleeping with them.

Here he is getting the echo of his heart done.  He hated it, you can see him crying in this picture.

This is actually a part of his liver.  All those tiny white spots are not supposed to be there.  They are scarring and calcified spots of where the fungus used to be.  Im praying so hard that none of those are active.

This is down in the operating room waiting to talk to the anesthesiologist and to take him back.  He got really scared at this point.

This is the hall I watched them take him down screaming for me.  That has got to be one of the worst feelings for a parent.

Just starting to wake up in post op

He woke up screaming for a menu so he could order something to eat.  Poor kid was so hungry.  He was able to get a root beer slushy to help.

And of course a post op cheeseburger.  He downed that thing like there was no tomorrow!  You can see in this picture that he doesnt have a feeding tube anymore.  During extabation it got pulled out of his tummy and was sitting in his mouth when I was able to go back.  He wouldnt let the nurse touch it he just wanted mommy to fix it.  So I quickly pulled it out the rest of the way.  It was so funny because right when I got back there that was the first thing I saw and immediately pulled it out before the nurse had a chance to explain.  She gave me the funniest look because she wasnt expecting me to just do it.  I guess Im just too used to this stuff.


Schmitt Family said...

Crystal, know that we love you guys! I don't think you guys will ever know what strong examples you are to so many. You reached out to us during your own very difficult time. We will never forget the love we felt from you! We will never have all the answers we want in this life, but I truly know that we are only strengthened by our challenges. You and Skyler have been through so much, more than most of us could even dream of, but just know that much strength is gained as we all watch you! We are all better because we know you! We love you!

cjmom said...

I love it that he was hollering for a menu! That is so great. What a strong brave child you have.

Erin said...

Nolan's recent endoscopy was also very late in the afternoon - definitely not fair for a little guy. That's very good news about the preliminary results from the tests!

Skyler is such a champ. You must be so proud of him. We continue to pray for some answers for you.


Susi said...

awe Crystal....couldn't hold back tears after reading this post. Much love and hugs! He is so amazing... I love the cheeseburger photo ;)

Anonymous said...

Hey...I'm so sorry you guys are having such a rough go of it right now. Keep your head up and know that everyone is praying for you guys. I think it's great that he was so hungry and wanting to eat a cheeseburger. A healthy appetite is a good sign in my mind.

Cousin Dayna said...

The prep for colonoscopies and endos is the worst! I know just how grouchy you can get, and how hungry you are afterwards. Last time I had one (a few months ago), I had my mother take me afterwards to a custard stand for the richest, thickest chocolate malt I could find. I didn't even care that it was 2,000+ calories. All you want is something comforting. I hope that they figure out what is going on with Skyler, and that he won't have to put up with so many tests.

Plain Jame said...

The things they ruled out were scary so thats great news there. It's OK to feel down, but whats so amazing is how quick you are to see your blessings. Love you guys!

lea said...

He is SO CUTE! I love the pictue of him slurping onhis slushie...he has such big beautiful eyes!

Way to stay positive...you are an inspiration!