Thursday, June 23, 2011

The last time I posted they were pretty sure Skyler just had C-Diff but it turns out that wasnt the case.  In fact every test they ran came back negative.  This last week he has still been having really high fevers, vomiting alot, diarrhea, and his legs, feet, eyes and arm have been really puffy.  He also hasnt been himself.  He has been sleeping most of the day away and when he is awake he just has a very sad and sick look on his face.  We spent most days last week up at clinic and in the ER getting cultures, CT scans, ultrasounds and other testing done.  Every single one of them came back negative, but clinically he has been getting worse.  Tuesday night his fever got the highest it has been and I wasnt comfortable keeping him at home or going into the ER, Dr. Lemons felt the same way so they admitted him for observation.  Yesterday morning I had to make that hard and dreaded decision of doing a full body CT scan with contrast.  The reason I hate using contrast so much is that it is filtered through the kidneys and could possibly harm them.  The last time I let them give him contrast he ended up in the PICU again for a long time on dialysis.  You can see my concern about letting them give it to him again.  I know he is in a different spot now, he isnt in renal failure anymore but no one knows how much reserve he has.  I told myself I wasnt going to let this happen unless it was the only other option.  I felt like I was in that spot yesterday.  They had done every other test imaginable first with no answers and he was getting worse.  So with a very worried, panicked and heavy heart I agreed to it.  They wanted to give him oral contrast as well as IV contrast because they wanted to see in his gut since he was been throwing up so much and having so much diarrhea.  They ended up placing a feeding tube so they could drip it in slowly over three hours.  Out of all the scary things Skyler has to do, getting a feeding tube is the worst for him, he is terrified of this.  Just as I anticipated it took three other nurses along with me holding him down.  It broke my heart.  Once it was in however, he didnt want it taken out so I decided to have them run feeds for extra nourishment because he has been throwing up so much.  Last night he actually said to me "Mom I think it was a good idea to put the feeding tube in, now I dont have to worry about taking my medicines all day and I can just sleep instead.  And its not so bad now."  Some of the things he says to me makes me sad because he has had to grow up way too fast.

We got good and bad news from the scan.  Good news is that they didnt find any new infection.  It did show that his liver and kidneys are still very abnormal and are still engulfed with calcified spots where the fungus used to be.  They actually are only 80% sure that they are inactive calcified spots instead of active infection because there is no way to tell for sure, but they are unchanged from his last scan so thats good. They will probably remain this way for the rest of his life.  Also no fungus has grown in his blood so thats reassuring.

Bad news is we still have no clue whats making Skyler so sick.  His CRP (infection number) white count and ANC are all elevated suggesting infection but we still dont have a source.  It seems like our last admission all over again but this time instead of just having fevers he is acting very sick.  We dont know if these two are related or if we are taking about two separate "mysterious" infections altogether.  Its so hard and frustrating not knowing what is going on.  One good thing that has come of it though is we have had to run alot of fluids and he has been able to tolerate them well.  He still is puffy in places but nothing really new.  Also his kidney levels all came back normal this morning, so as of now the contrast hasnt given his kidneys a hit!  I am so relieved.

So are plans are really uncertain.  We are going to monitor him for at least another night and see how he does.  He also has a few tests that are pending right now so we are waiting to hear back on those.  He is now really behind on his chemo which really scares me so hopefully we can get him feeling better so we can hit his body hard with chemo (thats just how it goes, just as his body starts to recover they pump him full of more toxic poison)

Oh also his heart rate last night kept dropping down really low so they are just about to do an EKG now.  I will let you know how that goes.  Im sorry I havent posted as to what has been going on sooner I have just been completely exhausted mentally, emotionally and physically.  In the midst of everything that has been happening, Skyler and I moved into a home of our own on Saturday.  It seems like I have been running around like a chicken with my head cut of lately.  I have had so many things that I had to get done but at the same time making sure Skyler stayed safe and comfortable.  He actually really loves our new home and ever since we have been at the hospital he keeps telling me he wants to go back to his home.  Im so glad he loves it there.  Thank you all for the continued thoughts and prayers!


Jessica Cook said...

My thoughts and prayers are with you and my little hero Skyler. You are an amazing team! Fight little big guy!!

Erin said...

We were praying so hard for it to be C diff, and have been so worried about Skyler. Great news that his kidneys are doing well with the contrast. What a tough decision to make. We continue to pray for the doctors to figure out what is going on in Skyler's little body, and for Skyler to continue to show his strength by fighting it.

And congratulations on your new home.


Kristin said...

Thank you for taking the time to update Crystal, I know it is hard to fit in. I've been thinking about you guys all day. I'm so dang sorry he has yet another hurdle, little Skyler has had nothing but hurdles to overcome and it just isn't fair. Try to stay strong, as you always do, you are amazing and Skyler couldn't ask for a better mother.

Anonymous said...

Crystal, I can't tell you the sigh of releif when I saw your new post, Thank you so very much for letting know all that you have been going thru this last week. Sweet sweet skyler,, you brave boy, keep fighting my little boy wants to play some soccer with you. Crystal, I wish there was somthing I could do to help, Please lord bless these two beautiful spirits and help skyler to feel better really soon.

zach's mom..

Sonja said...

Reading this post, I am just overwhelmed for the both of you and I don't even know you. This is so much to have to deal with. I hope and pray that he feels better very soon. What a sweet, brave little boy. You both give me courage!

Anonymous said...

This just sucks!!!! you guys just can't catch a break..
Poor little Big man and you to crystal... You both are so strong. I keep you both in my prayers always

susi and adam said...

My heart just aches for you so incredibly hard this must be to watch Skyler go through this and suffer so much. I truly truly hope and PRAY that you guys will be strengthened once again and that angels will be there to bear you guys up through this challenging time yet again. You are the strongest mom I know !!! Susanne