Monday, June 6, 2011

Just as we had anticipated Skyler didnt make counts today.  However his ANC did come up a little to .2 instead of 0.  Its still extremely low but its headed in the right direction.  His platelet count is 39 which is alot better than 9 so thats headed in the right direction as well.  We will do more labs on Wednesday and hopefully they will be high enough to get admitted the following day.

Last night I had to change Skyler's central line dressing.  He absolutely hates this.  I change it about every 4 to 5 days and its something I dread because its so painful for him.  I hate being the one that causes the pain but Im glad I can do it at home. To hold the line in place there are two stitches holding it to his skin.  Both of these stitches have come out though so the only thing holding the line in is a cuff up in his neck.  The line tunnels up through his neck and directly into his heart.  Even though I am so used to doing this, its always a little nerve racking because I have to keep everything sterile so it doesnt get infected.  With a little distraction from uncle Ty though Skyler did really well this time. 

         Skylers central line is actually a dialysis catheter.  Usually oncology patients have a port which is placed under their skin.  And then to access it they have to poke a needle in and attach the tubing to it.  Skyler had one placed right after he was diagnosed but it ended up being pulled due to the fungal infection.  You can see the scar from it on the right side of his chest.  When Skyler was on dialysis for renal failure they had to replace the dialysis catheter 5 different times in many different places.  This line now is the last one he had.  They didnt want to pull it because it was a working line and they didnt want him to have to go through another surgery.  All together Skyler has had 15 lines placed.  Those are not including the many differet tubing going into his chest, belly, mouth, nose ect.

This is the part where I have to scrub the site with alcohol.  You can tell by the look on his face this is not his favorite part.  He is usually screaming right about now though so he did great.

This is the finished product.  You can kind of see where the line tunnels up through his neck.  It feels really weird when I touch it because you can totally feel it.  Whenever I flush his line he can actually feel it going up through his neck.  So weird.  I think it would really freak me out feeling that but not Skyler, he is the bravest kid I know.


Brandi said...

Skyler is such a brave little boy. You are a great mom. You make a good team. Thinking of you both every day. Let me know if there is anything I can do.

Jami N. said...

So, Crystal...are you ready for nursing school? You would breeze through! ;-) Hoping I will get to see you two on his Methotrexate admit. I will be in the PICU on Thursday but maybe ICS on Friday.

Susi said...

He is the bravest boy I know!!!!! I'll keep praying for him.