Tuesday, January 3, 2012

We headed up to Primary's today for our fun monthly clinic appointment and LP.  I cant believe how fast these months go.  Everything went really well today and we were in and out pretty quickly. They had his Vincristine ready for him when we got there so we didn't have to come back up to clinic when he woke up from his back poke.  We found out his ANC is way too high so they upped his dose of his oral methotrexate at home.  With this last infection he was off all oral chemo for a couple weeks but he was able to go back on them a couple weeks ago.  Ever since he has been back on them he has been really nauseous.  You forget what this poison does to their bodies when they take it everyday, but it was a huge difference in how he felt when he didn't have that horrible stuff in his body.  I'm hoping that this new dose wont make him any sicker but we need that ANC to go down so we know its keeping those bad guys away. 

Lately Skyler loves to take a stuffed animal with him when he gets his back poke so he doesn't get scared, but when we got to the hospital we realized we left it at home.  The child life specialist was able to find him this polar bear though so he had something to comfort him downstairs.  He LOVED it and was so happy.  I was so grateful she did that for him.

Chemo and Xbox...what more could you ask for?

We are actually both getting used to this new line.  The dressing changes don't hurt him as much and its only a single lumen so its quicker to take care of everyday.  He likes flushing and hep-locking it for me lately.

When we were down in RTU waiting to go back, the wound nurse came and looked at his chest site.  The hole is healing nicely and she actually told me I can stop packing it now and just put a new bandage on every other day.  I have been having to stick some gauze like stuff into the hole in his chest everyday so the skin on top doesn't heal before the hole closes.  The girl sitting next to him is another child life specialist.  She is one of our angels.  Still after almost a year and a half Skyler will not talk to anyone at the hospital.  Most of the time he wont even acknowledge anyone is in the room or talking to him, but the last couple of times in RTU Skyler actually has been talking, laughing and playing with her!  It seriously is a miracle and it brought me to tears seeing him actually talking and playing with someone besides me at the hospital. 

This is another one of our angels, Robert.  He is one of the most caring docs I have ever met.  He truly cares about each one of his patients and goes above and beyond.  He has taken such good care of Skyler and even me.  I found out recently that he is leaving and I am so sad.  We will miss him so much!  He came to say goodbye to Skyler today and gave him a handful of gold dollar coins.  He wasn't even supposed to see Sky today but he came to find us downstairs to say goodbye.  This was after Skyler starting talking to the child life specialist so I was already emotional and started tearing up even more.  We will sure miss him.

This is back after he got the sleepy medicine.  The doctor is cleaning and prepping his back for the poke.

Sticking the needle in...

.              This is her taking out some of his spinal fluid.

And then replacing it with chemo.  I'm surprised these pictures aren't hard to look at.  Seeing stuff jabbed into my son has become a normal thing now a days.  Actually, this looks alot nicer than some of the things I have seen done to him. 

                   All finished and putting a band aid on. 

He woke up so fast today!  I hardly even had to wait in the hall at all and when she came to get me he was already totally awake and wanting crackers.  He loves the hospital crackers and asks for them every time.


Susi said...

Awe that sweet boy.....sorry you have to deal with this crystal but I'm so glad skyler has been doing so well... Keeping you guys in my thoughts and prayers. Hugs!

We are the Mogles said...

Go Skyler! He is a super hero. Always praying for our buddies!

Anonymous said...

Skyler is such a stud! I was thinking about him this week and was curious to how he was doing. Gee that kid is getting so big! Way to go Sky (and Crys)! You guys are awesome!