Thursday, November 24, 2011

Happy Thanksgiving everyone!  I have so much to be grateful for this year,  but the one thing that I am grateful for the most is that I was able to spend this Thanksgiving at home with Skyler.  I cant help but think back to where we were a year ago today, sitting in the PICU hoping that my baby would get better.  This year he is walking, talking, running around and playing, and even able to eat Thanksgiving dinner with us.  We are so blessed! 

                This is how Skyler celebrated Thanksgiving last year

Today I am also grateful that Skyler's surgery yesterday went well.  It took about an hour and the surgeon said he was able to place it in the same vein his old line was in, which is good.  Skyler and I were both pretty nervous about the whole thing but I was doing better than I thought I was going to be up until I had to say goodbye to him.  No matter how many times you do it, it never gets easier watching your child being taken away in the arms of someone else while he is crying out for his mommy to save him.  It feels like a swift kick in the gut and heart every time.  It hurt worse when he told me later that when they took him back to the room to give him his sleepy medicine he was calling me to come help him but I never came.  Talk about heart wrenching.

When he started waking up in the recovery room he was in so much pain.  I have never seen him in that much pain after a surgery before.  The nurse had to keep giving him more and more doses of pain meds but it only took the edge off, he was still hurting so bad.  We actually had to be moved to another part of the unit for a couple more hours because he was still in too much pain and  he wouldn't drink so they didn't wanting me taking him home yet.  The nurse finally got a one time order of a stronger pain med and that seemed to calm him down more.  Also, if you remember from the beginning of diagnosis Skyler has a bad reaction to EKG patches.  He gets such severe burns from them that they listed them as an allergy so he wouldn't get those put on him again.  Its in his chart and on his bracelet every time, and I also told this to the anesthesiologist before surgery so she wouldn't use them.  I told her he does great with the infant leads so that's what she needed to use.  You can imagine the anger I felt when I saw two burns on his back from the EKG patches when he woke up.  She was trying to place the blame elsewhere but the truth is she just spaced it and made a mistake.  I was fuming inside but wasn't able to show just how angry I was because Skyler needed me to be there for him.  Luckily the wound team knows him really well and they were able to come and get a script for the cream that worked last time on the burns.  I have been slathering that stuff on so thankfully they haven't gotten too bad yet.

I don't know why, but I really wasn't expecting him to be in that much pain afterwards.  I thought it would be much easier, so I promised him that we could go to Texas Roadhouse for dinner that night.  But after seeing how miserable he was and that his bandages were still soaking through with blood I for sure thought he would have forgotten about it or want to go when he felt better in a couple of days.  I was so wrong.  We were able to leave the hospital at four and we went directly to Texas Roadhouse and met my parents and Ty for dinner.  He was in so much pain but wanted to go so bad that he said he was fine, even though I knew he wasn't.  It just shows how tough this kid is.  The last thing on earth I would be up to doing after surgery is going out to eat, but nothing can keep this kid down.  He is my hero and such an inspiration to me.  On the way home I was so exhausted and had the biggest headache and was about to start complaining, but I just had to take one look at Skyler and that shut me right up.  I still learn valuable lessons from him everyday.

I have been keeping up on the oxycodone every six hours and today he seems like he is doing much better.  It's actually alot less bruised looking today than they told me it was going to be so that's really good.  He also told me today that he is so glad he has a port now.  I pray the sites will heal up nicely and that he will be able to take a nice long bath (without Saran wrap) in one week!

Still trying to wake up

He was so sad and in so much pain here.  He had huge crocodile tears.

This was after that final big dose of pain medicine when he was actually able to calm down.  He didn't want his usual slushy and crackers, he wanted a candy cane.  You can see that there are steri strips on his neck where they made an incision and some on his chest right where they placed the port.  That square bandage is from where they took out his line and its already saturated in blood.  They had to place a bigger bandage over it but it still kept bleeding through that.  It finally stopped bleeding all the way when we got home from dinner.

This is when they took him to the other part of the unit to recover.

Finally ready to go home, but still not feeling great.  The stuffed animal is a kangaroo that he got from a sweet friend from Australia.  The reason he brought it with him is because it has boxing gloves on and he said it could punch all the bad guys away and his cancer.  We also made each other little paper hearts that said I love you and I'm here with you and gave them to each other to bring with us.  He put his in his kangaroos pouch and I kept mine in my pocket.  That way when they had to take him back to give him the sleepy medicine he could hug his kangaroo and pretend it was me giving him a hug.  He told me that when he was screaming for me to come and I didn't he hugged his kangaroo and it helped a little.

Thank you so much for all the prayers.  I hope you had a wonderful Thanksgiving!!


Anonymous said...

The second pic is heartbreaking. Hope he's doing better by now. Whatta cute little trooper u have Crystal! =)

Tonya said...

So happy that surgery went well. Will pray that Skyler has a speedy recovery.

Chelsie said...

He's such a strong kid. I hope the port works out well for you guys. I can't believe how much meat he has on his bones! He just looks so dang good, Crystal.

Happy Thanksgiving!

Eisha said...

O- I am so happy he likes the kangaroo! I hope he gets better soon!
love the swintons