Wednesday, March 9, 2011

Today's clinic visit was stressful to say the least.  Skyler had to go in and get two more PEG shots and they also had to replace his feeding tube.  For at least a week Skyler has been throwing up all his meds.  He has an NJ which is placed in his intestines instead of into his stomach, so if it is in the right spot he shouldnt be throwing his meds up.  It got to the point where I was afraid he wasnt getting all of the medicine in him he needs, especially his antibiotics, so I called them to order an X-Ray along with getting the PEG today.

Skyler did really well and was so brave up until he saw the needles.  I had to have someone help me hold him down, man this kid is strong.  They have to give the shots in both legs so they had two nurses come in so they could just to it all at once, but one of the nurses didnt know how to count and it through them both off poor little guy.  He was sad for about five minutes after, but was his normal happy self again once we got him some cookies.  They had to watch him for an hour after to make sure he didnt have an allergic reaction to the chemo.  When we were finished we headed downstairs to flouro to get a new tube.

I had them skip the X-Ray and just send us to flouro for a new tube because I was positive it was in the wrong spot. Skyler is terrified of this room because he knows that this where they to put a new tubes in, he hates this!  He started crying again as soon as he saw that table.  The other kids in the waiting room waiting for their turn were probably scared to death out there, because I'm sure it sounded like Sky was being tortured.  I dont think I have ever heard him scream that loud before.  The dang doctor didnt make things any easier though.  I swear he should never be allowed to work with kids.  Skyler is very protective of his lines and tubes so once the doctor had it in and was checking placement Skyler was screaming "You are holding it wrong!"  The doctor then said in a very rude voice "I think I know what I am doing Skyler"  He also said "You need to stop screaming like that right now" like he was scolding his own child.  If you are going to be working with little kids you have to understand that they are terrified and a normal reaction is to scream and try to make it stop.  They also need to leave the parenting to parents.  I was fuming inside, I seriously wanted to bust out some ninja moves (haha childish I know) 

By the time we were done Skyler was pooped and was so ready to go home.  He was asleep before I even started driving.  I feel bad he had to do two scary things today.  Hopefully our next clinic visit will be alot easier.  Im sure it will because chemo through his line is a piece of cake for him now.  Now for some good news, Skyler has been walking so much better these last couple of days.  His legs seem stronger and he doesnt seem like he is in so much pain.  It was definitely the Vincristine that was doing it to him and Im glad they cut the dose in half to give him a little break.  

 Skyler happy on his way to clinic even though he was scared for his pokes

Getting his blood pressure taken.  He looks so big to me.

He hates when they feel his tummy.  Its still tender when they feel his liver.

The nurses making sure they are giving the right chemo to the right patient.  The nurse on the right is one of my favorites.  She also works on ICS so she knows Skyler and all that he has been through.

This is right after the shots. They gave him warm packs to put on his ouchies.  He wasnt too happy.

They do actually have the beads of courage at PCMC so we were able to get his other ones today.  This made him happy and also took his mind off of his legs hurting.

He was happy he could pick them out himself.

Here is a picture of Skylers morning meds.  He was throwing all of these up everyday.  This is why I was so concerned about it.  He needs each and everyone of these to help keep him as healthy as possible.

Waiting in Flouro to get a new tube placed.  You can tell he wasnt very excited about it.

They have all of the supplies waiting there when you walk in.  This always scares Skyler.

You cant see it very well but this is the X-Ray of his tummy.  It is definitely in the wrong spot.

Its always weird for me to see him without anything attached to his face because it has been so long since he has been tube free.  What a handsome little guy!

Love you Skyler, you did so well today.  Mommy is proud of you!


Anonymous said...

Crystal you definitely deserve mom of the year award! Skyler is so very lucky to have such a sweet, caring, and strong mother. Keep fighting Super Skyler! You are in my prayers:)

suzie said...

DANG DOCTOR!!!! Makes me mad!! :-/ ur right, don't choose to wrk with little kids that are so pure and innocent at heart and are suffering from such a "disgusting" disease and having to endure sooooooooooooooooo much day in and day out....its bad enough on a an adult....but for a little kid......WAAAAAY WORSE!!!!!.......he has a sensitivity chip missing....he needs a slap to wake him up bck to reality and and have some compassion for what these little warriors are going through and handle em with love and care! Ur right in all ur feelings and wmotions. U have the cutest boy.....his big brown eyes just tear my heart out! My kids love him..and don't even know him. My little boy Braxton wted me to tell u that he said hi from AZ. Thanks again for letting us get to know ur super sky! Go skyler go! Ur a fantastic mom crystal.


Anonymous said...

That picture of Skyler after he got his shots just breaks my heart. Skyler is so brave. Again, you and your family are never far from our thoughts and always included in our prayers.

Anonymous said...

I don't know how you do it. Those pictures are gut wrenching. Poor little guy! You are a great mom, never forget it.

Briana said...

skyler is so brave!

that doctor is making my blood boil! SERIOUSLY! why the heck is working at a children's hospital?? unbelievable! i'm so sorry you guys had to deal with him! i hope things go better next time.

Anonymous said...

I am so sorry that you had such a horrible experience, he is such a brave little boy,, my heart breaks for him, stay strong little one!!

(the last picture, he is just so beautiful)

zach's mom

Amanda said...

I am having an emotional day today and reading this post made be realize how silly I am being. Skyler you amaze me. I can't believe how much I love you and I haven't even met you or your mama yet. Stay strong little man, you are the bravest guy I know.
Giant Hugs to you both!