Friday, April 1, 2011

I just want to start off by saying that I don't hate clinic.  I was just so frustrated that day and needed to vent.  I think Dr. Lemons talked with them though because when we went in today we were taken right back into a room as soon as we walked in the door.  The staff was also really nice.  I was such a different person because of this.  The panic and anxiety feeling that I normally feel was hardly there.  I really appreciated the extra effort they took to make me feel comfortable and I'm grateful to Dr. Lemons for doing that for me.

We had two very exciting things happen for Skyler this week.  First off, Skyler finally was able to get a REAL bed!  He has had a hospital bed that's made for pressure sores since he has been home, so to finally be able to sleep in a regular bed is huge. Its been 7 months since he has been able to sleep in a real bed.  He was so excited.  The look on his face was priceless when he saw his bed for the first time.  He kept saying "This bed is the coolest, its so much better than the hospital bed!"  I was so happy for him.  This is one step closer to feeling "normal" again.  His one reservation about getting a new bed though was that it wouldn't have railings on it.  He has gotten used to having railings on his hospital beds, so to not have them scared him.  I was able to find some at Target to put on the new bed so that made him feel more comfortable.  The next morning after sleeping in his bed for the first time (he slept thru the night for the first time by the way) he said "Wow I really like this cool bed"  That put a smile on my face.

For the second exciting thing, Skyler doesn't have a feeding tube anymore!!  Yesterday for some reason his tube got clogged.  I tried everything but it would not unclog.  They told me to have him take the rest of his meds by mouth last night and then when we came to clinic today they would try to get in unclogged.  If they couldn't he would have to go down to flouro and get a new tube placed.  I knew they wouldn't be able to get it working because I had already tried everything, so I was certain he was getting a new one.  Skyler struggled taking all his meds by mouth last night, but eventually he got them all down and didn't throw them up.  He has a lot of them so I was really proud of him. Today when I told him that we had to go down to get a new tube he got really upset.  Of all the hard things he has to do, this one tops this list of the scariest.  He hates having the tape ripped off his face and also hates the tube going down his nose.  After a couple minutes he calmed down and said he had the "bestest" idea.  He told me that he promised that he would take every med by mouth everyday so they wouldn't have to put the tube in.  Normally I would have said no, but he was really excited about it and said he would be so proud of himself for doing it.  Since he has also been eating really well these last couple of weeks I'm not too concerned about him not being on feeds so I decided we could give it a shot.  We will try no tube at all this weekend and see how it goes.  We go back on Tuesday for more chemo so we will decide then whether or not he can keep it out.  I really hope he does well taking his meds my mouth and that he doesn't lose weight.  It would be amazing if he could keep this out for good.  It has also been 7 months since he hasn't had a feeding tube. This is also another big step for him to feel more normal.  He actually said that to me today after I pulled it out.  "I feel so normal now"  It was really cute and kind of sad at the same time.  He was so proud of himself today and so was the PA, nurses and especially momma.  They even gave him a shirt that says I'm Tubeless. Way to go Skyler!

Skyler has done well with this new phase so far.  I know its only been a couple of days, but so far he has only been nauseous and has had red cheeks.  For the first two days his cheeks were bright red and warm so I for sure thought we would end up in the ER with a fever, but so far so good.  He did receive his PEG shots today though and those usually make him really nauseous so we will see how he does.

Now for some sad news.  Heaven got a new angel last night.  Kim, one of the girls in our little cancer community passed away from relapsed AML Leukemia.  Even though I didn't know her personally, I could tell from just reading her blog how amazing she was.  My heart aches for her family.  Please pray for them.  Even though I know she is in a better place now free from pain, its still hard to take in. 

                                                                     Skyler's new bed!

This was right after I pulled the tube.  Doesn't he look so cute!  Its so weird for me to see him without it.

His shirt they gave him for being tubeless.  Well he still has his central line, but still no tubes in his nose...awesome!

Sorry the picture is so bad, its from my phone

Sportin his new shirt and no tube.  He really is so happy that he doesn't have it.

Sorry this is sideways I have no clue how to flip it, so I guess you have to flip your head


AmberLee Ellett said...

That video is so adorable. You can tell how proud and happy he is that he came up with the "bestest" idea!
He is right, he is SUPER STRONG!!!!
Continuing to send prayers your way.

laurie said...

I am so proud of you skyler. You are a true hero! You look amazing!
Crystal I want you to know what an amazing person you are! When Skyler went thru his first dose of chemo that is when we first learned how deadly and infection can be. A fungus in his sinuses was the first time we heard the words we'll know in two days if he will survive this. After that, infection became the more deadly thing to skyler, as infection took over his body,causing 5 organ system failures. As we saw the devistation infection can cause, you stood up to all, making sure that they took every precaution to keep everything clean. You have been critisized by many, eyes have rolled, you have asked drs nurses anesthesiologists techs family and friends to santize, were a mask. you have asked nurses to make sure his line is cleaned and sanitized extra well, made sure that the right does of heprin is used to lock his line.You have kept him as far away from coughing sneezing and sickness as you can. You have been asked why you think you need extra consideration. Wow! how can any mom take it. You are a true hero, a mother that would go to any cost and humiliation to protect and save her childs life. I admire your strength and courage, it takes true courage to do the things you do, and to ignore those who do not understand. And to question those who are educated. You are in every sense of the word a HERO! A mother who can recieve inspiration for her son, who knows him and what he needs and how his body reacts. Thank you for protecting him and for your courage!
I love you!

Macy said...

Crystal! I had the opportunity to attend General conference this morning in Salt Lake. I am not sure if you watched this morning's session but I thought of you and sweet Skyler during Elder Kent F. Richards talk. I started to cry and thought of your little boy when he told the story about the little girl in the ICU. he stated that every child in the ICU has many many angels watching over them. I know that each and every day angels are watching over you and Skyler! He is such a sweet, strong boy and you are an inspiration to many. Thank you for being willing to share your story on your blog. I look forward to your posts each day and pray for your sweet family!:)

Macy from BYU

Pianomusic821 - Kandice said...

Crystal you are Amazing and so is skyler, this video brought tears to my eyes, skyler is such a cute little boy. I just love how cute, sweet, and innocent he is. he is a fighter, and I know he is going to do great! I look forward to reading your blog, everyday. your blog helps me so much. everyone deserves the best treatment at the doctors office. so you venting on here is just a way for you to get it all out and to help you feel better, and to remember you experiences, because one day you are going to have this to look back on, both the good atnd the bad experiences that have happened. skylers blog is just amazing! and his story is so inspirational to me. thank you for sharing your story on this blog.

Brady said...

This is Amanda, not Brady

Tell Skyler That I Bet He Can Too! Cutest video ever! I giggled during the whole thing. Also, nice work on sleeping through the night. You are the coolest boy I know. :) NICE WORK SUPER SKYLER

ps, so glad clinic went better

Chelsea said...

I love how you can see all of his adorable face without the tube! What a brave boy to take all those meds! Way to go Sky!!! I LOVE the cool new bed!