Wednesday, December 21, 2011

Out of the hospital after a really long week.

I don't even know where to start!...so yesterday Cashy went in for radiation treatment number 13 around 8:30 am. After treatment he was transferred to another floor where they were to place a picc line in his arm because he no longer has iv acess after having to remove his port due to the infection, staph infection that is. Well they tried for almost 2 hours to place a picc line, they tried his right arm and his right leg? Ya his leg right behind his knee, need i mention that he is still in diapers and iv acess behind you knee is only asking for another infection, well they were unable to get one placed. I had a minor meltdown and cried and threw a fit. In salt lake city they placed three picc lines on him and three broviac lines as well, never any trouble. I guess he has some scar tissue built up from those previous lines.
So we were sent back up to our room after recovery and Cashy took a little nap and then was up a feeling good and being silly. I ran over to the Ronald McDonald house to wash his blankies and "ball" pants. To our surprise we had some beautiful flowers from my mom in the room and tons and tons of toys "Santa" brought. Holy cow, there are enough toys in our little room to last three christmas's. So cool, Colten was really excited! He got a cool vtech cAmera that he's been taking pictures with nonstop!
Cashy ate pretty well last night, the best He has in a week. So after hanging with the boys together in the room, daddy took Colten back to the Ronald and Cashy ended up falling asleep around 9pm.
Around 930 thy moved a baby into the area next to us and as I'm listening to the nurse review all their standard questions upon admission, the mom tells the nurse that she had been sick for the last few days and the baby has been as well with what her dr told her was the flu and a cold, and that she had been vomiting alot lately. Then the baby vomits. I run out to the nurse and mention that I just heard her say she and the baby had been sick and that I didn't want my baby who was just getting over a staph infection and has low immunity. Last thing I need is Cashy to get the flu. I go to the charge nurse and complain and i got flashed a whole lot of rudeness and she told me she couldn't talk to me about that pt because of hippa, ok---I want mg baby moved or her moved out. She said they had no where else to put her and that we would have to deal with it, and that she needed to talk to dr to figure out what to do. I told her I wanted to talk to a supervisor and she refused to let me and said she had to follow a chain of command. So I call mike in a tissy all upset and hd says he is comic over. I take cash out of the room hooked up to his iv still and go and sit in the parent coffee room, I am not having my baby be exposed to the flu virus. So Mike arrives and starts complaining o the charge nurse that we don't feel our son is safe and he wanted to talk to a director or a supervisor, right now. She refused to give mike the directors name or number, and he ended up getting it from the secretary. They send up a supervisor after an hour of sitting in the coffee room and we gave her our list of complaints from the entire week in hell. So an hour and a half later we are moved to another room. In the process Cashys iv in his wrist come out and we lose it. Now he needs another iv. Crap. So at midnight after just getting Cashy to sleep they make us go to the procedure room and try to place a new iv, and for a visual every one of his veins in both arms are poked the shit out of, bruises everywhere. The nurse misses. After holding Cashy down screaming for 15 minutes while she dug around with a needle. Nurses out there---if you try and put a iv in and you don't get it right off, fishing around for it isn't going to work. It's only torture. So I said no more they can do it in am. So at 1 oclock after Just going to sleep again they come in to the room and say they are going to try again with another nurse! Seriously. Same thing, screaming, holding down and pure torture. No iv. Fuck. So we go back to sleep again, I kid you not at 530 they came back in and put an iv in his foot. Least the guy got it though. My poor little baby. He is seriously the strongest little person ever. He puts up with so much. It breaks my heart.
So at 8 o'clock this am we go down for radiation treatment number 14!! Yay almost half way!! This time they planned on placing the picc line in his left arm. Once again after two hours of trying they were unable to get it in. :( fuck. I was so upset. at least they changed his dressing in his chest while he was still sedated. Thank god. There is a picture below of Cashys radiation mask that they put over his tiny little face. Ugh it's heartbreaking to see.
So back up to the oncology floor about 12. Doctors rounded at 1 and decided they would discharge him with the iv in his foot and leave it in for thursday and Fridays treatment and take it out after on Friday. Yay, I was so relieved!! Cashys exhausted, mike and I are exhausted, we needed out of there. So they switched his iv antibiotics to oral ones and loaded us up with Supplied for the iv and his dressing changes this weekend. We arrived back at the Ronald McDonald house around 6 this evening.
Cashy just passed put on daddy's chest after playing with all the new toys in the room. He is worn out and exhausted.
Colty and I are lounging in the tv room watching nick at night! Sorry for the super long update but a whole lot went on in the last two days.
If everyone could keep Cashy in your prayers while we continue through treatments. He needs to keep his strength so he can get through this and move on to the next step.
I'm pooped out! Goodnight all and merry Christmas. Thanks for everyones support and love! Bless you all!

8 comments:

  1. hello cashy my name is cash well my last name is but every body calls me cash and has for the last five years. i am a 46 year old man who also has servived cancer my heart go to you little man, keep up the fight you can win i know i am beating cancer back, so when i see or read story's like yours i sit and i cry because i know what is like to live with something you dont deserve and you little man you are ment for something much bigger in this life.and i pray for you and your famliy.much love go's to and your famliy, i wish you the merry'est christmas and a much much better year stay strong little man god bless, your friend now and forever.....CASH.....

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  2. No need to apologize for the update- We are HONORED THAT YOU SHARE ALL THE DETAILS! Cashy's battle reminds us how brave you all are keeps his battle on our minds and in our prayers! We are here because we love him too and worry about his progress- please continue to KEEP US INFORMED! Thank God you got to get out of there- Thank God Cashy was able to get his mind off all the pain! Here's to as Merry of a Christmas as one can possibly have! Muuuah! Faith- Hope & Love

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  3. NEVER APOLOGIZE sweetie. You guys are being put through hell right now and it is so not fair. It makes me smile that the boys had so many gifts and you ALL were able to leave the hospital. Always thinking of you guys and I am always here for you and Mike!

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  4. My heart goes out to you, may the lord bless and keep you all.
    Know that the lord and we all are with you, with love and positivity.
    This too shall pass and Cashy your the strongest little man I've ever and the honor to know, hang tuff champ!

    Love to you all
    ❤❤❤❤❤❤❤

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  5. No worries Kallie, never need to apologise to us. Remember we are here reading because we CHOOSE to. You and little Cashy don't get this luxury.

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  6. You are such a brave little soldier cashy I admire you for staying so strong. I too am going through a battle.of my own, and hearing about what ur going through gives me hope. Keep ur head up buddy and don't give up the fight. I will keep u in my thoughts and prayers. Love ur friend Cheryl

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  7. I remember when my daughter was in the NICU at Seattle Children's Hospital and I overheard our night nurse mention to another nurse that she was sick and shouldn't be there. I literally thought my heart had stopped beating; I was so mad! I also jumped from my chair and went straight to the charge nurse. I made sure that not only was that nurse removed from my daughter's care but SENT HOME. As Mom's we do not need any extra risks in this already so scary, so risky journey. I am so happy to hear Cashy is back with our friend Ronald and family. Prayers for continued strength through the next treatments!

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  8. P.S. I just wanted you to know that that was THE ONLY negative experience we ever had at Seattle Children's during our 8 week stay. We love that hospital, their doctors, and nurses. It is an awesome, amazing place!

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