Tuesday, April 26, 2011

Day 20 - I've had enough!

Day 20: Nicknames!
Oh my gosh I've had so many!!!
nickster - this was my very first nickname given to me by Colleen. I received a card from her when I was in 5th grade in the hospital at PSL in Denver.... the nickname has stuck - 9 years later!!!!
nickle, nik, NJ, Johnson, Pea, Niks, Nick-nack..... These are off the top of my head... And thankfully a lot of them have retired ;-)

Now off to my nest topic of the day... I've had enough - of SO many things. But today what is on my mind, is........

Spencer's health vs. The doctors

(His Primary CF doc is left out of these statements! - She's amazing and we have nothing bad to say about her!!!!)

I am so tired of whenever Spence is in the hospital the doctors seeming to go against him. What got me started on this little rant is about 15 minutes ago the PA and a doctor came in and informed us that, "So Spencer you'll be going down to rehab in a wheelchair today with someone taking you down since you didn't go yesterday."
UHM, Excuse us?!
This instantly made me angry. Spencer was VERY nauseous yesterday and threw up 3 times, while trying his best not to lose it many other times. (and he actually lost all contents of his stomach about 15 min before going down to rehab!!) Yet he did EVERY SINGLE vest treatment and he DID go down to rehab. He sure the heck didn't want to, but he pushed down there, his bucket and all in case he threw up on the way, and made it down. The rehab people specifically told him that he should go back to his room because he was throwing up. He did that and nearly lost it a couple times on the way back.

Honestly - I am VERY proud of Spencer for pushing through that nausea yesterday! That is something he never would have done a year or two ago. He would have refused his VEST and he never would have went down to exercise. But Spencer has changed. A lot. This boy wants to live. He wants every single day he can get. I can see it, nurses can see it, family see it, his amazing doctor can see it..... So why, every single time we're in this hospital does it seem like he's battling the doctors and why does it seem that anything he does is good enough for them?!? I'm fed up!!!

They were claiming that just going down there to rehab yesterday wasn't enough, he actually had to do something. Well excuse me? Do you expect him to pedal the bike while throwing up with 5 other people in the room... Uhmm I wouldn't want to. Isn't it enough that he tried? I know Spencer has had a bad reputation with rehab in the past, skipping, forgetting, not going.. but he has not missed a single rehab session this stay.... He's been 100% compliant with his treatments, therapies, rehab, and the like. Why can they not put aside the past and focus on Spencer in the NOW and what he is capable of. Spencer made the comment that he was VERY discouraged because it always seems like the doctors are coming in and telling him something that he "could" have done better. To me, this isn't the way it should be.

The poor boy doesn't have the support of nearly as many people as he should, and he can't even get it from his own care team? (the majority of them DO support him... but there are some that while we are in the hospital that we honestly feel almost working against us)

I hate seeing the doctors come in here and basically criticize him for something that he can evidently do better. Can't we ALL do better? Spencer's come a long ways and he's really taking huuuge strides to FIGHT and BEAT cystic fibrosis. He needs the help, encouragement, and support of a lot of people.

It's not too late to change, and he's doing it right now - I just hope people will realize this soon... very soon.

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