Thursday, June 17, 2010

Wishing to go home....

These past two weeks have been probably 2 of the hardest weeks in awhile. Not physically, but just mentally and emotionally.
As some of you may know, this all started out, basically, when Spencer was discharged from the hospital the last time (June 1st). Last hospital stay he coughed up a little bit of blood, that stopped, but then he got a "cold" of some sort. They let him out, (shouldn't have, we come to find out) and he went home feeling pretty crummy. The bleeding came back little by little. Things were going 'okay' until the news of Spencer's dad hit him hard. He found out his dad has a serious and aggressive stage 4 cancer. This got Spence pretty down (which I don't blame him one bit) and just made things spiral downwards little by little. We were finally told that because the bleeding wouldn't stop that he needed to go to the ER to be seen... so we did.. and here we are again in the hospital.

This is the part that frustrates the heck out of me. We're back in the hospital - basically because his doctors didn't pay enough attention when they went to discharge him last time. They should have looked further into it. We found out that, most likely, the reason he was bleeding from his lungs was being he got a lung infection which caused some inflammation. When I get to thinking about this, the lung infection probably started the last 4 days he was in the hospital last stay... if they would have kept him just a little longer the last time - we wouldn't be here right now.. So i'm basically saying; I believe this could have been prevented =/

So when he first got admitted in here this time, they told him it was just for observation. They didn't see him staying in for 2 weeks because he looked good, his lungs actually sounded very good, and they thought things would turn around quickly and he could be out of here. Then we got word from the doctor a couple days after the admit that this was probably due to a lung infection and that they were going to start him on antibiotics to kill the infection and reduce inflammation. She was staying that this stay needed to be at least 10 days long so that they could get the infection and so that he wouldn't build up a resistance to the antibiotics. Frustrating, but understandable, right?

So we go for a few days.. thinking that he would be able to go see his father soon, and get back to school this coming Monday - things were looking good!! His oxygen needs went from 6 liters to 3 liters and they were saying his lungs sounds excellent. They said that he would do PFTs to see where they are and then they would consider letting him go home! YAY good PFTs and we're home right?!!! WRONG! They didn't even schedule the PFTs. =/ He was supposed to have them Tuesday, but he doesn't have them until Tomorrow!!! (Friday) Okay.. so Friday we do PFTs, they should be really good (considering how everything else is going) and we will go home!!! Just in time for father's day with his Dad, School for the week, and a nice family reunion next Thursday...

.....Maybe.... now they are telling us he needs to stay in for a full 2 weeks!!!!!! Now let me tell you - I am frustrated beyond all belief. Come onnn.
Please tell me why you would tell us that we need to be in here for 2 weeks when you previously said the following:
1) this is just an observation stay to make sure the bleeding doesn't get worse
2) we need to start you on antibiotics but we will try to get you out of here in 10 days
3) you sound excellent
4) he met his oxygen goal (to get down to 3 liters) ((and he's been satting very well))
5) he JUST got out of the hospital
6) he feels better than he has in a long time (aside from depression from all of this crap)

The PA is on our side... He doesn't feel like there is a need to stay in for a full two weeks... but the doctor isn't budging... I am so SICK of being pulled in two different directions. the PA has talked to the doctor time after time... and Spencer was supposed to see her several times, and we were told that she was going to come in today... never did... then the PA called Spencer and said that she was going to call here shortly so we should stay by the phone.... nope, that was 2 hours ago... never did.


I mean.. I understand that if there is a very legit and good reason why she is keeping him here - that it be important to stay 2 weeks... but she won't even talk to us.. We haven't been given a solid reason. Right now, as it is, it seems like we're just here.... to be here...

He has made the comment... and the point clear... that it is VERY important to Spencer to be out for father's day.. this could very well be the last fathers day he gets to spend with his dad. Not to mention that he wants to spend AS MUCH TIME with his dad as he can... He needs to..
Not only father's day.. but he JUST started school. We were just getting life on track. it's so so important that he can be in school as much as possible..
And then last, but certainly not least, There is a big big family reunion this weekend that we have been looking forward to... they don't come very often and he REALLY would like to see his family (who he never ever gets to see)...

-sigh- I just want an answer. I want the doctor to stop ignoring us... I want him home. He is getting so frustrated and it's really brining down his spirits.. His mood is slipping, depression seems to be increasing.... can they not see this? =/

I almost feel like there is something here that we are not being told..... regardless - I WANT TO KNOW!

I know this might seem like a minor problem to some of you.. specially those who don't know the full story... We're tired of the hospital... he was admitted 16 times last year.. we want to start LIFE..... and this is not at all helping..

Please pray that we can at least get answers... if not go home - at least understand WHY I can't take him home...

I've desperately been needing to vent... It helps.. but just not enough.. I need all the support I can get!!!!!


1 comment:

  1. Nikki-

    I am an old friend of Spencer's, and I happened to see you had a blog and couldn't help myself! I just wanted to say I am sorry and I know how frustrating it is when doctors can't really tell you why you're in the hospital. It's like they don't understand why you don't want to live at the hospital. Doesn't everyone?! Just kidding. My daughter has been in the hospital most of her life, so I know first hand how the hospital can have no sense of urgency. I am glad he finally got released! Good luck to both of you!