Wednesday, June 29, 2011

Honestly, I just need to vent a little bit. I'm getting ready to head up to the hospital to see Spencer (yes he's back in.... again) and I don't want to be all upset while I'm there.
I'm very, very angry with the doctors. They don't seem to be listening. Both CF docs are on vacation and so the regular pulmonary team etc is on duty - and I don't feel like they quite understand. They are good doctors but they get really frustrating sometimes.
Spencer was admitted yesterday and they aren't at all sure whats going on. His CF seems to be doing okay, but it's everything else =( Last night he spiked a fever of over 102. His rash has gotten really bad and the swelling in his feet is getting worse. They took his kidney and liver functions and they came back pretty good. They did a CBC and found that his Hemoglobin is at 6 and his Hematocrit is at 21. (Pretty bad) So they are going to give him a blood transfusion. It sucks because there is a risk for infection from doing this and it makes Spencer feel really crappy. But it's good because I really think this will help him get more energy and feel a little bit normal. I hope it really boosts his numbers and has a really good effect on him.

But here's to the *very* frustrating part of it all.... They think that the rash might be from a drug reaction. In our experience with the rash before - it has something to do with his kidneys. Granted his functions are normal (thank goodness) but that's been the case almost every time he's had the reaction and major fluid retention in his feet and ankles.
The part that REALLY stumps me is that they think it's a drug reaction YET they STILL have him on every single medication that he was on before..... Something isn't adding up.
They want Spencer to talk to dermatology and possibly have some biopsies done. This has all been done in the past and the results were inconclusive. So why are they doing it again?

And when we ask these questions - they will not give us an answer!!! They go around the question and we are still left as confused as before. If they don't know - then TELL US YOU DON'T KNOW!!!! I feel like because of it all they are just doing something because they feel they need to and they don't know what else to do. I mean I understand they want to figure it all out, but they won't listen to us that it's already been done in the past...

Something is fishy and I'm getting really upset. I would rather them tell us that they really don't know what's going on or why they are doing something rather then keep things from us and pretend that they know what is wrong. I hate this. We've been through this in the past and it REALLY upsets me.

I am headed up there now to try and figure out what the results were from his echo. Evidently the doc heard a murmur and some swooshing sounds and so she wanted to further check it out. That's fine.... but PLEASE tell us those results so that we don't worry... kay?

Just a vent - more to come I'm sure because I haven't even covered half of whats on my mind. But I gotta get out the door.

I'm asking you to pray for some answers. Please.

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