Wednesday, August 25, 2010

Still at PMH

I haven't posted an update in quite a while.

Having thought about that fact, I believe it is because my hope was to post one with a title "Great news" or "Back home" or "Life is normal". Unfortunately, it looks like it will be some time before that post appears on the blog....

After 23 days Brandon is still in hospital.
I wish I could say that things are better, but they are not - He is now in complete isolation with a case of the Shingles. This is the adult form of chicken pox and is quite painful. He still has abdominal pain, it's still difficult to eat, he is still on a high level of pain medication and he continues to lose weight.

My poor husband. Believe me, neither one of us is the type to look or ask for pity, but I do pity him at this point. He is in pain ALL the time and that is no way to be. It's at the stage WAY BEYOND 'not fair'.

His spirits are also starting to be affected. Not surprisingly of course, but that is not the Brandon that we all know. He has moments of tears where he cries out "I can't take this any more". He misses the kids beyond words and he wants to come home.

I know that people are still thinking about and praying for him. I pray that those prayers somehow are heard by 'someone'.

We are tired....tired of this whole thing.

Thursday, August 12, 2010

Are You Kidding Me?!?!?!

FINALLY FINALLY FINALLY there was a step taken yesterday at the hospital!

Not sure what happened - the stars aligned, someone was drunk, pressure from above (thanks to some political pull - you know who you are), or sheer desperation to find an answer....

...but they finally performed an endoscopy.

And by doing this they actually found that Brandon has an ulcerated esophagus.

Great news - we have an answer. Although it may only be part of the answer, it is something.

So why am I so exasperated???

  • Before we even went to the hospital, I told Brandon that what he is describing sounds like the ulcers I had when I was pregnant
  • When we got to the hospital I told them to check for ulcers
  • When they transferred him to PMH I asked when they were going to do an endoscopy
  • When each specialist walked in I mentioned ulcers and asked for an endoscopy
  • Even when they were SURE it was GVH I asked them to still do an endoscopy so that at least they could rule out some things

And more so, because:

  • Some of this pain could have been eliminated 2 weeks ago
  • Some of the medication they put him on in the meantime has actually damaged his liver
  • We now have secondary infections that I am not convinced would have been there had this been treated

I am so upset and frustrated! Not sure what else I could have done, but I know that nobody listened, Drs were stubborn and set in their own mindsets and Brandon paid the price.

Are you kidding me!!

Side note: Picture of Brandon's teeny tiny legs...result of laying in bed for 2 weeks.

Monday, August 9, 2010

Still Nothing

I have officially reached the point of ultimate frustration with the Dr.s on Brandon's team. He has now been in the hospital since last Monday and they STILL have not determined what is wrong with him.

I don't blame them for that...but I am critical of the decision-making process (or lack thereof). Maybe it's the fact that improving efficiency and effectiveness is something that I do for a living or maybe it's the fact that my love is still in excruciating pain...or maybe it's both.

Every time another specialist walks in, he/she boldly states that the answer is ________ and the proper treatment is ________. There is then discussion with the rest of the team and somehow that decision is revoked and another solution is selected. You know what - I'd even be fine with that....except that other solution has thus far been "do nothing". It seems like with all this expertise and knowledge in the room, it creates a paralysis of action. And that is not acceptable to me!

Someone needs to take charge and do SOMETHING, because doing NOTHING has not been working!!

Meanwhile Brandon is still in pain, drugged out of his mind (literally hallucinating now) and new issues are popping up (suddenly they are suspecting shingles in his liver).

So today "wife from hell" will show up and kick some medical butt!!!

Thursday, August 5, 2010

"Paging Dr. House"

We are living a real-life episode of HOUSE.
And I now understand how frustrated the characters on the show can get with the medical field.

Brandon is now Day 4 in the hospital and I can not count the number of specialists (and specialties) that have come in to offer their opinions and hypotheses.

And they are all different... Everything from heart problem (which it is not) to ulcer, to gall stones, to perforated bowels, to stomach ileus, to liver issue.....and the list goes on.

Meanwhile, we have the patient - Brandon is still in horrible pain, getting more frustrated and agitated by the minute, going through test after test to gather additional clues to this abdominal mystery.

I think we can safely assume Brandon is not pregnant.

So I would like to page Dr. House and his team - Please come see us and come up with your brilliant Brandon can finally feel better and get home.

Tuesday, August 3, 2010

And again....

Back in hospital as of last night.

Really??? Can we not have 1 week of calm????

As you all know, Brandon came back home last Monday.
Everything was great....feeling good, life back to 'normal'.

Sunday he began feeling pain in his upper abdomen. By Monday afternoon he was feeling so much pain that he ASKED to go to the hospital. For those who know Brandon, you realize that this is VERY atypical - he is more likely to tough it out at home.

So back to Toronto General Emerg where luckily we were met by the same great Dr as last time. She attended to Brandon immediately (as opposed to waiting hours). Some pain medication (thank you), a CAT scan and x-ray later, they determined that:

- he has a gall stone
- and potentially something else

And now we wait while they try to determine if and what the 'something else' is.

Now Brandon is back at Princess Margaret. Unfortunately he is still in a lot of pain.
Hopefully they can figure everything out quickly and get him back home...feeling GOOD.