Tuesday, July 27, 2010

Back Home

Brandon was released from the hospital yesterday feeling well.
It was so nice for all of us to have him back home where he belongs.

This stint in hospital really made us realize what a long road we are on - one with many curves and bumps along the way. I guess this is something we will have to accept, and hope that it gets smoother with time.

He is feeling good, though VERY weak.
Happy to be home :)

Thursday, July 22, 2010

Enough - I mean it this time!

Arghhh! That pretty much describes how we are feeling in the most polite fashion. If I were less polite there are a few choice words I can think of.

Brandon is back in the hospital again.

[Warning - graphic post]

Last Tuesday Brandon started feeling discomfort when he urinated. He mentioned this at his regular appointment. They took a culture and sent him home.
By Thursday he was peeing blood and was in excruciating pain. On Friday he took himself to the hospital (without an appt) and insisted that they do something (anything) to relieve some of the pain. They gave him some antibiotics and arranged for a nurse to come to our house over the weekend to hook up Saline - to flush out what they believed was a virus.
Throughout the weekend Brandon was in HORRIBLE pain - literally moaning and hunching over every time he went to pee - which by now was every 15 minutes!! He was exhausted but could not stay asleep because he always needed to pee. TORTURE!

On Monday Brandon had another appointment. Nothing new. Monday night was spent in the bathroom (too graphic).

Tuesday he went back to the hospital for his appointment. They assessed him and decided that he would not be going home. They hooked him up to an IV and started the Saline flow. He was finally given some Morphine which at least dulled the pain.

Their diagnosis was that indeed he had a virus in his bladder - something that we could all get but we could fight. As Brandon's immune system is suppressed, it turned into something painful. The result is frequent urination, inflammation, bleeding and pain. That would have to go away on its own as there is nothing to do about a virus. They are also concerned about GVH (Graft vs Host) of the gut and wanted to control this right away. This is quite serious and if it gets out of hand it can last for months and be quite uncomfortable and painful - basically everything goes through you and out - you can't digest anything properly.

So now they are talking about keeping him in hospital at least until Tuesday. They are observing him to make sure he is in fact over the risk of GVH.

It is such a roller coaster. A very frustrating, painful, and random roller coaster that we want to get off of.

I feel so horrible for Brandon. He has been through so much and it does not seem to end. One thing after another. And I feel so helpless as he is in pain and there is nothing I can do. And I hate it! I just want him to be ok already!!

Wednesday, July 14, 2010

A Few Tough Weeks

It's been a tough few weeks for Brandon since his hospital stint with Pneumonia. Unfortunately recovery is VERY slow.

He is still coughing quite a lot, which is annoying during the day and dreadful at night. On one hand his medications make him quite sleepy, but on the other hand he can't sleep because he is either coughing or uncomfortable.

As is his nature, Brandon does not complain much, but I can see how frustrated and exhausted he is - "I just want to sleep through a night." In addition, by midnight he heads downstairs so as not to disturb me all night - sweet, but I would rather have him beside me.

The Dr's don't seem too concerned. They checked his lungs via chest xray and next week they may try another pulmonary test to see what is going on.

Overall Brandon is quite tired and weak. He had hoped to be further along to "normal" by this time, so that adds insult to injury.

So we take it day by day and see how he feels. And we try to be patient with this monster that just won't go away quickly enough.

Wednesday, July 7, 2010

My Prince - Still as Charming as Ever

I am so lucky!

My Prince is just as romantic as he has ever been (even from a hospital bed)...

As a surprise, for our 5th anniversary, he had our wedding song recorded by the same 2 artists that performed it at our wedding!!!

Thank you Justin (Brandon's brother) for writing such a beautiful song.
Thank you Robyn and Mark for the beautiful performance.

Thank you Brandon for continuing to surprise me with such thoughtful loving gifts.

We played the song, we danced in our living room, and I cried - perfect moment!

I love you so much my Prince!

Tuesday, July 6, 2010

Our 5th Anniversary

This past Saturday Brandon and I celebrated our 5th wedding anniversary.
Needless to say that this was special in so many ways...

First (and most obviously) is the fact that WE CELEBRATED OUR 5th ANNIVERSARY! Not to sound too morose, but the stakes were stacked against us when Brandon was diagnosed 6 months ago. He HAS made it...and was feeling well enough to organize and attend this momentous evening.

Second - 5 years already! Wow! In some ways it feels like only yesterday that we were standing under the Chupah at The Liberty Grand on a beautiful and perfect summer day. Today we have 2 amazing, smart and funny children (that are growing up so fast), a wonderful loving home and shared memories of some awesome vacations around the world.

Third - 5 years only? Really? The amount of crap we have endured in only 5 years astounds me. My illness and hospitalization, Koby's issues and hospitalization, Brandon's illness... I whole-heartedly proclaim that we have lived through more S*#t than some people have in a lifetime!!

Finally - through the good, the bad, the amazing and the miserable - no matter what - Brandon and I have supported each other, loved each other, held each other, given each other strength, smiled and moved forward - looking ahead with a positive spirit.

So as we enjoyed dinner and raised our glasses for a toast, we celebrated the past, we teared up about the past and we wished for the future...

Happiness, love and health
Amen