Friday, January 30, 2009

Released

Brian is being released from the hospital right now. His diagnosis is Histoplasmosis and he will be on twelve weeks of an anti-fungal medicine and should be fine! Yeeeehaw!

Wednesday, January 28, 2009

cancer free

Deb just got word that the biopsy showed no signs of cancer. It is 99.9% sure! Hoooray!!!!

Tuesday, January 27, 2009

Switched Room



They switched Debbie and Brian's room to the sixth floor room 48. That means they are off the oncology floor. So her room phone number will be the same except the last three digits would be her new room number 648. (Don't want to post the phone number on the internet.)

Brian's blood work came back positive for histoplasmosis. I guess they are waiting for another pathology report to verify. I don't really know. But Debbie is saying still it isn't for sure. I guess since histoplasmosis is prevalent in this area that he could test positive for it and still have lymphoma on top of it.

If you want to read up on Histoplasmosis, this site is very informative. http://www.mayoclinic.com/health/histoplasmosis/DS00517
Serology. This test examines blood for antigens and antibodies. It's a quick and fairly accurate way of detecting disseminated histoplasmosis as well as chronic or mild cases of the disease. But false-negative results are a problem, especially in people who have compromised immune systems or are infected with other types of fungi. The test can also be positive in people who live in endemic areas and have had past exposure to H. capsulatum, even though their current symptoms may be due to something else.

Monday, January 26, 2009

recovery

Brian is back in his room. His surgery went smoothly. They say the results could take two weeks! TWO WEEKS!

Brian is in pain and they are giving him morphine to manage it. There is a chest tube sticking out of his side to help with drainage and to allow them access to go back inside if he gets an infection. They say recovery could take a couple of days (more or less depending on him).

They took a piece of the shell of the mass. They said the shell was hard like a basketball. And then they cleaned out the inside of it which was full of "gunk". I don't know much about that. But it sounds like that could make it easier for him to breathe once the inflammation from the surgery goes down. I suppose they can't just take the thing out until they know what it is.

Sorry, I don't have more info for you but after the shock of the post-op wears off, I am sure I 'll be able to suss out more.

Saturday, January 24, 2009

Brian's slideshow

I put it at the bottom of the page so you can view it from this page but also if you wanted to bookmark the link for future reference here it is.

Brian's slideshow

Friday, January 23, 2009

Brian Rescheduled - yet again

So after being on NPO again since midnight last night, they rescheduled Brian's biopsy for Monday. Supposedly, he is actually on the list and is not on standby this time so it should really happen first thing Monday morning.

The oncologist told them today that they are still thinking it could be this fungal infection and not the c-word because his blood work came back without any tumor markers (whatever that means!). So that is really good news. I have never been so excited by the idea of a fungal infection in my whole life, though I have always been a big fan of fungus.

Hang in there, Brian. You are just the most amazing two year old I have ever had the pleasure of knowing.

Poor Debbie had a rough night last night with the dang IV. When I left at midnight, they had just flushed the thing and hooked up his IV and it wouldn't flow so they were gonna have to redo it. As awful as that process is, stupid third shift staff made it worse. Seems like they have a real problem with follow through over there and they make a tough situation tougher! It is a long story of back and forth but in the end they didn't finally put in a new line until 5 am after many mis-communications and ball-droppings throughout the night.

Gah!!! Give a pregnant lady with a sick toddler a break why don't they and do it right the first time. Needless to say, the patient advocate is gonna get another earful.

Thursday, January 22, 2009

Brian



Yesterday, they did an xray on Brian and thought that his mass was shrinking. So they canceled OR (operating room) and ordered another CT. I got to sit with him through the CT because it was unsafe for Deb's pregnancy. He did so well, I was amazed. He cried and needed coaching but he really stayed still.

They had to put in a new IV earlier that day and he cried but stayed really still. I never would have imagined a two year old to be able to stay still for something that he KNEW was going to hurt. He's already had them put in like four or five IVs so he really did know it was gonna hurt and he kept trying to talk them out of it. It just about killed us all to see it. The bottom picture is right after they put in the new IV. We were trying to cheer him up. He loves the camera.

He is so smart.

So the oncologist who canceled the biopsy and ordered the CT said he didn't think it was cancer and that he thought it was something called Histoplasmosis. That is a fungal infection that can be very serious or can clear up on its own.

So we were ecstatic! It was like a weight being lifted off our chests. And even though Brian was NPO (which means he was not allowed anything to eat or drink ALL DAY!), we had a really good day. Until the CT results came back and showed that the mass hadn't shrunk, it actually had just moved and may have even grown or just changed shape. So the biopsy has been rescheduled as an add on for FRIDAY! Another add on. They had him as an add on for Tuesday and he fasted all day and it was miserable. Then they didn't even get him in! That is such a freaking nightmare to have to tell a two year old he can't eat or drink. Then he has to be hooked up to an IV and it catches on everything and about gives you a heart attack every time he decides to sprint - which is about every five seconds.

Deb could really use some phone calls and visitors. If you think you are gonna be bothering her, you won't be. Send her a card or give her a call! Her room is 546 building A.


video

Monday, January 19, 2009

using a spoon

Diego ate a container of applesauce with a spoon all by himself. I held the container and he used the spoon! That was pretty exciting. I am sure he could have done this a million years ago if I would have let him. I just never get out the high chair anymore to contain the mess and I don't want a big mess to clean up. Looks like I am gonna need to break out the chair again.

Sunday, January 18, 2009

Brian


Little Brian has been in the hospital for about five days now. He's been having trouble breathing. They though it was bronchitis. Then they thought it was asthma. Then they thought it was pneumonia. After an xray, they noticed a mass in his chest around his trachea. So his family doctor sent him to emergency at Children's Hospital. He has been through a lot already. CT scans (2) and a PET scan and three IV placements (ouch).

His spirits are high and he is playing and exploring. Children's is totally set up for playing and exploring. Their room is right across the hall from a playroom decked out with toys, games, books, and dvds.

He has a biopsy tentatively scheduled for Tuesday. He is sort of on standby for that, he may or may not get in. If this is your first time hearing about it, I am truly sorry for you to have to find out this way. Deborah is beside herself and is doing her best to keep it together.

Children's has a resource where parents can create a website with updates so people can log on and check it out. I don't think they have had a chance to set up their site yet but they plan to do that.