Hospital log day - 37

Holy crap... 37 days in the hospital and no real end in sight.

OR day three of the trial...

It's good to know that Emmah can prove to be such a puzzle. First we had the how to get Emmah out of pain challenge, and that one stumped A LOT of people. We kept on going up and up and up on the pain meds while all the while there was no significant sense of relief... hell, there was none. I realize that there's been a lot of time spent and many conversations regarding how to best help Emmah. It seemed that we reached some kind of threshold... I guess that was when she started to go regularly over 1,000mg of opioids/narcotics per 24hrs. To be fair, they had discussed (in passing) the epidural before. So the epidural went in... and didn't provide any relief. Once again leaving everyone scratching their heads and saying "this should've worked".

Days passed and still no real relief was to be had. Then suddenly, as if by magic, she stopped using her PCA. That's the device that allows Emmah to self medicate herself by hitting a button. Anyway, she just quit cold turkey. All she had on board then what ever was happening with the epidural and the 300mg/day of Methadone. And then just like that she goes into the drug stupor... almost a comatose like state.

Too much Methadone is what was determined to be the culprit...

Ahhh, but Methatdone can't be stopped cold turkey, she needs to be weaned.

Hmmm... let's do this this way;

• Problem one... pain management
• Problem two... kidney problem
• Problem three...
  

Actually... problem numero uno Neuroblastoma

• Problem three... getting her in a place to be able to start the trial
• Problem four... her stomach has become distended and she hasn't stooled in like a week.
• Problem five... her urine output is fairly diminished and what's coming out is rather dark.
• Problem six... Methadone ahoy!
• Problem seven... fever
• Problem eight... vomiting
• Problem nine... we're still friggin' here!

So it goes like this, fluids going in aren't matching what's coming out... and nobody seems to have a good answer where the extra is going. She is gaining some weight... and it's presumed to be water weight. There's talk of a NG tube to depressurize her stomach. They've talked about giving her something to block the effects of the narcotics on her intestinal tract... hope would be that it would wake up and get going again. Not sure on the fever, cultures have come back negative. Waiting to get her off the Methadone is a lesson in torture for sure. They think that the Methadone (and this is me saying this) has kicked in. I'm thinking really!?! She's higher than a kite. At this point, I don't care if she ends up in pain again if we stop the Methadone. I mean I don't want her to hurt, but I've never heard of anyone expiring due to pain. Drug complication... yes... pain no.

I'm ready for some smelling salts here... I mean for her, not me.

The kidneys continue to function in that the her levels are good... there just isn't enough urine coming out. Oh... and the kicker? The trial med can cause her to become sleepy!

I realize that this post hasn't been in my typical "style", but I'm really tired... mentally and physically.

Okay... switching gears a little. I'm going to post something here (it was requested kind of/suggested by the person/persons overseeing the operation) it's the who, what and where of a spaghetti dinner/fundraiser that is being held in Emmah's name on the 26th of February at First Presbyterian Church in Joliet.

So that's the who, what and where right there, but I will post what was written in the flyer here and is as follows...

Angels For Emmah

We would like to introduce you to a friend of ours, Emmah Gudeman. Emmah is an 8th grade girl who is full of so many wonderful things! She has a great sense of humor, is a tremendous big sister to 5 brothers and sisters and has the most beautiful smile you'd ever want to see.

Unfortunately, our friend Emmah has been diagnosed with Neuroblastoma. Neuroblastoma is a cancer that forms in your nerve tissue. It usually begins in the adrenal glands, which sit atop of your kidneys. She was first diagnosed back in 2006 and battled like a champion. The cancer went into remission in 2008 and has now come back to cause her great amounts of pain. To say the least, this cancer battle (which, by the way, Emmah calls her "quest") has caused a great amount of pain for the whole family. The pain of watching your child/sister suffer, the pain of trying to financially take care of all the bills as you watch them pile up, the pain of a parent who cannot be EVERYTHING to everyone who needs them...

All of Emmah's sibling have attended Kids Crossroads Christian Preschool. Our preschool family would like to take some of the pressure off of the Gudeman's and show our love for them as well. We will be hosting a spaghetti dinner/fundraiser on February 26th, 2010 at First Presbyterian Church in Joliet, Illinois to just that!

The dinner will be held from 4:00 - 7:00 p.m. Tickets are $8/adults over 12, $5/child 12 and under and children 3 and under are free. At the dinner we will also have a silent auction, a raffle and a bake sale to raise more funds. Silent auction will close at 6:30 and drawings will be held at 6:45. You will not need be present to win. We would like to get as many donations to make as much money as we can for this VERY needy family. Our prayer is that you can help us out with a donation for the silent auction, attending the dinner or just sending prayers for our Emmah!

God bless you!

"And God himself has commanded that we must not only love Him, but our Christian brothers and sisters too." 1 John 4:21

I would just like to reiterate that I'm posting this as it's written in the flyer... I didn't take any creative liberties. Well one... actually it was more of an edit. Sorry Patti but our last name only has one n.

Okay... this just in as I've been busy "slaving" away at posting this. The x-rays still show no signs of blockage, they are going to hold the Methadone for tonight and they are hearing bowel sounds. She's going to be getting some lasix to see what that does, and they've decided that they are going to try using Methylnaltrexone to help with waking up her bowels some more.

Well, I can see this post is kind of all over the place, it's just a testament as to where my head is...

KEIYTAP