A week and a half later

Well, it's me again, Justin. I thought my blog updating duties came to an end when Susan came home, but she still doesn't feel well enough to sit in front of a computer. She spends most of her time sitting in the lazy boy chair sleeping and sipping on high calorie concoctions, and nibbling on other high calorie dense foods. I wish I could say her healing situation has improved by leaps and bounds since a week and a half ago, but it seems to be moving at a snails pace for Susan. More like a really slow roller coaster, with all the ups and downs. She had been eating well, for most of a week, but the fluid continued to build up around the bowels which is painful and made it hard to eat because there was no room for anything else, which also makes the #1 and #2 functions more difficult. She hasn't said anything about how much detail I include in the posts, but I wonder how she really feels about me painting this mental picture for you about her bodily functions? Who knows how I would feel if I were in her shoes, but I think it's a good thing for everyone to know what to pray for. By the way thanks for all your prayers. I know there are many!! By the looks of the map to the right they come from all over. I got off topic. Because the fluid in the peritoneal sac, she was unable to eat or get comfortable, so today we went to the hospital to get it drained again. The last time was about two weeks ago and they removed 2.5 liters, this time they only got out 1.5 liters.... "only". Doing this brings immediate pressure relief, but it also brings a different pain soon after as the bowels readjust, which has been almost unbearable today. :( Hopefully tomorrow will be better.

I also need to make mention of the Undy 5000 which was a huge success for the cause and for our Team! Thanks so much to everyone who came out and supported us. It was awesome to see so many there sporting the "Super Susan Semi Colon Friends" shirt. The picture of Susan flying in her cape and underwear was not a photoshopped picture, except for the flying through the sky part (she can't really fly). In college her and her friends actually dressed up like that, undies and all, and took pictures while they jumped superman style onto a bed. That's what track girls do on weekends in college I guess. How fitting of a picture though, she must have had a premonition.



Talking about praying above and the Undy 5000 reminds me of someone who stopped me as I was walking (woddeling) back to my truck after the race. As I was about to leave I was stopped by a lady who introduced herself to me as Robyn. She said she knew a common friend of Susan's (Natalie) and, also, knew a common friend that we met at the Mayo hospital (Kim Miller, cool story that I need to wright about and soon will, I thought I'd leave that for Susan, but it looks like I may be doing it). Robyn's family and friends were wearing the Polyp Patrol shirts.... Almost as creative as ours :) JK. We spoke for a minute, during which she let me know that she and her family and friends had been praying for Susan, even though they hadn't even met her. They had heard about her and her condition from Natalie, who also knows Kim, who has almost the exact diagnosis as Susan's. Sorry if that's confusing, but it was really nice to hear that so many people are praying for you Susan, even people we don't know.

Last Update...... She Escaped!!

We were finally able to sneak her out today. It's really nice to have her home. I was really starting to dislike the smell of that place, but that's not the main reason I'm happy.

Yesterday they took her off her IV meds, and liquids, and disconnected her from all the tubes, and wires, etc. Now she's taking oral medication for the pain management. They gave her a new drug along with the ones she's been on for the last 3 weeks.... actually 4 months. This new drug makes her real sleepy so now she sleeps even more. Having a conversation with her is fun. She'll be awake talking, then you ask her a question and wait for a response and.... nothing, she fell asleep.

I know many of you would love to see her, but she's still not feeling 100%. She asked me to let everyone know to hold off on any visits for now. Hopefully she will be able to make it to the Undy 5000. Here is a pic of her last meal at the hospital. (If you look behind her you can see the white board with all the times, it had been cleaned up and organized after the first erasure).


Speaking of the Undy 5000, we hope to see many of you there Saturday morning. I can't remember if this had been mentioned, but T-shirts were donated for Susan's cause for us to wear at the "brief" run. We are planning on handing out the t-shirts at the race somewhere around the registration table, so keep a look out for us.

Thanx for following the updates from the iPhone (most of them anyway).

Justin signing out.

Update #too many

Hopefully the updates will be ending soon, so I decided to stop counting. There were way more then I first thought there'd be when I was first pressured.... I mean agreed to do this :) Susan won't be coming home today as we hoped, but now the doctors feel like Wednesday will be the day! Her pain is being managed much better now. They've changed her drug dosage and timing, and even added a new one so that now she feels better, and is also sleeping better (with out so many of the hallucinatory dreams). She hasn't tried to escape again, thankfully.
It's almost been 3 weeks now and Susan has gotten to know a lot of nurses, some have been good and some have been not so good. Last night she had a nurse that happened to be added to her "poop list". After being here so long without the ability to do much she has had to find ways of occupying her mind. One of those ways was keeping track on the white board of all the times for her events: walks, bowel movements, pees, "fluffs", and various other things. It didn't always makes sense to the rest of us, but it made sense to Susan. Last night she got a new nurse that she hadn't had yet. She walks in a the beginning of the shift change and looks at the board and asks "what's this mess, can I erase it?", the other nurse just told her to leave it, and we told her what it was. This morning while Mike and Susan were out for her morning walk, the nurse went into the room and erased all of the times on the board. Needless to say Susan was irritated and now doesn't like that nurse. Jerk.

Update #16, No More Holes Please

Susan has been suffering from a distended belly which is called ascites. Ascites is where fluid builds up in the membrane sac (the peritoneum) that holds all the guts in place. They were hoping that by giving here drugs to reduce water retention her body would get rid of it on it's own. It was getting so uncomfertable they decided to do a procedure called paracentesis where they insert a tube into the peritoneum, with a puncture through the belly, to drain the built up fluid. It's hard to believe, but they drained 2.5 liters from her little belly! (10 lbs worth) As it drained she immediately felt relief followed by extreme cramping as the bowels readjusted. Since then she's been able to take deeper breaths and she started feeling hungry again. She's slowly trying to make her way up to 1500 calories a day.

Update #15

Not a lot has changed, at least not as fast as Susan and all of us hoped. The swelling has gone down, but there is still a lot of fluid build up in the abdomen area. The pain and discomfort seem like they will never go away. She got her staples out from the second surgery this morning. The NG tube finally came out yesterday also. She's now eating clear liquids and small amounts of soft foods. Hopefully, if all goes well, the surgeons want to kick her out of here on Monday. They said she has over stayed her welcome. Let's hope for Monday.

P.S. She farted yesterday!!

Update #14

Sorry about slackin on the updates, I have two other jobs besides this one.
It's been a rough road and it's almost impossible for Susan to not get discouraged, she does a pretty good job though at putting up the facade. Like others have mentioned in their comments, we also didn't think this would be such a long drawn out event, and this is what's causing the downers for Susan (and all of us). She's still having a lot of pain and distention in her belly, and swelling in her lower back, which is very annoying because she has to lay all day on it. This also makes it impossible to get a complete nights sleep. The doctors seem to think that all of this is normal though and will continue to slowly recover. They've done blood and urine lab work and another CT scan and everything is looking good.
Also, to let you know, Susan is proudly wearing her "I Voted Early" sticker on her gown tonight. Boy is she patriotic.

I was asked to re-post the link to the Undy 5000 run November 15th, so here it is:
Susan's Undy 5000 Team

Update #13, She Pooed!!!

Thanks to Anna Mortensen for the awesome T-shirt. As you can see by the NG tube she's still not eating, at least not through her mouth. Her bowels are working none the less, as we found out today! It has been a discouraging roller coaster for Susan, but this is another step closed to the finish line and she feels quite "relieved" for having reached this new milestone.