This is the series of emails I sent to family and friends during Jamie's unexpected stay in the hospital in November 2009. This trip led to his colon cancer diagnosis.
*****
November 6, 2009
Update
Just a quick update before my computer dies because I forgot to bring the power cord and the battery is soooo old that it doesn't hold much of a charge anymore.
Jamie and I are going to spend a fun-filled weekend at Forsyth Medical Center in Winston-Salem. He got sick on Wednesday night and had been unable to keep anything down. Around noon on Friday we headed for the ER. After 8 hours in the ER, he was taken up to a room. They aren't quite sure what's wrong. Right now he's being rehydrated. On Sunday or Monday they'll do a colonoscopy to check out his gut and get a better idea at his ulcerative colitis problems.
I send out more information as we get it.
He's in room 0000 for anybody who might be interested. The hospital has a one visitor per patient policy in effect due to the H1N1/flu spread, so we can't have visitors. The room number is 555-555-5555. Not sure how much he'll want to talk since he's pretty tired out after all the throwing up.
We're going to settle in for the night now and hopefully he'll get some much needed sleep, until someone comes in at 1am to check his vitals or give him more drugs.
Beth
*****
November 7, 2009
Update #2
The difference between the Jamie of Today and the Jamie of Yesterday is staggering! He no longer looks like a leftover from a Halloween haunted house. He is pink and filled out in the face again. Yesterday he looked like a ghoul or a zombie. He's been quite talkative today, which is always a sign that he's feeling good. Every now and then he says, "I'm hungry" and has a hankering for ham, which is really weird because he doesn't really like ham.
He's been though about 7 or 8 liter bags of fluid since yesterday. He got three bags in the ER, two of which were given wide open. 1000ml an hour for two hours. His third bag was slowed down, and then all the other bags have been even slower. He's getting some antibiotics and some steroids. His nausea is gone. He graduated from ice chips to sipping water late this afternoon. Tonight he graduated up to clear liquids and took a few sips each of apple juice and what they say is chicken broth.
Two fantastic nurses have looked after him so far. The nurse from last night is back again tonight and his day nurse from earlier should be his nurse tomorrow during the day. Continuity is a great thing.
His main complaint today has been his back. Normally at home, even if he wasn't doing much more than working at the computer, he'd get up to walk around the house to keep his back from getting stiff. But he's been laying down for most of the past three days. The only pain medication he can tolerate without an allergic reaction is demerol and it only takes a little of the edge off the backache. His day nurse told him he was free to walk around the floor if he wanted to. So far we've taken two shuffles around the floor. Our floor doesn't have a lot of walking space since the locked Psych ward is on the floor too.
Tomorrow he'll be going through the prep for a colonoscopy at 1pm on Monday. He'll get to enjoy a fine concoction of gatorade and miralax. Yum. The GI doctor wants to take a look at his colitis complaints, even though he isn't really complaining of his gut too much. He just happned to mention "I have ulcerative colitis" to the triage nurse in the ER and everybody else seemed to hone in on that.
Nobody has said yet what caused the 36 hours of vomiting and inability to keep anything down. Hopefully it was just a bug that passed and not anything related to his gut. It's very unusual for him to have any upper tummy problems because of his lower tummy issues. Hopefully his colonoscopy on Monday won't reveal anything other than what we already know -- that he has ulcerative colitis.
So, we'll be here at lovely Forsyth Medical Center until at least late Monday afternoon, possibly over into Tuesday. We probably wouldn't have to be here so long if we had come in earlier and didn't have to wait out a Sunday. The endoscopy lab isn't fully manned on Sundays and they usually only do emergency procedures. But, here we are and he'll keep getting fluids probably through tomorrow.
Thanks for your prayers. We're getting them from both coasts and they're obviously helping a lot!
Lots of love,
Beth
*****
November 8, 2009
Update #3
We didn't sleep very good last night. I think the only reason we slept so well on Friday night is because we were so very tired after being in the ER for 7 hours.
Jamie got a breakfast tray this morning. He very much enjoyed his chicken broth, apple juice, green jello, and orange popsicle.
Today Jamie is getting a bag of Iron in his IV and a shot of vitamin K. His blood was a little thin and they want to thicken it up before doing the colonoscopy tomorrow.
We took another shuffle around the floor after lunch. Now he's about to start downing gatorade/miralax cocktails. Mmmm...yum.
More later.
-Beth
*****
November, 8
Update #4
Not much to update tonight. We're looking forward to hopefully sleeping better tonight. Maybe the lack of good sleep last night will make us tired enough to sleep through everything (except the vital sign checks...must they do that at 3am?). Jamie is all prepped for his colonoscopy tomorrow, and I'm sure he'll be starving by the time he's through. Hopefully after the procedure, he'll be able to eat at least some soft foods, if not real food. He's hungry and ready to eat. Yesterday he was craving ham and he doesn't even really like ham. I promise to feed him whatever he wants when we get home! (Luckily, I like just about everything he likes.)
More later!
-Beth
*****
November 9, 2009
Update #5
Jamie's 1pm colonoscopy turned into more of a 3pm colonoscopy and it was almost 5pm when he got back to the room. We're enjoying at least one more night in the fine establishment of Forsyth Medical Center. Tomorrow we'll get the results of the biopsy from the colonoscopy. When he got to the ER on Friday, they x-rayed his gut because there was concern that he had a bowel blockage. The x-ray came back inconclusive. There was something there, but they weren't sure what it was. So, he had a CT scan, which also revealed there was something there, but didn't give them any better clue as to what it actually was. So, a colonoscopy was called for.
The GI doctor saw the usual inflammation from colitis/Crohn's (they aren't sure exactly which he has, even though doctors over the years have told him it was colitis) and then he found the spot that showed up on the x-ray and CT scan. He wasn't really sure what it was just by looking at it. The doctor said it could either be a very very inflamed area or it could be worse.
If it turns out to just be really really inflamed, then Jamie gets oral steroids (he's already getting IV steroids) and is discharged tomorrow, with some sort of maintenance plan for his gut issues. If it's worse than just inflammation, we get to enjoy the fine hospitality of FMC a little longer, Jamie will get a tour of the operating room, and at least part of his colon will get to part ways with the rest of his digestive system.
Luckily, Jamie has no real health complaints at the moment other than his back. His gut doesn't hurt and he's going to the bathroom with no problems -- of course, there isn't much in his system any more. He still hasn't gone past clear liquids, though I'm sure he could handle soft foods or maybe some pudding. He's been watching the Food Network quite a bit, even shows that he normally doesn't watch. I guess he's feeding his eyes rather than his stomach.
We thank you all for your prayers and ask that you keep praying for good news tomorrow. Both of us realllllly want to go home were our bed, couch, bathrooms, computer, and huge HDTV are.
Until later!
Beth
*****
November 10, 2009
Update...um...I lost count
After getting pretty bad news, we got some hope and some plans a couple of hours ago. The surgeon stopped by around 7pm tonight to go over the game plan. He is in no big rush to do the surgery. Mostly because A) Jamie's hemoglobin is low (less than 8, compared to the 10-12 the doctor would rather see it at before surgery and B) his gut isn't going to explode in the next few minutes. This means WE GET TO GO HOME! For about a week, before coming back for the surgery to remove Jamie's colon. Just the idea that we get to go home, hopefully before this weekend, is making everything a little more bearable.
While we're home, Jamie will be getting iron supplements, either pills or IV, to make his blood more tolerable for surgery. The doctor would rather do that than give him a blood transfusion right now. Surgery would, of course, be major abdominal surgery. Unfortunately no little-bitty cuts and a short recovery. He will probably have a week-long recovery after the first surgery.
The first surgery will remove all the colon but a small portion (6" or so) at the bottom. The little bit at the end will be folded over, stapled, and allowed to heal. He will have a temporary ostomy. Once he has recovered and healed up from the first surgery, he'll have a second surgery to create an inside pouch from some of his small intestine. That will be another major abdominal surgery with another week-long recovery in the hospital. After that pouch has healed, he'll have a less complex surgery with less recovery to connect the new pouch to the little bit of colon and the ostomy hole in his tummy will be closed up.
He should be in a state of "new normal" within 5-6 months.
As of right now, his body (with the exception of his back) feels fine. He's hyrdated and pink. He's been eating full liquids (cream of soups, ice cream, pudding) with no problems so far. He even got to pick out his menu for tomorrow. We took one stroll around the floor today and he's been up to the bathroom several times. He even sat in the chair for a while. He was a little down in the dumps when we got the first bad news from the GI doctor, but after talking with the surgeon we both feel a little more hopeful and less gloomy.
Right now he's on the phone with his mom, but he's mocking me as I typey-typey-type away at the keyboard. So, I'd say he's in a better mood at the moment. A happy Jamie means a happy Beth.
My mom is on-call to come to us at a moment's notice. At first, I called and wanted her to come tomorrow. Unfortunately a tropical storm with pouring rain is sitting on top of us at the moment and she won't be able to come tomorrow. But, with our better news that we got from the surgeon, it isn't imperative for her to come right away. She'll be with us when we go home and help take care of Jamie, giving me a chance to go back to work. I have some leave time saved up, but not too much more than two weeks worth of sick and vacation time combined. I don't want to use up all my time right away and have nothing left for later.
The outcome isn't great. We're glad (though we might not admit it yet) that this was caught before it had a chance to spread and do worse damage. But, we have a plan and a better idea of what to expect in the coming weeks and months. We'll continue to keep everybody updated. And hopefully tomorrow we can let everybody know when we're finally going to go home.
Thanks for your prayers and emails and calls. If you haven't called yet and want to, please feel free. Jamie does enjoy talking to folks on the phone. He says it's nice to know people care, and I think it's a welcome distraction. The room number is 555-555-5555.
We'll let you know more tomorrow.
-Beth
*****
November 12, 2009
Exciting Update!
Here is the best update we have:
WE'RE GOING HOME TONIGHT!!!!!!!!!!!!!!
Wooohoo!
Rather than taking iron pills or an iron IV at home, Jamie's currently hooked up to a super-duper iron IV that will take, on total, 5 hours to complete. This iron is a slow release iron that will work over the next week to raise his hemoglobin. So, we won't have to worry with any medications except the steroids while we're home. Hopefully we'll be discharged around 11pm. The nurse we've had for the past few nights was excited to get him again to night, but our day nurse burst her bubble when she said he'd only be here for another few hours.
My mom is coming up tomorrow. I'm planning to have at least a partial day at work tomorrow. Got stuff that needs to be done, but won't take me too long to do. It's just easier for me to do rather than for me to explain to somebody what to do.
We know we'll be back, but for now we know we're going home tonight! YAY!
Thanks for all your prayers! We've greatly appreciated them.
-Beth
*****
November 16, 2009
Appointments
Jamie is going for blood work sometime on Thursday afternoon -- no set appointment, just needs to get done sometime between lunch and closing time. The blood work will be zipped across the street to the lab. Then at 3:15 on Friday afternoon he'll have an appointment with the surgeon to go over the lab results and make plans. We'll learn if the surgeon is ready to schedule surgery or if the iron infusion Jamie got just before leaving the hospital last Thursday needs a little more time to get his hemoglobin to the level the surgeon wants. We're guessing that surgery will probably be the first week in December at the earliest, which would be great so Jamie could enjoy Thanksgiving. He's been asking for a big turkey dinner since at least August.
We've gotten some great TLC in the form of cards and food. Mmm food! We thank everybody for keeping us in their thoughts and prayers.
Much love,
Beth
*****
November 24, 2009
Happy Thanksgiving!
We get to have a happy Thanksgiving!
Jamie's surgery will be on December 2, after Turkey Day. We're pretty happy about that. He has appointments with his nurse and his anesthesiologist on Monday, November 30. Mom, Mema, and Grandpa are heading up to visit us tomorrow, and Mom will stay for about the next three weeks or so.
We don't know exactly when on December 2 the surgery will be scheduled; we'll probably find out on Monday or Tuesday.
Have a great holiday. Please think of us while you're chowing down on turkey because we'll be thinking of you too!
Thanks for your continued thoughts and prayers -- they really are working!
Beth
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