This is the series of emails I sent out to family and friends during and after Jamie's second surgery. His surgery was on Friday, July 23. He wasn't released from the hospital until Thursday, August 12 -- 21 days later. I'm possibly missing a few emails because I don't think I saved them as I wrote them. I relied on getting my emails from other people's replies back to me.
*****
Sent: Fri, Jul 23, 2010 12:48 pm
Subject: Update 1
We got to the hospital around 11:45. Jamie was taken back to Pre-Op shortly after. I stayed with him until they wheeled him off to the OR. Surgery could take between 3 and 5 hours.
Not much to say just yet, but things are underway.
I'll send more updates as I get them.
Thanks for your thoughts and prayers!
Much love,
Beth
*****
Sent: Friday, July 23, 2010 1:44 PM
Subject: Update 3
4:30
The surgeon is just beginning to close up. The OR nurse called to say it would probably be another hour before surgery was totally finished. She (Oh...by the way...her name is Beth) said everything was going as planned and Jamie is doing well.
More later!
-Beth
*****
Sent: Friday, July 23, 2010 5:01 PM
Subject: Update 4
We're done!
Jamie has been in the room for almost an hour. He's resting as comfortably as one can expect. He wakes up every now and then, complains of being nauseous and/or hot, then falls asleep again.
The main plan worked. The surgeon was able to make the pouch out of his small intestine. So, good news!
Unfortunately, the good news does mean yet another surgery in 2-3 months. But the final surgery won't be nearly as intricate or as long, and recovery won't be as long either. Right now we're looking at a 3-5 day hospital stay.
The surgeon had planned to remove his portacath, but the surgery took a little longer than expected so they left it in. The nurses can still access it if they need to for fluids, antibiotics, etc. Having the portacath removed isn't a big deal and can even be done in the surgeon's office.
This hospital room is kinda swanky. There's carpet on the floors, curtains on the window, and even art on the wall! The tv is in a wooden armoire. Of course, the physician's assistant did say that this hospital has been called the "Ritz Carlton" of hospitals.
Thanks so much for all your thoughts and prayers; and thanks to Ms. Sandy Matthews who kept Mom and me entertained in the waiting room for nearly the entire surgery!
Much love,
Beth
*****
Sent: Sat, Jul 24, 2010 11:08 am
Subject: Saturday morning
Things are going ok. Jamie is in a lot of pain and is still very nauseous. He has taken a spin around the floor and is currently sitting up in a chair. Not much else to say right now.
I'll send an update later.
Much love,
Beth
*****
Sent: Saturday, July 24, 2010 5:02 PM
Subject: Saturday evening
Jamie's had a painful day of laying in the bed. I think his nausea has finally settled down. He's no longer hugging the little emesis tub like a teddy bear. (Seriously...who designed something so small to throw up in?) He still rates his pain around 8 or 9. This time, the pain is in his front as well as his back. Actually, I think he's complaining more about the ab pain than the back pain. Because his abdominal area hurts, he doesn't feel like sitting up in the chair or walking around. He is rolling over, switching sides every hour or so, which is better than no movement at all. He sat in the chair for about an hour after the nurse took him for a walk around the floor earlier this morning. He's been in bed ever since.
We had hoped that he'd receive Tordol either during surgery or shortly after surgery. Tordol helps relax muscles and really helped his back after the last surgery. The bad thing about Tordol is that doctors won't give it if the patient has a bleeding issue. And, apparently, Jamie lost about 700 ml of blood while in surgery. They weren't overly concerned about the blood loss, didn't even give him any extra blood, but the order for Tordol was definitely put on hold.
Jamie does look much better today. He was pumped full of fluids during surgery and came out looking very puffy. His poor kidneys have been working overtime to get rid of all the extra fluid, but they're working just fine. He's resting quieter today, mostly because he isn't as nauseous.
Thanks for all your thoughts, prayers, and texts. And a special thanks to my Oklahoma family who are super creative and sent Jamie a handmade candy bouquet. He thought it was cute! It smelled really good when I took it out of the bag. THANKS!
Much love,
Beth
*****
Sent: Sun, Jul 25, 2010 1:48 pm
Subject: Sunday update
Good news everyone!
Jamie got his Tordol. He took two turns around the hospital floor. And, he had juice and jello for breakfast and lunch.
He's still in some pain, mostly when he's in transition (bed up to standing, standing down to chair/bed).
He sat in the chair for about an hour, but he's back in bed now. Very tired from the effort of moving around.
Thanks for your love and prayers!
-Beth
*****
Sent: Monday, July 26, 2010 8:37 AM
Subject: Monday update
After Jamie's walk last night, he got very hot and very nauseous. His pain level seems to be a little more tolerable this morning, but is still complaining of being hot and nauseous. Presently, he has two fans blowing on him. With 100+ degree temperatures, ACs around town just aren't working very well.
The surgeon stopped by this morning and seemed pleased with Jamie's progress so far. His belly is soft and making sounds.
Not much else to report right now.
Thanks for your thoughts and prayers!
-Beth
*****
Sent: Monday, July 26, 2010 8:35 PM
Subject: Monday Night Update
Jamie's day has been up and down today. His pain has been better. His nausea for the most part has been less today. He isn't constantly nauseous, but he has been sick twice. He's felt better after each time.
The nurses aren't overly concerned. His belly is still soft and working like it should. He's resting quietly right now and hopefully will have a quiet night.
Thanks for your prayers!
Beth
*****
Sent: Tuesday, July 27, 2010 9:35 AM
Subject: Tuesday update
Well, we are not having a good day. The nurse is just about to shove a tube up Jamie's nose. He's been throwing up at rather regular intervals all night and all morning.
He had an xray this morning to see what, if anything, was causing the problem. Thankfully the xray didn't show a twist in his bowel or an obstruction. But apparently he has a big mass of air in his gut that isn't going anywhere.
He is not looking forward this procedure. He had an NG tube after he broke his back, so he already knows how unpleasant it is. The nurse gave him some ativan about 10 minutes ago, but it doesn’t seem to have any effect (affect?) on him whatsoever, which is unfortunate. This is definitely one of those procedures where you don't want to know what's going on.
I have to say for the record, I don't like being in the room while the nurse is trying to insert the tube, but I don't want to leave either.
My poor guy....
I hope that this is worth the uncomfortableness and makes him feel better fast.
It's in place and the air and icky stuff are being sucked out of his stomach. Hopefully he'll feel better soon. Just hate that this is the way it has to be done.
-Beth
*****
Sent: Wednesday, July 28, 2010 7:39 AM
Subject: Wednesday update
We did not have a good night. Neither of us slept much. Hopefully today goes better.
*****
Sent: Wednesday, July 28, 2010 1:34 PM
Subject: Tuesday Update 2
We are having a much better afternoon. Jamie spent several hours sitting up in a chair. Then he went for a short walk around the hospital floor. His IV site inflitrated (again), so they're hoping to use his
portacath for his IV. Good think it wasn't removed during surgery like we'd planned. It has been about two months since the port was last flushed. Hopefully they'll be able to get it working again.
He is still miserable, but his spirits seem to be a bit higher. He is getting along well with two nurses today. I don't think he really liked his night nurse all that much, which only made a bad night even worse.
Thanks so much for your continued thoughts and prayers!
-Beth
*****
Email missing
*****
Sent: Thursday, July 29, 2010 5:13 PM
Subject: Thursday update...continued
Hmm...not sure how I hit "Send" in the middle of a thought. Moving right along.
I realized at dinner tonight that I had not sent an update yet. I went to work for 4 hours and spent the entire time plodding through stuff that had piled up over the past two days. Then when I came back to the hospital, the floor looked oh so comfortable, so I took a two-hour nap, kindergarten style.
Here's hoping to another quiet night.
-Beth
*****
Sent: Friday, July 30, 2010 5:01 PM
Subject: Friday Update
Not much new. Jamie got a bag of "food" for dinner. It looks like flat Mt. Dew. It's supposed to be very nutritious. From the looks of it, I'm sure he's glad he doesn't actually have to taste it.
His biggest complaint now is his sore throat. He is very flemmy (phlemmy?). He will be very glad to have a great big glass of ice cold water.
One of my co-workers stopped by this afternoon and caught me in the middle of a nap on the floor. Hehe.
Floor naps are quickly becoming a favorite afternoon pasttime for me.
Thanks for your thoughts and prayers!
-Beth
*****
Sent: Saturday, July 31, 2010 6:12 PM
Subject: Saturday update
Not much new today. No expectations for anything to change before Monday actually. That's the bad thing about being in the hospital over the weekend. Nothing much happens.
Jamie currently has 3 bags of IVs going, 4 IV pumps on his IV pole (one isn't hooked up to anything at the moment but was earlier today), an IV in each hand and his portacath accessed with another IV. He has a lot of accessories to cart around right now.
He's very snotty and phlemmy from the tube in his nose. Thankfully the on-call doctor has ordered some Benadryl for him. Hopefully that will help cut down the snot and maybe even help him sleep.
Thanks again for all your thoughts and prayers!
Beth
*****
Sent: Sunday, August 01, 2010 2:53 PM
Subject: Sunday update
Jamie sounds like he has a really bad cold, but it's irritation from the NG tub making him snotty and phlemmy. He has been given Benadryl and it worked somewhat. He rested much quieter after taking it.
He did have his NG tube pulled out 5 cm. The on-call doctor was concerned that the tube might be situated too far down and sucking up stuff that didn't need to be sucked up.
Three nurses are now trying to find a vein anywhere to draw blood. Jamie's having a similar issue to back in December when his ostomy had some bloody drainage (dark red like old blood, not bright red like an active bleed). They're going to do a hemoglobin count on him, but first they have to get blood. Back in December, if you remember, he had some bloody drainage coming from his ostomy. They stopped the order of blood thinning medicine and the bleeding seemed to resolve itself. He had had blood drawn around 11pm that night.
The hemoglobin as lower at 11pm than it had been at the regular 4am lab. But, it didn't change much between that 11pm draw and the next 4am draw. We're all concerned, but not overly worried.
Thanks for your continued thoughts and prayers.
-Beth
*****
Sent: Monday, August 02, 2010 6:53 AM
Subject: Monday Morning Update
Jamie had to get poked more than three times before labwork could be run last night. With multiple IV sites, it's hard to find an extra one to pull blood from for labwork. The first sample of hardly 10cc of blood clotted before it got to the lab, as did the second sample. Finally a resident had to dig around in Jamie's hand for a vein. He finally was able to find a good vein and got 40cc of blood. Of course, this morning, the lab tech had no problem finding a vein and getting enough blood. But anyway, the labwork from last night came back with a higher hemoglobin count than the previous bloodwork, which is good. Jamie wasn't bleeding out from anywhere. The bloody discharge in his ostomy was just that -- discharge. Once that discharge was emptied from the bag, the bag contents returned to its usual color.
The nurse last night was AWESOME. She explained everything and even took the time to untangle his web of IV tubes. At one point yesterday, some of the tubes actually got braided together. Not sure how that happened. She also got Jamie a PCA pump so he could have smaller doses of pain med at more frequent intervals than one big dose every 4 hours. The big dose usually only lasted about 45 minutes and then he'd have to wait hours to get another dose.
I'll probably send out another update later this afternoon/evening once I hear what the doctor had to say this morning. The surgeon/PA didn't come in before I left to go to work. I'm hoping that he'll at least have his foley catheter or JP drain removed. That would be a start, and one or two less things to have to deal with.
Thanks for your thoughts and prayers!
Beth
*****
Date: Mon, 2 Aug 2010
Subject: Monday evening update
Good news everyone!
The NG tube has been removed!!!! Happy day! Jamie has also had one of the IVs removed -- the one that was supplying the replacement fluids he lost from the NG tube. No NG tube, no need for replacement fluids. The surgeon said the foley catheter and JP drain would likely come out tomorrow, and Jamie will probably start liquids tomorrow too. Mmm...tasty dishwater soup and jello.
Now his throat and nose can have a much deserved rest. He already sounds better without the tube irritating his throat, but he still prefers not to talk a lot. He has had a few ice chips, but not many. They don't want to upset his stomach with too much too fast.
He is increasingly tired of being in the hospital, but maybe now we're on the downward slope towards the end of his stay.
Thanks for your continued thoughts and prayers.
*****
Sent: Tuesday, August 03, 2010 6:16 PM
Subject: Tuesday Update
Doing better today. Jamie's catheter is finally out.
Not much else to say. :)
-Beth
*****
Sent: Wednesday, August 04, 2010 1:25 PM
Subject: Wednesday update
A step back...
This morning Jamie was given Vicotin by mouth. He was fine for a while -- got up, used the bathroom, washed off, had his bed changed, had his IV site changed. Around 11am he threw up. And then he threw up again about an hour later. He has thrown up three times so far, but hasn't thrown up much. The nurse said it was mostly sputum with a little bit of stomach contents. There isn't much in his stomach to throw up, except maybe all the snot and congestion caused by the NG tube irritating his nose and throat. I know that snot on an empty stomach can be nauseating.
It could be that the Vicotin made him sick. Pain meds are great on an empty stomach.
The nurse is concerned though that he is running a fever. His temperature was checked about 10 minutes ago and was at 103. She called his doctor and physician's assistant, but they are both in surgery right now.
We'll probably hear from them later this evening.
I'll send an update when I learn something new.
Beth
*****
Sent: Wed, Aug 4, 2010 9:08 pm
Subject: Wednesday night update
After some tylenol, Jamie's fever seems to have broken. He hasn't had his temperature checked, but when I touched him he didn't seem nearly as warm as he had been.
We were able to take one turn around the hospital floor. Hopefully he'll feel like having another before bedtime.
He's resting quietly for the moment.
His night nurse reassured us that his stomach issues today were probably from the Vicotin on an empty stomach. I think he probably worked himself up into a bad mental state worrying that the doctor might order the NG tube put back up his nose. The mind is a powerful thing and thoughts can make us feel really bad sometimes.
Thanks for all of your immediate thoughts and prayers (and for passing our worries to lots of prayer chains and people who don't even know us).
Much love,
Beth
*****
Sent: Thu, Aug 5, 2010 2:52 pm
Subject: Thursday update
Jamie still isn't feeling great today. He is mildly nauseous and has a fever, though not as high as it was last night. The plans are to wean him off the TPN (liquid food) over three hours (about 2 hours left) and take the IV out of his port. The doctor is certain there is no infection in his incision. The next thing to rule out is an infection in his portacath. The longer it is accessed, the greater the chance of it becoming infected. So, even if it isn't infected they'd rather not keep it accessed any longer. We also need to make sure he walks and does his spirometer exercises to keep his lungs working like they should.
Don't want him to end up with pneumonia.
Jamie had a few spoonfuls of yogurt and about half a container of milk. His stomach is handling the heavier food so far. He was happy to get something other than clear liquids. All the clear liquids (except the nasty broth) are horribly sweet. Horribly sweet doesn't sit well on a tender stomach.
He's taken two walks around the hospital floor. Walking helps his back more than anything else.
Thanks for your continued thoughts and prayers!
Beth
*****
Sent: Thursday, August 05, 2010 5:30 PM
Subject: Thursday night update
Jamie has had blood cultures taken and a culture taken of the needle in his portacath to see if he has an infection. Preliminary results will be back tomorrow. The plan right now is to have his port removed tomorrow sometime as a precaution. Central lines are susceptible to infection
He's feeling a little better tonight. He was able to eat some applesauce and drink some milk. His stomach was better able to tolerate Vicotin after he had some thicker food. The Vicotin, because it has tylenol in it, has helped bring down his fever.
The doctor stopped by this afternoon and was pleased with his progress so far. He checked out the surgery site and said the staples could come out. So, a little while ago, the nurse took Jamie's staples out.
We've been on three walks so far and hope to go on one more before bedtime.
Here's hoping that progress continues!
Beth
*****
Date: Fri, 6 Aug 2010 05:31:19 -0700 (PDT)
Subject: Friday morning update
Plans for the day:
Jamie's getting shipped across the street to Forsyth Medical Center for some scans of his belly to see if he has fluid build-up or an abscess that might be causing his fevers (his temp was back to normal at 7am).
Because the veins in his arms are increasingly difficult to access, he will have a PICC line installed.
If the scan shows an abscess or fluid, he will have a drain put in his belly. If the scan doesn't show anything, then the doctor will assume that there is an infection in his portacath and it will be removed.
He will be started on anitbiotics regardless.
The doctor is still feeling good about his progress. His belly is still soft and making sounds. His ostomy is working fine. His nausea is milder -- he has a sensitive stomach even without surgery. Full liquids sat in his stomach fine. He hasn't had anything to eat or drink since midnight last night in case he does go to the OR to have his portacath removed today. Jamie might even get food to chew after today's procedures.
Mmm food.
I'll send another update later this afternoon.
Beth
*****
Sent: Friday, August 06, 2010 10:40 AM
Subject: Friday afternoon update
The CT scan was clear. Jamie has is PICC line. We're just waiting to see when he'll go down to the OR to have his port removed.
Thanks for your prayers!
Beth
*****
Sent: Saturday, August 07, 2010 4:39 PM
Subject: Saturday update
Nothing new to report. He's feeling dandy, but wants to go home sooooo badly. We're guessing he'll get to go home Monday at the earliest. The on-call doctor this weekend can't really make any long term decisions because the on-call doctor isn't Jamie's doctor. We have to wait for Jamie's doctor to write the discharge orders.
Being in the hospital and being mostly fine is sooo incredibly boring.
-Beth
*****
Sent: Mon, Aug 9, 2010 12:27 pm
Subject: Monday update
All weekend we got our hopes that that Jamie would be discharged on Monday. The doctor dashed those hopes this morning. At the earliest, he thinks Jamie could be discharged on Wednesday. Since he has no definitive clue why Jamie spiked that 103-degree fever last week, he wants to keep him in the hospital even though Jamie hasn't had a fever (not even a low-grade one) in the past four days. The plans are to take Jamie off antibiotics to see if the antibiotics are what is keeping the fever down. In my opinion, if that's the plan, then they also need to withhold Vicotin and Percocet as well, since both are fever reducers. The doctor has to squeeze Jamie's port removal into the OR schedule sometime either today or tomorrow or Wednesday or the 32nd of Octvember. We don't know.
We're tired. We're bored. And, we're aggravated.
-Beth
*****
Sent: Monday, August 09, 2010 7:12 PM
Subject: Monday night update
Surgery for port removal is scheduled for tomorrow morning at 7:30am. At least he doesn't have to wait all day!
Thanks for your continued thoughts and prayers.
Beth
*****
Sent: Wednesday, August 11, 2010 8:24 AM
Subject: Wednesday update
Best news ever: You get to go home today!
Worst news ever: Oh, wait. We changed our minds. Maybe you'll go home tomorrow.
First, he was told by the nurse that he'd get to home today. Then the doctor said he wanted to keep him another day to watch his kidney function. Jamie's creatinine level is higher than it should be. Hmm...why might that be? Because he's been on two very powerful antibiotics for several days. Strong antibiotics will do that to the kidneys. His doctor is going to confer with a kidney doctor. Good news is that Jamie hasn't had any problems going, and the amount and color seem to be normal.
As far as we know (which of course, is very little), they didn't test the creatinine level before he started the antibiotics to get a baseline level
So, he's stuck in the hospital for another day, feeling absolutely fine other than the fact that he's about to go nuts.
Thanks for your thoughts and prayers.
Beth
*****
Sent: Thursday, August 12, 2010 7:42 AM
Subject: Thursday update
Best voicemail I've ever received at work:
I'm home!
