Oh, I can’t find the list I used to send to under “Doug Updates”, so if any of you has that list from, say, November 2005, could you send it to me? For some reason, AOL doesn’t save the addresses attached to email you archive.

–Kay

Want to refresh your memory about what this is all about? You can start here:
http://www.brainflak.com/doug/?m=200501

But here we are one year later–ta da! Doug is well! We haven’t gotten the official “all clear”, but his last CT scan in December looked great. Unexpectedly, blessedly, great. The stent seems to have worked, the pancreatic leak is closing or closed. One year later normal life is resuming. He actually hogs the blankets again–I love it!

I will never be the same person. I will never take my life for granted, or the lives of those I love. I cherish every single day in a way I never did before.

Thanks so much to all of you who supported me, who supported Doug, who loved us and our boys during this year. Cards. Gifts. Meals at our door. Even funds when I couldn’t pay all the bills. I was amazed, humbled, grateful at the grace I found in family, church family, friends, and even strangers.

Last week I took our 2005 wall calendar down from the door to the kitchen. Every page was covered with doctor’s pager numbers, insurance information, Doug’s latest room assignment, medication refill numbers, the number of the nanny agency, and the like. Without further ado, I walked out the back door and slammed it into our trash barrel. Welcome to 2006! Let’s never do this again…

Blessings and peace,

Kay Barre

One procedure next week… outpatient removal of the stent. Follow up with CT scan periodically, continue follow up with our surgeon. We are hopeful that this last procedure may have “fixed” him… so keep praying, cross your fingers, do whatever it takes. Is our year of pancreatitis over at last? Stay tuned and find out!

Thanks for all your support,
Kay

Then they wanted to take him straight to get a PICC line put in his arm, because his fever was getting worse and they wanted to pull his central line. I chased around the hospital trying to find him for a while because they needed me to sign the consent since he was sedated, but eventually found him in the GI lab. The PICC line went in just fine (and I LOVE Dr. To, my favorite radiologist, because he lets me hang out while they do it, rather than wait in the waiting room. Plus he is fast!).

By the time we got back to his room, his fever was going up–103.4, his blood pressure was going down, and he was getting a bit loopy. Doug told me a very detailed explanation of how peeing is like betting on college basketball games, because you aren’t allowed to come from the future to do it. Unfortunately, once his fever went down, he had lost all memory of that vital knowledge.

Anyhow, because of his history with infection, the doctors reacted fast and left tons of new orders–antibiotics, antifungals, blood pressure meds, blood plasma, etc.–and transferred him to ICU. Of course, by the time we got him moved there, he was really fine–fever down, pressure up, resting nicely. So he spent the night in ICU. As the head nurse say who came by for a visit, “We always enjoy seeing you guys!” Lol.

He should be back to a regular room for today, but by the time we ran around and got everything set last night I was up very late… so I took a short nap this morning before I’m heading back. I talked to his nurse early, and he’s doing well, just waiting to move to a regular room when one becomes available. Now it’s just another round of our favorite game, wait and see!

The procedure is under general anesthesia, but done endoscopically rather than surgically (as I understand it). There are several possibilities about how damaged the pancreatic duct is, and when they get in there to visualize it, they will hopefully be able to see the extent of the damage. The stent will (in some scenarios) give the duct some support and time to heal. The bad news: Doug was just starting to run a fever again last night. Infection?

Unfortunately, we haven’t had a lot of chance to talk to this new doctor. Our surgeon has been out of town at a conference, and won’t be in until this afternoon–but this is his handpicked guy, not the usual one at the hospital, so obviously the surgeon thinks he’s good.

Anyhow, I don’t have a lot of time to write as I’m on my way out this morning, just to say, keep us in your prayers.

–Kay

We still don’t have any word on the efficacy of what they did. The Sandostatin injections he gets suppress pancreatic function (to allow healing), and the drainage from the surgery needs to be gone before they can tell if there is new fluid from the pancreas. The surgeon on Tuesday we should know in a week… I hope that holds true.

A homeschooling friend came to watch the boys last night (thank you, Erica!) so I could spend an hour or two with Doug. We watched Alias… he must be feeling better, because we had a long discussion about how an EMP pulse would have disabled the electronic timer on the bomb. When your geekitude comes out, you must be healing well….

I’ll keep you all updated. Keep us in your prayers, and let’s keep hoping the alternative surgical measure worked!

The main problem is pain control. Because he’s had so many pain meds over so many months, he requires more to have any relief. I’ll see how he is this morning, but last night he was not happy–even with a PCA pump he was in a lot of pain.

I can’t go in to be with him today… Marilynn and Laura are going home, and I don’t have childcare. I have coverage tomorrow and Monday, so I will get to see him then at least. So I’m taking the boys to their regularly scheduled activities for Thursday–three hours of preschool for the oldest, swimming lessons in the afternoon. I hate days I don’t get to see Doug, though it’s nice to spend time with the boys. But I worry the whole time.

And just to let me know that my Doug hasn’t changed through all this… when I went back the first evening while he was on the respirator, he had woken up because they cut down the sedation. What did he tell me first? That I had to pick up some important comic books for him on Wednesday–he put post-its on our bathroom mirror with all the info.

If we hadn’t done this three times before, I don’t know if it would seem better or worse. At least I know the drill by now. The respiratory therapist asked me if I was a respiratory therapist after I talked to her. The nurse wanted to know if I was a nurse after my questions about his dosage. Nope, I said, I’m only an expert in the treatment of acute necrotic pancreatitis.

So keep us in your thoughts and prayers!

However, the bad news is: the surgery was not as successful as we would have hoped. When they went in to find the fluid collection to drain, they couldn’t find it, or where the pancreas is leaking. There was no discrete pseudocyst, as they thought. And the pancreas itself has adhered to the artery that feeds the spleen with tons of scar tissue–his abdomen is a mass of “adhesions” as they call them because of all the major damage. So they couldn’t poke around too much to find the leak, or they risked tearing the major artery (and he had lost a lot of blood as it was). The pancreas itself was also very inflamed, much more son than they expected, and they didn’t want to disturb it too much either. So–the doctor basically blindly tried to suture up the open side of the pancreas that he could get to. There is a chance that he just managed to catch the place it is still leaking. It will take a week or more to tell if it worked.

Otherwise, we may need another procedure. The surgeon is talking about one where a gastroenterologist would go in endoscopically (down the throat) and enter the pancreas from the front, then try to follow the little ducts up and find the leak, then glue it shut from the inside. Really. Glue. However, he isn’t sure that this hospital has a doctor with the specialized skills needed to do the procedure… so again, we may have to go elsewhere if Doug needs this.

We just don’t know yet. Keep praying for us.

It is all so disappointing. We had such high hopes that this was going to be the end of our travails. Now Doug has had major surgery, incredible pain, at least two-three weeks in the hospital and a long painful recovery–and maybe for nothing. I absolutely dread when we have to tell him that the surgery wasn’t successful. He is going to be devastated… sigh.

That’s all we know tonight. I am exhausted. My mother in law and sister in law are here until Thursday, but I got a call that my step-mother is coming out on Monday to stay and help me out for two weeks. I am so glad… it has been 10 months of this.

I’m still trying to line up help with childcare tomorrow and then next Tuesday and following. Let me know if you are in the area and want to sit with two active little boys!

Thanks all! Doug is really doing well, looking forward to being home,
even though he has to go back next week. We are very hopeful that this will be our LAST go around with the hospital. Keep praying for us!

–Kay

Within minutes of sending my e-mail last night, a friend from our local homeschool group IMed me to offer to watch the boys today. So between my secretary in the morning (dear Bonnie!) and Leah all afternoon (she’s a saint, I tell you!), I got to be with Doug and meet with all the doctors today.

Basically–the procedure yesterday went well. Between the drainage and antibiotics, he was feel really good today. Except, of course, his side hurts like crazy from the procedure itself. It was good to see him feeling more like himself, after being pretty much sleepy and out of it all day yesterday.

The upshot is this: Doug will be having surgery in the next couple of days to attach the open portion of his pancreas to his intestine–it will basically drain internally–which it is supposed to, being filled with digestive juices anyhow. But it won’t (hopefully) leak into his abdomen anymore and keep making pseudocysts. They’ve waited this long for surgery because a–there was always the chance it might heal on its own; and b–they wanted him healthy and strong before an additional major abdominal surgery. The surgeon thinks it will go well, and after this he’ll be pretty close to back to normal. It will involve about 2 weeks in the hospital after surgery, plus of course recovery time at home.

I’ve got our ex-nanny coming tomorrow to babysit, and I’m going to try to take the boys to their regular stuff on Tuesday (unless Doug is in surgery, then I need to be at the hospital). Then I need to set up childcare for the next couple of weeks, at least. Unfortunately, our great nanny Crystal is back in school, so she can’t come back full time. In emotional terms, the boys are OK for the most part, Kieran is worried but understands that they are trying to get Daddy all better.

Keep us in your prayers, and I’ll keep you updated.

First we got to the ER (luckily it was almost deserted at 7 am) and had to get through the triage nurse. I filled out the form, explained that we had instructions from our surgeon to go to the ER when Doug got a fever above 101, that he was recovering from acute necrotic pancreatitis. She replied “Fever? Why didn’t you just give him Tylenol? You should always try that first!” I explained again. She replied, “Does he not tolerate Tylenol? Why is he even here then?” I explained that our surgeon needed to be called, he had all the information about what tests we would need. She answered, “Him? He’s not on call tonight. You’ll need to see whoever is here.” I patiently tried to explain again while she looked suspiciously at us, then finally brought us in to a room and said that she needed a urine sample. Argh!!!

I was praying like crazy for a doctor who knew our case to walk by–no such luck. Then I remembered that our surgeon has his pager number on his office answering machine. I called, got his number and paged him… he answered in a couple of minutes. Guess what? He was on the third floor! He came down, got everyone straightened out, and suddenly we were talking to an actual ER doctor, having blood cultures taken, and en route to a CT scan. Annoying triage nurse disappeared.

So the upshot–Doug has another pseudocyst, another infection somewhere. After a whole day of tests, we finally got in a room, but no word on when he would have the draining procedure. I left to try to go rescue our friends Jack and Jean who had been patiently watching our two boys (and their two girls) at our house all day, after relieving the “morning shift” of our friend Cheri. As soon as I got home Doug’s nurse called–they were taking him for the procedure, and he wanted me there NOW!

I frantically tried to find someone to babysit, with no luck. Out of town, no car, severely allergic to cats, on the East Coast, no answer… there was no one. I burst into tears–and Jean and Jack heroically offered to stay as late as I needed.

I rushed back to the hospital, just in time to miss Doug going into the radiology room. Basically, what they do is take a big old needle and drill a hole in his side (guided by x-ray) into the abcess, then drain it. They wouldn’t let me back with him, but a very nice receptionist took word to him that I was outside waiting for him. I paced worriedly until the doctor came out–the pseudocyst was the size of a peach (about 5cm diameter) and seemed to be uninfected. Where is the infection? We still don’t know! We’ll get to talk to the Infectious Disease doctor tomorrow.

During my wait for Doug three nurses from our favorite unit (3F–you didn’t know we had a favorite unit?) walked by and said “Doug is here? I hope it’s outpatient?” I explained we had been admitted today, and they said it was their fault he was back–they jinxed us because they were talking about him earlier today, wondering how he was doing. I laughed; they sent best wishes. Pretty scary that we know such a large percentage of the hospital staff by first name!

So after the procedure we went up to Doug’s room, got him settled, talked to the weekend shift hospitalist (Dr. Mohammedi, I think it is). It’s back to the same grind–IV antibiotics, dilaudid for pain, fluids, rest. Doug is in a lot of pain, and very very sad to be back in the hospital. We won’t know more about our plans until I get a chance to talk to the surgeon tomorrow morning.

Of course, in the midst of all this I’m frantically trying to find someone to preach for me tomorrow so that I can be there to talk to the surgeon. Oh yes, and set up child care for the next several days.

I am exhausted, wiped, and I forgot how horrible it is to come home alone and leave Doug at the hospital. I forgot how terrible it is to be torn between church in the morning and being with Doug at a critical moment. I forgot how painful it is to come home and tell the boys that Daddy won’t be home for a few days. Hopefully, a few days.

I feel like I’ve been hit with an emotional Mac Truck. How can we do this again? When will it end? Doug is a wreck–he so did not want to go back into the hospital. I just keep on praying, praying, praying… pray with us please!

The good news is: Doug is healing well. The doctor’s are very pleased with his progress. He just had his feeding tube and his last drain pulled out on Friday. But the big hole where the drain was is still there–it is draining pancreatic fluid. At this point it is looking likely that Doug will need one more surgery to attach the open part of the remaining pancreas to his bowel, so he won’t need an external drain. So… either the hole will close, it will heal and all will be well. Or, the hole won’t close, and he’ll need surgery. Or, the hole will close, and it will cause an abscess and he’ll need surgery. But we’ll know by the end of the month if another surgery is needed or not. Keep praying that it will just resolve itself–we really don’t want to have to do surgery again, even though the doctor says this is an easy fix.

Other than that, he’s continuing to gain strength. His weight loss is slowing down (a good thing). His endurance is much better now, but he does tire easily. Doug still can’t lift, bend over, or chase after the kids, so we still have a nanny–she goes back to school in September, and we’re hopeful he’ll be able to watch them on his own by then. He is still diabetic, and needs insulin injections and medications. The doctors say that it will be a year (that’s January, folks) before he is at normal health and energy levels, but the diabetes is likely here for life.

Thanks for all your care and prayers. I’m finally getting back to my normal work schedule (minus occasional doctor’s appointments) and we even went to the Comic-Con last week. Six months ago it would have seemed impossible. Thank you for the prayers, and we’ll see in a month… if he doesn’t end up in surgery, this may be the very last e-mail you need to read from me! Keep your fingers crossed!

Blessings and Peace,
Kay

(Doing the happy dance!)
He’s home, he’s home, he’s home!!!!

Whew! Got that out of my system!

For real–still waiting on the home health nurse to show up, hook him up to his feeding tube, teach me about changing his dressings, how to maintain the drain, etc…. Lots of practical nursing for me in the next couple of–weeks? Months? Who knows? We can’t leave the house because of the feeding tube (though we try to get a dispensation for two hours and try to get to StarWars). The tube feeding has to be constant to maintain his blood sugar evenly so the insulin will work. But…

(Doing the happy dance!)
He’s home, he’s home, he’s home!!!!

Thanks for all your prayers and support–please keep it going until we are through all this! We really can feel how much it has helped.

What does all this mean? He may come home next Monday! Yeah! Three cheers! Please keep us in your thoughts and prayers this weekend–we don’t want the rug pulled out from under him again.

Doug’ll be pretty limited in his activities for a while. I asked when he could lift heavy things (thinking–small children. Needs to be able to pick them up.). The OT person said to ask the surgeon, but her estimate is 3-6 MONTHS since his abdominal surgery was so very extensive! So we may need to have a nanny for that long! Doug will be here to supervise, but can’t pick up the little guy (not so little now–25+ pounds!) to change diapers, etc, until he can run after them and lift. As far as eating real food goes, the doctor says that it is far to soon to even discuss it, and that “People can live forever on feeding tubes.” Yes, I know–but we need a normal life again, too! It is hard to get out and around while carrying a heavy automatic food pump the size of a lunchbox and a big bag of liguid food. So hopefully before Doug goes home we can have that talk. For now he is also on long acting insulin shots at night, and four checks and injections if needed during the day. And we are both so needle-phobic, LOL! Well, ya do what ya gotta do.

Wow! It’s a lot for a guy who was completely healthy four months ago. I know that he doesn’t want to end up a “sickly” person–so keep praying for ongoing and full recovery. They’ve told us often that it will be a year of recovery. We want it to be back to a relatively normal lifestyle!

Blessings to you all!

The church address is:
Aldersgate United Methodist Church
1201 Irvine Blvd
Tustin, CA 92780

Questions regarding the in-church account may be directed to the church administrator, Gail Kendall, at AUMCtustin@aol.com.

Thank you for your wonderfully positive response to this call.

Sincerely,
Janet Prichard