Doug Update

Doug was hospitalized on Wednesday with an infected pancreatic pseudocyst, colitis, etc, etc. After some scary moments, he’s been “hemodynamically stabilized”, his parents and sister are here, and he’s moving to a regular room. Keep us in your prayers, because, as you may remember, this can be a roller coaster.

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

One year ago this past Sunday Doug collapsed on the way to church. By that evening he was on life support and not expected to live. Little did I know what this year would bring–seven months of hospitalization. Weeks on life support in the ICU. Three major surgeries. Countless “procedures”. And at home… nannies watching my kids, laundry piles that almost reached the ceiling, and a very lonely me. When Doug came home our life changed to one of visiting nurses and my own newfound skills in changing dressings, hooking up feeding tubes, giving countless injections. I thought for so long it would never end…

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

He’s home! He’s home! He’s home! Happy dancing again!

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

Well, we had a long day yesterday with Doug. The procedure went well–the got the stent in place in the pancreas with little difficulty. Basically, it should allow the pancreas to drain out the correct way for a while and give the back of the pancreatic duct time to heal (they could see 60% of it, and it looked good–way better than we expected). Will it work or not? Well… there is no reason it WON’T work–but there just aren’t enough similar cases to have any idea one way or the other.

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!

Well, we met with a new gastroenterologist this week and they said they are going ahead on the procedure to put a stent in the pancreas. They have already done everything they can do surgically, but we had been told that they were going to wait and see how it worked. Now think they want to move forward. We were caught totally offguard–weren’t expecting any movement until next week after Doug is cleared to eat/drink fluids.

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

Doug is recovering well in telemetry. I think the good news of their not being able to do the more extensive procedure is that his recovery is moving much faster–a lot less internal damage to heal. He seems to be getting better much faster than with previous surgeries. The PCA pump seems to be handling his pain well, except at night when he can’t push the button as he sleeps. Lots of waking up. They still haven’t gotten him to sit up in a chair, although they said they would yesterday–we think they just forgot.

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!