Home is a No-Go

My sweet husband is still not able to keep even liquids down and he's starting to show signs of malnourishment, so likely he'll start receiving nutrition via an IV today or tomorrow. In my opinion this will be good, as his body needs to heal from surgery and can't do a very good job of it if he's not getting good nourishment. I think it will make him feel better.

So he'll stay at the hospital for now - and he's not really excited about the prospect. He just wants to be home...any of us could understand....yet needs to be here. We'll explore the possibility of him going home with the IV once we see how it goes. The hope is that as his stomach gets better he'll be able to keep down liquids and make some progress.

EGD News

Thanks for all of your email responses "standing with us" in this! Daryl's procedure this morning went well. The opening from his stomach into his intestines (which was re-connected during the initial surgery) was really small, which was likely the culprit. Some of that was due to swelling. The physician was able to stretch out the opening a great deal. Daryl has been sleeping SO WELL since the procedure - I'm thankful (and he is too) that he's getting some overdue rest. He can try a clear liquid diet today, but so far hasn't been awake enough to really try anything. We're hopeful that now he can move forward and start trying to get some nutrition in again. We're blessed by your support and will keep updating his status.

Scoping the Stomach Tomorrow

Just a quick update. Again, Daryl battled nausea & vomiting today - not anything in his stomach to come up, though. He's scheduled for a scope of his stomach tomorrow to be sure there are no blockages in the area where his stomach was re-attached to his intestines during surgery and to see if anything else may be going on "in there". Too many technical medical terms to repeat all the details (I'd mess it up big time), but I will update the Blog tomorrow after the procedure.

Heave Ho

From what I understand, Daryl battled nausea just about all day yesterday. He's the type who wants to crawl into a cave and be left alone when he's sick, so Little Miss "C" and I were at home most of the day until late afternoon when she went to play and I visited the hospital. By that time he was on 3 different anti-nausea IV drips trying to get something to work. One of them pretty much knocked him out, so I came home to bed.

What's going on? Not sure. Drs want to do an Upper GI to be sure everything is passing through his system OK, but Daryl knew he wouldn't be able to keep the radioactive stuff down long enough to run the test - so it's postponed.

I'm wondering if this nausea/vomiting thing is a typical complication with Whipples, as one of the patients on our floor at Hopkins was there 3-weeks post-op because she couldn't keep food down.

It's hard to see the forest being down in the trees right now. Please pray not only for answers and resolution physically, but also for encouragement that Daryl would somehow hold on to the hope that this is only a small fraction of time. Will let you know what we find out today, as I should be with him most of the afternoon.

Thanks ya'll....

ERs & Hail Storms

Does anyone else hate the feeling of being inside a building in a windowless room and hearing a horrible storm pummeling the roof? You just HAVE to find a way to a window and see for yourself what's happening outside - and if you can't find out, it's very unnerving. Ladies and gentlemen, I give you last evening at the hospital ER! What a storm - I'm still waiting to really "check out" the hood and roof of the car to see if there was any damage.

So Daryl continued to feel bad after his episode Monday night, and after a few more bouts with nausea, vomiting, fever/chills, etc. we decided to head over to the hospital for some tests to see what's up. He's being very well taken care of. I think just getting some fluids has made some difference. So the plan is to do a few more tests and see if we can figure out what's happening.

Frustrating after having had such a great weekend only 5 days go, yet not unexpected to be dealing with a few bumps in the road after such a major procedure. We'll keep you posted...

Yes, We're Still Going to "Post" Updates

Sorry! Our updates have been non-existent for the past week and many are asking how Daryl is doing with his recovery at home. Let me update you, beginning with Daryl's new "look" in our family photo on the left. Those who have come to visit with him over the past weeks have acknowledged that they wouldn't have recognized him if he'd walked past them!


Just as a reminder, Daryl started out (prior to surgery) around 195 lbs, ballooned up to the 230's with fluids while in the hospital, and is now down around 170. Quite a shock to his sytem and part of the reason his energy level/stamina are rather low.


He had a few really good days over the weekend, getting out for a few errands with me and helping a friend do a little work in our front yard. He was even able to go to church for the 1st time since he's been home. They were good days.


Monday night he had an epidsode of illness, probably due to food he'd eaten before bed. That impacted his energy level yesterday and was a bit of a setback. So, as before, it's two steps forward and then one step back.


We are blessed with friends who have called and stopped by to keep him in touch with the rest of the world. He's talking on the phone to work colleagues and anxious to get back to doing something interesting with his time instead of sitting/laying around the house in recovery mode.


I'm hoping his food intake will increase and that his body will get the nutrients it needs on such a small quantity of food. And hopefully the warmer weather this week will give him the right environment to get out and walk some more to build up his stamina.


Your continued prayers are coveted - we're still "in this"!!! Love to all -

Home Sweet Home

(Directly from Daryl, forgive any typos) Yes, I made it home, Thanks be to God. It is so good to see trees and green stuff again instead of buildings, concrete and yellow taxis. The pain is slowing improving but still with occassional reminders that my insides have been re-worked. It still requires pain meds. I have lost alot of weight with this thing, more than I ever expected--- even Caroline can eat more than I can at a single setting at present. That should improve over time.

You all have been so good to us with your encouraging words and the cards that were sent. I really dont know how to express our thankfulness. There were many nights in the hospital that your words and prayers helped us through them. Those days and nights may have just been the worst of my entire life. Thank you so much for seeing and praying for us through them. You have no idea how dark some them were.

I really want to dedicate this blog to my wonderful bride. Many of you already know how special she is, but really only know the half of it. I am sure that some of those nights with me brought back memories for her. Most of you dont know, but eleven or twelve years ago, she lost a gentlemen that she was engaged to due to respiratory complications from lymphoma in a Unversity Hospital setting. So, those days and nights of my shortness of breath were a struggle for her. The only difference was that here lay her husband complaining of the shortness of breath while he would"encourage" the Resident Physicians to do chest xrays and give "40 IV Lasix" to get the fluid off the lungs. Of course, the short order of it all was noted in the prior blogs.
Wendy was the real trooper. Here she is 26 weeks pregnant, sleeping at the bedside in a rather uncomfortable chair that is supposed to make out to a bed with a husband that is occassionally "challenging" the Residents -- while hallucinating about some old lady coming out of the wall and why the picture frames on the wall had a better brand of martial arts than him-- beating him up during night (effects of the meds). Go figure. She was there with me through the pain and the nausea. She helped me bathe and assisted me in the middle of the night with bathroom issues. She made sure that all of my needs were met and then some. Even when she needed a break, she made sure that a family member was there for me. She cried with me and prayed with me. She was the voice in the dark of the night that when I barely grunted or sighed different, she would ask "are you ok, honey?" She was my partner in this battle : My wonderful wife and beautiful bride. I love her so much and thank my God for having her in my life for such a time as this.

Daryl

Delta = Home

Daryl has officially been "released" from Baltimore, MD and will fly home tomorrow afternoon!!!! Both of his remaining drainage tubes were pulled today so he'll be much more comfortable on the flight home. He is struggling with a head cold, so continued prayers are much appreciated.

Thank you to our dear friends who have provided buddy passes enabling Dad and Daryl to fly home with some flexibility. We're hopeful they'll be able to get on their flight as planned and spend as little time as possible sitting on the plane and in the airport.

We will post again (I'll have Daryl do it this time!) once he's home and rested. God Bless...

Benign...

Although we were thrilled when we received the "benign" diagnosis, as the agonizing days of recovery passed we couldn't help but ask ourselves if Daryl was enduring such a challenging surgery and recovery for no reason. Should the tumor simply have been watched? Would anything bad ever have happened.... anything worth enduring the agonizing recovery?

So before I left Baltimore I asked the Surgeon point blank - if the benign tumor had been left in, could it have changed and become malignant/metastatic? His answer was a quick and certain "yes." By removing the tumor, Daryl has been cured surgically while the tumor was still benign...before it had a chance to grow and spread (metasticize) to the lymph nodes or grow into other areas of the pancreas. Leaving it in would have left Daryl at a high risk for a metastatic diagnosis down the road.

So, as horrible as this experience has been for him, it was necessary and curative. I think he has to keep reminding himself of that every day!!

D-DAY!!!!!!!!!

Praise the Lord!!! Daryl is being released from the hospital today!!!!

Don't ask me what happened between yesterday and today to change things around...I'm not sure, but I'm sure not asking questions!

He is planning on spending the next 2-3 days at the hotel in Baltimore with a follow-up visit to the Surgeon on Tuesday to have his final two drains removed. If all goes well, Delta may bring him home to us on Wednesday. We'll keep you posted.

Pushed Back Again

No release right now - bummer - but the Surgeon is adamant that Daryl be/feel well before he goes....and we know that's the right thing. They're trying to figure out why he's experiencing the dizzyness and vertigo, so consulted with physical therapy. Their assessment will continue early next week. The nausea is not as bad today, I'm told, but still not gone. Hopefully he can eat more and gain some strength. Daryl's white blood cell count went back up a bit, so they're keeping him on the antibiotic.

On a personal note (hopefully Daryl will enjoy seeing this) Little Miss "C" was blessed with an Easter package from some very dear friends. She was still in her jammies this morning as she tried on her new Easter Bonnet and Purse.

Still a Bumpy Road

Dear Friends & Family - I'm safely back in Atlanta (thought I'd never make it with the weather, etc...) only to hear that Daryl has struggled with dry heaves and throwing up today. He's barely eaten anything. An ENT group was consulted and they really have no clue what's going on. He's being given something for the nausea, but says it's really not helped. And the sweats/chills are back this evening.

Here I sit at home - torn to pieces because I want to be in both places and know both need me. I know this too shall pass - just one of those steps back. He's still focused on trying to be released tomorrow...maybe being out of the hospital environment will help in and of itself. So we'll see what his surgical team says when they round in the morning.

On a positive note, as I was walking down the hallway to leave for the airport Daryl's friend Forrest was walking towards his room for a totally unexpected visit! His timing couldn't have been more perfect. Daryl wishes he'd felt good and been better company, but just to see a familiar face was "good medicine." Thanks, Forrest, for your time and effort to make Daryl's day special!

There's a Light at the End of this Tunnel

Good news early this morning! Daryl's white count has come down significantly, so the hope is to be discharged from Hotel Hopkins tomorrow!

And, as is typical, with this good news has come a morning of nausea....always something.

But we'll take the good news and make plans accordingly. He'll probably have a follow-up appointment next Tuesday with the Surgeon to have another drain or two removed, and then be released to return home hopefully on Wednesday.

Will keep you updated - I'm on my way home this evening.

Another CT Scan at "Hotel Hopkins"

"Hotel Hopkins" must be a term the physicians around here have coined and right now it feels mighty accurate!

Daryl had a great day yesterday. He dressed in his own clothes complete with the requisite ball cap and enjoyed some Internet time, computer games with my brother, reading your Get Well cards, etc. He started the IV antibiotic and we expected that "things" were looking up.

Last night around 7:00 the sweats/chills and cramping came back with a vengance after seemingly having disappeared two days back. An on-call surgeon came in the middle of the night and ordered another blood workup to be sure there's no infection in the blood. The weird thing is that Daryl never has a temperature during these "episodes" so the nurses aren't quite sure what to think.

This morning Daryl's surgical team has ordered another CT of the abdomen to look for any other potential abnormalities with the drainage tubes that are still in place. One of the drains continues to contain consistent puss, which they have assured us is the likely source of the infection. The Surgeon himself came in this morning and reassured Daryl that the antibiotic had not had enough time, that things should be getting better, and that the CT is just precautionary.

I'm sure you can "hear" it in my words....everything seems to be dragging out, his 6-10 day hospital stay now at 12 and counting. Daryl really wants to check out of Hotel Hopkins!

I'm listening to all of you and am clinging to your encouragement. Tomorrow I go home and I hate to do it - yet know I need to get Little Miss "C" her Mommy back. The Lord can take care of all the details and I pray He will, whether I have to return here or whether someone else may be able to come up and help my Dad if Daryl's discharge continues to be delayed. So again, wish I could come up with a stronger word than "thank you" to express how critically important and treasured your prayer support is and has been. We love you -