Thankful

Today I just wanted to say thanks to all the people who have loved on our family so well the past couple of months-- from family members who have come in at the last minute to lend a hand or just be there for encouragement to our church family who has truly walked with us on this long journey. We have received notes of encouragement from all over the country, literally. My girls have been loved on so well by friends who took them to play so I could be at the hospital. Daddy's co-workers have been super sweet in calling to check on him faithfully and letting us pester them as we try to figure out all the logistics of Daddy going on disability and/or retiring (and here's a shout out to Ida who has been incredible and really taken care of the logistics for us). I have just been thinking about this today, and overwhelmed with God's goodness to our family so I wanted to say so. I imagine that if you read this blog, then you are a part of that and we are blessed by the time you have taken to lift Daddy and us up in prayer.

PS -- There's not much change with Daddy today but we had a productive meeting with his surgeon and the nurses to get us all on the same page and make sure Daddy knows what he has to do to get out of the hospital, and we know best how to help him.

One step at a time

Daddy seems to be progressing a little bit every day. They currently have him on continuous feeds through his stomach tube, so he's feeling pretty full and not very interested in eating, but he is trying to eat a little. He was up several times today for 1 hr+ stretches and took a couple of walks. He is still very weak, but that is not unexpected based on all he's been through plus not really having much nutrition for nearly 2 months. I spoke with his surgeon for quite a while yesterday (all of the following is my translation of the medical language and may not be precise), and his surgeon indicated that Daddy's biggest challenge right now is lack of nutrition. For some reason, his body has not kicked back in and accepted the artificial nutrition very well -- this is probably partly due to the effects of chemo on his body. Also, when someone is malnourished, fluid is more likely to collect in the body which makes it easier for infection to harbor which can lead to more complications (as we have experienced). There are some signs that maybe his body is starting to accept the nourishment so we are hopeful. The dr. indicated that it takes months to correct lack of nutrition so regaining his strenght will take some time. Daddy has been in good spirits and more alert the past couple of days. We are still aiming for him to go to rehab sooner rather than later where they can help him get strong enough to come home. We continue to pray for healing and rest, and we continue to be overwhelmed and blessed by the support we have received from friends and family.

And we're back out of ICU again...

They moved Daddy back to the 6th floor today, although we still aren't clear on where the infection was/is. We hope that we'll get more answers Monday or Tuesday, when the lab results come back. Weekends in the hospital seem to be rough, especially if you're trying to get information! This afternoon, he was more alert (than yesterday when he was out of it all day) although still tired. He got out of bed and sat up for about an hour this morning. He did complain of tightness in his chest before they moved him out of ICU, so they did an EKG which was normal and decided that he was stable enough to move. We really don't know much more than we did a couple of days ago, except that they started a new antibiotic. I also noticed that he was much less swollen in his extremities today -- his feet looked much better than they have in weeks but he is still complaining of being bloated in his stomach. He has a lot of challenges ahead of him, but we are hoping and praying that this week he can definitively turn the corner for good. Mom has had a rough couple of days because Daddy has been very up and down since Thursday, and could use any encouragement that you are able to send her way. Email me offline if you need her address. Thanks again for all the faithful prayers and encouragement.

Brief update

So this is what I know: they think Daddy has an abscess on his liver that may be the source of the infection. They removed 3 1/2 liters (yes, you read that right -- three and one half liters) of fluid from his abdomen earlier today without putting a drain in (he had a blood thinner early this morning so they couldn't put a port in). So that explains why he had some difficulty breathing yesterday, and probably why he had chest pains. They did a CT scan that showed no evidence of a blood clot in his lungs (which was apparently a concern). He still has a blood clot in his leg that hasn't resolved. They put Daddy on a new antibiotic, and took him off the others that he has been on for 12 days. They have an infectious disease dr. on the case now who seems to be leading the charge in trying to figure this whole thing out. He is back on a liquid diet for now. Scott and I went to visit him tonight, and while he was obviously weary and discouraged, he sat up and talked to us for a while -- the longest (lucid) conversation I've had with him in weeks. He seemed more like himself, albeit exhausted and frail. Hopefully by Monday, we'll have more specific answers and they will be able to get on top of this infection that keeps haunting him. Will update as we know more.

And we're back in ICU

Apparently, Daddy has an infection in his abdomen -- not sure if it's something new or if the other never really cleared up. They did say he has less fluid there than last time. And he had chest pains last night so they moved him back up, with tentative plans to drain the fluid again. They have called in an infectious disease dr. to consult so hopefully this time there will be some resolution. Yesterday morning they took out the drain to his lungs and were talking about sending him to rehab today if there was a bed open, but he did not have a good morning when I was there yesterday and, personally, I was not overly optimistic that he would be in rehab today. It seems that we are stuck in the same cycle -- he shows signs of infection, goes to ICU, they seem to treat it, he seems better, but within the week he's showing signs of infection again. My mom is exhausted, and we are all quite tired of being up at the hospital. We appreciate all the people who have been praying for us faithfully. Will update when I know something else.

And we're back on the 6th floor...

They sprung Daddy from ICU on Sunday night, and he's been doing fairly well since. He's down to 1 IV and the drain in his side to drain fluid from his lungs. He has been sitting up for several hours each day, and he took a couple of walks today. For the past 2 days, he has been eating 3 small meals a day with small snacks. Since they took out the PICC line, which was providing him with most of his nutrition, eating is extra important and he seems to be tolerating most foods well so far. He's been somewhat groggy/tired which is likely a combination of some of the pain meds he's taken to help with the pain from the drain in his side, and just being worn out from all that his body has been through. Overall, though, he's not loopy like he was -- he seems to be more himself and more focused on recovering. We are just taking it one day at a time and rejoicing in the small steps forward for now.

One day at a time

Daddy was taken back up to ICU this morning after he developed chills and a fever. Doctors suspected the culprit was an infection that stemmed from his PICC line (which has been in for over a month now). The PICC line was removed, a dose of a powerful antibiotic was given and he'll be in ICU for 24 hours (give or take) for monitoring. He continues to have some fluid on his lung, but the earliest they can do something about that is tomorrow morning because Daddy's been on blood thinner for the clot behind his knee. It just seems to be one thing after another.
He was able to eat a little bit of this and that today, so that's a good sign...the more we can get food in him, the better! Please continue to pray for healing and resolution of these various issues. Daddy's frustration is evident (although certainly understandable) and our family is weary. It's so easy to be discouraged by these setbacks, but pray that we all will find hope, peace and encouragement in the day to day.

Back in ICU

Daddy is back in ICU. They think it's another infection but are running tests. That's all I know right now. One of us will post more later.

The Latest Speed Bump

So, you know how I said that if you go visit, invite Daddy to take a walk with you? I was just kidding. Because now he's bed-bound for a few days due to a small blood clot in his leg. Otherwise, he's eating more (and tolerating it), seems to be feeling better, and is definitely getting his voice back. They are going to send him to rehab before they send him home -- prior to finding out about the blood clots, it looked like he might go to rehab next week, but now that has probably been postponed another week. The doctors/nurses indicated that Daddy's likely had a rougher time recovering because of all the treatment he had for the cancer. I have been reading some blogs and other online support info about other patients who had Whipples, and I had noticed that theme as well -- i.e., the people who had a Whipple because of pancreatic cancer didn't seem to bounce back as quickly as those who had it for other reasons (pancreatitis, benign tumors). Visitors continue to be welcome -- he seems to have perked up a little the past couple of days, and always benefits from short visits! In other news, Mom's birthday is on Monday, so remember to wish her a happy birthday! (A good daughter wouldn't discuss her mother's age, but it's a big birthday for her.)

Moving Forward Again?

I say that tentatively because it seems that every time Daddy is doing better, something else happens, so I think we're all proceeding cautiously. However, in the past 2 days, several very good things have happened. They did a CT scan to make sure that there is no more fluid collecting in his abdomen or lungs, and it came back clear so they took out all the drains. Also, Daddy has been given the all clear to eat "whatever he wants," and while he hasn't taken full advantage of that yet, he has been eating some solid foods at every meal. He still has the drain in his stomach, but has not been using it (i.e., his digestive system is processing the food). He is still getting a little loopy in the afternoons/evenings, and we aren't sure why, especially since it's not consistent, but he definitely has periods where he's lucid and interacts like normal. He's also starting to get his voice back so it's easier to have a conversation with him. He definitely benefits from visitors, but tires easily so shorter visits work best for now. If you do visit, invite him to walk with you -- he may decline, but that's one of the things that will help him get home quicker. Thanks for your prayers -- keep praying!!

Musical rooms continues...

Daddy got moved back to his old hall last evening, and is actually across the hall from his last pre-ICU room. He seems like he is feeling better, although he still has many tubes in him. He is pretty lucid from the morning through early afternoon, and then he starts to get a little loopy. We suspect, after consulting with the nurse and Wendi's Dr. friend, that it is likely due to his electrolytes being off since he lost so much fluid the past few days. Overall, he seems to be in better spirits and has not really complained of hurting. His dr. will be back in tomorrow and we hope to get a better understanding of the plan for the week (i.e., when he can start eating more, when the drains will come out, etc). It seems to be difficult to get info on the weekends, which can be frustrating, although his nurse today was super nice and helpful. Please pray for strength for Daddy, and for us to continue to see God working through this situation in our family. I think we are all fighting discouragement as he enters week 5 of being in the hospital.

Out of ICU

Well, Wendi tried to update from the hospital and had some technical difficulties, hence just the header below. The update she tried to post went something like this (although this is my version based on the info she relayed to me)...
Daddy is out of ICU and back in a regular room. We have had a hard time getting info today (since they missed the dr. who rounds at the crack of dawn, literally), but Mom requested that they move him back to the last hall he was on prior to ICU because the nurses there really seemed to have his back, so that's in the works. Otherwise, he was really sleepy and out of it still, still has multiple drains in him and is still on oxygen but we were told he's doing too well to stay in ICU. They (Mom and Wendi) were going to work on getting him up and moving today some, and maybe eating/drinking some more.

Musical rooms--back to the 6th floor

Small steps

Today was not the leaps-and-bounds improvement we were hoping for but Daddy is doing better overall. He had fluid on his lungs that they had to remove today, and while he had more holes poked in him to drain the fluid, he can breathe better. They are focusing on breathing treatments and strengthening his lungs. They sent the fluid from his lungs off for culture to make sure he doesn't have pneumonia. In the meantime, they confirmed that there was infection in the fluid around his liver and they continue to treat that. He looks better, and was a little more active today. He listened to his ipod and watched a little TV (both of which he has mostly resisted in his entire hospital stay thus far). Tonight when I went to see him, he was in a good mood although a little loopy -- they are still working out the kinks in his medicine, and he's just exhausted. Keep praying for his body to rest and heal, and for rest for all of us as well!

Resting and Stable

Daddy is resting and stable now. They were able to do the procedure and inserted 2 drains in his abdomen because they found 2 places where fluid was collecting that were not connected. They think that the infection was in the fluid and the fluid may have leaked from the pancreas, but once they remove the fluid and the antibiotics kick in, the pancreas should heal itself. It takes 5 days to get the official lab culture results, the signs seem to be pointing to this fluid as the culprit of the infection. His fever broke during the procedure and his vitals have been stable all afternoon. He said right after the procedure that he feels better already, and the dr. said he should feel significantly better tomorrow. Before all of this started, he was actually hungry this morning, and the endoscopy yesterday showed that his stomach is working like it should, so hopefully tomorrow he will be back on the road to full recovery. He will be in ICU for 3-4 days (i.e. through the weekend) so he can't really have visitors. We understand that there are people who want to visit the family, and we welcome visitors -- the best time is around meal times, when we go down to the cafeteria. Kevin is our point person through Saturday morning, if you want to come visit and need to call someone to find us. Thanks for all the prayers -- we have been really blessed by the support we've received from family and friends, and see God meeting us in this.

Moved to ICU

Just spoke with Wendi and they moved Daddy to ICU because they can't seem to stabilize his temperature and heart rate right now. They hope to drain the fluid this afternoon if they can get him stable. Please pray for him.

Not the Ideal Birthday Present

So today is Daddy's 65th birthday and to celebrate, he got moved to a higher level of care. Last night he spiked a fever and his heart rate shot up so they did a couple of CT scans and found that he has fluid around his liver, and clearly there is some type of infection going on. They are still in the diagnosing stages today. In the meantime he still has a fever and is on antibiotics but stable. Will update when we know more. He is in the level of care between ICU and a regular room (I'm drawing a blank on the name of it now) -- basically he just gets a little more TLC.

Approaching Week 4

Well, I haven't posted much the past few days because I haven't really been sure what to post. It seems that he will have a really good day, then a not-so-good day. On the good days he is up frequently, interacting more like normal, more willing to try things, even watching TV occasionally, joking around. On the not-so-good days, he stays in bed a lot, seems very drowsy, sometimes complains of nausea, seems reluctant to move around and it seems difficult for him to engage in conversation. The doctors aren't really sure what's going on. They apparently took the "input" part of his g-tube (i.e., the tube in his stomach) out today since it wasn't working anyways, leaving just a drain in there. They have been talking for a couple of days about possibly doing an endoscopy to check out his throat/esophagus/stomach and make sure they aren't missing anything, but that hasn't happened yet and we are a little confused about if/when it will. Tomorrow it will be 4 weeks since his surgery. Pray for wisdom for the doctors to discern if there is anything physical hampering his recovery, for our ability to encourage him and help him take the steps he needs to get better, and for wisdom to know when he should go home.

One Step at a Time

After a couple of really rough days, Daddy seems to be moving forward again. He has been complaining of a really sore throat for several days, and today they finally decided that they think he has thrush (caused by being on antibiotics long term). They started treating that, his throat feels much better, and he seems to be more willing to eat and drink now. He also took his longest walk yet today. He has decided that he is going to do whatever it takes to get home by his birthday, which is next week (June 10). We appreciate your prayers that he would stay focused and determined. His biggest struggle (and ours too) this past week has been fighting discouragement. One other note: it seems that he has a TON of visitors on Sundays, which can get overwhelming, so we would encourage visitors to come throughout the week for short visits or call before coming on Sundays so we can stagger the visits better. But please keep coming to visit him -- he seems to benefit from visitors very much.

Change of scenery

Just a quick note that they gave Daddy a new, brighter, bigger room today (as of about noon). He's on the same floor, different hall -- so if you go to visit, check in at the front desk to get his room number. Please continue to pray for motivation for him to take the steps he needs to get better.

The latest plan

We have a plan...well, at least for now. The doctors have decided not to re-do the placement of the feeding tube, but will leave in the tube that is draining the fluid from his stomach. As the goal is for Daddy's stomach to resume working relatively normally, the doctors have decided to keep him in the hospital for another week in order to hopefully allow it to do so. He was given the green light to try soft foods and hopefully will be able to tolerate that well. (Daddy will be able to clamp the tube draining from his stomach to give his stomach an opportunity to process the food, but leaving the drain in will still alleviate some of the pressure until his stomach resumes functioning.) Please continue pray that his stomach will begin working and processing food. Also, continue to pray for his spirits--that he would feel encouraged, hopeful and motivated to get up and walk as much as possible despite entering week #3 of his hospital stay. Mom is hanging in there, although she is certainly weary from traveling to/from the hospital--please pray for endurance and rest for her.
(P.S. There is some talk that they move Daddy to another room for a change of scenery--will let you know if that transpires...)