Dave made it home on Friday. Hurray! It's hard to put to words how it feels to have him home. It's great and it's a little frustrating - for him and for me. For starters, when we were leaving the hospital, he asked for a wheelchair. After I gave him the disapproving eye (you know, the one that speaks volumes without you saying a single thing), he agreed to walk to the car. My mantra for him (which I'm sure he's probably sick of hearing me say and which sounds really cliche) is that he needs to be an active participant in his healing. He needs to get out of bed and get back to living his life. In fact, the line that keeps running through my head is from one of my favorite movies, Shawshank Redemption, when Andy says you have to get busy living or get busy dying. Well, I'm ready for Dave to get busy living because I'm sure as hell not going to let him take this lying down. Every time I see him lying in bed during the day I feel like a little piece of him feeling defeated. Well, I am here to kick his butt into shape.
I know he is truly glad to be back home. I also know it's more work than being in the hospital. In the hospital all he had to do was push his nurse call button and they'd bring whatever he needed. If he got out of bed a few times each day and walked a lap or two around the ward, it felt like an accomplishment. At home, I have much higher expectations. Not that I think he should be running a marathon, but I definitely stay on his case to keep him out of bed more than he's in bed.
The medical stuff seems mostly routine. He's mainly off the pain meds now. He still has a couple pills that get crushed up and put in his J-tube. He's on one antibiotic that I give him twice a day through his IV line. He still gets night feedings (back in the not-so-long-ago days of nursing babies during the night I sure never thought I'd be giving my husband night feedings). Anyway, that stuff all seems totally doable, and I think our biggest challenge is going to be finding the motivation to get up, get busy, and get living. My strategy is to be as pesky and annoying as possible so he'll want to get out of the house as often as possible. Kidding, of course.
So, that's it. We're doing fine. Every day there's some struggle and some accomplishment. (Wow, I really have to go to bed. For some reason, while writing that last sentence a Donny & Marie song just popped into my head. Scary.)
Sunday, March 25, 2007
Thursday, March 22, 2007
Can it be true?
As of this evening, it still sounds like tomorrow is still the big day for Dave's release. Everything looked good with yesterday's CT scan, but the doctor has ordered another swallow test for tomorrow morning (apparently there's a little glitch with food pooling in the bottom of his stomach and then his stomach not completely emptying). It didn't sound like it would potentially keep him in the hospital any longer, but that the doctor just wants a look to see if there's any fine tuning they can do.
He also got the dreaded back drain pulled out today. He remarked on how comfortable it is to lay in his bed now. Hurray! I'm stoked to think he'll be coming home with no drains. On Monday, it will be six weeks since his surgery, so I know he's done a lot more internal healing during these last three weeks he spent in the hospital. He'll also be coming home with the PICC line so he can stay on IV antibiotics for the next two weeks. The feeding tube stays as well as he'll need to get 1,000 calories of "food" for 10 hours each night.
Although he's been given the green light on the soft food diet, he hasn't had much of an appetite and has also been feeling quite nauseous (a side effect of the antibiotics, we're told). It also doesn't help that if he feels like eating, he places an order with the hospital room service and then has to wait 45 minutes to an hour for his food to arrive. By the time the food shows up, he's tired and not much interested in eating. I'm sure that will change when he's home. I'll be hitting the grocery store early tomorrow morning for all his favorite soft foods - cottage cheese, canned peaches, oatmeal, pudding - yum yum! Ooh, maybe I'll make him a Ben & Jerry's milkshake too. The doctors did say to focus on calories right now and not to worry so much about nutrition since he's getting that via the tube.
Well, that's it (gotta go dish up some Ben & Jerry's). I think my days as a blogger are numbered and Dave will be getting back online soon.
He also got the dreaded back drain pulled out today. He remarked on how comfortable it is to lay in his bed now. Hurray! I'm stoked to think he'll be coming home with no drains. On Monday, it will be six weeks since his surgery, so I know he's done a lot more internal healing during these last three weeks he spent in the hospital. He'll also be coming home with the PICC line so he can stay on IV antibiotics for the next two weeks. The feeding tube stays as well as he'll need to get 1,000 calories of "food" for 10 hours each night.
Although he's been given the green light on the soft food diet, he hasn't had much of an appetite and has also been feeling quite nauseous (a side effect of the antibiotics, we're told). It also doesn't help that if he feels like eating, he places an order with the hospital room service and then has to wait 45 minutes to an hour for his food to arrive. By the time the food shows up, he's tired and not much interested in eating. I'm sure that will change when he's home. I'll be hitting the grocery store early tomorrow morning for all his favorite soft foods - cottage cheese, canned peaches, oatmeal, pudding - yum yum! Ooh, maybe I'll make him a Ben & Jerry's milkshake too. The doctors did say to focus on calories right now and not to worry so much about nutrition since he's getting that via the tube.
Well, that's it (gotta go dish up some Ben & Jerry's). I think my days as a blogger are numbered and Dave will be getting back online soon.
Tuesday, March 20, 2007
Coming home soon, I think...
As I suspected, Dave's release date has been pushed back again. It sounds like he should be released by Friday. This time, I have a feeling he really will be released, although the thought has occurred to me that maybe they just like him and don't want to let him go. Actually, there are a couple nurses that are driving him batty. He has taken to actively mocking them as soon as they turn their backs. I'm hoping he gets released before they catch him making fun of them or I shiver to think what they might do to him.
To my trained and familiar eye, Dave has seemed more himself (he's getting his "Dave-ness" back) in the last two days than anytime since his surgery. He's still easily fatigued and groggy at times, but he's smiling and showing more emotion than he had been for weeks.
He had a CT scan yesterday to check the fluid they are draining (the dreaded back drain). The doctors report that everything looks good and there was no sign of infection in the fluid. When he comes home, he'll still be on IV antibiotics for two weeks to make sure the staph infection is completely cleared up. He's off the IV feeding and back on tube feeding (another step in the right direction), and he's back on the full liquid/soft food diet. He actually got to eat scrambled eggs this morning (the first "solid" food in about 3 weeks).
It sounds like the oncologist is going to give him a few more weeks of recovery before starting the next round of chemo the day after Easter or thereabouts.
All in all it feels like we're heading in the right direction.
Now I just can't help closing with one of the lighter moments from my day. For tonight's bedtime story Ian read The Ugly Duckling to Miles and me. At the end, they were both expressing how they felt sad that the other ducks were so mean to the ugly duckling. Ian said, "If I met that duck, I'd tell him he was beautiful, not ugly." Miles, not one to mince words, said, "I'd say, 'You're ugly. Want to be my friend anyway?'" And on that note, goodnight.
To my trained and familiar eye, Dave has seemed more himself (he's getting his "Dave-ness" back) in the last two days than anytime since his surgery. He's still easily fatigued and groggy at times, but he's smiling and showing more emotion than he had been for weeks.
He had a CT scan yesterday to check the fluid they are draining (the dreaded back drain). The doctors report that everything looks good and there was no sign of infection in the fluid. When he comes home, he'll still be on IV antibiotics for two weeks to make sure the staph infection is completely cleared up. He's off the IV feeding and back on tube feeding (another step in the right direction), and he's back on the full liquid/soft food diet. He actually got to eat scrambled eggs this morning (the first "solid" food in about 3 weeks).
It sounds like the oncologist is going to give him a few more weeks of recovery before starting the next round of chemo the day after Easter or thereabouts.
All in all it feels like we're heading in the right direction.
Now I just can't help closing with one of the lighter moments from my day. For tonight's bedtime story Ian read The Ugly Duckling to Miles and me. At the end, they were both expressing how they felt sad that the other ducks were so mean to the ugly duckling. Ian said, "If I met that duck, I'd tell him he was beautiful, not ugly." Miles, not one to mince words, said, "I'd say, 'You're ugly. Want to be my friend anyway?'" And on that note, goodnight.
Saturday, March 17, 2007
Happy St. Patrick's Day
There's not much new to say. Overall, it's been a pretty uneventful couple of days (no complaints here). Dave is still pretty miserable with the new drain they put in his back. They put him back on the morphine, but fortunately it was just for one day and he mainly seemed tired and groggy and not as loopy as before.
Finally, after a couple days of complaining about the discomfort, they put an extension on the drain to get some of the bulk of it around to his side rather than pinned underneath him.
He has graduated from clear liquids to the full liquid diet, so he can now have small amounts of cream soups, milkshakes, yogurt, etc. He has to take it slowly to make sure he doesn't have any nausea and that he doesn't start accumulating more fluid in his abdomen. (And, while I'm thinking about it, thank you Paul for every one of your posts. It's really reassuring to me - and others have mentioned it as well - to know you've been through this and that none of these complications are uncommon when recovering from this surgery.)
Dave's doctor said he might be coming home on Tuesday. A piece of me wonders if they are just trying to let him down gently by pushing his release back a day or two at a time rather than saying it will be another week or so. At this point, I guess it will really depend on how he tolerates the full liquid diet and when they can pull the drain out of his back.
It didn't feel like St. Patrick's Day without Dave at home. For as long as I've known him, we've celebrated St. Paddy's Day (usually with my parents) with a traditional Irish dinner of corned beef, cabbage, and grossly overcooked vegetables. I always get out my bent spoon and pour a couple Black & Tans. Tonight, a really great friend came over and cooked me a fantastic dinner, but I couldn't help thinking about Dave and wondering if his dinner consisted of green Jello. As we sat down to dinner, Elise and I put our mugs of Guinness together in a toast to Dave getting home and getting healthy.
Finally, after a couple days of complaining about the discomfort, they put an extension on the drain to get some of the bulk of it around to his side rather than pinned underneath him.
He has graduated from clear liquids to the full liquid diet, so he can now have small amounts of cream soups, milkshakes, yogurt, etc. He has to take it slowly to make sure he doesn't have any nausea and that he doesn't start accumulating more fluid in his abdomen. (And, while I'm thinking about it, thank you Paul for every one of your posts. It's really reassuring to me - and others have mentioned it as well - to know you've been through this and that none of these complications are uncommon when recovering from this surgery.)
Dave's doctor said he might be coming home on Tuesday. A piece of me wonders if they are just trying to let him down gently by pushing his release back a day or two at a time rather than saying it will be another week or so. At this point, I guess it will really depend on how he tolerates the full liquid diet and when they can pull the drain out of his back.
It didn't feel like St. Patrick's Day without Dave at home. For as long as I've known him, we've celebrated St. Paddy's Day (usually with my parents) with a traditional Irish dinner of corned beef, cabbage, and grossly overcooked vegetables. I always get out my bent spoon and pour a couple Black & Tans. Tonight, a really great friend came over and cooked me a fantastic dinner, but I couldn't help thinking about Dave and wondering if his dinner consisted of green Jello. As we sat down to dinner, Elise and I put our mugs of Guinness together in a toast to Dave getting home and getting healthy.
Thursday, March 15, 2007
More and more and more fluid
Just when I think Dave is getting the upper hand on this thing, something else comes along. He had another CT scan yesterday to check on the pocket of fluid they've been draining all week. The doctors were pleased with those results, but then found a disparate pocket of fluid somewhere towards his lower back. He spent the afternoon with the intervention radiologist so they could put in yet another drain. Unfortunately, this drain exits out his back - not very comfortable when you spend the majority of your days and nights on your back.
The doctor hasn't said if this will push back the Monday release we were hoping for, but if his stay is being extended it's probably good they haven't mentioned it given his mental and emotional state the past few days. I know he feels like the four walls of his room are closing in on him. I want to steal him away and head for the sand and salt water.
Oh, and a few people have asked how the inimitable Miss Molly McGeoy is doing with her broken arm. Let's just say she's discovered a quick and effective way to make her brothers squeal. Her cast doubles as a mighty effective club, particularly when used on unsuspecting brothers' heads.
I just went down the hall to check on Ian because I could hear him whistling (he whistles exactly like Dave) in his room a full hour and a half after he went to bed. He was musing about how cards people send that say, "Get Well Soon" seem kind of rude and demanding because they don't include "please" or "thank you".
When I see Dave in the morning, I'll let him know how many people are hoping for him to please get well soon (and thanks).
The doctor hasn't said if this will push back the Monday release we were hoping for, but if his stay is being extended it's probably good they haven't mentioned it given his mental and emotional state the past few days. I know he feels like the four walls of his room are closing in on him. I want to steal him away and head for the sand and salt water.
Oh, and a few people have asked how the inimitable Miss Molly McGeoy is doing with her broken arm. Let's just say she's discovered a quick and effective way to make her brothers squeal. Her cast doubles as a mighty effective club, particularly when used on unsuspecting brothers' heads.
I just went down the hall to check on Ian because I could hear him whistling (he whistles exactly like Dave) in his room a full hour and a half after he went to bed. He was musing about how cards people send that say, "Get Well Soon" seem kind of rude and demanding because they don't include "please" or "thank you".
When I see Dave in the morning, I'll let him know how many people are hoping for him to please get well soon (and thanks).
Tuesday, March 13, 2007
Home Soon
It sounds like Dave's release date (maybe that's not the right word, somehow "release" sounds like he's getting out of prison; of course, I think that's probably how he has started to feel about his latest stay) could be Monday. Dave was quite disappointed to hear he'd be spending another weekend in isolation (another prison term?), but I really think they are trying to be absolutely sure they won't be seeing him there again after they cut him loose this time. He said he's counting down the seconds until Monday. Sure enough, when I walked in his room this morning he appeared to be staring at the clock.
He seems to be feeling a lot better and is certainly looking much better, which I think makes it that much harder to be stuck there for close to another week. Now that he is better able to stay awake for longer stretches of time, I've started bringing him a new movie to watch each day. Today I brought the movie "Amelie". He was watching it when the kids called with their goodnights. Does anyone have any good (preferably uplifting) movie recommendations?
I brought Molly to see Dave yesterday. She asks about him constantly. Almost every morning she gets dressed, including getting her shoes and jacket on (amazing how much better the two-year old is at getting dressed than her older brothers), and then says, "Molly ready go see Daddy at hopala now." Most days I can appease her by putting a full-screen picture of Dave on the computer. Yesterday, she was really happy to see him in person and gave him lots of hugs and kisses. I know it did them both a ton of good.
I brought Ian by this afternoon and he gave Dave a nice laser-pointer demonstration on partial and total eclipses. Tonight all three kids were lamenting how they miss their dad (and it wasn't even after I yelled at them or anything - really!). I actually think the times they miss him the most are when we are having nice family time - having dinner, playing a game, or something like that.
That's about it. For those of you who tell me it makes you sad to read the blog, take heart. Things are ok. We are ok. Dave is going to be ok.
He seems to be feeling a lot better and is certainly looking much better, which I think makes it that much harder to be stuck there for close to another week. Now that he is better able to stay awake for longer stretches of time, I've started bringing him a new movie to watch each day. Today I brought the movie "Amelie". He was watching it when the kids called with their goodnights. Does anyone have any good (preferably uplifting) movie recommendations?
I brought Molly to see Dave yesterday. She asks about him constantly. Almost every morning she gets dressed, including getting her shoes and jacket on (amazing how much better the two-year old is at getting dressed than her older brothers), and then says, "Molly ready go see Daddy at hopala now." Most days I can appease her by putting a full-screen picture of Dave on the computer. Yesterday, she was really happy to see him in person and gave him lots of hugs and kisses. I know it did them both a ton of good.
I brought Ian by this afternoon and he gave Dave a nice laser-pointer demonstration on partial and total eclipses. Tonight all three kids were lamenting how they miss their dad (and it wasn't even after I yelled at them or anything - really!). I actually think the times they miss him the most are when we are having nice family time - having dinner, playing a game, or something like that.
That's about it. For those of you who tell me it makes you sad to read the blog, take heart. Things are ok. We are ok. Dave is going to be ok.
Sunday, March 11, 2007
Success!
Day by day, I think things are starting to look up. Dave has seemed a little stronger and little more engaged each of the last few days. I've been trying to spend some time at the hospital each morning since that seems to be his best time. He's usually up for getting out of bed and taking a walk around the ward (2 or 3 laps), and then he can stay sitting up in a chair long enough to beat me at a game of cribbage (he's been getting insanely good hands, and for once I don't mind losing - too much).
The lytic they've been pushing into his drainage tube in an attempt to break through membranes and drain some of the fluid that has been pooled in his abdomen was a success. On Friday afternoon, they pushed 50 cc's of lytic and two hours later retrieved 250 cc's (they cap the drain and give it a couple hours to do its thing). Yesterday, they pushed another 50 and got close to 200 back. When I left the hospital this evening, they IR doctor was pushing another 50 and said there's just a small pocket of fluid remaining which they hoped to drain tonight. Finally - something that feels like a success!
We still haven't heard anything about a possible release date, but I'm hoping it will be sometime this week.
The lytic they've been pushing into his drainage tube in an attempt to break through membranes and drain some of the fluid that has been pooled in his abdomen was a success. On Friday afternoon, they pushed 50 cc's of lytic and two hours later retrieved 250 cc's (they cap the drain and give it a couple hours to do its thing). Yesterday, they pushed another 50 and got close to 200 back. When I left the hospital this evening, they IR doctor was pushing another 50 and said there's just a small pocket of fluid remaining which they hoped to drain tonight. Finally - something that feels like a success!
We still haven't heard anything about a possible release date, but I'm hoping it will be sometime this week.
Friday, March 9, 2007
Friday
Things are still moving slowly along. I got to the hospital early this morning since that seems to be Dave's most awake and alert time (it's certainly not mine). While I was there he got his second JP drain removed (this was the last of the two drains placed during surgery on the 12th). I guess that's progress. He still has the drain that was inserted when he was re-admitted last Friday, although the volume from that drain has dropped off as well. As of this morning, the doctors were still trying to figure out what to do with the septated (separated by membranes) pocket of fluid that still remains. This afternoon they decided to push some concoction (can't remember the name of the drug, so concoction is the best I can do) into the drain in an attempt to break up the membranes and drain some of the fluid. The risk of that approach is that the fluid they push in may not come back out and he then has a larger pocket of fluid. In addition, the pressure from the fluid is what caused him so much pain in the first place, so there was some concern over whether that might happen again.
Dave's mom left town this evening, so I didn't make it back to the hospital tonight, but I talked to him on the phone a little bit ago and it sounded like pretty good news so far. He said there has been some fluid draining, so hopefully the new approach is going to break through some walls tonight.
In the meantime, there hasn't been any talk of when he might get discharged. The big challenge now is to keep his spirits up while he's stuck in the hospital. Speaking of which, he can have visitors even though he's in what they consider "isolation". The hospital isn't concerned about the staph being contagious to visitors - the concern is about contagion to other post-op patients with compromised immune systems so they don't want it carried from one patient's room to the common areas of the hospital. Before entering his room, visitors need to put on a gown and gloves and put any personal items in a hospital bag (or leave them outside the room). Dave can also leave his room to take short walks around the ward, but when he leaves the room he needs to put on a fresh gown and gloves, while visitors need to take their gown and gloves off and leave them inside his room. So all you local people who have asked about visiting, please give me a call (cel phone is 206.841.2240) and I'll let you know if he's up for a visitor.
I swear in the few weeks Dave's been out of commission, things are falling apart at our house. The pocket door in our bathroom completely dropped off the track, the bottom of one of Miles' dresser drawers broke and fell through, the hot water heater might be on the fritz. Nothing too major, but it reminds me of all the little things Dave usually just takes care of. It reminded me of when I was about 7 months pregnant with Ian and I asked Dave to hang some shelves in our walk-in closet. In the spirit of trying to make me feel empowered (or at least that's what he'd have me believe), he told me to do it myself. He brought me his drill, 4-foot level, tape measure, apron (which barely fit around my gargantuan mid-section), and a few other supplies, and then I think he went on to do something more important like drink a beer and watch baseball (although I'm sure he'd beg to differ). Anyway, I thought, "Fine, I'll show him..." and got to work hanging my precious shelves. I think I got one shelf hung and then was semi-balancing on a chair, holding the second shelf, while trying to drill a hole, when the whole thing came crashing down and landed on my head. A short battle ensued between my stoic Irish upbringing and my pregnancy-induced hormones, and I started crying like a baby. (I like to pretend I'm Italian now anyway - proudly wearing my emotions on my sleeve.)
When Dave heard the crash and came in to find me crying in a heap on the floor, he felt really awful, but he had this epiphany that it wasn't about hanging the shelves - it was that I wanted him to be my big strong man. So here I sit and wait for my big strong man to get home and get well.
Dave's mom left town this evening, so I didn't make it back to the hospital tonight, but I talked to him on the phone a little bit ago and it sounded like pretty good news so far. He said there has been some fluid draining, so hopefully the new approach is going to break through some walls tonight.
In the meantime, there hasn't been any talk of when he might get discharged. The big challenge now is to keep his spirits up while he's stuck in the hospital. Speaking of which, he can have visitors even though he's in what they consider "isolation". The hospital isn't concerned about the staph being contagious to visitors - the concern is about contagion to other post-op patients with compromised immune systems so they don't want it carried from one patient's room to the common areas of the hospital. Before entering his room, visitors need to put on a gown and gloves and put any personal items in a hospital bag (or leave them outside the room). Dave can also leave his room to take short walks around the ward, but when he leaves the room he needs to put on a fresh gown and gloves, while visitors need to take their gown and gloves off and leave them inside his room. So all you local people who have asked about visiting, please give me a call (cel phone is 206.841.2240) and I'll let you know if he's up for a visitor.
I swear in the few weeks Dave's been out of commission, things are falling apart at our house. The pocket door in our bathroom completely dropped off the track, the bottom of one of Miles' dresser drawers broke and fell through, the hot water heater might be on the fritz. Nothing too major, but it reminds me of all the little things Dave usually just takes care of. It reminded me of when I was about 7 months pregnant with Ian and I asked Dave to hang some shelves in our walk-in closet. In the spirit of trying to make me feel empowered (or at least that's what he'd have me believe), he told me to do it myself. He brought me his drill, 4-foot level, tape measure, apron (which barely fit around my gargantuan mid-section), and a few other supplies, and then I think he went on to do something more important like drink a beer and watch baseball (although I'm sure he'd beg to differ). Anyway, I thought, "Fine, I'll show him..." and got to work hanging my precious shelves. I think I got one shelf hung and then was semi-balancing on a chair, holding the second shelf, while trying to drill a hole, when the whole thing came crashing down and landed on my head. A short battle ensued between my stoic Irish upbringing and my pregnancy-induced hormones, and I started crying like a baby. (I like to pretend I'm Italian now anyway - proudly wearing my emotions on my sleeve.)
When Dave heard the crash and came in to find me crying in a heap on the floor, he felt really awful, but he had this epiphany that it wasn't about hanging the shelves - it was that I wanted him to be my big strong man. So here I sit and wait for my big strong man to get home and get well.
Wednesday, March 7, 2007
More hallucinations, more fluid
I think I have writer's block tonight. I have about a thousand thoughts running through my head and I'm having trouble putting any of them into words. Here goes nothing... It was really hard seeing Dave yesterday (emotionally one of my worst days). It reminded me a lot of his first days in the ICU. He was not very lucid and for the first time he looked very small and very frail in the hospital bed. He's still having vivid sleep deprivation and drug-induced dreams and then has trouble separating his dreams from reality. He's had a couple different dreams where bad things are happening to the kids and then he's relieved when I assure him that the kids are accounted for and are ok. I usually feel very strong, but I couldn't stop crying when I walked out of his room yesterday.
Quite frankly, I just couldn't face going to the hospital first thing this morning, so I ran some errands and spent a bit of time at the library. I also bought an electric razor for Dave since the hair on his face was starting to outgrow the hair on his head. Thankfully, he was more tuned in to reality when I was there today. I brought some cards people had sent over the past couple days and he was happy to have me read those to him. I'll continue to bring him copies of the posts people leave on the blog as he always likes to hear those as well.
I had a long conversation with the surgeon this evening. The drain they inserted on Friday night seems to have done its job and the drainage has really slowed down. However (and this is a big however), there's another fairly sizable pocket of fluid which has accumulated in his abdomen and which is not being relieved by the new drain. They sent him back down to the intervention radiologist to insert yet another drain to get rid of that fluid. Unfortunately, they were not able to get at the bulk of the fluid. The way the surgeon described it to ye ol' layperson after I gave him the "huh, what does that mean?" was to liken the fluid pocket to the segments of a grapefruit. They could perforate one segment and drain it, but the other segments contain discreet pockets of fluid and it's just not practical (not to mention that it was painful for Dave) for them to drain each one individually. The options now are to either wait and see if his body will reabsorb the fluid over time or go back in to his abdomen surgically and drain the whole area. At this point, because his white blood cel count has dropped and his fever is down, leaving them less concerned about possible infection in that fluid, they are taking the conservative "wait and see" approach.
We embarked on this whole adventure with an admittedly aggressive surgeon to aggressively kick the ass of an aggressive cancer, but at this point I'm feeling pretty good with conservative.
Quite frankly, I just couldn't face going to the hospital first thing this morning, so I ran some errands and spent a bit of time at the library. I also bought an electric razor for Dave since the hair on his face was starting to outgrow the hair on his head. Thankfully, he was more tuned in to reality when I was there today. I brought some cards people had sent over the past couple days and he was happy to have me read those to him. I'll continue to bring him copies of the posts people leave on the blog as he always likes to hear those as well.
I had a long conversation with the surgeon this evening. The drain they inserted on Friday night seems to have done its job and the drainage has really slowed down. However (and this is a big however), there's another fairly sizable pocket of fluid which has accumulated in his abdomen and which is not being relieved by the new drain. They sent him back down to the intervention radiologist to insert yet another drain to get rid of that fluid. Unfortunately, they were not able to get at the bulk of the fluid. The way the surgeon described it to ye ol' layperson after I gave him the "huh, what does that mean?" was to liken the fluid pocket to the segments of a grapefruit. They could perforate one segment and drain it, but the other segments contain discreet pockets of fluid and it's just not practical (not to mention that it was painful for Dave) for them to drain each one individually. The options now are to either wait and see if his body will reabsorb the fluid over time or go back in to his abdomen surgically and drain the whole area. At this point, because his white blood cel count has dropped and his fever is down, leaving them less concerned about possible infection in that fluid, they are taking the conservative "wait and see" approach.
We embarked on this whole adventure with an admittedly aggressive surgeon to aggressively kick the ass of an aggressive cancer, but at this point I'm feeling pretty good with conservative.
Monday, March 5, 2007
What next?
Today was another fun-filled day. Molly was goofing around with the boys last night and fell over the back of the couch. She cried a little bit and complained about her hand, but it didn't seem too serious at the time. However, she woke up crying about 79 times (at least it felt like 79, but maybe it was actually only 59 times) last night and I knew something was definitely wrong. She was still favoring her hand this morning, so we headed for an x-ray and a visit to the pediatrician (and thank goodness Miles wasn't with us so he could kill the nurse Kathy). Sure enough, Molly has a fracture on her radius close to the wrist. After a visit to the orthopedist, she's now sporting a lovely purple cast. I wish I could say it has slowed her down a little bit, but about an hour after getting her cast on, I caught her pushing her Big Wheel up our steep driveway for a one-handed thrill ride.
I wish I could say Dave is doing much better, but it seems like slow progress or maybe no progress at all. Ok, it actually feels like another giant step backwards. I don't even know where to begin. They drained the fluid that had built up and was causing so much pain. They'll continue to have that drain hooked up to suction to drain anything that is still leaking in that area. He has also developed mild pneumonia and there were signs of infection in the fluid they are draining, so he's been on IV antibiotics since Friday night. It appears the fluid was leaking from his thoracic duct, so I'm told it should take care of itself once they dry the area out. However, drying the area out means no more eating or drinking for Dave either by mouth or by tube feedings (not that I think tube feeding qualifies as either eating or drinking). They put a PICC line back in (he had one during his chemo) to keep him nutrified and hydrated.
I had promised Molly we could go visit Daddy in the hospital (hopala as she calls it) after we finished up with her appointments, so we headed over to Swedish. We were stopped cold at the door of his room. Now he also has a staph infection at the site of one of his JP drains, so they have him in isolation. They've got him on some new IV antibiotics as the staph bacteria is apparently resistant to the other antibiotics they were using. I can go see him in the morning, but I'll have to don full combat gear - gown, mask, gloves, etc - before I can go in his room. The nurse said they'll probably have him in isolation through the entire 10-day course of antibiotics. Nice.
He's still on the heavy-duty pain meds so he's not always totally lucid. I think it's the morphine that has him really wiggy. He called tonight and said he was confused about the scale of things, like they've got some extra large washcloths and chairs in his room. I didn't realize he was higher than a kite until he said something about how his teeth had been really huge, but now they got really small and it was ok. All I could think about was that Jefferson Airplane song, White Rabbit, "One pill makes you larger and one pill makes you small..." And, the funny thing is that the boys were watching Alice in Wonderland yesterday and when I walked in the room and saw the "hookah smoking caterpillar" I realized I've read the book, but had never seen the movie. I love the song White Rabbit, but Dave really hates it.
Well, that's about it. Tomorrow is another day and hopefully it can't be any worse than today...
Saturday, March 3, 2007
And now a setback...
I think I can safely say that today was the second longest day of my life (with the day of Dave's surgery taking a hands-down first place). We had an appointment at the surgeon's office at 10:30 this morning and I just got home (after midnight). The appointment was mainly just to check in, hopefully get one of his drains removed, and to get a chest x-ray to see how his lung capacity was looking. At some point last night, his pain starting increasing and was becoming more difficult to manage. By the time we got to the surgeon's office he could barely walk and I had to take him in a wheelchair for his chest x-ray. The surgeon was totally perplexed, and as we sat in his office Dave's condition was visibly and quickly deteriorating. They said his stomach looked distended, his oxygen level was too low, he started vomiting, and he was in obvious pain. While it wasn't pleasant, I was glad the surgeon could see firsthand Dave's condition. He decided to have him admitted to the hospital right away.
The next 12 hours are kind of a blur of tests and more tests. Lots of blood draws, fluid samples from each of his drains, a urine sample, another chest x-ray, and then a CT scan of his chest, abdomen, and pelvis. They finally determined that there was a lot of fluid building up near his kidneys, although the source and nature of the fluid is still unclear. His white blood cell count is also elevated, so he's fighting an infection of some kind which may or may not be related to the fluid.
They paged the intervention radiologist to come right away to drain the fluid, so instead of losing one of the drains today, he gained another (right between two of his ribs-ouch!). They drained almost a 1/2 liter of fluid and will leave the drain in to continue to clean out the area. We may not know for a few days exactly what the source of leak was and whether that was the source of the infection. Either way, it looks like he's back at Swedish for another 5 or 6 days.
It feels like a major setback after he'd been doing so well the last couple of days, however I know it's where he needs to be right now.
The next 12 hours are kind of a blur of tests and more tests. Lots of blood draws, fluid samples from each of his drains, a urine sample, another chest x-ray, and then a CT scan of his chest, abdomen, and pelvis. They finally determined that there was a lot of fluid building up near his kidneys, although the source and nature of the fluid is still unclear. His white blood cell count is also elevated, so he's fighting an infection of some kind which may or may not be related to the fluid.
They paged the intervention radiologist to come right away to drain the fluid, so instead of losing one of the drains today, he gained another (right between two of his ribs-ouch!). They drained almost a 1/2 liter of fluid and will leave the drain in to continue to clean out the area. We may not know for a few days exactly what the source of leak was and whether that was the source of the infection. Either way, it looks like he's back at Swedish for another 5 or 6 days.
It feels like a major setback after he'd been doing so well the last couple of days, however I know it's where he needs to be right now.
Thursday, March 1, 2007
A Little Better Each Day
Dave has been home from the hospital for a full week. He's doing amazingly well (you didn't expect anything less, right?). I started to get a little bit concerned on Tuesday that he was spending too much time in bed (wow, that makes me sound pretty hard core). I think it would be really easy to start getting a little bit depressed after undergoing such major surgery. Now I'm not obtuse enough to think there's any real comparison between his surgery and the three c-sections I had, but I do remember that when I was tired and I hurt and I just wanted to be in bed, the thing that always made me feel better was to force myself to get up and move around and to get out of the house and get some fresh air. I do have his doctor's blessing in trying to get him up and moving around. The doctor said the more he's moving around and walking, the faster he'll recover. When I laid those thoughts out for him, instead of smacking me down as I might have done if I were him, he seems to have taken it to heart.
Yesterday, he got up and took a shower (after being sufficiently wrapped in half a box of Saran Wrap to cover his drains and j-tube) and then came with me to pick Miles up from school. We took Miles out for an ice cream cone and then ran some errands (important stuff like picking up prescriptions and going to Tully's for a latte). We also stopped by the surgeon's office since we thought one of Dave's incisions was starting to look funky. He's got a slight local infection on his neck incision, but for now we just need to keep it clean and put antibiotic ointment on it. We'll be going back in tomorrow for a chest x-ray and hopefully to get one of his drains removed. And I'm really, really excited that they said I no longer need to give him meds at 2:00 am. Now if I could just get Molly to sleep through the night... Actually, Dave will still probably wake me up at least once a night for his pain meds, but I'm only too happy to retire the 2:00 vibrating cel phone alarm.
Today, we had a nice, low-key day. Ian was in school until 5:15 (he does drama and Tae Kwon Do right after school), Miles had a playdate with his best friend Liam, and Molly had her first-ever playdate (an all-day one, too!) with our new friend Tara and her two boys, Cooper and Oscar. (Tara is the photographer who did the family pictures you see on this blog. She's really incredible and a wonderfully talented family photographer. You can check out her work at www.taraclarkphotography.com and if you want to see a slideshow of all the pictures she took for our family before Dave's surgery it's at www.taraclarkphotography.com/mcgeoy .)
That's really about all. Life is slowly starting to feel a little bit more normal. Dave's sister Michele came into town tonight and I showed her how to take care of Dave's meds so I can spend some good time out with the kids this weekend. Off to bed now.
Yesterday, he got up and took a shower (after being sufficiently wrapped in half a box of Saran Wrap to cover his drains and j-tube) and then came with me to pick Miles up from school. We took Miles out for an ice cream cone and then ran some errands (important stuff like picking up prescriptions and going to Tully's for a latte). We also stopped by the surgeon's office since we thought one of Dave's incisions was starting to look funky. He's got a slight local infection on his neck incision, but for now we just need to keep it clean and put antibiotic ointment on it. We'll be going back in tomorrow for a chest x-ray and hopefully to get one of his drains removed. And I'm really, really excited that they said I no longer need to give him meds at 2:00 am. Now if I could just get Molly to sleep through the night... Actually, Dave will still probably wake me up at least once a night for his pain meds, but I'm only too happy to retire the 2:00 vibrating cel phone alarm.
Today, we had a nice, low-key day. Ian was in school until 5:15 (he does drama and Tae Kwon Do right after school), Miles had a playdate with his best friend Liam, and Molly had her first-ever playdate (an all-day one, too!) with our new friend Tara and her two boys, Cooper and Oscar. (Tara is the photographer who did the family pictures you see on this blog. She's really incredible and a wonderfully talented family photographer. You can check out her work at www.taraclarkphotography.com and if you want to see a slideshow of all the pictures she took for our family before Dave's surgery it's at www.taraclarkphotography.com/mcgeoy .)
That's really about all. Life is slowly starting to feel a little bit more normal. Dave's sister Michele came into town tonight and I showed her how to take care of Dave's meds so I can spend some good time out with the kids this weekend. Off to bed now.
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