If we thought the name "Kevin Beaman" was notorious in our circle at St Luke's before, it certainly is now. The cleaning lady in 3West stopped in our room to ask why he was back. The PICC team (PICC is another kind of line, a different kind of IV) expressed their condolences and corrected Kevin on the number of PICCs he has had (at least 4). Everywhere he goes his reputation precedes him.
Kevin's CAT scan last night showed isolated pockets of fluid. I could have told you that. What we didn't know was how they would proceed. Kevin really really really didn't want a drain put in. We have found them to be not very helpful and they have been one of his most painful procedures. So he was really really really happy that they decided to pull the fluid out of one pocket (why just one? why not both??) with a needle with no drain necessary.
We're pretty sure the plan is to wait for a few days and see if the fluid comes back. If not, he will be sent home. There is still no answer as to where or why it is there. Kevin said when his Dr came to visit him this evening he did a lot of head-shaking (as he did yesterday) which did not instill very much confidence in him.
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Tuesday, August 30: Day 1 Second Time Around
Kevin went back in the hospital this evening. He is extremely disappointed to be back there but is a good sport. He knows getting upset won't do anything so he isn't.
We went to see his surgeon this afternoon because Kevin had drainage from his main incision. After asking a lot of questions and listening intently to the answers, Dr got out his surgical scissors and clipped Kevin's wound open. Just like that. Kevin said it didn't hurt and I can't imagine how it couldn't. No topical anesthesia, nothing. Just clip clip. Blood started gushing out. Stacks and stacks of gauze, lots of pushing on his tummy to get it to come out, and I even used Lilly's line of "Can't you just tip him over to get it to drain??"
It kept coming. and coming. and coming. It was just old blood, no puss, not infected-looking, no bile, etc. Every so often Dr would smell the gauze when he was throwing it away and he even had Kevin smell it. No foul smell, just seemed like blood. I'm still not clear where it came from. Something about his tummy muscle or underneath that muscle or something.
After a while Dr shook his head, mumbled about how anything that happens to Kevin doesn't surprise him anymore, said we need another CAT scan to make sure nothing's leaking, make sure there's no communication between the bowels & the cavity, probably need a drain, etc. We asked can't we have a drain at home, can't we schedule appointments and drive to the hospital for the scans, why do we have to be admitted, please PLEASE don't make us go back to that place, etc.
However, after the initial shock, and after I took a long hard look at the huge three-inch opening in Kevin's belly, I said, I can't responsible for that at home. If we are worried about infection, you can't be at home with that thing open. And Dr really wanted us in a place where Kevin could be monitored. So.
He put in a makeshift drain right there in the room (used a needle and thread and sewed it into the inside of the wound - just like that. He said "I'll try to sew this in a place where it won't sting") and a pouch that adhered to Kevin's tummy around the opening. Within 5 minutes the pouch had to be emptied. It was about 2 cups. And this was after the initial 15 minutes of gushing that they sopped up with gauze. They asked Kevin if he felt better. He gave his usual "Eh."
We are back in our good old suite of 327. Kevin is really super in the depths of despair. He said "This wasn't supposed to happen." But his lack of improvement, his bloated tummy, his lack of appetite, everything in the last 5 days led us to think there was a little something going on that shouldn't be. We found it so that's great. Now we have to give up control again. And pray.
We went to see his surgeon this afternoon because Kevin had drainage from his main incision. After asking a lot of questions and listening intently to the answers, Dr got out his surgical scissors and clipped Kevin's wound open. Just like that. Kevin said it didn't hurt and I can't imagine how it couldn't. No topical anesthesia, nothing. Just clip clip. Blood started gushing out. Stacks and stacks of gauze, lots of pushing on his tummy to get it to come out, and I even used Lilly's line of "Can't you just tip him over to get it to drain??"
It kept coming. and coming. and coming. It was just old blood, no puss, not infected-looking, no bile, etc. Every so often Dr would smell the gauze when he was throwing it away and he even had Kevin smell it. No foul smell, just seemed like blood. I'm still not clear where it came from. Something about his tummy muscle or underneath that muscle or something.
After a while Dr shook his head, mumbled about how anything that happens to Kevin doesn't surprise him anymore, said we need another CAT scan to make sure nothing's leaking, make sure there's no communication between the bowels & the cavity, probably need a drain, etc. We asked can't we have a drain at home, can't we schedule appointments and drive to the hospital for the scans, why do we have to be admitted, please PLEASE don't make us go back to that place, etc.
However, after the initial shock, and after I took a long hard look at the huge three-inch opening in Kevin's belly, I said, I can't responsible for that at home. If we are worried about infection, you can't be at home with that thing open. And Dr really wanted us in a place where Kevin could be monitored. So.
He put in a makeshift drain right there in the room (used a needle and thread and sewed it into the inside of the wound - just like that. He said "I'll try to sew this in a place where it won't sting") and a pouch that adhered to Kevin's tummy around the opening. Within 5 minutes the pouch had to be emptied. It was about 2 cups. And this was after the initial 15 minutes of gushing that they sopped up with gauze. They asked Kevin if he felt better. He gave his usual "Eh."
We are back in our good old suite of 327. Kevin is really super in the depths of despair. He said "This wasn't supposed to happen." But his lack of improvement, his bloated tummy, his lack of appetite, everything in the last 5 days led us to think there was a little something going on that shouldn't be. We found it so that's great. Now we have to give up control again. And pray.
Monday, August 29: Day 5 at Home
While Kevin was sitting he felt something on his tummy. He looked down and his incision was dripping puss. I called the surgeon and spoke with his nurse. She said it had better be looked at so we have an appointment to see him Tuesday.
Kevin is also getting a few fevers. Our thermometer was sporadic (101-102) so I don't have a definite number, but I gave him Tylenol and within an hour he started sweating buckets. I got worried but then he reminded me that he always sweats huge when breaking a fever. Oh yeah.
So the puss + fever = worrisome.
What I also don't like is Kevin's coughing spells. Monday night he coughed from 3:34am-5:15am and he only stopped when he threw up. So I will also mention that to the surgeon. Of course I'm thinking fluid in the lungs again. I hope not.
Kevin is also getting a few fevers. Our thermometer was sporadic (101-102) so I don't have a definite number, but I gave him Tylenol and within an hour he started sweating buckets. I got worried but then he reminded me that he always sweats huge when breaking a fever. Oh yeah.
So the puss + fever = worrisome.
What I also don't like is Kevin's coughing spells. Monday night he coughed from 3:34am-5:15am and he only stopped when he threw up. So I will also mention that to the surgeon. Of course I'm thinking fluid in the lungs again. I hope not.
Monday, August 29, 2011
Sunday, August 28: Day 4 at Home
I have started to write down everything that Kevin eats and drinks, plus every movement considered physical exercise such as going up and down stairs. Both of us are a bit surprised at the lack of progress since he has gotten home. Nothing seems to have gotten easier or better in the last few days. He continues to have difficulty eating. I gave him three different dishes for dinner last night and he couldn't eat any of them. He finally drank a diabetic protein shake we brought home from the hospital.
Part of the problem is Kevin's coughing spells. When he starts coughing it's difficult to stop and he can cough for hours. The amount of air he takes in while coughing makes him heave, and today he threw up for the first time. Not good for someone who is barely eating anything anyway. We don't know what makes him start to cough; many times it's after meals and many times it's in the middle of the night.
We almost went to the ER last night; Kevin said his back was killing him where his left kidney is. I tried to be calm and after a while he said it could just be a sore back so we waited it out. It didn't appear to turn into anything, and I certainly didn't want to take him to the hospital. But anything including the word "kidney" and "hurt" makes us worry.
Part of the problem is Kevin's coughing spells. When he starts coughing it's difficult to stop and he can cough for hours. The amount of air he takes in while coughing makes him heave, and today he threw up for the first time. Not good for someone who is barely eating anything anyway. We don't know what makes him start to cough; many times it's after meals and many times it's in the middle of the night.
We almost went to the ER last night; Kevin said his back was killing him where his left kidney is. I tried to be calm and after a while he said it could just be a sore back so we waited it out. It didn't appear to turn into anything, and I certainly didn't want to take him to the hospital. But anything including the word "kidney" and "hurt" makes us worry.
Saturday, August 27, 2011
Saturday, August 27: Day 3 Home
Kevin managed to take a shower today and is using a bath stool. I'm sure being clean and feeling the warm water felt wonderful. He got "clean" at the hospital with antiseptic-smelling washcloth wipes, but it's not the same. Still hasn't gotten a haircut, we're hoping he can do that on Monday or Tuesday.
He hasn't yet done his physical therapy exercises, but I will see he does them today. He went up and down the stairs a few times yesterday and he said that was enough exercise for him. Any movement just wears him out for hours. We made a goal to attend one hour of church next Sunday Sept 4. I hope he makes it.
He hasn't yet done his physical therapy exercises, but I will see he does them today. He went up and down the stairs a few times yesterday and he said that was enough exercise for him. Any movement just wears him out for hours. We made a goal to attend one hour of church next Sunday Sept 4. I hope he makes it.
Thursday, August 25, 2011
Thursday, August 25: Day 38
Kevin is home. He is finally home.
He is taking 5 medications; 3 antibiotics, one for heart rate/blood pressure, and one for sleeping. We have 4 follow-up appointments in 1-1/2 weeks for re-evaluation. The pharmacist said Kevin's heart rate/blood pressure med is one hefty dose, and Kevin's worried that he will continue heal and the Rx will lower either or both more than it should. The pharmacist warned us to make sure his heart rate stays above 50, and Kevin gets very light-headed which worries him about his blood pressure. Tomorrow I will probably get an automatic blood pressure reader to put his fears at ease.
Both times Kevin has walked upstairs it has been a battle to make it. He is extremely weak and it is difficult to see him this way at home. He will get stronger fast, but my visions of our walks outside won't happen soon.
One of his goals is to make it to his barber!! His hair is extremely long and it's driving him crazy.
He is taking 5 medications; 3 antibiotics, one for heart rate/blood pressure, and one for sleeping. We have 4 follow-up appointments in 1-1/2 weeks for re-evaluation. The pharmacist said Kevin's heart rate/blood pressure med is one hefty dose, and Kevin's worried that he will continue heal and the Rx will lower either or both more than it should. The pharmacist warned us to make sure his heart rate stays above 50, and Kevin gets very light-headed which worries him about his blood pressure. Tomorrow I will probably get an automatic blood pressure reader to put his fears at ease.
Both times Kevin has walked upstairs it has been a battle to make it. He is extremely weak and it is difficult to see him this way at home. He will get stronger fast, but my visions of our walks outside won't happen soon.
One of his goals is to make it to his barber!! His hair is extremely long and it's driving him crazy.
Tuesday, August 23, 2011
Tuesday, August 22: Day 36
Another good day - - -
No dialysis again. 4th day in a row. If Kevin's kidney numbers hold and he does not have dialysis tomorrow, he will be done with it and his perm cath (permanent catheter for those not in the know) will be removed. I see no reason that after four days his numbers would spike, so I am fully anticipating dialysis to be done.
I still remember Kevin lying down in a hospital bed in the ER on July 18, having just finished a CT scan. He turned his head to me and said "I'm in kidney failure. That's what they said," all casual-like. I thought he was dying and I spent the next day planning his funeral. Little did I know that kidney failure would become the least of his problems over the next 6 weeks and I never really worried about his kidneys very much after all the kidney Drs said the same thing; kidneys are the laziest and most resilient organs. They will come back. And it looks like they have.
Kevin's last drain was removed today, the one he really really wanted gone yesterday. This one was put in about 2-3 weeks ago when he was in ICU when they were trying to get all the suspect fluids out of his body hoping it would decrease his infection. This one never did drain very much and was more of a nuisance and pain than any help. One more hole gone, one more scar remains.
No dialysis again. 4th day in a row. If Kevin's kidney numbers hold and he does not have dialysis tomorrow, he will be done with it and his perm cath (permanent catheter for those not in the know) will be removed. I see no reason that after four days his numbers would spike, so I am fully anticipating dialysis to be done.
I still remember Kevin lying down in a hospital bed in the ER on July 18, having just finished a CT scan. He turned his head to me and said "I'm in kidney failure. That's what they said," all casual-like. I thought he was dying and I spent the next day planning his funeral. Little did I know that kidney failure would become the least of his problems over the next 6 weeks and I never really worried about his kidneys very much after all the kidney Drs said the same thing; kidneys are the laziest and most resilient organs. They will come back. And it looks like they have.
Kevin's last drain was removed today, the one he really really wanted gone yesterday. This one was put in about 2-3 weeks ago when he was in ICU when they were trying to get all the suspect fluids out of his body hoping it would decrease his infection. This one never did drain very much and was more of a nuisance and pain than any help. One more hole gone, one more scar remains.
Monday, August 22: Day 36
Kevin walked!! Really walked!! Without a walker, without holding onto his iv stand, and without the help of the physical therapist. He walked!!
Also no dialysis AGAIN!! 3 days without dialysis is definitely what Kevin needs right now. He is ecstatic at the news.
He hasn't heard anything from IR (Interventional Radiology for those not in the know) about removing his last drain. Fluid really isn't draining from it and they've talked about taking it out for a while. Kevin is very eager to have it gone.
Also no dialysis AGAIN!! 3 days without dialysis is definitely what Kevin needs right now. He is ecstatic at the news.
He hasn't heard anything from IR (Interventional Radiology for those not in the know) about removing his last drain. Fluid really isn't draining from it and they've talked about taking it out for a while. Kevin is very eager to have it gone.
Monday, August 22, 2011
Sunday August 21: Day 35
Today started out a little rough. Kevin tried to get up for a walk but just couldn't do it. He was extremely light-headed and felt like he was going to pass out. He did manage to take 3 walks throughout the day but it was hard to see that there is still so far to go.
Kevin's had to work hard to keep his blood sugar up. He's tested a few times daily and if it's too low they want him to eat some chalky glucose tablets - about a quarter size in diameter. The first time his blood sugar was 49 and they gave him EIGHT tablets to eat. He got through 4 and said he was done, if he had to eat any more he was going to throw up. The nurse made a big deal about it and said he would have to sign a refusal if he wouldn't eat any more. I asked if he could drink some juice, got him some, and then ran to the vending machine to get him some candy also. When I was out of the room I also called our diabetic friend (Hey, Steve!!) who gave me some good advice boiling down to the fact that juice = good, glucose tablets = suck. So after I gave Kevin the juice they tested his blood sugar again in 15 minutes and he was 119. So there.
No dialysis again today. Two days in a row is a very good sign. We are praying praying praying that this trend continues.
Kevin's had to work hard to keep his blood sugar up. He's tested a few times daily and if it's too low they want him to eat some chalky glucose tablets - about a quarter size in diameter. The first time his blood sugar was 49 and they gave him EIGHT tablets to eat. He got through 4 and said he was done, if he had to eat any more he was going to throw up. The nurse made a big deal about it and said he would have to sign a refusal if he wouldn't eat any more. I asked if he could drink some juice, got him some, and then ran to the vending machine to get him some candy also. When I was out of the room I also called our diabetic friend (Hey, Steve!!) who gave me some good advice boiling down to the fact that juice = good, glucose tablets = suck. So after I gave Kevin the juice they tested his blood sugar again in 15 minutes and he was 119. So there.
No dialysis again today. Two days in a row is a very good sign. We are praying praying praying that this trend continues.
Sunday, August 21, 2011
Saturday, August 20: Day 34
Breakfast went better and he ate - by himself - his entire pancake! Excellent. He did require Zofran because he got nauseous after a few bites, but he got back into it and did a great job.
Then his kidney Dr visited. She is not too optimistic and doesn't say much. She is usually of the "We'll see" and "You're going in the right direction" variety. But today she said Kevin does not need dialysis for 2 days and she is crossing her fingers that he is looking at TWO WEEKS TOPS. WOW. Extremely exciting. He's to the point now where too much dialysis can impede his recovery so they are taking it day-by-day.
Kevin's movement was also really good today and he took 3 walks.
They also took him off oxygen so as of today I can see his entire face. He is still on quite a few other medications - blood pressure, heart rate, antibitoics (3 still I think), insulin, calcium, anti-nausea, sleep aids, and others too probably.
Today was an extremely good day. :)
Then his kidney Dr visited. She is not too optimistic and doesn't say much. She is usually of the "We'll see" and "You're going in the right direction" variety. But today she said Kevin does not need dialysis for 2 days and she is crossing her fingers that he is looking at TWO WEEKS TOPS. WOW. Extremely exciting. He's to the point now where too much dialysis can impede his recovery so they are taking it day-by-day.
Kevin's movement was also really good today and he took 3 walks.
They also took him off oxygen so as of today I can see his entire face. He is still on quite a few other medications - blood pressure, heart rate, antibitoics (3 still I think), insulin, calcium, anti-nausea, sleep aids, and others too probably.
Today was an extremely good day. :)
Friday, August 19: Day 33
Kevin had 3-1/2 hours of dialysis today. Now that he is off IV nutrition and s\is able to urinate, dialysis doesn't take off pounds of fluid it only cleans his blood. That's good. We have been told that he may need to continue dialysis after he is discharged. That's bad.
I hope Kevin walked today, but he had not when I left at dinner time. It is a real struggle for him to eat. My job is to force him. So, I did. For 45 minutes. I am doing my job. He managed to eat all his applesauce and drink Glucerna. That's it.
Lilly, my sister from FL who is here watching the girls, is leaving on Tuesday. Kevin certainly won't get as much of me after she leaves which I'm worried about. His parents will help out and be either at the hospital or at home when needed. I want it to be me doing everything but obviously thaat can't happen and this is the next best thing. My girls are going to miss their aunt and 2 little cousins.
I had two conversations today about Kevin being discharged. One was with a social worker and we went over what accommodations he might need when we comes home; a bed on the 1st floor, a chair in the shower, a walker, etc. I don't know what condition he will be in when he comes home so it's premature to set anything up, but it was nice to start thinking about him coming home. I am just nervous about it being too soon. Once he's home from the hospital I want that to be the end of it.
I hope Kevin walked today, but he had not when I left at dinner time. It is a real struggle for him to eat. My job is to force him. So, I did. For 45 minutes. I am doing my job. He managed to eat all his applesauce and drink Glucerna. That's it.
Lilly, my sister from FL who is here watching the girls, is leaving on Tuesday. Kevin certainly won't get as much of me after she leaves which I'm worried about. His parents will help out and be either at the hospital or at home when needed. I want it to be me doing everything but obviously thaat can't happen and this is the next best thing. My girls are going to miss their aunt and 2 little cousins.
I had two conversations today about Kevin being discharged. One was with a social worker and we went over what accommodations he might need when we comes home; a bed on the 1st floor, a chair in the shower, a walker, etc. I don't know what condition he will be in when he comes home so it's premature to set anything up, but it was nice to start thinking about him coming home. I am just nervous about it being too soon. Once he's home from the hospital I want that to be the end of it.
Friday, August 19, 2011
Thursday, August 18: Day 32
Kevin walked today! He walked with a walker, with the help of 2 physical therapists, but, he walked. About 50 feet total. He said he felt much stronger. Day by day.
Also good news - for a time today Kevin had no IV! That hasn't happened before. After a while they had to hang an antibiotic, but I couldn't believe the only thing had was hooked up to was oxygen for a while. Quite frankly, it made me suspicious; I thought for sure they were forgetting something.
Today was Kevin's last day on TPN, his IV nutrition. Hopefully this will make him want to eat since the nutrition obviously makes him feel a bit full and can hinder him getting calories by mouth. He really wasn't been eating well at all. Sometimes it's no appetite, sometimes he feels full, sometimes he feels nauseous. We are trying to get him to eat anything at all. We've brought in DQ shakes twice with blessings of the nurses. Any calories for him is great.
Also good news - for a time today Kevin had no IV! That hasn't happened before. After a while they had to hang an antibiotic, but I couldn't believe the only thing had was hooked up to was oxygen for a while. Quite frankly, it made me suspicious; I thought for sure they were forgetting something.
Today was Kevin's last day on TPN, his IV nutrition. Hopefully this will make him want to eat since the nutrition obviously makes him feel a bit full and can hinder him getting calories by mouth. He really wasn't been eating well at all. Sometimes it's no appetite, sometimes he feels full, sometimes he feels nauseous. We are trying to get him to eat anything at all. We've brought in DQ shakes twice with blessings of the nurses. Any calories for him is great.
Thursday, August 18, 2011
Wednesday, August 17: Day 31
OK, that's it with the "getting caught up" posts. There's too much. I just need to keep this current.
Kevin is out of ICU!! We are back to 3rd floor, post-ICU. It feels great.
Kevin's dialysis run today was 3-1/2 hours, the shortest. I don't know how much fluid they took off, normally it's 4-6 liters. 1 liter of fluid is roughly 2.2 pounds, so whenever Kevin has dialysis they take off 10-14 pounds. That's crazy to me. He gains ~5 pounds in fluid weight daily with IVs, especially his TPN which is a huge heavy bag of nutrition they pump into him
HUGE NEWS: Kevin's white count is within the range of normal. Two weeks ago he was at 35(k) and it has slowly dropped since then, with it going the wrong direction on some days. A few days ago it was 10.2. The high side of normal is 10. It's been a long time since we've heard "normal" from a Dr. Last night I asked his surgeon if this means the infection is gone. He said his cautious optimistic answer is "yes".
Other HUGE NEWS: Kevin is urinating quite a bit the last few days, sometimes as much as 250cc at a time (~8.5 oz). Usually it's around 100cc (~3+oz). This doesn't mean his kidneys are full-functioning, or even that his numbers are better which they're not. It's a great indication that "things are going in the right direction", a phrase we hear a lot. His kidney Dr this week says when he starts urinating liters, then we'll get excited. But excuse us, we are getting excited now.
Occupational Therapy finally caught up with Kevin after 7-8 days of trying to see him only to find his room empty - he's had that many procedures! Bambi, his therapist, said she was surprised to find he was an actual person! OT deals with lifestyle therapies, such as putting on socks, bathing, combing hair - stuff you would do at home. PT, physical therapy, deals with the balance, stretching, walking and standing. Kevin gets both groups daily. Bambi said two things about Kevin: how well he could move already (he could put socks on by himself) and how quiet he was. I told her to get used to it.
Today was the first day of school:
Everyone had a great first day, even Alaina who just started Middle School. I worried about her all day long but she came home with a huge smile on her face! Yea!!
Kevin is out of ICU!! We are back to 3rd floor, post-ICU. It feels great.
Kevin's dialysis run today was 3-1/2 hours, the shortest. I don't know how much fluid they took off, normally it's 4-6 liters. 1 liter of fluid is roughly 2.2 pounds, so whenever Kevin has dialysis they take off 10-14 pounds. That's crazy to me. He gains ~5 pounds in fluid weight daily with IVs, especially his TPN which is a huge heavy bag of nutrition they pump into him
HUGE NEWS: Kevin's white count is within the range of normal. Two weeks ago he was at 35(k) and it has slowly dropped since then, with it going the wrong direction on some days. A few days ago it was 10.2. The high side of normal is 10. It's been a long time since we've heard "normal" from a Dr. Last night I asked his surgeon if this means the infection is gone. He said his cautious optimistic answer is "yes".
Other HUGE NEWS: Kevin is urinating quite a bit the last few days, sometimes as much as 250cc at a time (~8.5 oz). Usually it's around 100cc (~3+oz). This doesn't mean his kidneys are full-functioning, or even that his numbers are better which they're not. It's a great indication that "things are going in the right direction", a phrase we hear a lot. His kidney Dr this week says when he starts urinating liters, then we'll get excited. But excuse us, we are getting excited now.
Occupational Therapy finally caught up with Kevin after 7-8 days of trying to see him only to find his room empty - he's had that many procedures! Bambi, his therapist, said she was surprised to find he was an actual person! OT deals with lifestyle therapies, such as putting on socks, bathing, combing hair - stuff you would do at home. PT, physical therapy, deals with the balance, stretching, walking and standing. Kevin gets both groups daily. Bambi said two things about Kevin: how well he could move already (he could put socks on by himself) and how quiet he was. I told her to get used to it.
Today was the first day of school:
Everyone had a great first day, even Alaina who just started Middle School. I worried about her all day long but she came home with a huge smile on her face! Yea!!
Monday, August 15, 2011
Week 3
I am writing this two weeks after, so let's see if I remember the highlights of the week after "Friday evening" - when Kevin coded.
Kevin continued to write to communicate. At times it was difficult because some nurses had his restraints tied so tightly that he could hardly lift up his hand. And sometimes it was still difficult to tell what he wanted or what his question was. It took so much energy and concentration for him I hated to ask him to repeat, but often I had to.
We expanded our Dr universe to include a pulmonologist and cardiologist and continued with the surgeon, infectious disease, and kidney Drs. I began to go to rounds in the morning to get updates on Kevin's status and then I had the ability to ask questions of the entire healthcare team (around 10 people daily - respiratory nurses, charge nurse, dietician, pharmacist, social worker, and the Dr on the floor that day).
My sister, Lilly, flew in from Miami the Monday following to take of the girls so I could concentrate on Kevin instead of scheduling the girls with friends and worrying about them when I wasn't there. It was an overwhelming offer, one that I had a difficult time accepting, but I knew I would be a fool to refuse it. So she brought her 2 month old baby and 2 year old toddler with her and hunkered down.
What everyone was saying to me was that Kevin "is very sick". It became clear that there was no timetable for recovery.It was truly one day at a time, which was very distressing. Often this week I would leave the hospital at night excited for the progress made during the day, hoping it would lead to more exciting news in the morning. Then I would arrive to learn his fever had returned, his white count went back up, or he had to be put back on some medication. I started every morning by crying, realizing again and again how long and hard this would be.
Kevin's ventilator was finally taken out Wednesday afternoon - 5 full days of breathing with a machine.
Kevin continued to write to communicate. At times it was difficult because some nurses had his restraints tied so tightly that he could hardly lift up his hand. And sometimes it was still difficult to tell what he wanted or what his question was. It took so much energy and concentration for him I hated to ask him to repeat, but often I had to.
We expanded our Dr universe to include a pulmonologist and cardiologist and continued with the surgeon, infectious disease, and kidney Drs. I began to go to rounds in the morning to get updates on Kevin's status and then I had the ability to ask questions of the entire healthcare team (around 10 people daily - respiratory nurses, charge nurse, dietician, pharmacist, social worker, and the Dr on the floor that day).
My sister, Lilly, flew in from Miami the Monday following to take of the girls so I could concentrate on Kevin instead of scheduling the girls with friends and worrying about them when I wasn't there. It was an overwhelming offer, one that I had a difficult time accepting, but I knew I would be a fool to refuse it. So she brought her 2 month old baby and 2 year old toddler with her and hunkered down.
What everyone was saying to me was that Kevin "is very sick". It became clear that there was no timetable for recovery.It was truly one day at a time, which was very distressing. Often this week I would leave the hospital at night excited for the progress made during the day, hoping it would lead to more exciting news in the morning. Then I would arrive to learn his fever had returned, his white count went back up, or he had to be put back on some medication. I started every morning by crying, realizing again and again how long and hard this would be.
Kevin's ventilator was finally taken out Wednesday afternoon - 5 full days of breathing with a machine.
Monday, August 1, 2011
August 1: Day 14 in the Hospital
I want to start giving updates on Kevin’s condition to more people at once, and also keep track of his progress for our family. I think this is the best way to do it.
I won’t include everything that got us to this place, but here’s the latest. It became apparent that there must be a hole in one of Kevin’s organs. The 2 drains put in his side to drain the bit of bile that may have seeped during his gallbladder surgery were putting out too much fluid for the leak to be small or the leak to be already healed. 2 scans and a scope showed no leak. Our surgeon asked for a second opinion on the last scan, and although a leak wasn’t found, the radiologist said there might be some air in his intestine. An exploratory surgery was scheduled for the same day, Friday afternoon. A hole was found in his small intestine which was repaired.
"wife" to ask for me and
"I need you" when I asked if it was all right if I could leave, and
"heart U" when I said "I love you".
I won’t include everything that got us to this place, but here’s the latest. It became apparent that there must be a hole in one of Kevin’s organs. The 2 drains put in his side to drain the bit of bile that may have seeped during his gallbladder surgery were putting out too much fluid for the leak to be small or the leak to be already healed. 2 scans and a scope showed no leak. Our surgeon asked for a second opinion on the last scan, and although a leak wasn’t found, the radiologist said there might be some air in his intestine. An exploratory surgery was scheduled for the same day, Friday afternoon. A hole was found in his small intestine which was repaired.
Kevin was sent back to ICU for recovery. He was talking to me, was in excruciating pain, and his heart rate kept climbing. I could tell, and he could tell, that his body was in a great deal of stress which he could not control. Dr Hanak, Lung Dr and Intensivist (supervisor of Intensive Care) was called in, Kevin’s kidney Dr was called on the phone, a cardiologist was called in, and our surgeon’s partner was called in. Dr Hanak kept calling me out of the room to talk to me to tell me 1) Kevin may need to be transferred to U of I Hospitals, and 2) Kevin was extremely sick. More and more bags of medicine were continuing to be hung from his now 3 IVs. I counted 12 bags. His ICU nurse kept calling out orders to others, getting Drs on the phone, and running back and forth to hang bags. The activity was constant and driven and scared me. His heart rate got up to the 170s.
I was with Kevin as much I could be during this time but left when I felt I was in the way. Kevin’s mother, Linda, was with me throughout the afternoon and also feeling the pressure of the situation. I left the room to comfort her and I heard the nurse yell loudly “Kevin! Kevin!” She started slapping his hand. “Kevin! Can you hear me!” Then she yelled “He’s non-responsive! Code Blue!” In an instant 15 people were crammed into his small room clustered around him and the flight crew ran in. I dropped my bags, went into an empty room across from his, fell to my knees in the dark and begged my Father in Heaven not to take him yet. I came out, found Linda, and a hospital chaplain who had appeared out of nowhere took Linda out since she couldn’t witness what was happening. I had to stay.
An angel of a nurse whose badge said “Patient Care Relations” stayed with me just outside Kevin’s room and explained everything that was going on in soft, even tones. He is being intubated. They are sedating him to put the breathing tube down his throat because he is fighting it. The Dr putting the tube in is an anesthesiologist. The lady in the flight crew uniform is also an ICU nurse and very good. That nurse is writing everything down that is happening. That is an EKG machine in case they have to shock him. I watched and listened to it all, not believing any of it was real.
The activity lasted about 45 minutes. Kevin’s Dad, Dennis, had been called by Linda to come in. Dr Hanak told us that the next 2-3 hours were very critical, touch-n-go. The cardiologist said his heart was secondary to his condition; no arrhythmia to be concerned with and his heart is healthy, he is just sick and his body is under stress. The surgeon said these kinds of things happen to sick people who are operated on.
Dennis and I stayed the night in a conference room, he in a chair and I on the couch. I eventually fell asleep, surprisingly, and got a few hours of rest, I don’t think Dennis slept at all. I woke up around 5:30 and realized no one had bothered us during the night with any news which must be a positive sign. Dennis and I got breakfast in the hospital cafeteria and went to see Kevin. He was stable though his body shook with every breath forced on him by the machine. He had been anemic and was transfused. He was already off the blood pressure medicine which was a good sign.
Saturday Kevin continued to be sedated and not much happened. He was put on 48-hour dialysis that runs at half the normal rate. He put on 10 pounds of fluid overnight from all the medications and the dialysis would take it off, and this way was much easier for his body. As I thought of scheduling someone to take the girls for the night, I realized “Hey, I can stay with them!” I had not slept at home for over a week. My bed felt extraordinarily wonderful.
Sunday morning I got to the hospital around 10:00am after getting the girls ready for church and dropping them off with another family that would get them there. Linda was with him already and said that he had started writing to communicate. He wrote:
"wife" to ask for me and
"Crystal after church or before" when Linda said I was going to church. To me this was a huge improvement; even though he was sedated, he was actively thinking, planning ahead, and making inquiries.
Some of my favorites:
"come here" when I told him I was going to church. Yes, I would come back here.
"I need you" when I asked if it was all right if I could leave, and
"heart U" when I said "I love you".
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