Another improving day for Carol. It seems with the drug changes, her eyes "look" better to me, although she still can't see. They don't seem so dilated all the time, and are changing again with light. They hadn't been for a few days.
She ventured into some new foods again tonight, and handled a little of it.
She had 2 sessions of physical therapy, which from what I understand went well. She feels like she had a good day. She got to see Safiya, but doesn't really remember it. Her wounds look like they are improving I am told. The nurses keep moving and wetting her dressings every couple of hours. I may have said it before, but one of the reassuring things about the wound care here, is the confidence in which they are doing things...like they have done this a million times before. From the doctors to the every single nurse.
They are going to change her trach out pretty soon to one in which they feel comfortable putting the cap thing on so she can talk again. Apparently not what they usually do, but they seem to agree it will give her some much needed independence.
Carol has slept very well the last couple nights. Especially well last night. The methadone seems to be working in that it is more of a long acting analgesic, so she doesn't wake up every couple hours in pain. They are giving it to her as a liquid through a feeding tube. The doctors here think maybe she was getting it iv at Swedish. She felt it was giving her strange hallucinations that way, and had it stopped. But it seems to be going well now.
Had dinner again with Chloe and Safiya...thank you Erickson's for dinner. The nanny situation is working out wonderfully. Chloe learned how to say "nanny" today. It may have taken her awhile to walk...but she can really say alot of things for her age. Safiya had her first shots/immunizations today. My mom and dad took her to that. It was the first time mom has seen her cry in pain. I haven't either. It's always tough seeing your babies cry in pain. To be honest though, Safiya is such a good mellow kid...rarely cries, except whe she is hungry, then you feed her, and instantly better. Much mellower than Chloe' at that point. Although I don't see her as much as I did Chloe up to this point.
Well that will do it I think for the night. Early morning tomorrow!!!
sd
Wednesday, July 30, 2008
Tuesday, July 29, 2008
7/29/2008b
So a good day say the doctors here for Carol. At the wound inspection and game plan meeting this morning....they said the wounds look great, and feel she was getting great wound care over at Swedish.
They seem to have a good plan in the works, regarding all facets of her care. She got a new lighter weight cast for her right hand so it will be easier to lift, but serve the same function of keeping her fingers extended. Her dressings were changed again. It's interesting at Swedish they were looking for dressings that required very few dressing changes, whereas here they want to be able to change them more easily and more frequently. They keep the dressing pretty wet here.
They are going to have someone come look at her vision again, although they think the workup was pretty complete at Swedish. It seems everyone is pretty optomisitc that it may return. They will be switching some of her med's to see if it will alter it abit for the better.
They want to do some grafting on Friday. They will be allograft grafts, entirely from cadavers. This idea is to see where those grafts take, and that will tell them which areas are ready for her own skin to take, thereby reducing the total amount of grafting needed. The back is still the most likely area for the grafting donor site. They will let that take effect for 5 days; so wednesday they will check it out. Like Dr. Luu at Swedish, they want to heal the wounds and graft as quickly as possible to limit pain and infection possibility.
I asked about rehab and prosthetics. I was assured that that would all be covered and included in her care here, but they wouldn't get involved really until after the grafting. So it seems, the quicker we get this grafting stuff going, the quicker Carol can get out of here.
What else.....Chloe and Safiya are doing great. They really seem to be enjoying Erin (nanny/helper extrordinare). Safiya, although having a narrower head, like mine, is getting nice big puffy cheeks. She has nighter brown hair, and blue eyes still. But, Chloe had blue eyes for a long time. Chloe and I had a really good dinner tonight together consisting of baby sweet potatos from gerber, a stuffed pepper thing that had rice meat, and other stuff in it...she loved it, and she normally hates rice. And then of course a brownie. Thanks sis jarvis. Thanks to all the people who have been making us dinner for the last 3 weeks...... Safiya has a doctor appt with her pediatrician. Probably more shots, and our big issue is that we can't get her keep down her iron drops (polyviflor multi). She throws it up everytime. night
scott, carol, chloe, safiya
They seem to have a good plan in the works, regarding all facets of her care. She got a new lighter weight cast for her right hand so it will be easier to lift, but serve the same function of keeping her fingers extended. Her dressings were changed again. It's interesting at Swedish they were looking for dressings that required very few dressing changes, whereas here they want to be able to change them more easily and more frequently. They keep the dressing pretty wet here.
They are going to have someone come look at her vision again, although they think the workup was pretty complete at Swedish. It seems everyone is pretty optomisitc that it may return. They will be switching some of her med's to see if it will alter it abit for the better.
They want to do some grafting on Friday. They will be allograft grafts, entirely from cadavers. This idea is to see where those grafts take, and that will tell them which areas are ready for her own skin to take, thereby reducing the total amount of grafting needed. The back is still the most likely area for the grafting donor site. They will let that take effect for 5 days; so wednesday they will check it out. Like Dr. Luu at Swedish, they want to heal the wounds and graft as quickly as possible to limit pain and infection possibility.
I asked about rehab and prosthetics. I was assured that that would all be covered and included in her care here, but they wouldn't get involved really until after the grafting. So it seems, the quicker we get this grafting stuff going, the quicker Carol can get out of here.
What else.....Chloe and Safiya are doing great. They really seem to be enjoying Erin (nanny/helper extrordinare). Safiya, although having a narrower head, like mine, is getting nice big puffy cheeks. She has nighter brown hair, and blue eyes still. But, Chloe had blue eyes for a long time. Chloe and I had a really good dinner tonight together consisting of baby sweet potatos from gerber, a stuffed pepper thing that had rice meat, and other stuff in it...she loved it, and she normally hates rice. And then of course a brownie. Thanks sis jarvis. Thanks to all the people who have been making us dinner for the last 3 weeks...... Safiya has a doctor appt with her pediatrician. Probably more shots, and our big issue is that we can't get her keep down her iron drops (polyviflor multi). She throws it up everytime. night
scott, carol, chloe, safiya
7/29/2008
Carol got moved yesterday at 2:00 pm to harborview. She is in the burn unit on the 9th floor. Visitation is slightly more restricted in that big groups in the room won't work as well as at Swedish, although anyone can come visit her, and she we would love it. As far as the facilities, let's just say Swedish is a little more comforatable, but we expected that. The staff there are very nice.
As expected when going to a new facility, some adjustments are taking a little to get used to. New pain medication protocols, led to a few hours of getting them used to Carol and Carol getting used to them. Respiratory protocol at harborview don't allow for the kind of cap on her trach that allowed her to talk. We have to cover the trach with your hand now and let her talk that way. If you are there and want to talk to her, let a nurse help you do it the first time. Visitors are still allowed. Parking is really expensive. What else...
The evening went well. Right when we got there the doctors and nurses said they had been expecting and hearing of Carol for several weeks. So everyone was pretty on the up and up of what was going on. First thing was to sedate her and take a look at the wounds for infections, and change the dressing to their standard. The wounds showed some small amount of infection superficially. The labs that came back, like at Swedish, showed no systemic infection. So her systemic antibiotics will be stopped today, and a topical type on the dressings begun, one that Swedish was afraid of using on her. The wearing of gowns around her has also been discontinued.
The dressings used have some sort of sulfa based medication in them. If you have been following along since the beginning, Swedish wanted to use this, but was afraid to due to her allergy to sulfa medications. Harborview decided to give it a go and just watch her to see if she had an allergic reaction. None..so good times. The plan today is to have wound rounds around 10 with the attending doctor (Dr . Gilbran), and come up with a plan.
scott
As expected when going to a new facility, some adjustments are taking a little to get used to. New pain medication protocols, led to a few hours of getting them used to Carol and Carol getting used to them. Respiratory protocol at harborview don't allow for the kind of cap on her trach that allowed her to talk. We have to cover the trach with your hand now and let her talk that way. If you are there and want to talk to her, let a nurse help you do it the first time. Visitors are still allowed. Parking is really expensive. What else...
The evening went well. Right when we got there the doctors and nurses said they had been expecting and hearing of Carol for several weeks. So everyone was pretty on the up and up of what was going on. First thing was to sedate her and take a look at the wounds for infections, and change the dressing to their standard. The wounds showed some small amount of infection superficially. The labs that came back, like at Swedish, showed no systemic infection. So her systemic antibiotics will be stopped today, and a topical type on the dressings begun, one that Swedish was afraid of using on her. The wearing of gowns around her has also been discontinued.
The dressings used have some sort of sulfa based medication in them. If you have been following along since the beginning, Swedish wanted to use this, but was afraid to due to her allergy to sulfa medications. Harborview decided to give it a go and just watch her to see if she had an allergic reaction. None..so good times. The plan today is to have wound rounds around 10 with the attending doctor (Dr . Gilbran), and come up with a plan.
scott
Sunday, July 27, 2008
7/27/2008
Carol is sleeping at the moment so I thought I would take a second and blog. Carol's mom stayed with Carol the last couple days/nights which seems to be becoming customary on the weekend, so I can spend some time with the rest of the my family. I try to bring both girls up here to see Carol, but it's a little tough. Safiya is easy, but all Chloe wants to do is run up and down the halls, touch things she shouldn't etc.
Carol had a bad couple days, with out much sleep. The nurses gave her some Ambien to sleep last night, and she finally got a good nights' rest. When I called her this morning, she was pumped to get things going. She said " I feel good, I want to get out of here, give me two months and I am good". By the time I got to the hosiptal she had tuckered out a little bit, but still determined. Funny what a little sleep can do for you.....
Apologies for not writing every day, there isn't a whole lot to write. She is very stable now, and it's just a get better kind of thing. She needs alot of TLC now though.....she get's hot then cold, then uncomfortable, doesn't like to be alone, needs ice, then her face cleaned, then her hair brushed, then her teeth brushed. etc. Plus she is getting very bored. I went and got some books on CD for her, but even then it is hard, becuase she can't press play, stop, rewind, etc. I think half of her needing so much right now is just to interact with someone. She wants to talk about things, anything. As I am writing this, that actually makes sense. I've been wondering why she wants all these things so much more than she normally would. I think she just needs interaction. We have had someone here at all times the last week, if I am not here. If she is alone for more than a half hour or so, she has one of the nurses call me to find out what's going on. So if you have been holding back on coming to see her, and have wanted too, now is a great time. I guess she has even said so today....
The physical therapy and occupational therapy on her hand and legs continues and she continues to progress there. I told her that once she can touch her head, which she almost can, I will program a bluetooth headseat so she can answer calls, and do voice command calls. It was funny, she immediately started trying to raise her hand to her head. She also sat up on her own for a couple minutes by herself today. So that was good....
As far as all the grafting goes..I will try and answer a couple question, and I apologize for a somewhat pissy post before. Basically Dr. Luu didn't think that enough quality tissue engineered skin could be made in a timely manner, plus it costly, how costly I don't know. My point was that I don't care the cost, I would make it work it out no matter what. I just wasn't presented with the option when I should have been in my opinion. I was looking through the blog, and we started talking about grafting as a real deal back on 6/15/2008. If we though it was going to be neccessary back then and the grafting takes 4-6 weeks to grow, why did we not start it then? I know it's not protocol, but it shows that when it comes to septic infection, there is not specific protocol. Just deal with the biggest deficit at the moment. Which, after living through this last month, I get. But I think this is an area in medicine where great improvements can/should be made. It is so rare though, training people could be a real issue.
Carol, is starting to eat a little bit now. We tried soup, grill cheese, a vanilla shake and applesauce for dinner. Went ok, but gave her a little stomach ache.
Anyway, I started this post a long time ago and forgot about it. Holler, if anyone has any questions. Carol will be at a new hospital, harborview at some point this week, most likely early in the week. I will post when and where, when I know for sure.
Thanks!!
scott
Carol had a bad couple days, with out much sleep. The nurses gave her some Ambien to sleep last night, and she finally got a good nights' rest. When I called her this morning, she was pumped to get things going. She said " I feel good, I want to get out of here, give me two months and I am good". By the time I got to the hosiptal she had tuckered out a little bit, but still determined. Funny what a little sleep can do for you.....
Apologies for not writing every day, there isn't a whole lot to write. She is very stable now, and it's just a get better kind of thing. She needs alot of TLC now though.....she get's hot then cold, then uncomfortable, doesn't like to be alone, needs ice, then her face cleaned, then her hair brushed, then her teeth brushed. etc. Plus she is getting very bored. I went and got some books on CD for her, but even then it is hard, becuase she can't press play, stop, rewind, etc. I think half of her needing so much right now is just to interact with someone. She wants to talk about things, anything. As I am writing this, that actually makes sense. I've been wondering why she wants all these things so much more than she normally would. I think she just needs interaction. We have had someone here at all times the last week, if I am not here. If she is alone for more than a half hour or so, she has one of the nurses call me to find out what's going on. So if you have been holding back on coming to see her, and have wanted too, now is a great time. I guess she has even said so today....
The physical therapy and occupational therapy on her hand and legs continues and she continues to progress there. I told her that once she can touch her head, which she almost can, I will program a bluetooth headseat so she can answer calls, and do voice command calls. It was funny, she immediately started trying to raise her hand to her head. She also sat up on her own for a couple minutes by herself today. So that was good....
As far as all the grafting goes..I will try and answer a couple question, and I apologize for a somewhat pissy post before. Basically Dr. Luu didn't think that enough quality tissue engineered skin could be made in a timely manner, plus it costly, how costly I don't know. My point was that I don't care the cost, I would make it work it out no matter what. I just wasn't presented with the option when I should have been in my opinion. I was looking through the blog, and we started talking about grafting as a real deal back on 6/15/2008. If we though it was going to be neccessary back then and the grafting takes 4-6 weeks to grow, why did we not start it then? I know it's not protocol, but it shows that when it comes to septic infection, there is not specific protocol. Just deal with the biggest deficit at the moment. Which, after living through this last month, I get. But I think this is an area in medicine where great improvements can/should be made. It is so rare though, training people could be a real issue.
Carol, is starting to eat a little bit now. We tried soup, grill cheese, a vanilla shake and applesauce for dinner. Went ok, but gave her a little stomach ache.
Anyway, I started this post a long time ago and forgot about it. Holler, if anyone has any questions. Carol will be at a new hospital, harborview at some point this week, most likely early in the week. I will post when and where, when I know for sure.
Thanks!!
scott
Friday, July 25, 2008
7/25/2008
So another day of progess for Carol, her pain seems to be getting much better. Yet an emotional day. I have been not posting on many of the details the last week or so. I have been losing my confidence in the plastic surgeon involved with Carol a bit, but been biting my tongue, for a few reasons. This is why I have been really pushing for Harborview this week. She is going there on Tuesday. She will be in one of th 8 burn unit beds...thanks to all the swedish docs and harbor view who are making this happen. Her plastic surgeon at swedish may be great....but when he tells you he is the only person who would take the case a weeks ago..it doesn't bolster confidence. I do however get that swedish doesn't have in house plastic surgeons, and if I was in private practice and a p. surgeon.....this would be the furthest thing I would want to do. That being I said I thank him for his work, but I really want another set of eyes to look at her. He may be good, but let's just say his bedside isn't the best. Plus all week he has been.."if we were at harborview we could do hyperbaric, and put her in a special bath to clean the wounds, and all the tools I need would just be there, etc. etc." So why not have her there. The politics in medicine in the US is a joke, maybe the world. The freaking special bath and bed is across the street, just send her to it. Across the freaking street.....pisses me off. The patient part of healthcare here get's overlooked sometimes due to peoples ego's and what not. Patient care should always be easy....if you are the responsible doctor(s), what would you do with your mom or kid....do that.
Anywho....I can't remember if I have talked much about her grafting situation. Well early in the week in the wee hours of the night/morning...Dr. Luu (the aforementioned plastic surgeon) had a talk to me about her needed skin grafting. So she needs alot of it. They only put alloderm on her right leg and ran out. Alloderm is good for growing the dermal layer only of skin, not your epidermis (outer layer). Only your own skin will work for epidermal grafting. Cutting edge technology is out there for tissue engineering your own epidermis, but the technology is still it's infancy, and is reserved for patients that have no other skin to take, mostly due to costs, and time needed to harvest it. That decision was made for me about the cost of procedure to grow it...thanks Dr. Luu. I personally would like all the options presented to me no matter how experimental, and let me decide if I can afford it.
So she needs alot of skin. Enough to cover both legs, hips, and a decent amount of the right and left arm. That leaves the only undebrided areas, as harvest areas for grafting. Her back, chest, and scalp. So now, her legs will be scarred forever, her arms will be scarred forever, and even though her back chest, and head (not letting them do the head) are fine now, will be scarred forever too. Try explaining that to your significant other in the kind of state Carol is in. So I hummed over most of the week, and last night Carol and I finally discussed it. It went as expected, pretty emotional. I think even though her hair would grow back and cover all scarring there, losing her hair too would be just too much..mentally. It's up to her though. It sucks, because in time all of this could heal without grafting. But would take like 6 months or more, at least that is what Dr. Luu told me. That is long time of pain, and chance of infection. I am not an expert on this, but the research I have done, it seems correct.
Spent sometime with Chloe and Carol at the hospital tonight. Went very well.
So hopefully that catches everyone up on the more serious details of the week. later
scott
Anywho....I can't remember if I have talked much about her grafting situation. Well early in the week in the wee hours of the night/morning...Dr. Luu (the aforementioned plastic surgeon) had a talk to me about her needed skin grafting. So she needs alot of it. They only put alloderm on her right leg and ran out. Alloderm is good for growing the dermal layer only of skin, not your epidermis (outer layer). Only your own skin will work for epidermal grafting. Cutting edge technology is out there for tissue engineering your own epidermis, but the technology is still it's infancy, and is reserved for patients that have no other skin to take, mostly due to costs, and time needed to harvest it. That decision was made for me about the cost of procedure to grow it...thanks Dr. Luu. I personally would like all the options presented to me no matter how experimental, and let me decide if I can afford it.
So she needs alot of skin. Enough to cover both legs, hips, and a decent amount of the right and left arm. That leaves the only undebrided areas, as harvest areas for grafting. Her back, chest, and scalp. So now, her legs will be scarred forever, her arms will be scarred forever, and even though her back chest, and head (not letting them do the head) are fine now, will be scarred forever too. Try explaining that to your significant other in the kind of state Carol is in. So I hummed over most of the week, and last night Carol and I finally discussed it. It went as expected, pretty emotional. I think even though her hair would grow back and cover all scarring there, losing her hair too would be just too much..mentally. It's up to her though. It sucks, because in time all of this could heal without grafting. But would take like 6 months or more, at least that is what Dr. Luu told me. That is long time of pain, and chance of infection. I am not an expert on this, but the research I have done, it seems correct.
Spent sometime with Chloe and Carol at the hospital tonight. Went very well.
So hopefully that catches everyone up on the more serious details of the week. later
scott
Thursday, July 24, 2008
7/24/2008
Carol had a decent night last night, after not such a good one the night before. Yesterday morning before leaving for work ( I have been staying in her room during the week now becuase she doesn't want to be alone) she really wanted to see the girls that night. So mom and dad brought them up...it was great. It seemed to be the first time Chloe really relaxed with Carol. Probably becuase she saw Safiya laying on/next to her and figured if she can I can....or just got jealous:)
They did an MRI yesterday. Initial findings show nothing abnormal...but they sort of expected that I guess. The harborview thing is back on the table. It seems Swedish and Harborview are on board as well. We are just working out the logisitics now.
She is getting better day by day, I don't think she realizes it though. I am sure she will in time. She told me a couple months ago her goal to get out of the hospital was 1 month. So funny that she set a goal to get out....an unrealistic one...but cool.
Also, I just want to again say thank you for all the things everyone has done and is doing for us. All the people making my family food everyday, cleaning our house, landscaping, watching the girls, financially supporting, cards, gifts, diapers, visiting Carol...thank you. It is making what seems like an impossible situation possible.
scott
They did an MRI yesterday. Initial findings show nothing abnormal...but they sort of expected that I guess. The harborview thing is back on the table. It seems Swedish and Harborview are on board as well. We are just working out the logisitics now.
She is getting better day by day, I don't think she realizes it though. I am sure she will in time. She told me a couple months ago her goal to get out of the hospital was 1 month. So funny that she set a goal to get out....an unrealistic one...but cool.
Also, I just want to again say thank you for all the things everyone has done and is doing for us. All the people making my family food everyday, cleaning our house, landscaping, watching the girls, financially supporting, cards, gifts, diapers, visiting Carol...thank you. It is making what seems like an impossible situation possible.
scott
Tuesday, July 22, 2008
7/22/2008
So a little better night last night. She only woke up emotional once. And I must say that the only reason she has gotten this emotional is becuase of the pain. She is just in incredible amount of pain. She rates it 100 times more painful than child birth and kindey stones. Every 2-3 hours she wakes up in agony. The nurses have been trying to work out the right cocktail of drugs. The best mixture seems to be a mix of iv/intraoral fentanyl/oxycodone/and ativan. She also has a fentanyl patch, and a scopalamine patch for nasuea.
The plastic surgeon, intecivist, and a couple others are in her room right now changing the wound vac dressings and taking a look at everything. Hopefully all of that is going well.
Felix vs Matsuzaka tonight, well at least for a couple innings!!
The plastic surgeon, intecivist, and a couple others are in her room right now changing the wound vac dressings and taking a look at everything. Hopefully all of that is going well.
Felix vs Matsuzaka tonight, well at least for a couple innings!!
Monday, July 21, 2008
7/21/2008
Carol was in surgery yesterday from 8-12:30 or so. All the needed debridements were done. Parts of the left leg were debrided again. The arms were done also. No skin graft were put on them, they were left open, with wound vac's over them, and tightly sealed them as well. After getting back, Carol has been in severe pain up until I left early this morning. Every two to three hours or so, she requires fentanyl and ativan for pain and anxiety, respectively. So I stayed the night with her last night, very rough night. But nonetheless it was nice to be in the room with her all night.
Today, was supposed to be an MRI, but I somehow doubt Carol is going to be able to stand to be inside an MRI for 45 minutes. Maybe tomorrow. Physical therapy will continue, especially on her right arm and hand. Thanks
scott
Today, was supposed to be an MRI, but I somehow doubt Carol is going to be able to stand to be inside an MRI for 45 minutes. Maybe tomorrow. Physical therapy will continue, especially on her right arm and hand. Thanks
scott
Saturday, July 19, 2008
7/19/2008
Hello, today Carol was pretty tired, although still wanting to talk to all of the family here. I think she may have had a little too much Ativan. As far as anything new. Her legs are pretty painful since the last surgery, so they have increased her pain medication, which seems to be giving her some naseau. They are giving her zofran for that, but may be switching to a scopalamine patch. It's like a sea sickness patch. She started eating some yogurt and pudding and a shake today. We have been intructed to continually work her right hand/fingers while we are in the room. The nurses are doing the same when they are in there.
Blood cultures reamain negative for any bacteria, but her white cell count is still a little high, but much lower still since the amputation. It's around 17. Physical therapy keeps going daily, and Carol got to talk with a counselor, both with me and alone.
She has another surgery tomorrow morning. This will be her 2nd debridement surgery. This will be her arms and abdomen. Hopefully they will clean up her c-section wound as well.
The infectious disease doctor (Dr. Greg Moss) said that if after this surgery her cultures remain negative, he will most likely discontinue antibiotic therapy.
I got to spend all yesterday with both girls, and all today with Chloe. Chloe has been too see Carol several times this weekend, and it seems to be getting easier for her. She has been pretty freaked out by all the tubes and beeps and stuff. She at least let me put her on the bed a couple times, and let Carol give her a kiss. Thanks everyone!!
scott, carol, chloe, and safiya
Blood cultures reamain negative for any bacteria, but her white cell count is still a little high, but much lower still since the amputation. It's around 17. Physical therapy keeps going daily, and Carol got to talk with a counselor, both with me and alone.
She has another surgery tomorrow morning. This will be her 2nd debridement surgery. This will be her arms and abdomen. Hopefully they will clean up her c-section wound as well.
The infectious disease doctor (Dr. Greg Moss) said that if after this surgery her cultures remain negative, he will most likely discontinue antibiotic therapy.
I got to spend all yesterday with both girls, and all today with Chloe. Chloe has been too see Carol several times this weekend, and it seems to be getting easier for her. She has been pretty freaked out by all the tubes and beeps and stuff. She at least let me put her on the bed a couple times, and let Carol give her a kiss. Thanks everyone!!
scott, carol, chloe, and safiya
Friday, July 18, 2008
7/18/2008
Good morning.
So Carol finally went down to have surgery at about 7 pm last night. The plan was to start on the legs and move onto the the arms and abdomen after that as time permitted and depending how Carol was doing.
She was brought back up to her room at about 10:30. All the plastic surgery team got to last night were her legs. The necrosis was pretty extensive, and tedious, and they ran out of alloderm (grafting material) just on the legs. The plan is to resume unroofing the areas on her arms and abdomen on Sunday, and maybe not graft them right away, but leave them exposed and then directly skin graft from Carol a little bit later.
Physical therapy continues each day, although I am sure her legs will get a break today. If Carol can tolerate it, we will explore doing the MRI again today. A physchiatris will be coming in the next couple days also.
I have gotten the ball rolling as far as with Swedish's rehab unit. Even though we are a ways off of that, maybe I have said this, but I think having the end game mapped out a bit even now, would be a good idea. We and the hospital are still planning on moving her to harborview for the rehab. That will be much later. She has many of these grafting procedures to go through. Many people have been asking about a time line for her at the hospital. No one will give me straight answer, but it's obviously dependant on her wound healing. The worse wound is her C-section according to the plastic surgeon. He feel that will take a couple months to heal. So I am figuring she will be at Swedish for at least a couple more months.
scott
So Carol finally went down to have surgery at about 7 pm last night. The plan was to start on the legs and move onto the the arms and abdomen after that as time permitted and depending how Carol was doing.
She was brought back up to her room at about 10:30. All the plastic surgery team got to last night were her legs. The necrosis was pretty extensive, and tedious, and they ran out of alloderm (grafting material) just on the legs. The plan is to resume unroofing the areas on her arms and abdomen on Sunday, and maybe not graft them right away, but leave them exposed and then directly skin graft from Carol a little bit later.
Physical therapy continues each day, although I am sure her legs will get a break today. If Carol can tolerate it, we will explore doing the MRI again today. A physchiatris will be coming in the next couple days also.
I have gotten the ball rolling as far as with Swedish's rehab unit. Even though we are a ways off of that, maybe I have said this, but I think having the end game mapped out a bit even now, would be a good idea. We and the hospital are still planning on moving her to harborview for the rehab. That will be much later. She has many of these grafting procedures to go through. Many people have been asking about a time line for her at the hospital. No one will give me straight answer, but it's obviously dependant on her wound healing. The worse wound is her C-section according to the plastic surgeon. He feel that will take a couple months to heal. So I am figuring she will be at Swedish for at least a couple more months.
scott
Wednesday, July 16, 2008
7/16/2008
Well another decent day for Carol. Not much going on during the day except hanging out and getting better. They didn't change her iv line today. They decided to instead to start moving ahead with plans to the the skin debridements and skin graftings. The first of them will happen tomorrow. There are 15 hand sized areas that will be removed and grafted with alloderm. Which is fake skin, that promotes skin growth. These are definitive grafts and will eventually need to be done with real skin. These 15 areas are all full thickness debridements. Nothing as major as her amputations, but nothing to scoff at. They will go fine, and I am not to worried about them. The plastic surgeons are a little worried about her c-section wound. I saw it today, and it looks pretty crazy, in that they left it open. This type of wound will take a couple months to heal. There is a little part in the middle that looks a little white and from someone in the medical field, not quite right. The plastic surgeons said the same. Not life-threatening or anything but a risk for herniation. Nothing can be done about it now thought I guess.
She knows what will be happening tomorrow, and is ok with it. She got to see bothe Chloe and Safiya today. Thanks for bringing them up Mom and Dad. In Carols words...."it was awesome dude."
She is sleeping now right next to me....she waits for me to get here at night, even though she is tired. But waits until I get to talk to her before letting herself sleep at night. Her vision has not changed and is starting to be worrisome to me even though they said it may take months to return.
I havne't mentioned it, but her vitals are stellar today. No fevers, blood pressure great, heart almost under 100 all day ( which I haven't seen yet). So on that note...things look better.
scott
She knows what will be happening tomorrow, and is ok with it. She got to see bothe Chloe and Safiya today. Thanks for bringing them up Mom and Dad. In Carols words...."it was awesome dude."
She is sleeping now right next to me....she waits for me to get here at night, even though she is tired. But waits until I get to talk to her before letting herself sleep at night. Her vision has not changed and is starting to be worrisome to me even though they said it may take months to return.
I havne't mentioned it, but her vitals are stellar today. No fevers, blood pressure great, heart almost under 100 all day ( which I haven't seen yet). So on that note...things look better.
scott
Tuesday, July 15, 2008
7/15/2008
Well another busy day for all of us. Carol explained her day to me as good and bad. She feels she is recovering, but there was an incident of giving her too much morphine this morning which stopped her breathing she wasn't too happy about.
There was a question at least with Heath and I if she knew about her left hand since I hadn't told her. We talked about it tonight, and she thought she had lost both her hands. So learning she still had one was an optimisitc thing for her.
Her fevers keep coming and going. She keeps having bowel issues, which for the people that know her well, know that is nothing new. She has ulcerative colitis for those that don't know. She requires daily medicine for that....which she hasn't had since she got here. I swear I have told them about this and who her gi doc is up here 4 or 5 times...anyway they called him and he they did a sigmoidoscopy. It looked great, and they just started her on her normal gi med's. So..not where the fevers are coming from.
Again they want to try moving her central iv line, as those are foreign objects and can cause infection. The idea was to a PIC line...which is a catheter in her axilla that goes to her heart. The ultrasound showed her veins to be very small. Her platelets are very high, even though she get's heparin daily. So there is some very real worry of venous thrombosis in doing a PIC. So another judgment call will have to be made by us I think by tomorrow. Leave it, move it to her other sublcavian with having the same infection risk, or do the PIC and risk another thrombotic/clotic event. The doc's want to think about it over night. That's when you know it's not a decision to be taken lightly, and when they ask me to sign a consent to do so. All and all not the hugest deal but....anyway.
I brought up again the possiblity of brain malfuction in the temperature regulation areas or maybe pitutary issues. So why not do the MRI. They said it's possible, but low on the totem pole, becuase what would you do if there was....just wait it out.
All in all she is good spirits. Thanks for all the visitors during the day and night. She really is enjoying seeing friendly faces.
We met with our future nanny/helper tonight. She is great..and importantly Carol has gotten to be in on the decision about that, and state what is important to her for the girls and their care. We feel really good about our choice. Thanks too all the people who have offered help in this regard...you have no idea how appreciative we are. Thanks to Carol's and my family through all this, without you and all your help this would be unimaginable.
scott
There was a question at least with Heath and I if she knew about her left hand since I hadn't told her. We talked about it tonight, and she thought she had lost both her hands. So learning she still had one was an optimisitc thing for her.
Her fevers keep coming and going. She keeps having bowel issues, which for the people that know her well, know that is nothing new. She has ulcerative colitis for those that don't know. She requires daily medicine for that....which she hasn't had since she got here. I swear I have told them about this and who her gi doc is up here 4 or 5 times...anyway they called him and he they did a sigmoidoscopy. It looked great, and they just started her on her normal gi med's. So..not where the fevers are coming from.
Again they want to try moving her central iv line, as those are foreign objects and can cause infection. The idea was to a PIC line...which is a catheter in her axilla that goes to her heart. The ultrasound showed her veins to be very small. Her platelets are very high, even though she get's heparin daily. So there is some very real worry of venous thrombosis in doing a PIC. So another judgment call will have to be made by us I think by tomorrow. Leave it, move it to her other sublcavian with having the same infection risk, or do the PIC and risk another thrombotic/clotic event. The doc's want to think about it over night. That's when you know it's not a decision to be taken lightly, and when they ask me to sign a consent to do so. All and all not the hugest deal but....anyway.
I brought up again the possiblity of brain malfuction in the temperature regulation areas or maybe pitutary issues. So why not do the MRI. They said it's possible, but low on the totem pole, becuase what would you do if there was....just wait it out.
All in all she is good spirits. Thanks for all the visitors during the day and night. She really is enjoying seeing friendly faces.
We met with our future nanny/helper tonight. She is great..and importantly Carol has gotten to be in on the decision about that, and state what is important to her for the girls and their care. We feel really good about our choice. Thanks too all the people who have offered help in this regard...you have no idea how appreciative we are. Thanks to Carol's and my family through all this, without you and all your help this would be unimaginable.
scott
Monday, July 14, 2008
7/14/20
What and exciting day. They finally put a plug in Carol's trach tube, and the difference seems like night and day. This was kept from me for most of the day, as Heath and the nurses were trying to suprise me. At the end of work, I called up there, and got to talk to her on the phone How surreal......she was like....you don't have to come I am fine..I know you are busy with the girls and work. Crazy Carol!! When I got up there she was talking great, she said she was tired and started rambling about how she couldn't go to sleep until they took out her (at least what I thought she said) trach was taken out. I said in time it will come just get rest if you need it. I again went over everything that has/had transpired. She knew of everything, and understands how and what is going on very well. Apparently the nurse earlier in the day asked her how she was doing and if she was depressed. She said she thought she might be, so they started some medication for that. Carol wanted me to reassure her though that if it made her act weird to stop it...so funny. We talked about lots of stuff......she wanted me to thank everyone who has supported us and she welcomes anyone who wants to see her....but I have to at least know them...haha!!
I kind of got emotional with her and what not, and she insisted that she is fine, and that she has to be. What a strong person. Eventually after me putting off her comments of taking out the trach. she said she was tired and that the thing in her throat needed to come out so she could sleep. I kindly passed it off, but the nurse said ok we will take out the plug in the trach and restart the oxygen so you can goto sleep. I am an idiot. Anyway she made sure I was ok with her going to sleep now, and said goodnight. night
scott
Sunday, July 13, 2008
7/13/2008
So I wrote a really long post late last night, and for some reason it didn't post for some reason. Anyway, the surgeries went well, with the expected outcomes. The right ring finger and left hand about an inch above the wrist was taken as well. They also closed the leg wounds, and hope to just allow that to heal without further surgeries. All of this was done at 8 am yesterday.
It has been a very emotional weekend for Carol. Apparently on Saturday morning the nurse came in about 1 am and she was crying. When I got there at seven, she clearly mouthed to me "what is happening to me today". She knew. So hesitantly told her some of what was to come, but not about the whole left hand. Not sure she actually understood still what exactly was going to and has happened. She tried to make a motion to give me a hug. I just reassured her she would be able to hold and hug everyone again.
Today, at least when I was there, she was emotional as well. It's been a tough weekend for me, in that I seem to be causing her the most increase in emotion and heart rate. She had lots of family and her old highschool friends around. Thanks for all you coming...I know it meant the world to her. I took the chance to get things around the house finalized for Safiya coming home (laundry, groceries, etc.)
Safiya ended up coming home Saturday night instead of Friday, because her doctor decided she needed a blood transfusion. Her hematorcrit is now stellar, and I don't have to readmit her later to do it. She was borderline low, so it was a judgment call. She kept me up all night. I am not at all used to getting up at night. Chloe slept through the night at about 3 months, and before that Carol handled it all. It went pretty well though. In the morning Josh brought Chloe over for an at home intro (she has met her several times at the hospital). Went great at home until it was time to give Safiya a bottle, and I think Chloe thought I was hooking her up with an old friend. She lost it. By the end though she was helping me change a diaper on Safiya. That's the angle I think I am going to stick with...I need you to help me with this/that.
I took Safiya with me to the hospital today, and we were given a room to nap in as needed together.
So the agenda for the week is as follows. Tomorrow physical therapy starts....on the legs specifically. The vent was wheeled out on Saturday. Carol has been breathing on her own for many days now. I don't think they even used it for the last surgeries? The goal there is to put a stopper in the trach so she can talk and be heard. Also this week the skin debridements and grafting will start, they have just been waiting on the grafting material. They have decided it seems to go with a synthetic grafting material. Which I am guessing must just promote her own skin to grow. But these are all not that scary compared to the last couple weeks. Its has been a couple weeks of bad things we knew that were coming, and were very hard on the days they happened on, but, it feels good to have some finality and say at least for me...let's move on and get her better.
The harborview thing is on a total hault for now. She is not acute enough in any aspect to be moved for skin related conditions. I am still pushing for the prosthesis/orthopeodist there though. He's supposed to be the best...Swedish's ortho dept is good also though. I don't know enough about it to justify one over the other, except for the physicians reputations.
I will keep more up to date this week....been busy!!
Scott
It has been a very emotional weekend for Carol. Apparently on Saturday morning the nurse came in about 1 am and she was crying. When I got there at seven, she clearly mouthed to me "what is happening to me today". She knew. So hesitantly told her some of what was to come, but not about the whole left hand. Not sure she actually understood still what exactly was going to and has happened. She tried to make a motion to give me a hug. I just reassured her she would be able to hold and hug everyone again.
Today, at least when I was there, she was emotional as well. It's been a tough weekend for me, in that I seem to be causing her the most increase in emotion and heart rate. She had lots of family and her old highschool friends around. Thanks for all you coming...I know it meant the world to her. I took the chance to get things around the house finalized for Safiya coming home (laundry, groceries, etc.)
Safiya ended up coming home Saturday night instead of Friday, because her doctor decided she needed a blood transfusion. Her hematorcrit is now stellar, and I don't have to readmit her later to do it. She was borderline low, so it was a judgment call. She kept me up all night. I am not at all used to getting up at night. Chloe slept through the night at about 3 months, and before that Carol handled it all. It went pretty well though. In the morning Josh brought Chloe over for an at home intro (she has met her several times at the hospital). Went great at home until it was time to give Safiya a bottle, and I think Chloe thought I was hooking her up with an old friend. She lost it. By the end though she was helping me change a diaper on Safiya. That's the angle I think I am going to stick with...I need you to help me with this/that.
I took Safiya with me to the hospital today, and we were given a room to nap in as needed together.
So the agenda for the week is as follows. Tomorrow physical therapy starts....on the legs specifically. The vent was wheeled out on Saturday. Carol has been breathing on her own for many days now. I don't think they even used it for the last surgeries? The goal there is to put a stopper in the trach so she can talk and be heard. Also this week the skin debridements and grafting will start, they have just been waiting on the grafting material. They have decided it seems to go with a synthetic grafting material. Which I am guessing must just promote her own skin to grow. But these are all not that scary compared to the last couple weeks. Its has been a couple weeks of bad things we knew that were coming, and were very hard on the days they happened on, but, it feels good to have some finality and say at least for me...let's move on and get her better.
The harborview thing is on a total hault for now. She is not acute enough in any aspect to be moved for skin related conditions. I am still pushing for the prosthesis/orthopeodist there though. He's supposed to be the best...Swedish's ortho dept is good also though. I don't know enough about it to justify one over the other, except for the physicians reputations.
I will keep more up to date this week....been busy!!
Scott
Friday, July 11, 2008
7/11/20
So I must have my mind in other places, becuase I just realized I had forgotten about the blog for a couple days. So both yesterday and today Carol pretty much slept. She got to see and talk to her old high school clan. Nice to see you all!! Today, apparantly, was a planning day for tomorrow. Carol will have some more surgery tomorrow. If you have been following along you probably no already, but if you are just finding out what is going..... it her left hand and right ring finger. They are also going to revamp where the legs were amputated, for wound closure. They may also do some of the debriding of a couple areas of her skin. All in all she doing well. They thought she had C. Diff yesterday. A bowel bacteria, but she doesn't. Dr. Moss, the infectous disease told me today that from his perspective she is doing great. No bad bugs at all right now. Her temperature and blood work all reflect that. I guess that's it for today....big day tomorrow.
scott
scott
Wednesday, July 9, 2008
7/9/2008
Well Carol was taken off the vent this morning about 6 when I got to the hospital before going to work. She has been off it all day, breathing on her own. They hope to just leave her off of it. Her legs are still in pain, so she get dilaudid boluses everyone in awhile. She has been very sleepy the last couple days.
Since our minds have shifted from her legs, arms, and breathing to a more stable condition. We started to ask her about her vision. When she looks at you, she kind looks past you. She has told me before that her vision is blurry, and other times she can't see. She had some experimental eye surgery when she was 8, and always has blurred vision for the first hour or so of the day, at least most days. So we are not sure what her visual status is, but a specialist is coming to look on Friday...a neuroopthomologist ( I learn of a new medical specialty everyday:)).
Safiya passed her car seat test, by setting upright in it with head held for a couple hours.
Thats about it for today!!
Scott
Since our minds have shifted from her legs, arms, and breathing to a more stable condition. We started to ask her about her vision. When she looks at you, she kind looks past you. She has told me before that her vision is blurry, and other times she can't see. She had some experimental eye surgery when she was 8, and always has blurred vision for the first hour or so of the day, at least most days. So we are not sure what her visual status is, but a specialist is coming to look on Friday...a neuroopthomologist ( I learn of a new medical specialty everyday:)).
Safiya passed her car seat test, by setting upright in it with head held for a couple hours.
Thats about it for today!!
Scott
Tuesday, July 8, 2008
7/8/2008
Carol is doing great again today. No real fevers, or issues. She is entirely off the the drip dilaudid. They just give it orally/nasally every 6 hours and as needed for pain. her LFT's were way up this morning so many of her medications have discontinued or changed. The antibiotics were most likely responsible. She is on and has been on a breathing trial for the last couple hours. It was only scheduled to go 1 hour. The reduction in pain medication may be why she is doing so well with the breathing. The plan is to do two 4-hour breathing trials and hopefully have her off the vent by week-end.
scott
scott
Monday, July 7, 2008
7/7/2008b
Well another mellow day. Carol was asleep for most of the day. No fevers. Mellow heart rate. I got her to wake up and had a long conversation with her. She tries to talk, but yes and no questions work best. 1 eye blink for yes, two for no. She knows about her feet now. I for obvious reasons was pretty choked up telling her, but it seemed I needed to. She seemed to be more worried about me, and sort of knew something was going on down there. But she for sure knows now. She wanted Safiya in there, so I brought her in for abit.
Harborview is still being worked on. The plan is like I said earlier, to continue to get her off the breathing support, and debride the other areas as needed. They stopped one of the antibiotics she was on, from the prodding of her very cool night nurse Paul. Apparently her liver functions have been off for awhile, and it appeared after some research from Paul, that this antibiotic (Daptomycin?) could be causing it. So her convinced the infectious disease doc to change it. The nurses at Swedish are awesome, both for Carol and Safiya. Thanks....I know you all are reading this.
I appreciate the late night phone calls and concerns from Carols friends and collegues across the country. It's great to know she is in all your thoughts. I tell her when you call or message, and she appreciates it.
I am doing well also, it feels good to know that Carol knows what is going on with her. We have always approached things as a team, and not being able to discuss these things with her before they happen has been tough.
Thanks.....
scott
7/7/2008
So not much to report. This is a good thing. Anyway, we are waiting for a bed at Harborview. Currently there ICU has a 23 person waiting list, and there burn icu has a 17 person ICU. The intesivist today is trying to work a work around into there rehab center, and have access to everyone there we need to. In the meantime the goals are get her off the vent. At least two breathing trials daily. Minor debridements as needed. She is looking much better, and being very stable.
scott
scott
Sunday, July 6, 2008
7/6/2008
Hello everyone. Carol had a pretty steady day today. One fever spike for about an hour. Other than several times waking up confused she did great today.
So things will for sure get put in order to move Carol to Harborview tomorrow. Many people have contributed to and spoken with the right people over there, so that it seems she has an extremely good team assembled over there. They are :
http://depts.washington.edu/surgery/faculty/foy.html will be primarily watching over her
under the supervision I am told of :http://www.orthop.washington.edu/uw/tabID__3374/ItemID__54/mid__10294/Default.aspx
Dr. Smith is supposed to be the best is the country for what he does. He is often gone doing things with the military.
We had another consult on the left hand. I haven't looked at it in about a week. Apparently it is not looking that good either, but not an emergent threat or anything. So we will be waiting on doing anything there for now.
Just everyone know, there is a guestbook in Carol's room now, and if you come and visit and she is asleep or you just don't feel like speaking to her or whatever, feel free to sign it or leave her a message there. It will on the desk in her room. Thanks to all the friends and family over this week and month.
I am honestly trying to keep up on a thankyou list....but it is hard to keep up with all the incoming gifts, calls, comments, and every other little thing. So thank you, and apologies if the thank you card takes a bit to get to you.
scott
So things will for sure get put in order to move Carol to Harborview tomorrow. Many people have contributed to and spoken with the right people over there, so that it seems she has an extremely good team assembled over there. They are :
http://depts.washington.edu/surgery/faculty/foy.html will be primarily watching over her
under the supervision I am told of :http://www.orthop.washington.edu/uw/tabID__3374/ItemID__54/mid__10294/Default.aspx
Dr. Smith is supposed to be the best is the country for what he does. He is often gone doing things with the military.
We had another consult on the left hand. I haven't looked at it in about a week. Apparently it is not looking that good either, but not an emergent threat or anything. So we will be waiting on doing anything there for now.
Just everyone know, there is a guestbook in Carol's room now, and if you come and visit and she is asleep or you just don't feel like speaking to her or whatever, feel free to sign it or leave her a message there. It will on the desk in her room. Thanks to all the friends and family over this week and month.
I am honestly trying to keep up on a thankyou list....but it is hard to keep up with all the incoming gifts, calls, comments, and every other little thing. So thank you, and apologies if the thank you card takes a bit to get to you.
scott
Saturday, July 5, 2008
7/5/2008b
Well again one of those days where I have attempted to write another post but just haven't been able to quite come up with the right words. So this will be a pretty tough blog to read.
I don't know what Carol from here on out would want me to write or not write...so I will just say that some of the big issues this week became emergent and had to be dealt with today. Carol is doing well now, and plans are moving forward to move her to harborview for her remaining wound healing, skin grafts, and other surgeries early next week. Since surgery today, although in pain, Carol is looking the best I have seen her since we got here. Thanks everyone!
scott
I don't know what Carol from here on out would want me to write or not write...so I will just say that some of the big issues this week became emergent and had to be dealt with today. Carol is doing well now, and plans are moving forward to move her to harborview for her remaining wound healing, skin grafts, and other surgeries early next week. Since surgery today, although in pain, Carol is looking the best I have seen her since we got here. Thanks everyone!
scott
7/5/2008
Took a day off from blogging.....
Same story really with Carol. Off and on temps and heart rate changes. Essentially the goals right now are lowering her sedation enough to get the trach out. We are a little concerned that she isn't progressing as quickly as we'd like. Of course the debate is to whether the feet are causing this delay. Most the nurses think her skin issues is what is slowing her progress. Some think the pain medication itself could be causing it. They again pressured me to amputate her feet yesterday or sometime this weekend (they being the vascular surgeons here at Swedish). Most of the nurses and outside doctors, and all the intecivists here at Swedish except one that have scene her, are saying if it was there wife/spouse they would want them at Harborview for her wound care, etc. Anyway, it's tough to get a bed over there for what Carol needs. But, I've spoken with someone over there who has assured me that all we have to do on Monday is have the intecivist call him over at Harborview, and he will make it all happen.
I feel like we are just sitting around waiting for a new infection to happen. Here at Swedish they want to amputate, see if her fevers go away. Then debride the other areas of skin that have necrosed. The other doctors that have come taken a look from outside of Swedish, all seem to want to do it the other way around. Her feet are looking worse and worse day by though, and I think most of the family has come/ing to terms with everything. Although we haven't given up on them yet.
Safiya is doing great.... 3 straight days of no feeding tube required. Her doctor asked me this morning what day would be good for me to take her home this coming week. So life is going to change again and get a little more complicated this week. I remember when we first had Chloe and it felt like we couldn't go and do anything anymore, that she kept us so busy. People would always say enjoy that time becuase it's the easiest. I know realize this with Safiya, it's a breeze taking care of her. She sleeps almost the whole day. Chloe on the other hand......not such a sleeper:) It will be nice to get 2 of the 3 girls together at least. Ill post again tonight. As always, thank you for all the support from all over everyone has been showing. It's been a little tough of a week, but you know she is talking a bit, she getting to see Safiya, she wants out of here, her sedation is way down if not almost off, her blood pressure is normal, her heart is normal, her lungs are normal, her kidneys are normal, we think her brain function is normal. So lot to be thankful for.
scott
Same story really with Carol. Off and on temps and heart rate changes. Essentially the goals right now are lowering her sedation enough to get the trach out. We are a little concerned that she isn't progressing as quickly as we'd like. Of course the debate is to whether the feet are causing this delay. Most the nurses think her skin issues is what is slowing her progress. Some think the pain medication itself could be causing it. They again pressured me to amputate her feet yesterday or sometime this weekend (they being the vascular surgeons here at Swedish). Most of the nurses and outside doctors, and all the intecivists here at Swedish except one that have scene her, are saying if it was there wife/spouse they would want them at Harborview for her wound care, etc. Anyway, it's tough to get a bed over there for what Carol needs. But, I've spoken with someone over there who has assured me that all we have to do on Monday is have the intecivist call him over at Harborview, and he will make it all happen.
I feel like we are just sitting around waiting for a new infection to happen. Here at Swedish they want to amputate, see if her fevers go away. Then debride the other areas of skin that have necrosed. The other doctors that have come taken a look from outside of Swedish, all seem to want to do it the other way around. Her feet are looking worse and worse day by though, and I think most of the family has come/ing to terms with everything. Although we haven't given up on them yet.
Safiya is doing great.... 3 straight days of no feeding tube required. Her doctor asked me this morning what day would be good for me to take her home this coming week. So life is going to change again and get a little more complicated this week. I remember when we first had Chloe and it felt like we couldn't go and do anything anymore, that she kept us so busy. People would always say enjoy that time becuase it's the easiest. I know realize this with Safiya, it's a breeze taking care of her. She sleeps almost the whole day. Chloe on the other hand......not such a sleeper:) It will be nice to get 2 of the 3 girls together at least. Ill post again tonight. As always, thank you for all the support from all over everyone has been showing. It's been a little tough of a week, but you know she is talking a bit, she getting to see Safiya, she wants out of here, her sedation is way down if not almost off, her blood pressure is normal, her heart is normal, her lungs are normal, her kidneys are normal, we think her brain function is normal. So lot to be thankful for.
scott
Thursday, July 3, 2008
7/3/2008b
So great day again.
We had a third opinion done and he agreed with us. His resume is below:
DR. BRIAN LANGE
Dr. Brian Lange earned his Medical Degree from the University of Washington School of Medicine in 1984, followed by his general surgery residency at UW Medical Center and Swedish Hospital Medical Center. After completing his residency in 1989, his vascular surgery fellowship year was spent at the Lahey Clinic Medical Center in Boston.
Since 1990, Dr. Lange has been practicing vascular surgery in Seattle and has served on the teaching staff of Swedish Hospital Medical Center.
Dr. Lange is certified by the American Board of Surgery and is a Fellow of the American College of Surgeons. He is a member of the Puget Sound Vascular Society, Pacific Northwest Vascular Society, American Association for Vascular Surgery, International Society of Endovascular Specialists, Seattle Surgical Society, Society for Vascular Ultrasound, American College of Phlebology and King County Medical Society.
The third opinion went much different than expected. He thinks/thought we should wait it out if not a problem. He was very concerned with her skin lesions and think we should be getting on that right away first. If you haven't read the blog......this is the answer I have been looking for. He suggested we move Carol to Harborview (the wound/burn hospital in Seattle). Becuase of that harborview has been consulted again today. The idea of moving her there has come a couple times every week since she has been there. But she hasn't been stable enough to move. She is now. Of course I am concerned a little bit if I am just trying to hear what I want to hear....but I don't care, it just feels right to me. Either way we are waiting a bit on the feet.
Carol was very sleepy all day today. She did not answer me at all today, until I asked about 730 tonight if she wanted to see Safiya. She shook her head yes. She we got to bring her in for a second time. Carol loved it. I held her up to Carols face and Carol started kissing her cheek. I laid Safiya next to her for a little bit. Carol fell asleep after that.
We will call it a day after that. Good day....hopefully we can get Carol to harborview next week. For those not from here, Harborview is associated with uw, and the va hospital. They are state run. It would in General not be my first place to send Carol, but it is the place to go here for burn and wound healing. Hope that helps
scott
JIM AND JUDY VANCE SAYS ----
Every day Carol continues to show us miracles can happen. We can not say enough about Scott, he is truly an amazing person, husband, and father, God Bless you Scott!
Thank you to all who have been following the blog from the beginning and for those of you who have just started following the progress for your prayers, love and support. As you can see by Scott's daily updates there is still a lot of ahead for Carol and Scott and the girl's and we wanted to remind you that if people want to know how they can help (a long with prayers and love), one way is the account that has been up up at Washington Mutual (WA MU). "Benevolent account account under Scott C Decker FBO Carol J Decker and Safiya Decker"
Direct deposits can be made at any Washington Mutual Bank Branch or send a check directly to:
Washington Mutual
Harvard Market
1429 Broadway
FCWA0656
Seattle, WA 98122
if you have questions regarding the account, please send to j2vance@usamedia.tv
Again thank you for your support, love, and prayers.
Jim and Judy Vance
Thank you to all who have been following the blog from the beginning and for those of you who have just started following the progress for your prayers, love and support. As you can see by Scott's daily updates there is still a lot of ahead for Carol and Scott and the girl's and we wanted to remind you that if people want to know how they can help (a long with prayers and love), one way is the account that has been up up at Washington Mutual (WA MU). "Benevolent account account under Scott C Decker FBO Carol J Decker and Safiya Decker"
Direct deposits can be made at any Washington Mutual Bank Branch or send a check directly to:
Washington Mutual
Harvard Market
1429 Broadway
FCWA0656
Seattle, WA 98122
if you have questions regarding the account, please send to j2vance@usamedia.tv
Again thank you for your support, love, and prayers.
Jim and Judy Vance
7/3/2008
So the second opinion is much the same as the first. I have seen her legs now, and do see where they are coming from. However, they were saying the same thing about her hand 3 days ago, and now feel that it has a better prognosis. So the family has decided to wait a bit, especially since there is not infection from it right now. We will see what happens over the weekend. A 3rd opinion is coming over, and I expect it to be much the same. I just want to give it a little bit more time before we do it in case some miracle happens.
Last night Carol sedation was almost entirely lifted. Turned out to be too quick of a drop. She was mouthing words quietly at first, but around 9:30 she was getting very pissed that she couldn't just get up and walk out. At first she was asking where I, Chloe, and Safiya were ( I wasn't there yet). Later she started saying that "I want to go, I want to go". By around 9:30 -10ish she was swearing at me to get her the heck out of there. She moved all 4 extremities. At one point she lifted her right leg 3 feet in the air and slammed it down on the bed in frustration. She was trying to slide herself off the bed. So the sedation was bumped back up a little. A slower come down from it has been adopted now, instead of just a quick stop on it.
As far as what is happening next. I am going to start pushing to have her wounds debrided and skin graft done as neccessary. They wanted to take the feet, debride, and do the first skin grafts all on the same day. But since we are postponing the feet for a bit, why not get the debridements going? The areas involved are a patch on her abdomen, pretty much entire left and right calf areas, and maybe some on the arms.
scott
Last night Carol sedation was almost entirely lifted. Turned out to be too quick of a drop. She was mouthing words quietly at first, but around 9:30 she was getting very pissed that she couldn't just get up and walk out. At first she was asking where I, Chloe, and Safiya were ( I wasn't there yet). Later she started saying that "I want to go, I want to go". By around 9:30 -10ish she was swearing at me to get her the heck out of there. She moved all 4 extremities. At one point she lifted her right leg 3 feet in the air and slammed it down on the bed in frustration. She was trying to slide herself off the bed. So the sedation was bumped back up a little. A slower come down from it has been adopted now, instead of just a quick stop on it.
As far as what is happening next. I am going to start pushing to have her wounds debrided and skin graft done as neccessary. They wanted to take the feet, debride, and do the first skin grafts all on the same day. But since we are postponing the feet for a bit, why not get the debridements going? The areas involved are a patch on her abdomen, pretty much entire left and right calf areas, and maybe some on the arms.
scott
Wednesday, July 2, 2008
7/2/2008
So the tracheotomy went well from what I understand. I have not spoken to Lea the nurse since, just Heath. It sounds as if her central line in her right subclavian stayed put. It looked pretty close to where the trach would go to me, but Heath said it looked as if everything is in the same place.
2nd opinion coming from this doctor this afternoon on the feet.
Swee Lian Tan, M.D.Thoracic Surgery, Vascular Surgery
Accepting New PatientsAccepting New Medicare
PatientsLanguage(s): Chinese, Malaysian Want to make an appointment?
Call Swee Lian Tan, M.D.'s office directly at (206) 860-2204
Education and Certification:Medical School: Harvard Medical SchoolResidency: Deaconess-Harvard Surgical ServiceFellowship(s): Pennsylvania HospitalBoard Certification(s): American Board of Surgery - General Surgeryand Vascular SurgeryAdditional Qualifications: Ph.D in Physical Chemistry (Massachusetts Institute of Technology),RVT (Registered Vascular Technologist)
Clinical Interests/Special Procedures Performed:Aneurysms, Angioplasty, Aortic Stent Grafts, Carotid Surgery, Endoscopic Vascular Surgery, Laparoscopic Aortic Surgery, Laparoscopic Surgery, Limb Salvage, Thoracic Surgery
Philosophy of Care:I believe in education of patients, their families and caregivers to effectively manage their vascular disease and minimize its impact on their lives.
see ya
scott
2nd opinion coming from this doctor this afternoon on the feet.
Swee Lian Tan, M.D.Thoracic Surgery, Vascular Surgery
Accepting New PatientsAccepting New Medicare
PatientsLanguage(s): Chinese, Malaysian Want to make an appointment?
Call Swee Lian Tan, M.D.'s office directly at (206) 860-2204
Education and Certification:Medical School: Harvard Medical SchoolResidency: Deaconess-Harvard Surgical ServiceFellowship(s): Pennsylvania HospitalBoard Certification(s): American Board of Surgery - General Surgeryand Vascular SurgeryAdditional Qualifications: Ph.D in Physical Chemistry (Massachusetts Institute of Technology),RVT (Registered Vascular Technologist)
Clinical Interests/Special Procedures Performed:Aneurysms, Angioplasty, Aortic Stent Grafts, Carotid Surgery, Endoscopic Vascular Surgery, Laparoscopic Aortic Surgery, Laparoscopic Surgery, Limb Salvage, Thoracic Surgery
Philosophy of Care:I believe in education of patients, their families and caregivers to effectively manage their vascular disease and minimize its impact on their lives.
see ya
scott
Tuesday, July 1, 2008
7/1/2008
Today is the start of the 3rd week. In fact it is very close to the time Carol was put here in the ICU. I have written and not posted todays entry at least 4 times. Tough day for me.....one of the toughest so far.
Carol did well today. Very sedated and sleepy, heart rate and temp stayed mostly down, although at 1 point she was up to 102 again. She feels normal now.
The doctors all had a big pow wow today to discuss where we go from here. She has not done well in the breathing trials the last couple days. She was expected to do better. Her sedation has to be lowerd during the trials. Carol becomes noticeably upset, and either in pain (albeit they are not lowering her pain med, just her sedation) or very uncomfortable, or upset that she can't move well. Seeing her the last couple days, I am feeling that she isn't in pain but uncomfortable and confused as to why she can't lift her self up out of bed. The doctors are afraid she is having pain. We are both speculating at this point. She is pretty maxed out on her current pain medication, so they are switching her again to another tonight/tomorrow. So essentially the trouble is that she is not waking up enough to breath on her own, becuase she is on too much pain medication. It supresses her breathing. So it was decided and I agreed, that tomorrow the breathing tube will be taken out and a tracheotomy will be placed. That should allow for many things, and hopefully be more comfortable for Carol. Plus it may allow her to mouth words.
So to the lame stuff of the day. I am going to say I few things that are a little hard to hear. This is how much of the family get's the news, so I must. Well, if in fact she is in alot pain. Why, where. Those are the questions. All the doctors did a thorough examination of Carol's skin, hands, arms, legs, feet. Her left hand is actuually warmer now, and although looks crazy, is getting blood flow now somehow it seems. All of her skin is healing well, except on her calves (the back side).... Her feet are very cold now, and they haven't been able to hear arterial blood flow sounds in them for awhile. Although to me, heath, and several nurses, like I've been saying for the past couple days, look pinker. But, there is a pretty clear line just above both ankles where the skin looks normal, and then darkens in color. The doctors are speculating that this may be where her source of pain is coming from or the calves. The vascular surgeon said " I am confident the feet will not be viable when all this over". So they want to take them.....tentatively on Thursday. I've got second and third opinions coming in, as we speak. But my general feeling is that it is not time for that. Of course I asked why now, why not wait. The answer is that if any of the stuff on her calves and feet spread upwards, the knees could get involved. Sparring the knees is a much better deal prosthetically...i guess. Also, afraid of further infection spreading to the body from the calves. Her white count has remained at 17 for the last few days, for those who want to know. So yeah....this crap is getting a little harder.....big decisions have to be made. I was hoping we wouldn't have to make any of these decisions quite yet. They are not really presenting as a decision I should say. We are really hoping to wait and let it play out abit. I don't think I am going to let them yet. Sorry for telling it like it is...it's therapeutic.
scott
Carol did well today. Very sedated and sleepy, heart rate and temp stayed mostly down, although at 1 point she was up to 102 again. She feels normal now.
The doctors all had a big pow wow today to discuss where we go from here. She has not done well in the breathing trials the last couple days. She was expected to do better. Her sedation has to be lowerd during the trials. Carol becomes noticeably upset, and either in pain (albeit they are not lowering her pain med, just her sedation) or very uncomfortable, or upset that she can't move well. Seeing her the last couple days, I am feeling that she isn't in pain but uncomfortable and confused as to why she can't lift her self up out of bed. The doctors are afraid she is having pain. We are both speculating at this point. She is pretty maxed out on her current pain medication, so they are switching her again to another tonight/tomorrow. So essentially the trouble is that she is not waking up enough to breath on her own, becuase she is on too much pain medication. It supresses her breathing. So it was decided and I agreed, that tomorrow the breathing tube will be taken out and a tracheotomy will be placed. That should allow for many things, and hopefully be more comfortable for Carol. Plus it may allow her to mouth words.
So to the lame stuff of the day. I am going to say I few things that are a little hard to hear. This is how much of the family get's the news, so I must. Well, if in fact she is in alot pain. Why, where. Those are the questions. All the doctors did a thorough examination of Carol's skin, hands, arms, legs, feet. Her left hand is actuually warmer now, and although looks crazy, is getting blood flow now somehow it seems. All of her skin is healing well, except on her calves (the back side).... Her feet are very cold now, and they haven't been able to hear arterial blood flow sounds in them for awhile. Although to me, heath, and several nurses, like I've been saying for the past couple days, look pinker. But, there is a pretty clear line just above both ankles where the skin looks normal, and then darkens in color. The doctors are speculating that this may be where her source of pain is coming from or the calves. The vascular surgeon said " I am confident the feet will not be viable when all this over". So they want to take them.....tentatively on Thursday. I've got second and third opinions coming in, as we speak. But my general feeling is that it is not time for that. Of course I asked why now, why not wait. The answer is that if any of the stuff on her calves and feet spread upwards, the knees could get involved. Sparring the knees is a much better deal prosthetically...i guess. Also, afraid of further infection spreading to the body from the calves. Her white count has remained at 17 for the last few days, for those who want to know. So yeah....this crap is getting a little harder.....big decisions have to be made. I was hoping we wouldn't have to make any of these decisions quite yet. They are not really presenting as a decision I should say. We are really hoping to wait and let it play out abit. I don't think I am going to let them yet. Sorry for telling it like it is...it's therapeutic.
scott
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