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!!
Subscribe to:
Posts (Atom)