I called this morning and requested an immediate transfer for Sara from Kaiser Walnut Creek to Kaiser Santa Rosa. I've called discharge planner, doctor, floor manager and nurse. Sara had a good quiet night and she continues stable. I've asked them to put a phone in her room so I can talk to her shortly and check in.
I gave them a few hours before calling back. Apparently i've thrown them all into a froth and they are spinning around making bubbles...
Discharge planner told me that they are calling for a bed. Doctor already said that transfer criterion would be stable on 3N for 24hrs. They want to ensure that receiving MD understands the complexity of her case and that they have all staff and equipment to receive her.
I told the discharge planner that was great. She is stable. 24 Hrs is at 5pm today. She wouldn't be able to transfer until tomorrow and that gave everybody a chance to get those questions answered and arrange transport.
I'm going to take Tina's suggestions and make sure she stays attended. She's right...Sara will be attended constantly from here on out. I guess that's why I get so angry that the doctors seem to be clueless as to what a 1:4 nursing ratio actual means for patient contact time...
Anyway, I've got my full military attitude on today and I'm dressing that line...(basically, Navy talk for getting the ducks in a row...)
Quack! Quack!
Thursday, July 31, 2008
She's back on 3N
Well, they moved her. She's on 3N again. I spent 3 hours at the hospital pacing, fretting, talking to nurses, RTs, the assistand manager of 3N, making sure all her stuff moved, getting her setup in a new room, and venting the whole time.
A whole new crop of people to teach how to communicate with her. Some have worked with her before. But a whole new level of care, again, and the concerns that brings. So, I was vocal about them. And Sara is concerned, too. It took hours of addressing things and her seeing me talk to people before she settled down a bit.
I told her that they backed me into a corner. Move her to 3N or she's not leaving hospital - to home or Santa Rosa Kaiser....
So I told her that she needed to do her best and tell me if she is not getting the care she needs or feel she needs. When I talked to the nurses and RTs, I asked them to take the initiative and pass on to the next shift what our concerns and requests are to their teammates. We've all worked way too hard to let her get sick again...we all want her home.
I asked the assistant manager to have someone come check on her between the nurse and RTs. Ward clerk, nursing student, another nurse walking past room. Just pop in and ask her if she is OK. One blink is yes and she'll feel better looked out for. Anything else in blinks, get her nurse and we didn't miss anything. straight. simple.
I know that Dr. Asshole was in the hospital while I was there. He had to write some new orders for her, but avoided 3N like a hornet was there. (because there WAS!)
I also asked them to order a soft-touch call button. takes only a little force and can go next to her head. she's able to rotate her head enough now to maybe call for help herself. I'm just frantic that she's going to cough stuff up and plug her tube. I know i'm probably freaking myself out, but she's come SO far and worked SO hard that any setback is hard. She just wants to get home, get closer, see her friends, and rest and start working daily on her road back.
I told her that tomorrow morning I was going to be on the phone pushing for an immediate transfer from Walnut Creek to Santa Rosa - Until we have nursing and resources that is all I can do.
A whole new crop of people to teach how to communicate with her. Some have worked with her before. But a whole new level of care, again, and the concerns that brings. So, I was vocal about them. And Sara is concerned, too. It took hours of addressing things and her seeing me talk to people before she settled down a bit.
I told her that they backed me into a corner. Move her to 3N or she's not leaving hospital - to home or Santa Rosa Kaiser....
So I told her that she needed to do her best and tell me if she is not getting the care she needs or feel she needs. When I talked to the nurses and RTs, I asked them to take the initiative and pass on to the next shift what our concerns and requests are to their teammates. We've all worked way too hard to let her get sick again...we all want her home.
I asked the assistant manager to have someone come check on her between the nurse and RTs. Ward clerk, nursing student, another nurse walking past room. Just pop in and ask her if she is OK. One blink is yes and she'll feel better looked out for. Anything else in blinks, get her nurse and we didn't miss anything. straight. simple.
I know that Dr. Asshole was in the hospital while I was there. He had to write some new orders for her, but avoided 3N like a hornet was there. (because there WAS!)
I also asked them to order a soft-touch call button. takes only a little force and can go next to her head. she's able to rotate her head enough now to maybe call for help herself. I'm just frantic that she's going to cough stuff up and plug her tube. I know i'm probably freaking myself out, but she's come SO far and worked SO hard that any setback is hard. She just wants to get home, get closer, see her friends, and rest and start working daily on her road back.
I told her that tomorrow morning I was going to be on the phone pushing for an immediate transfer from Walnut Creek to Santa Rosa - Until we have nursing and resources that is all I can do.
Wednesday, July 30, 2008
Update on the move...
Ok...Sara is stable and ready to move out of the hospital. Unfortunately we continue to run into things that stop it.
First - California Budget. Yes, Governor Terminator doesn't want Sara to come home. He cut MediCAL by 10% across the board, without regard to which programs were hit. Home bound handicap people have lost services to help them survive, the entire healthy families program (prevention to keep kids healthy) is gone, and reimbursements to nurses is cut by 10% and payments delayed until September. All because our lawmakers can't seem to figure out how to do this. Everybody is sure posturing for reelection and position. Putzes...I outta....
Second - Bureaucracy - I've gone through my training, we have all the equipment, and they won't let Sara go until the nursing is in place (understandable) AND NOW not until she goes to 3N. Now, its not hard to remember what happens to her every time she goes up there. She's rushed back down a couple of days later with another bout of raging pneumonia. Dr. Asswipe and I got in a verbal exchange lastnight and he finally said that she doesn't go up there she doesn't go home and he could do that. I finally yelled, fine, do whatever you want with her. He said he was going to move her. I asked if he could AT LEAST wait until I was there. To which he answered, what's the difference. YOu're not here all the time anyway. YOu don't make a difference to her care. I hung up and threw my phone.
Third - Finances. I'm flat broke. The donations from the december concert fundraiser are gone (they made it so I could be off work, with her, and still have a place to live the first three months. absolute godsend...thank you again everyone.) I hate this. I don't like asking, but I really am, asking for more help. We need big help, small help, guardian angel help, good feelings help. I went through my house looking for things to sell...and there really isn't anything left. We're basically down to family heirlooms and the bare necessities.
My paycheck covers rent, tank of gas every 2-3 days to see Sara, car insurance, etc. I can make it squeaking on what I make, without all the driving. But i'm not going to abandon her. I can't. She can't. So, i'm falling behind on some stuff - still have the other half of my house deposit to pay - need materials for the ramp, for the bathroom remodel, clothes for both Sara and Michael (stuff to modify for her, stuff for school for him - he has one pair of pants and one pair of shorts left..). I can't even start to look at getting any rehab equipment, or a bathing chair, etc.
I know i'm whining right now, and people are probably tired of it. I know I am. LOL. This is just crushing some days. I go to see her and she's so bright and beautiful and all she wants is to come home. And my bones feel like lead and i'm getting so discouraged that I am running into so many road blocks, so many obstacles. I know some i've made, to be sure. Finances for one. I've never been good with money until the last 2 or 3 years, so i'm still digging out of prior to that. I wouldn't be doing this alone if I had stayed married to EITHER of my two ex-husbands. So I basically opted for single income child raising in california (what WAS I thinking. :)
...but I'm glad its just me and them... our little family is quite amazing.
I could fill the internet with the If/Then's of past decisions. I know that doesn't matter in the grand scheme of things. I'm just out here trying to figure it all out, trying to get her home and get her better. She doesn't deserve to live the rest of her life in a hospital. She's just a kid. And i'm just a worn out Mom trying to figure out how to bring it all together for her.
First - California Budget. Yes, Governor Terminator doesn't want Sara to come home. He cut MediCAL by 10% across the board, without regard to which programs were hit. Home bound handicap people have lost services to help them survive, the entire healthy families program (prevention to keep kids healthy) is gone, and reimbursements to nurses is cut by 10% and payments delayed until September. All because our lawmakers can't seem to figure out how to do this. Everybody is sure posturing for reelection and position. Putzes...I outta....
Second - Bureaucracy - I've gone through my training, we have all the equipment, and they won't let Sara go until the nursing is in place (understandable) AND NOW not until she goes to 3N. Now, its not hard to remember what happens to her every time she goes up there. She's rushed back down a couple of days later with another bout of raging pneumonia. Dr. Asswipe and I got in a verbal exchange lastnight and he finally said that she doesn't go up there she doesn't go home and he could do that. I finally yelled, fine, do whatever you want with her. He said he was going to move her. I asked if he could AT LEAST wait until I was there. To which he answered, what's the difference. YOu're not here all the time anyway. YOu don't make a difference to her care. I hung up and threw my phone.
Third - Finances. I'm flat broke. The donations from the december concert fundraiser are gone (they made it so I could be off work, with her, and still have a place to live the first three months. absolute godsend...thank you again everyone.) I hate this. I don't like asking, but I really am, asking for more help. We need big help, small help, guardian angel help, good feelings help. I went through my house looking for things to sell...and there really isn't anything left. We're basically down to family heirlooms and the bare necessities.
My paycheck covers rent, tank of gas every 2-3 days to see Sara, car insurance, etc. I can make it squeaking on what I make, without all the driving. But i'm not going to abandon her. I can't. She can't. So, i'm falling behind on some stuff - still have the other half of my house deposit to pay - need materials for the ramp, for the bathroom remodel, clothes for both Sara and Michael (stuff to modify for her, stuff for school for him - he has one pair of pants and one pair of shorts left..). I can't even start to look at getting any rehab equipment, or a bathing chair, etc.
I know i'm whining right now, and people are probably tired of it. I know I am. LOL. This is just crushing some days. I go to see her and she's so bright and beautiful and all she wants is to come home. And my bones feel like lead and i'm getting so discouraged that I am running into so many road blocks, so many obstacles. I know some i've made, to be sure. Finances for one. I've never been good with money until the last 2 or 3 years, so i'm still digging out of prior to that. I wouldn't be doing this alone if I had stayed married to EITHER of my two ex-husbands. So I basically opted for single income child raising in california (what WAS I thinking. :)
...but I'm glad its just me and them... our little family is quite amazing.
I could fill the internet with the If/Then's of past decisions. I know that doesn't matter in the grand scheme of things. I'm just out here trying to figure it all out, trying to get her home and get her better. She doesn't deserve to live the rest of her life in a hospital. She's just a kid. And i'm just a worn out Mom trying to figure out how to bring it all together for her.
Sunday, July 27, 2008
7-27-08
The first thing I noticed when I saw Sara today was her hair. Her hair is finally starting to look long again. well, perhaps long is stretching it, but it no longer strikes me as short. I guess it only really struck me now because the nurses combed her hair recently, so it wasn't the normal bed head that she usually has. She had the computer glasses on when I arrived, and once I was in the room, she finished the sentence she had been working on "Its too bright". Which struck me as a bit odd because it was no brighter then it normally is. Perhaps she was getting a glare on her screen. After I closed the blinds for her, she typed out "I'm happy to see you". I told her I was too and went about setting up my Xbox so we could watch more of "Heros".
I realize that I do pretty much the same thing each time I visit Sara. But sitting around and watching Movies was always our favorite thing to do. It's sort of our thing. Ever since we started dating, we have been spending most of our time together laying down and watching TV shows on DVD. 5 seasons of Stargate SG1, 4 seasons of Farscape, a fair amount of movies, and I don't even know how many anime shows we've watched. And now we're adding "Heros" to that list.
Anyway, she's doing well. She's clean, She's in good spirits, and she's still laughing at me when I screw up using the letter board. Oh yeah, I know a lot of people are wondering when Sara is going to be coming home. Unfortunately there is not a date set for that. Sorry.
~Daniel H.
I realize that I do pretty much the same thing each time I visit Sara. But sitting around and watching Movies was always our favorite thing to do. It's sort of our thing. Ever since we started dating, we have been spending most of our time together laying down and watching TV shows on DVD. 5 seasons of Stargate SG1, 4 seasons of Farscape, a fair amount of movies, and I don't even know how many anime shows we've watched. And now we're adding "Heros" to that list.
Anyway, she's doing well. She's clean, She's in good spirits, and she's still laughing at me when I screw up using the letter board. Oh yeah, I know a lot of people are wondering when Sara is going to be coming home. Unfortunately there is not a date set for that. Sorry.
~Daniel H.
Tuesday, July 22, 2008
Hugs by Proxy
When I arrived on Sunday, Sara was asleep. Apparently she had stayed up all night watching TV. So I went about setting up my xbox and then picked up my book and started reading and eating lunch while she slept. It was about an hour before one of the nurses woke her up while checking her vitals. Sara didn't see me at first, so she was still groggy. But as soon as she spotted me, she woke up smiling. I started our visit by giving her a long series of hugs from her friends in the online community, as well as some from friends closer to home. She was glad to get them. We spent the next several hours watching Heros on my xbox. we are up to disc 5 now.
All in all she seemed to be doing pretty good. Unfortunately, I wound up with some kind of stomach thing that has caused me to miss two days of work, and tomorrow doesn't look too promising. I asked Kristina to call and make sure Sara didn't get what I got, and I haven't heard back, So I'm going to guess that she's ok.
~Daniel H>
All in all she seemed to be doing pretty good. Unfortunately, I wound up with some kind of stomach thing that has caused me to miss two days of work, and tomorrow doesn't look too promising. I asked Kristina to call and make sure Sara didn't get what I got, and I haven't heard back, So I'm going to guess that she's ok.
~Daniel H>
Results of second opinion.
Got the call yesterday afternoon. The second pathologist found no cancer, no precancerous cells and no phyllodes tumor tissue. They said they'd see me next year for my regular mammo and we'd ultrasound the new masses from this one. I am so relieved. At least I don't have to contend with my own health at the same time I am trying to bring Sara home.
Friday, July 18, 2008
Results and Training
Ok. Got the call about the results of my biopsy. Not cancer. There are cell irregularities and they want a second opinion, so they are sending it to a pathologist who specializes in breast tissue. But, to them, it doesn't look like its cancer. I get those results on Monday. I am relieved but still a little mentally overwhelmed at the whole event.
Yesterday I had the biopsy in the morning, then went home and took a nap. Then I went to the hospital to do caregiver training. I'm able to do everything they showed me. Had to get the official training first. Now I have to show them a couple of times that I can do it all. The nurses will watch me work with her and sign me off in the record for each care item. I have to show everybody else now too. I'm not sure if they have to go to the hospital to demonstrate capability, or if mine is sufficient.
We apparently got approved for only 16 hours worth of MediCAL coverage. That leaves 8 hours to cover, which should be good. I figure that if MediCAL can cover my work time, and my sleep time, then I can have Sara for the remaining 8 hours (or one of the rest of Team Sara can) and work with her during that time. Eight hours may be a bit much for someone else to have her, so if I am needing a break we may have to break it up somehow. I think it will be OK on the weekends for her Dad and her boyfriend to have her that entire time, but we will all sit down and work that out so that nobody gets overwhelmed or overworked and Sara gets what she needs.
Honestly, she's just thrilled she's going to be home. Everything else is secondary.
I did tell her not to expect much to change in her day once she's home. We aren't going to all of the sudden have her outside or exercising or in a chair. We have to condition her up to those things. First order of business is making sure we can maintain her in a stable condition in the home doing the same things she had done in the hospital. But once we do start working - it will be on head and neck stabilization and breathing exercises.
A lot of people have told me that they don't know how I'm handling all of this, let alone so well. Well, I don't always handle it well. I've been a mental wreck the last two days, but i've stayed away from everyone except talking to Don. (yes, we're talking...) I'm one of those people I guess that I can do anything at all that I have to, as long as I don't have to worry about myself. And as for Sara ... Look at that face... who couldn't do anything they could for someone as sweet and hopeful as her. That's my baby girl.
Yesterday I had the biopsy in the morning, then went home and took a nap. Then I went to the hospital to do caregiver training. I'm able to do everything they showed me. Had to get the official training first. Now I have to show them a couple of times that I can do it all. The nurses will watch me work with her and sign me off in the record for each care item. I have to show everybody else now too. I'm not sure if they have to go to the hospital to demonstrate capability, or if mine is sufficient.
We apparently got approved for only 16 hours worth of MediCAL coverage. That leaves 8 hours to cover, which should be good. I figure that if MediCAL can cover my work time, and my sleep time, then I can have Sara for the remaining 8 hours (or one of the rest of Team Sara can) and work with her during that time. Eight hours may be a bit much for someone else to have her, so if I am needing a break we may have to break it up somehow. I think it will be OK on the weekends for her Dad and her boyfriend to have her that entire time, but we will all sit down and work that out so that nobody gets overwhelmed or overworked and Sara gets what she needs.
Honestly, she's just thrilled she's going to be home. Everything else is secondary.
I did tell her not to expect much to change in her day once she's home. We aren't going to all of the sudden have her outside or exercising or in a chair. We have to condition her up to those things. First order of business is making sure we can maintain her in a stable condition in the home doing the same things she had done in the hospital. But once we do start working - it will be on head and neck stabilization and breathing exercises.
A lot of people have told me that they don't know how I'm handling all of this, let alone so well. Well, I don't always handle it well. I've been a mental wreck the last two days, but i've stayed away from everyone except talking to Don. (yes, we're talking...) I'm one of those people I guess that I can do anything at all that I have to, as long as I don't have to worry about myself. And as for Sara ... Look at that face... who couldn't do anything they could for someone as sweet and hopeful as her. That's my baby girl.
Tuesday, July 15, 2008
Ready for training
The doctor finally wrote the order for caregiver training yesterday. So now I can get the "official" instruction on how to take care of her. They did throw me a curveball yesterday, though. They will only train one person here (since it's not Vallejo) and then they train everyone else. Ok, so I'm doing the caregiver training on Thursday after my breast biopsy.
When I was there lastnight it was kinda fun to have all manner of nurses and staff filter in saying they heard that she was going home... The news is out around the hospital and people are so happy for her. I hope that the nurses at Kaiser Sacramento NSICU are still checking in. They'll be thrilled too that Sara is finally getting to go home. Sara's built up quite a support base in our Kaiser family.
Here's where I'm going to tangent and thank Denise Baker (step-mom) for having the foresight to not only keep Sara and Michael on her insurance, but pick such an awesome organization as Kaiser. When I can select Kaiser for my insurance (and the kids..) I am totally going to do it. What you lose in flexibility you more than make up for in world class care (at least in the ICU).
Lastnight she just wanted to hear me talk. So, talk about everything I did. I didn't stay as long as I'd like to have - I'm pretty tired. Haven't been sleeping. I know I said I wasn't going to worry about Thursday (well, Friday really - the results), but I am. She and I talked about it. I don't keep secrets from Sara. She's not worried. She knows how strong I am. I told her that I know I'm strong - just don't want to find out if I can handle all she needs, my job, raising her brother and fighting cancer all at the same time. So, i'm trying not to think about it...but it is somehow right in front of me. By Friday afternoon I'll know. Until then I'm not sleeping very well, so I was pretty beat last night when I was with her. She understood. She let me put my head on her hip and her hand on my head. When I did it she used her computer and said "Mom." She does that to tell me she loves me..she knows how happy it makes me.
She's so awesome. I'm so lucky to have her in my life.
When I was there lastnight it was kinda fun to have all manner of nurses and staff filter in saying they heard that she was going home... The news is out around the hospital and people are so happy for her. I hope that the nurses at Kaiser Sacramento NSICU are still checking in. They'll be thrilled too that Sara is finally getting to go home. Sara's built up quite a support base in our Kaiser family.
Here's where I'm going to tangent and thank Denise Baker (step-mom) for having the foresight to not only keep Sara and Michael on her insurance, but pick such an awesome organization as Kaiser. When I can select Kaiser for my insurance (and the kids..) I am totally going to do it. What you lose in flexibility you more than make up for in world class care (at least in the ICU).
Lastnight she just wanted to hear me talk. So, talk about everything I did. I didn't stay as long as I'd like to have - I'm pretty tired. Haven't been sleeping. I know I said I wasn't going to worry about Thursday (well, Friday really - the results), but I am. She and I talked about it. I don't keep secrets from Sara. She's not worried. She knows how strong I am. I told her that I know I'm strong - just don't want to find out if I can handle all she needs, my job, raising her brother and fighting cancer all at the same time. So, i'm trying not to think about it...but it is somehow right in front of me. By Friday afternoon I'll know. Until then I'm not sleeping very well, so I was pretty beat last night when I was with her. She understood. She let me put my head on her hip and her hand on my head. When I did it she used her computer and said "Mom." She does that to tell me she loves me..she knows how happy it makes me.
She's so awesome. I'm so lucky to have her in my life.
Saturday, July 12, 2008
Health updates.. Daughter and Mother...
Sara did have an issue the other night where she threw a plug in her lung and had trouble breathing until they got it suctioned. But, other than that, she's been stable and doing real well. We are working on some therapies to reduce her tremor on the left side of her face. It started after her shunt was put in, and beats with her heart. Kinda gross sometimes. But she gets that "bill the cat" ack look with her tongue jutting out and eye twitching with her heartbeat. Its really bad if she has a fever or her blood pressure is up. It gets to the point where she has trouble communicating. So we are working to address it with the least amount of medication as possible. Doctor hospitalist has requested a neurology consult for it.
My health is good, but I do have some issues to address. I had a mammogram today and we found another 2 lumps. In case you didn't know, I had three tumors removed in 2005 - the year of my first mammogram at age 40. They were the only type of tumor that can be benign and change to malignant. All others start malignant if they're going to be. Well, my 2006 mammogram was clear. I didn't have one done in 2007 due to lack of insurance. And I had one today, finding two new masses. The mammo tech went to the radiologist who reviewed it right then and ordered an ultrasound of the right side, which confirmed the two masses and blood flow to/from at least one of them (indicative of tumor activity). So he's ordered a vacuum-assisted needle biopsy for Thursday. Because phyllodes tumors can grow so quickly and change to malignant just as quick, we have to be aggressive in managing them. So, by Friday I will know what I'm personally up against.
Last time I had these Don and I talked out all the options and possibilities and decided together to have anything that came up just removed rather than waiting to see if it would change and become cancerous. I will do the same now. Better to stay healthy, then have to get back to healthy. So, I'm not really worried, until they tell me it is time to.
Besides, my focus is on my girl, getting her home and getting her better.
My health is good, but I do have some issues to address. I had a mammogram today and we found another 2 lumps. In case you didn't know, I had three tumors removed in 2005 - the year of my first mammogram at age 40. They were the only type of tumor that can be benign and change to malignant. All others start malignant if they're going to be. Well, my 2006 mammogram was clear. I didn't have one done in 2007 due to lack of insurance. And I had one today, finding two new masses. The mammo tech went to the radiologist who reviewed it right then and ordered an ultrasound of the right side, which confirmed the two masses and blood flow to/from at least one of them (indicative of tumor activity). So he's ordered a vacuum-assisted needle biopsy for Thursday. Because phyllodes tumors can grow so quickly and change to malignant just as quick, we have to be aggressive in managing them. So, by Friday I will know what I'm personally up against.
Last time I had these Don and I talked out all the options and possibilities and decided together to have anything that came up just removed rather than waiting to see if it would change and become cancerous. I will do the same now. Better to stay healthy, then have to get back to healthy. So, I'm not really worried, until they tell me it is time to.
Besides, my focus is on my girl, getting her home and getting her better.
Equipment showing up...
Sara's hospital bed was delivered and setup yesterday. The day before we got feeding supplies and a traech kit. Still the day before that we got a wheelchair, oxygen concentrators, oxygen bottles and a patient lift and some care supplies. The list is really starting to come together now.
There are still a few things left for the doctors to order - like caregiver training for one! LOL
They are also going to order up some pads and a pulse oximeter/heart rate monitor for her at night, so that she can sleep undisturbed but we can still monitor her. I'm also going to pick up an infrared camera for her room so we can physically look in on her, while allowing her to continue resting. She is looking so forward to being able to sleep with the door closed and without interruption. The monitor and camera were my trade-off with her for safety.
Michael did a great job of removing the molding caulk and grout from the bathroom. We found still more - A LOT MORE. Apparently, the dorks that put the tile into the bathroom were really stucco guys and took that approach. They put a paper membrane over the drywall, then chicken wire, then stapled it to the drywall with 1/4" staples. Barely enough to hold the wire and paper itself. To that they applied concrete and let it dry, then troweled mastic onto it and hand set tiles without spacers, so the gaps were all too close for grout. To secure the tiles on, they over grouted the the joints to give the appearance of a real grout joint.
So, when we went to saw out the molding grout and replace with mold/mildew resistent, we hit tile edges and then exposed gaps that could not be filled with grout. Long story short, I made an executive decision that since I was going to have to replace tile now anyway, I would just do the bathroom the way that worked best for Sara and replace it later if the landlord has a fit. He won't, mind you, as I am real good at tile and he'll end up with a better bathroom in the end. And we'll end up with a better place to clean and care for Sara. So, that is in progress.
Its a good thing, too, because i noticed before that the shower walls seemed to move ever so slightly when you ended up against them. That is not supposed to happen, but I figured it was me imagining it. Well, after pulling a few tiles off and then seeing the backer actually sag...well, I knew we were dealing with a crappy job. Michael pulled an edge back to see how it was attached to the wall and the entire thing came down on him. He wasn't hurt, but it easily could have happened to someone else over time.
What we found was lots of mold, spores, water damage, staining, and spiders. Yes, the gap was big enough in some places that spidey had made a home. There is also no plastic backing the drywall, and the joints aren't taped or mudded, so even there you have openings for water to travel. And it did...
The top edge of the shower had cracks all along the grout line (from the wall sagging down and breaking the joint which was the only thing holding the edge...again, no tape, no mud, no screws... I just wonder how people get away with such shoddy work. So, water had gotten behind everything and into the walls as well. I have to pull the drywall to see if there's rot back there, but am guessing there is. I really don't want to have to replace framing, but will if needed. At very least I'm going to open it up and put a heater in the bathroom until the moisture content ofthe wood goes back down towhere itshould be, then spray it with a mold inhibitor before building the wall back and building the shower. I do like construction, but really don't have time for this right now. But, hey, whatchagoingtado?
When I get the walls opened up and have wait time with them I'm going to get started on laying out the ramp. I'm going to try and tie it into the basic architecture of the house, so it looks like it really belongs. At the same time, I am adjusting the planting beds out front (because I need the clearance) and getting rid of weeds and unkept plantings. I'm not going to focus on the planting beds at all this summer. I'll just build out my landscaping plan, with the first focus making the backyard accessible for Sara and getting rid of the rocks everywhere. (and pulling down the trees that have been pruned (butchered) into unhealthy growth and shape. and getting rid of the blackberries...)
Plenty to keep me busy when I am not taking care of Sara or working. The good part is that I really enjoy putzing and fixing the house. It is relaxing to me to step away from the computer, pick up a rake and move stuff around, or go stick my hands in dirt and grow something. It is how I counter the complexity of technology with the simplicity and comfort of home.
There are still a few things left for the doctors to order - like caregiver training for one! LOL
They are also going to order up some pads and a pulse oximeter/heart rate monitor for her at night, so that she can sleep undisturbed but we can still monitor her. I'm also going to pick up an infrared camera for her room so we can physically look in on her, while allowing her to continue resting. She is looking so forward to being able to sleep with the door closed and without interruption. The monitor and camera were my trade-off with her for safety.
Michael did a great job of removing the molding caulk and grout from the bathroom. We found still more - A LOT MORE. Apparently, the dorks that put the tile into the bathroom were really stucco guys and took that approach. They put a paper membrane over the drywall, then chicken wire, then stapled it to the drywall with 1/4" staples. Barely enough to hold the wire and paper itself. To that they applied concrete and let it dry, then troweled mastic onto it and hand set tiles without spacers, so the gaps were all too close for grout. To secure the tiles on, they over grouted the the joints to give the appearance of a real grout joint.
So, when we went to saw out the molding grout and replace with mold/mildew resistent, we hit tile edges and then exposed gaps that could not be filled with grout. Long story short, I made an executive decision that since I was going to have to replace tile now anyway, I would just do the bathroom the way that worked best for Sara and replace it later if the landlord has a fit. He won't, mind you, as I am real good at tile and he'll end up with a better bathroom in the end. And we'll end up with a better place to clean and care for Sara. So, that is in progress.
Its a good thing, too, because i noticed before that the shower walls seemed to move ever so slightly when you ended up against them. That is not supposed to happen, but I figured it was me imagining it. Well, after pulling a few tiles off and then seeing the backer actually sag...well, I knew we were dealing with a crappy job. Michael pulled an edge back to see how it was attached to the wall and the entire thing came down on him. He wasn't hurt, but it easily could have happened to someone else over time.
What we found was lots of mold, spores, water damage, staining, and spiders. Yes, the gap was big enough in some places that spidey had made a home. There is also no plastic backing the drywall, and the joints aren't taped or mudded, so even there you have openings for water to travel. And it did...
The top edge of the shower had cracks all along the grout line (from the wall sagging down and breaking the joint which was the only thing holding the edge...again, no tape, no mud, no screws... I just wonder how people get away with such shoddy work. So, water had gotten behind everything and into the walls as well. I have to pull the drywall to see if there's rot back there, but am guessing there is. I really don't want to have to replace framing, but will if needed. At very least I'm going to open it up and put a heater in the bathroom until the moisture content ofthe wood goes back down towhere itshould be, then spray it with a mold inhibitor before building the wall back and building the shower. I do like construction, but really don't have time for this right now. But, hey, whatchagoingtado?
When I get the walls opened up and have wait time with them I'm going to get started on laying out the ramp. I'm going to try and tie it into the basic architecture of the house, so it looks like it really belongs. At the same time, I am adjusting the planting beds out front (because I need the clearance) and getting rid of weeds and unkept plantings. I'm not going to focus on the planting beds at all this summer. I'll just build out my landscaping plan, with the first focus making the backyard accessible for Sara and getting rid of the rocks everywhere. (and pulling down the trees that have been pruned (butchered) into unhealthy growth and shape. and getting rid of the blackberries...)
Plenty to keep me busy when I am not taking care of Sara or working. The good part is that I really enjoy putzing and fixing the house. It is relaxing to me to step away from the computer, pick up a rake and move stuff around, or go stick my hands in dirt and grow something. It is how I counter the complexity of technology with the simplicity and comfort of home.
Thursday, July 10, 2008
Update for today
The nursing service went to Walnut Creek and evaluated Sara. She lit up when they told her they were there to try and get her home. When the account manager and clinical director get back to Santa Rosa they are going to call me.
Interestingly, almost as soon as they left Walnut Creek the discharge planner called me and said Sara didn't need ICU anymore and they wanted to know if they could move her to Santa Rosa on a regular ward. Needless to say, when she truly IS ok enough to go to a regular ward then I am happy for that. But the doctors tell me one thing, her needs tell me one thing, and the discharge planner are telling me another. Sara's needs trump everyone. So, that is today's sort out.
Even with all the positive going on with bringing her home I am actually just dead inside. After months of wanting more of him in my life and getting less and less, I finally had to let him go do what he's going to do. We've had our issues, as any couple does, but we truly do love each other. I had even gotten OK with some stuff I never would have put up with from anyone before. Just wanted him, and just wanted him to be as open and honest and loving with me as I am with him. He was for a long time, and then other things started happening and it started to fade. I started fighting to keep it, but that seemed to push him away. And when I backed off to give him space, that seemed to push him away too. I couldn't win him back from the issues, no matter how forgiving I was. I guess that's one reason why I'm so sad. Never in my life have I loved a man this much. And I don't want anybody else. I'm his regardless.
I slept on his pillows last night, searching for the merest scent of him...
I adore my children...
and truly love Don...
but I hate my life.
Interestingly, almost as soon as they left Walnut Creek the discharge planner called me and said Sara didn't need ICU anymore and they wanted to know if they could move her to Santa Rosa on a regular ward. Needless to say, when she truly IS ok enough to go to a regular ward then I am happy for that. But the doctors tell me one thing, her needs tell me one thing, and the discharge planner are telling me another. Sara's needs trump everyone. So, that is today's sort out.
Even with all the positive going on with bringing her home I am actually just dead inside. After months of wanting more of him in my life and getting less and less, I finally had to let him go do what he's going to do. We've had our issues, as any couple does, but we truly do love each other. I had even gotten OK with some stuff I never would have put up with from anyone before. Just wanted him, and just wanted him to be as open and honest and loving with me as I am with him. He was for a long time, and then other things started happening and it started to fade. I started fighting to keep it, but that seemed to push him away. And when I backed off to give him space, that seemed to push him away too. I couldn't win him back from the issues, no matter how forgiving I was. I guess that's one reason why I'm so sad. Never in my life have I loved a man this much. And I don't want anybody else. I'm his regardless.
I slept on his pillows last night, searching for the merest scent of him...
I adore my children...
and truly love Don...
but I hate my life.
Wednesday, July 9, 2008
Reality Check
We got a bunch of equipment into the house today. It is exciting and a little depressing at the same time. Exciting to be getting her home..depressing that she's coming home in different shape than she left.
I was thinking about the day of her accident. She slept as long as possible. Got up. Grumpy at first until she drank a big glass of orange juice and checked her email. Then she got her work scrubs on, got her book bag for school and was off to her day.
Never in a million years would I have imagined that she wouldn't come home...or that it would be the last time I would hear her happy chirpy voice (for who knows how long...ever?..)...or that she would go from perfectly healthy, happy, working, loving, going to school, on her way to the future she wanted to where she is now...in an instant.
But she IS coming home. I know that it could be worse. Some kids never come home and that's that. She and I have been in the next room a couple of times when someone else had to let their teenager go because they really were brain dead... we counted our blessings and sent our most loving thoughts to the other family. The first time we cried..feeling a little guilty at the relief that it wasn't her.
There is so much ahead, for her, for us all. And plenty of adjustments to do and considerations I never even thought about before. But the alternatives, her having died or living in a skilled nursing facility, are just not what is right for my little girl.
On a lighter note...we figured out why door jambs are wider...LOL. Can't move the wheelchair from the living room to anywhere. Have to remove a door jamb. We're already tearing out the bathroom (to get rid of the mold mainly), but it will be easier to get her cleaned in a shower. I won't even be able to get her in the house if I don't get that ramp built. I guess Saturday is the day for that. Michael will be gone to his fathers house, and Mike will be with Sara. I'm actually looking forward to building it.
I was thinking about the day of her accident. She slept as long as possible. Got up. Grumpy at first until she drank a big glass of orange juice and checked her email. Then she got her work scrubs on, got her book bag for school and was off to her day.
Never in a million years would I have imagined that she wouldn't come home...or that it would be the last time I would hear her happy chirpy voice (for who knows how long...ever?..)...or that she would go from perfectly healthy, happy, working, loving, going to school, on her way to the future she wanted to where she is now...in an instant.
But she IS coming home. I know that it could be worse. Some kids never come home and that's that. She and I have been in the next room a couple of times when someone else had to let their teenager go because they really were brain dead... we counted our blessings and sent our most loving thoughts to the other family. The first time we cried..feeling a little guilty at the relief that it wasn't her.
There is so much ahead, for her, for us all. And plenty of adjustments to do and considerations I never even thought about before. But the alternatives, her having died or living in a skilled nursing facility, are just not what is right for my little girl.
On a lighter note...we figured out why door jambs are wider...LOL. Can't move the wheelchair from the living room to anywhere. Have to remove a door jamb. We're already tearing out the bathroom (to get rid of the mold mainly), but it will be easier to get her cleaned in a shower. I won't even be able to get her in the house if I don't get that ramp built. I guess Saturday is the day for that. Michael will be gone to his fathers house, and Mike will be with Sara. I'm actually looking forward to building it.
Tuesday, July 8, 2008
I'm jumping out of my skin!!!
Just got a call from Apria Healthcare - they do part of the equipment orders for Kaiser and they are shipping out her breathing supplies and gear TODAY!!. It will be at my house tomorrow.
She's coming home, baby. She's coming home. OMG...I have to call the hospital and find out what else is going on...
Woohoo.
She's coming home, baby. She's coming home. OMG...I have to call the hospital and find out what else is going on...
Woohoo.
Sunday, July 6, 2008
wow...I didn't blog all week...
didn't even realize it.
Lots going on. Still working on getting her home and all the yadda yadda involved with that. The same boloney from last time (leaving sacto) - want to send her to sub-acute (which I squashed). And again through the long list of new discharge planners to the case. A daily opportunity to bring more of my patience out...(and use it)..
Sara is doing great. They have her on antibiotics for a slight infection, but no pneumonia. She keeps getting her pulmonary treatments and coughing well. They are getting her up into the cardiac chair twice a day again (FINALLY!). That will definately help her being upright. The body doesn't do well when it is horizontal all the time.
Her spirits are good. We've been working a lot on her computer and communication. I've been fine tuning the programming of this thing. It really is an amazing machine, but overwhelming to use and program. This machine is a rental (through Kaiser) so I am looking for a way to buy her own. She does worry about becoming dependent and then it being gone. But I told her if they tried to take it back before she has her own, i'll just steal it. (just kidding...i'm the goodiest of goody two shoes...). I told her not to worry about that. Nobody wants to take it away.
So, we've been reprogramming screens, putting in some of her sayings and responses, streamlining her being able to email and respond, putting music on it so she can listen to MP3s, and putting some of her pictures on. Ooh...before I forget...can her circle of friends please send her a picture of yourself. She misses your faces.
Also, when it comes to starting an email to someone, she's still having trouble. She doesn't know what to say or where to start. So, I'm going to email her circle of friends and ask them to start from their end. Ask her a question. Tell her what you've been up to. You know what she's been doing the last few months... :) I'll help her navigate to respond (we're still kinda clunky on that).
Her room is painted and I'm putting up the shelves this week. She'd love it if her friends could come decorate her room for her. I'll have all the pins and hangars you could want. Daniel will tell you that we have crates of all her stuff. He and I carefully packed it away last year. It'll be a real blast to get it out and back on the walls. Maybe I could order a few pizzas and we could all have dinner together, friends could decorate, and then we can talk about her homecoming. If that sounds good, please contact Daniel and he'll let me know what works for you guys.
I spent this weekend working and cleaning the house. Steam cleaning the carpets, waxing the floors, working on the bathroom and yard. I'm nesting. My baby girl will be coming home soon and I really want the house to be right. (not to mention the fact that I have to keep it super clean once she's home...)
Anyway, that's a quickie update. I am sitting here with a dog at my feet, despite it being hot in the house. Working away and organizing things. Anybody with my number, feel free to give a call and stop by anytime. My house is going to become a very open place of friendship, laughter, and healing, not just for Sara, but for our entire family.
Lots going on. Still working on getting her home and all the yadda yadda involved with that. The same boloney from last time (leaving sacto) - want to send her to sub-acute (which I squashed). And again through the long list of new discharge planners to the case. A daily opportunity to bring more of my patience out...(and use it)..
Sara is doing great. They have her on antibiotics for a slight infection, but no pneumonia. She keeps getting her pulmonary treatments and coughing well. They are getting her up into the cardiac chair twice a day again (FINALLY!). That will definately help her being upright. The body doesn't do well when it is horizontal all the time.
Her spirits are good. We've been working a lot on her computer and communication. I've been fine tuning the programming of this thing. It really is an amazing machine, but overwhelming to use and program. This machine is a rental (through Kaiser) so I am looking for a way to buy her own. She does worry about becoming dependent and then it being gone. But I told her if they tried to take it back before she has her own, i'll just steal it. (just kidding...i'm the goodiest of goody two shoes...). I told her not to worry about that. Nobody wants to take it away.
So, we've been reprogramming screens, putting in some of her sayings and responses, streamlining her being able to email and respond, putting music on it so she can listen to MP3s, and putting some of her pictures on. Ooh...before I forget...can her circle of friends please send her a picture of yourself. She misses your faces.
Also, when it comes to starting an email to someone, she's still having trouble. She doesn't know what to say or where to start. So, I'm going to email her circle of friends and ask them to start from their end. Ask her a question. Tell her what you've been up to. You know what she's been doing the last few months... :) I'll help her navigate to respond (we're still kinda clunky on that).
Her room is painted and I'm putting up the shelves this week. She'd love it if her friends could come decorate her room for her. I'll have all the pins and hangars you could want. Daniel will tell you that we have crates of all her stuff. He and I carefully packed it away last year. It'll be a real blast to get it out and back on the walls. Maybe I could order a few pizzas and we could all have dinner together, friends could decorate, and then we can talk about her homecoming. If that sounds good, please contact Daniel and he'll let me know what works for you guys.
I spent this weekend working and cleaning the house. Steam cleaning the carpets, waxing the floors, working on the bathroom and yard. I'm nesting. My baby girl will be coming home soon and I really want the house to be right. (not to mention the fact that I have to keep it super clean once she's home...)
Anyway, that's a quickie update. I am sitting here with a dog at my feet, despite it being hot in the house. Working away and organizing things. Anybody with my number, feel free to give a call and stop by anytime. My house is going to become a very open place of friendship, laughter, and healing, not just for Sara, but for our entire family.
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