Hi all. Well, we went to wound care in San Ramon today. We told the wound specialist our concerns with the way the wound vac has not been draining the 2nd wound. He agreed when he saw that it was leaking through the dressing. So since that is "the problem child" the vac is now only on that 2nd wound. That means it gets the drainage attention it needs. Very happy he was willing to make that change. The tailbone wound is now covered with a flat dressing, an alginate dressing with antimicrobial silver in it. Then a type of foam over that. It's to prevent bacteria and infection in that area since the wound vac is no longer on it. The 2nd wound has exposed bone (you can't see it but you can feel it as it's way deep in the side of the wound). So the surgeon who was there today, Hamstra, thinks we'll probably have to have a skin flap done.

That is what was discussed before, on the tailbone, when that had exposed bone. It's something we have to look into further. It would be a different surgeon operating, a plastic surgeon. We'll see Wotowic, the plastic surgeon he went to when he had problems with MacNemar (the bastard plastic surgeon from John Muir). We'll see what he says the options are. The problem with the flaps is that if you do one you can't do that specific type of flap in that area again. If he continues to have problems with pressure sores any time in the future that could be a big problem. So it can't be a hurried decision. But that bone can't stay exposed either.

Then we'll also look into physical therapy next week. Specifically, for the stiffness in his legs which occured for the first time around the same time the first pressure sore started a year ago. A woman I know, recommended Alta Bates Herrick location on Dwight in Berkeley. She got her PT certification there. I looked at their website and they seem like a good fit on paper. They work with the Center for Independent Living (first Disabled Organization started in Berk) and work with PT for paraplegics a lot. They also specialize in neurology rehabilitation including neuropsychology. They even have a wound specialist. So hopefully they will be another important piece of this massive jigsaw puzzle. Since we feel strongly the two problems, the leg stiffness and the pressure sores, are related. He never had either before last summer.

This week, I found out my cousin's 6 yr old daughter (I guess my niece) has E-Coli. She's been in the hosp almost 2 wks and will probably have to another couple. She's had daily blood transfusions. How scary! I hope my uncle will e-mail me updates.



Look at the great toasting flutes I got on eBay! Only $25-woo hoo! Sorry, I'm happy. They're the Anastasia style from Things Remembered, normally $50. They should go well with our vintage aspect. Can't wait til they come, hopefully well packaged. Fingers crossed...
Here is one of the monograms someone made for us. Jewells13, (Racquel) from the knot. She's still playing around with different fonts but we like this one. Probably a more simple "P" and my name in caps like his.

Ok, bed time. Everyone have a great wknd!

DREW IN LITTLE LEAGUE, 1986
I know I'm addicted to pictures of Drew as a kid now! ;) We've been going thru our old pictures and I love the Little League ones. He's been watching the Little League World Series on ESPN 2 reminiscing about how much fun he had. He seems to have more fun watching the little guys than he does watching the Major Leaguers. They are very cute and it's all about having fun still.

I've been collecting his birth certificate, honor roll certificates, report cards, paper clippings of his little league team, things he wrote and pictures he drew as a kid and putting a scrapbook together so they won't get messed up. Or worse than they are! No, just one got ripped. This is part of my "Spring" Cleaning. When we moved in we just threw things in boxes and the boxes into closets. I talked to Edward today and I all I want to mention is that before I said good bye he said "Love you". That's all I need to say...

I'm starting to read books for my Calif Hist class while keeping Drew company. He can only be up for a few hrs a day. I'm trying to think of things he can do during the day in bed. I'm gonna try to buy a laptop this fall for him to use. And then when he's able to be up more again I'll use it for research. It's esp hard to do without one when school's so far away.
OAKLAND BAY & BRIDGE, 1930's

On Monday, Drew's gonna call the wound specialist and tell him our concerns about the 2nd pressure sore wound. The area hasn't been healing visibly the way the 1st one did and we don't know why. Is it because it has to share the wound vac w/the first wound, meaning it doesn't get enough drainage? Or is it just different because of where it's located? They have talked about stopping the vac on the first one to give the second the attention it needs.

They think the vac may have peaked in usefulness for the first wound anyway. It hasn't changed much the last 2 weeks. We obviously need to do something different because the 2nd wound area leaks through the wound vac dressings. It means I have to patch up the dressings and I obv don't have the training to do them that well. I know this is hard to follow for those unfamiliar with pressure sores (which is prob most of you!). I'm trying to describe everything the best I can. He has an appt Friday w/both the wound specialist, Bill Bryson, and the surgeon, Doug (?) Hamstra, who saw him in the hospital. Bill said they'd make a decision about the course of action w/the wound vac then but we think we need to do something sooner. We may have to meet w/Bill before Friday w/Hamstra.

I know I sounded freaked out yesterday. I'm just worried about all of this and feel powerless to help sometimes. The best thing I can do it seems, is record the events and changes so we know what happened when. Next month we'll finalize our contract with the caterer and decide on a wedding photographer. And on the 11th I'll go to the Ghiradelli Chocolate festival with some friends. Can't wait!

Here's the logo Drew made for my mom's trail crew organization. Isn't it good? He's really good at computer graphics. She really liked it and it gave him an outlet during this tough time. Since he has had these pressure sores we have been so limited to what we can do. Esp him, of course. And having this 2nd one he has to be esp careful. He's basically bed-ridden exc for medical and counseling appts. And he has been staying in the bed a lot as he knows this one is right on his butt so it is affected by sitting. The first one around the tailbone isn't. I think we're going crazy. And he feels like he's in the hosp again. Almost. Plus there is a new area where the skin has broken down somewhat, so we have been watching that very carefully. It's dark reddish which is a concern. He has such a boney butt ;) that it could become a sore very fast. Please think of him (and his butt ;) no you don't have to think about that specifically!) that it will not become a THIRD pressure sore.

Drew at 2 yrs old! So cute!

I'm hoping we can get a laptop soon both for him to use when he's in bed and when he's healed for me for research. But of course we're broke cuz I'm in school and he CAN'T work. If he had a laptop he might be able to try some online thing again. (He had an online business but it folded. It's difficult to stay afloat without a lot of money to pour into advertizing). It just worries me cuz it makes him depressed (as it would anyone). Even though he's doing counseling, new physical problems keep springing up so when he gets okay mentally for one thing something else happens that he has to deal with mentally/emotionally.

And of course, it's taken it's toll on me, too. We both do things to try to get through and prevent people from worrying about us but there is a point where that breaks down. I know I need to have a therapist for all this but I have no health insurance right now. I can go to the campus health center if I get sick but for things like counseling I have no access. I'm going to Drew's counselor with him for some of the sessions and talk to her but. . . I have no energy to face this new school yr. The summer has only been relaxing in short spurts btwn Drew's pressure sore wounds and my younger brother's prescription drug addiction/nervous breakdown. I feel like I have no idea what to expect. The first pressure sore wound will have taken a yr to heal, what if the second one takes a yr? That puts us at our wedding date!!! I'm afraid we'll be doing our wedding from his bed! I think I'm gonna cry now. Thank you for listening. I just had to get it out... We really do appreciate everyone's thoughts and prayers! Good night!

Apparently, our bathroom is a toxic waste zone! No, but this lye cleanser I got to dissolve the hair in our shower drain (which can't be removed) said I must wear "protective eyewear"(sunglasses were the closest I had!) and rubber gloves. I think I'll try to sell the look as "toxic waste chic" to a big time fashion designer. Or maybe I can market a Toxic Waste Barbie complete with a plastic spoon required to dispense the powdery lye substance. I couldn't even pour it down the drain directly as the powder could've splashed up, under my glasses and exploded my eye out or burned my skin off. Fortunately the stuff worked! (Disclaimer: my skin was in no danger of burning off nor were my eyes in danger of being blown out.)

Other than that, Drew is doing fine. He sees the wound specialist on Monday. We're thinking maybe the older wound on his tailbone doesn't need to wound vac anymore. The skin on the edges is getting a little too dry and curling in as it heals when the vac is on. In the hosp they didn't have the vac on it and the edges healed fresher. So the nurses from Crescent healthcare and I think that since it's healed down prob as much as it can with the vac maybe it's time to do something different. This way the second wound can get more access to the suction from the vac. Trying to bridge them both on one suction doesn't work well. The wound specialist is very open to changes when they make sense. Very happy about this! Drew has been better about being off his seat, being on the bed even though it's hot (for some reason it has to stay 90 degrees!) and I'm stretching his legs more.

In other news, I may have found my wedding dress!! I'm not 100% sure yet. I want a second (and maybe third and fourth...) opinion. I'm hoping Laurel (my maid of honor) can go with me to the shop. They only have one, it fits me and they won't get any more so I need to act fast! It's a vintage style (sort of '20's and '30's hybrid) silk satin with lots of beading. I'm just concerned about the dangling beading off the skirt with Drew's chair. Don't worry it doesn't look flapper-ish. It's a floor length. Here are some crappy camera phone pictures of the top:



We met with a photographer yesterday, a little out of our range but we liked her. I'm setting up more interviews. Drew also had a counseling session and seems to like the counselor. However, he is suffering from post-A's (baseball) loss syndrome :( They were doing so well. I think he'll make it ;) We'll keep you posted on everything.

Drew's home! He's very happy to get a full night's sleep, not woken up every 4 hrs to have his temperature taken. His first, tailbone, wound is MUCH smaller. They did rehook the wound vacuum back up and change the dressings 3 days a week again. If we find the 3 times a week dressing changes isn't sufficient we'll say so. It would be very impractical to have it changed more than once a day with a regular flat bandage dressing like in the hospital. They think it will be like a month or so before they can stop the vac on that one and just do stitches or a small skin flap. The second one will be longer to heal but not as long as the first has. That one was developing a yr ago already! He's training himself to do little things to prevent pressure on the area which is the main thing.

We have the same company doing the IV changes and dressings as when he got out of John Muir back in Nov, because they specialize in IV treatments. It's a 5 week IV which has to be flushed 3 times a day. We're working on getting the physical therapy. It may be possible to get the former home nurse care company, Sutter Medical, to do it at one of their facilities. Or we'll find somewhere else depending on his insurance. We are happy that his go-to guy for wound care will be Bill, the Wound Ostomist from the hospital. Much better communicator than the Wound Care Surgeon and follow up doctor at John Muir. I know these hospital names mean nothing to you outside of the Bay Area but for those here they'll be familiar. And I want people to know what places have good care and which places don't. We will be so glad when this subject is not a topic of daily discussion anymore. It makes him feel like a patient all the time. It would have been so much better if they had discussed the dangers of pressure sores with him more fully when he first became a paraplegic. He worked so much on being okay with just being in the chair and dealing with that everyday this is a whole new can of worms. Hence, the therapy both physical and mental.

Speaking of vacuums, okay the wound vac was back a bit but...we finally found the bag that fits our vacuum! Our piece of crap, like 1974 orange and brown Hoover that is about as efficient as me blowing on the floor!!! It was given to us and now we know why! So if you have a 1975 vacuum you'd like to donate to us please...DON'T ;) Now we need real curtains as I'm still doing the college student (hey, I am again!) sheet over the window thing. Speaking of our crappy living situation, the water in San Leandro tastes like, well bad. And it makes me sick! Really, what do you do when your WATER makes you sick!? I'm getting all bottled now but I'm even thinking about cooking with it since I still feel nauseous right now. Anyway, enough of that. I accidentally gave Drew my sinus infection so he's sniffling away. He's trying a medley of Advil Allergy Sinus, Tylenol A/S and Robitussin Head Cold/Sinus. The last worked for me but not him. I don't get that. I feel like my grandma talking about our illnesses and appliances, now I just have to get a beehive and mispronounce many words. That's mean, sorry. But it will be great to go out and feel like a young couple again. So many things we haven't been able to do in like a year!!

No more wedding updates right now. I have been playing w/my grandma's veil and have photos of me in it in my planning bio on theknot.com. Just put hannikan the TALK search. Hopefully, we'll find a photographer soon. We want to take engagement pictures as soon as Drew is done with the wound vac. Oh, my grade was fixed! And I got an A, woo-hoo! School starts the 24th and I'm working on getting my books right now. I'm gonna have a 9:30 AM class. I'll have to get up at like 7! Tomorrow, I finish up the clean up of St Clement's library. Hopefully, the campus library will hire me now that I have that to put on my resume. Ok, good night!~Anna Sui bouquet~