Slow Cruise

Not too much going on at the hospital. Well, that's not quite true. There's a lot going on all the time to maintain and improve Rosina's condition, but her condition has not changed that much. She is getting dialysis almost daily. Her kidneys aren't working quite right, but they are in a condition can heal over time, so the dialysis is to hold her over. Her white blood cell count has been pretty low and they're not quite sure why. They did a bone marrow asphersis to check that out, results next week. Lots of people have been in to see her which can be great and uplifting, as well as very tiring. So those of us that have been by have gotten both responses. Her level of awareness/awakeness has been about the same all week, recognizing faces, mouthing some words, cracking a small smile. So she continues on this slow cruise.


If you've known Rosina for a while, you might know what she's doing with that thing on her head. She's turning a "puddim", which is pronounced "pu-jeen" in portugeuse; flipping it out of the mold and onto a plate. It's a Brazilian flan or sort of a créme caramel, and Rosina has made a lot of them. If she was home, she would have made one this week. We've had lots of people here at the house, quite a fest in her honor. Hope you've enjoyed your week as well.

xp
ph

Christmas Eve

Not much change here. Rosina is listening and responding to questions, nodding and shaking her head. We've talked a lot and I've told her many times how many people are thinking about her. Jake and Nina have both been back to see her. I read some notes to her that she's received and sang Silent Night to her in Portuguese (Noite Feliz). She got another plasma exchange which takes a couple of hours, and also dialysis, which takes even longer I believe. She is a little worried, but she is calm.

We have family here now for Christmas, and more arriving this week - it will be loud. Whether you celebrate Christmas or not, you're probably out of your normal routine this week, seeing people you've known a long time. Enjoy it!

xo
ph

Friday

Rosina had some symptoms that led them to do another bronchoscopy today, but her lungs were clear. There was actually a little something in there that they sent off (not blood), but she's already getting antibiotics and it doesn't seem to be an infection. They're lowering the steroids again. So it was good, although now they have to figure where those symptoms come from(!). She was also more alert, as much as she's been in a long time, and when I said "I love you, can you hear me?" she nodded yes. Which is a lot right now. So there are lots of things in question, ups and downs continue. Here's to more ups.

xo
ph

Saudade

"Saudade"(pronounced sow-da-gee) is a wonderful portuguese word that doesn't really have a literal english translation. It kind of means "missing", as in "I miss you", but it has more flavors. It's a longing in your heart, and it carries a kind of bittersweet acknowledgment of fleeting things; that the enjoyment of being together is an end in itself if not simply the best thing of all - very Brazilian to me. And very Rosina. Saudade, mb, muito saudade.

She is kind of the same. Her body is under a lot of stress and there are a variety of treatments going on. Honestly, it's tough. I took Nina out to the hospital last night, it was a really good visit. Although Rosina cannot respond, Nina talked to her for a couple of hours and held her hand. Nina said it wasn't as weird as she thought it was going to be. It was nice. I took Jake and Will today. Their reactions were mixed. Jake was a bit choked up, Will was a little weirded out. I sat with him outside later. I asked him how he thought mom looked. He said, "She'd win first prize in a Halloween contest" which was both heartbreaking and funny. But it was definitely good for them to go.

We did a project where we put Rosina's handprint on some fabric. Later social services people at the hospital will use it to make a pillow that the kids can have. They pick the fabric and Will, for one, put his hand print next to Rosina's. I actually took her hand and brushed paint on it to make the print. It reminded me of how she always talks about stuff we used to make together when we met, like flyers for the band (we were in a band together) or later, Christmas cards. A little art project. She'd like it.

She was more alert today, moving her head a bit. A lot of people came by. She's had another plasma exchange and had dialysis a couple of times. Her kidneys aren't working that well. They did a CT scan of her head and neck and it was all normal. Yesterday they found the bleeding in her lungs had started again and they went ahead and increased the steroids. Today, her lungs were better and they were able to bring the oxygen levels on the ventilator back to normal (30%). It's a lot of stuff for a sweet thing.



xo
ph

Evolving

Yes, it's her. You can assume that if a couple days goes by without any news here, it's because there's not a lot of news. The waking up has been so slow, and the difference between days is how many times Rosina nods her head, or how she looks around, or if she was able to close her mouth. She's starting to do all three. She looks better.

This morning they switched the ventilator to over to CPAC mode, which means that she's still connected, but she's doing the breathing herself, not the machine. If her respiratory rate gets too slow, the machine kicks in. That's a small but good step. They have also lowered her steroids and so far have not seen any new bleeding in the lungs, which is what the steroids were for. There was a little concern today as they saw some fresh blood around the trach, and they had to do a bronchoscopy, but the lungs were okay. That was a relief. The "bronch" as they call it, is a lot easier with the tracheotomy. Considering how slow this is going, it's a good thing they did that. She has also had abnormal numbers related to her liver and today they also did a plasma exchange. As a by product of the bone marrow transplant (remember the bone marrow transplant?) your plasma takes a hit and needs to be freshened up. So they wheel in a machine which takes blood out of you, spins out the plasma in a centrifuge and then adds new plasma as the blood goes back into her body. There's also been some concern about her kidneys, but that changes day to day. It's hard to keep track of all this stuff and how it is caused and/or connected. I'm not sure, but I think the plasma condition also shows up as low platelete numbers, and she's been getting platelets. She's been getting everything.

I was over there today and talking to her and her eyes opened a bit, but when I sang a bunch of songs to her, songs I made up to sing to the kids, her eyes were open wide. She heard it. It was nice. Those songs usually put her to sleep (as they should).

Thanks all, for the kind words!

xo
ph

Three Wedding Pictures

Today, December 16th, is our nineteenth wedding anniversary. I remembered this one. We actually got married twice. The first time was in Pennsylvania, and since Rosina's family was all in Brasil, my mother, a woman with three boys, got to plan a wedding. For Rosina and me it was really easy. We showed up one week before the wedding and there it was. It was at night, black tie, and the church was decorated with greens for Christmas.

Months before we had decided to get married, Rosina was in the attic with my father and he was opening these old boxes of dresses that belonged to my Grandmother. They were all from the twenties, flapper dresses and evening gowns. Rosina said, "If there's a wedding dress in that box, I'll marry your son." And there was. It's the dress Rosina actually wore for the wedding. My grandmother wore it in 1927. Rosina put finger waves in her hair and wore these cute silver shoes. She looked great. My father lost it when he saw her all dressed up like that. He walked her down the aisle.

Our second wedding was in January in Brasil. It was at her brother's ranch about an hour and half from Rio de Janeiro. Her bouquet was made from flowers gathered around the property. We wore white, we were barefoot and we got married by the bank of the river that runs through the property. It was pretty groovy. The justice of the peace that married us was completely wall-eyed so he managed to look us both in the eye at the same time. The ceremony was in portuguese so Rosina squeezed my hand when I was supposed to say "sim" (yes). After the ceremony, we climbed up on this big rock and jumped into the river. It all seems very fairy tale right now. It's like a movie where all this nice stuff happens and it's charmed and romantic and then later in the story the wife gets sick and while you're drawn in and feeling it, you're kind of pissed off that the nice story took this highly dramatic and uncalled for turn. It certainly sharpens your appreciation for the easy times. Most of which you didn't even know were that easy. I love you Z, here's to many more years. Nineteen's not a very big number.


Rosina is holding steady, opening her eyes, and proceeding very sloooowly. So far, so good. We have a mile of baby steps. Thanks so much, everyone for your concern and kind words, and help.

xo
ph

More Steady

Not much new. Taking it easy this weekend. Waking up slowly. Keeping an eye on all the fragile things. Thanks for all the singing - We've been hearing it!
xo
ph

Long Day

I'm here in Rosina's room, she's down in surgery. They're giving her a tracheostomy which is a tube for breathing so they can take the other thing out of her throat. (fyi - a tracheotomy is the incision, a tracheostomy is the plastic tube) Once she has that, she can wake up and get reacquainted with the daylight without having the thing in her throat (which requires sedation). It's much easier for her and it's still attached to the ventilator if she needs it. They are also giving her a tube into her stomach so they can deliver food there directly instead of continuing the IV feeding. Both the ventilator and the IV feeding, along with other things, can take their toll after a while. Assuming these things are working out okay, then she can continue to recover from all this stuff!

Later - after getting home. The first thing they had to do today, which they were doing when I arrived, was give her a new catheter in her chest. She's getting a lot of stuff intravenously and some of it can't be mixed, so they needed some new lines; they added three. It's a minor surgery that they do there in the room. Her hands and wrists are a bit swollen so it's not good for an IV line. They temporarily put one in her toe! Crikey! Then she went down to surgery to get the "trach" and the PEG (percutaneous endoscopic gastrostomy) tube. It's quite a job getting that bed and all the IV stuff etc. out of the room. She was in surgery for an hour or so and then back up. A lot of people needed to hook up a lot of stuff. By the way, I am continually impressed by the level of care that she's receiving.

But after she came back they did a routine chest x-ray and saw that there was air in her chest that was pushing her lungs to the side - it was probably from getting the catheter - so they quickly had to do another procedure there in the room to get the air out, and some fluid as well. So she's got another tube in her, in her side. Now there are eight, total.

But it's good she has the tube out of her throat and that thing off her head that holds it in place. She'll start getting some solid/liquid food directly into her gut and they'll start letting her wake up again. Again, we are proceeding slowly and with caution to get the girl going. When they did the last procedure, I don't know what she's aware of seeing, but she stared in my eyes for a solid minute. Then she closed them. I like her eyes.


Thank you all for your help and good thoughts and visits and everything that's coming our way, we feel lucky to have so many people close to us. Now do me a favor and sing!

xo
ph

Steady

Just to let you know that she's holding steady and kind of the same since Saturday. Next move is to get her off the ventilator and give her some other ways to breath easier! I will post new news.
xo
ph

Better Today

Rosina is responding to the treatment, her lungs are clearer and the amount of oxygen they need to give her has come way down. Now she needs to heal and get back up to the surface. A big challenge for her is that she's very weak from being in the ICU so long (almost three weeks). But otherwise, everything else seems to be working okay and there aren't any other outstanding problems.

xo
ph

as of yesterday, 40 days and 40 nights

Beauty and Power

Rosina loves the ocean. When she was a teenager in Rio, she would swim way way out from Copacabana beach until she could look over the buildings and the near hills and see the Corcovado staute. Along the beach she could barely see her father walking in a white oxford shirt, just a speck. More than once, it was a long swim back. She knows the ocean is powerful.

A set back today. Again, as they slowly weaned her from the meds to let her wake up, her oxygen started to drop. I called in last night around 9:30 and they had started to increase the oxygen coming through the vent. This morning, her xray was cloudly, and they did another broncoscopy. There is more bleeding there. So she's back where she was, twice before, sedated and on the ventilator.

Hug your children!

xo
ph

Progress - Just Keep Swimming

It's going slow, but it's going better. Rosina is waking up; it takes a while to clear out that sedation, and she is still on the ventilator but doing her own breathing. Caution has been the approach here so we still don't know when she'll be completely off the vent, maybe tomorrow, maybe Friday. I'm sitting here right next to here now and I'll say a big hello from you all. She's opening her eyes now and then and can hear us talking, so we're getting there.

My brother David has been out here this week and spent time here, a big help, and thanks to all the visitors who've come and sat and thought good thoughts. If you've been meaning to, there will be time, although it would be nice if there wasn't! Then she'd be at home hanging with the homies (because that's where the homies live). Thanks everybody.
xo
ph

Flat Rock

Rosina has now been in the hospital for five weeks. She's been in the ICU for two weeks. She's hanging in there. I went over today and she's pretty much the same, which is good because she's improving. Her chest x-ray is looking a bit better. They are taking it slow as no one wants to get her off the vent and find she needs to go back on. Today the nurse said "She's going through a rocky part, but right now, she's on a flat rock." Resting, healing.

Nina and Will 2005
xo
ph

Not Much Change - resting

Rosina has been holding steady the last couple of days. She is still on the ventilator, and all the settings and status of things remains the same. My brother John has been out here and spent a few hours out there yesterday, other friends also stopping in. It was like the Blog in person; people gathering around Rosina. She's not awake; however, I'm hoping she heard the voices.

By the way, I look forward to having a giant "The Blog in Person" party sometime in the future. Right now we'll keep the virtual one going. Otherwise, things are all right, and we hope to see her home for Christmas.

xmas '05

xo
ph