Patient refuses.

When I came in today, Elsa was in a very good mood. She had discovered "patient refuses," the command word when she does not feel like acccepting what the medical team wants her to have, such the nasty hepburn shots and insulin, just because she was one point over the lower limit.

As Bob Marley would sing.

Get up, stand up, refuse the hepburn shot.
Get up, stand up, don't accept the insulin.
Get up, stand up, say no to the hospital.
Get up, stand up, patient want no more pain.

She has been walking and drinking broth and liquids. Her surgeon said she could start solid foods tomorrow if she wants. She wants.

I made a drawing of Elsa's infusion pumps.

july 28 Wednesday

Elsa is doing much better. They have removed the nasty NG tube and put her on TPN (total parenteral nutrition). Basically this means she is being fed by IV. She needs nutrition and is not able to eat, so they are doing this to give her some calories. She also started taking sips to regain use of her GI track.

She sends her love to all.

Well wish cards.

Maya, Gabby and Zaza made this giant card for Elsa. It's looking good in her room.


Carla sent a card from Syracuse, NY, with a drawing made by Sofia. It's a spwidew.

Sunday 7/25

Came to the hospital with Maya today. Elsa is feeling a little pain and could not sleep much at night so we are letting her rest. Maya is taking care of her today. Hopefully Elsa will get some sleep soon so that she does not look so tired. Maya is laying next to her as I write this post. I know soon they will both be sleeping. Kids have that ability to energize you and to relax you. We spoke to Filipa earlier today and read all the comments that you all have been leaving on the blog.

Cheers!

Saturday Morning 7/24

Here is a picture of Elsa this morning, saying hello to all of you.

July 24, Elsa sits down.

I came in a little later than usual today. When I got to her room, Elsa was sitting down, all washed and with her hair combed, looking very pretty.

 She was watching Sinha Moça on You Tube.

After a while, we went for a walk. She took a trip around the nurse's station and down one of the hallways. This is very good progress. She still has difficulty talking because of the GI tube on her nose, but otherwise, she is making very good progress.

Continuing to make progress.

Her protestations notwistanding, Elsa is making progress. She already sat down and is speaking more, even with the GI tube in her nose.

There is still some pain and nausea, but she continues to get better. Even just one day makes a big difference.

Elsa corrects me.

"Ze, you are not being accurate."

"I'm not feeling good. I can't move, I can't talk. It hurts."

"The Magnesium they are giving me hurts. I feel frustrated because I want to do well right away. These transition days frustrate me."

Morning 7/23

I got in at 7 this morning. Elsa is doing well. She has the usual drainage tubes but is feeling well. She complains of some tingling now and then, but seems to tolerate the lack of narcotics well enough. They are giving her some sort of strong Tylenol instead of narcotics, because narcotics always make her feel miserable. She also has an epidural to help with the pain. The morning nurse came in and asked her some questions about vaccines she has taken and other medications and Elsa answered them correctly and the nurse had to double check her records. Pretty sharp. I do not think I would have remembered if it had been me. Now she is going to bring this up every time we argue about some detail about what happened in the past. I always contend that I am right and she is the one who forgets, but now I am not so sure. The other day we were debating details from when Maya was born and she remembered things in chronological order, better than I did.

Elsa is mostly still sleeping, which is good. She needs the rest. I gave her a foot massage to relax her and she fell asleep. She alwyas wants to go home as soon as possible, but this time the doctor said that she needs to take it easy. She needs to be able to eat without complications before she goes home. She came in with the weight that she usually goes home with after not eating for a week, so she cannot afford to lose any.

Finally saw Elsa.

After waiting for a few hours, I finally got to see Elsa, who is doing really well. She is without pain and had already woken up when I saw her. I spent about an hour with her and then they kicked me out so I came home to rest. She was still in the recovery room. I will go back early tomorrow morning.

Good night. I'm tired and ready for some rest.

Elsa is out.

Just spoke to Elsa's surgeon. Everything went well. She was able to remove a lot of tumor. I will not be able to see Elsa until one hour from now. Will update as soon as I have a chance to see her. The doctor said that she could understand why Elsa was feeling uncomfortable. Elsa will take a while to recover. The doctor said that they will want to make sure that Elsa is able to recover fully before she lets her go home, because she was very weak this time, from not eating comfortably for so long. It is obvious that the doctor really cares for Elsa which is why Elsa and I are always so confident going into surgery. I just cannot wait for her to get up and running. The doctor said that Elsa will need a vacation in Cape Verde once she recovers well enough to travel. Funny thing, eh!

Four o'clock update.

Nina, from waiting room reception, just told me that Elsa's procedure did not start until 3 o'clock. This means that it will still be a while before I hear from the doctor. They are running behind schedule. I overheard one of the waiters being told that their patient's procedure did not start until noon, instead of 10 o'clock. So here I sit waiting for news, with Goya by Robert Hughes for company and a little drawing practice for distraction.

Cheers!

Lunch

This was the salad I had for lunch (just in case you were wondering).

BWH July 22, 2010

Elsa and I arrived at around 11:30am at Brigham and Women's Hospital. She cried when they poked her for a blood draw. She misses her port.

After being admitted, we waited in the waiting area, and then went to the lower floor of the hospital for Elsa to be prepped for surgery.I took the pictures below while she waited.




Here she is beginning to play hide and seek.




After talking to a team of nurses, who put on an IV line and asked her a bunch of questions and gave her a pillow, and warm blankets, and pampered her, she spoke to the anaesthesiologist. No dilaudid, it was agreed. Last time they gave her dilaudid after surgery, to take care of her pain, but it made her feel miserable, so this time it was agreed that dilaudid is out of the question.

I left after a while when the anaesthesiologist came to start preparing Elsa to enter the operating room.

It's now 2:19 pm, so I am going to go to the waiting room.

Pre-op

Once again I am being recruited to be your intrepid (albeit ephemeral) reporter.
The ever smiling Elsa is going for her 10th surgery, after a couple of months of constant pain from a few unwelcomed invadors.

This past Monday we went to pre-op, where I took these pictures. Tomorrow is surgery day, so she is now drinking those awful concoctions to prepare her bowels for surgery. Calm, as always, she is resigned to the fact that she will miss a few episodes of tititi, but there will be plenty of time to catch up once she is home.

Filipa is in Cabo Verde, so Maya will be staying with Gabi at Zaza's, making things easy while I keep Elsa company at the hospital for the next few days.

Cheers all! Updates coming soon.

Z

Para a Mama! (For mom)

From: Santa Maria, Sal, Cabo Verde

Ola Elsa!

 I miss you!!

 I went to the beach today, and could only think of you.  ^^

I wish you were here with me!

 I looooove you!!!!!!!!!

I hope everything goes well tomorrow, I will be thinking of you with all my heart!

MUITOS BEIJOS!

Love,

Filipa <3

Chega!

I found the perfect song to dedicate to my tumors. Chega! Chega, the title of this song means enough. Enough! Não, não te quero mais! I don't want you anymore...
vai sair da minha vida, voce vai ter que mudar...
p'ra me livrar de voce,
to get rid of you, I have a date with Dr. Monica Bertagnolli on the 22nd, Thursday at 1h30.


Ze has promised to post as soon as I am out of the Operating Room.
Enjoy Marti'nália while I enjoy my chicken broth... Yes, the torture has started, I am on a clear liquid diet.