Saturday, January 31, 2009

Thursday Night's Surgery

While this entry isn't graphic in nature, I do strongly urge parents to read this before allowing young children to read on. That means if you're under 15 - go grab your mom or dad. Otherwise, I'll tell Aunt Dee on you! :)

I apologize for not posting in a few days; we were faced with a difficult decision and, along with my mother's approval we agreed to have surgery Thursday evening to further amputate both her legs through the knees. This is to facilitate walking using prosthesis - both her lower leg bones were too short to allow her to use them otherwise (weight bearing is an issue). My mother said, as the doctors gave their opinions, that she wants to walk.

This is the greatest chance she has of walking.

Another reason that motivated me to agree to this decision is something I haven't shared online. I mentioned previously that her wounds were left open from the amputation so the surgeons could monitor healing of the tissue. What I didn't go into detail over is how excruciatingly painful it is for my mother to endure wound dressing changes on her legs, which happen daily in order to prevent infection.

She had surgery Thursday evening. The anesthesia team came in to prep her at 4:15pm, but the actual surgery probably didn't start until about 6pm... and ended somewhere between 9:30 and 10pm. We received regular updates with the assurance from the surgical nurses that she was doing well. One had even called my Aunt Esy to let us know what an inspiration my mom has been to the hospital staff, and that my mom would be in their prayers. Finally, one of the surgeons came out to let us know everything went well and to let us know, again, that my mother is an inspiration. The other surgeon (there were two) sat down with the family to show us pictures of his work- he performed the skin grafts on her legs. While most people probably wouldn't like to see fresh surgical pictures, please understand that my step-dad, my aunt, and I have all seen my mother's open wounds during her dressing changes. It was such a relief to know that she can finally begin healing. As my aunt has said of my mother, "she's ready to move on to the next level."

Friday morning after the surgery, my mother was in a lot of pain and had a fever. This is normal for post surgery, but needless to say we don't want her to be in pain. She had slept some in the afternoon but during the time she was awake, she was still in a lot of pain. After trying different pain medications throughout the day, the nurses were finally able to find something that helped relieve both pain and anxiety. When I left last night, she was calm and fading in and out of sleep.

Before going into surgery, I had suggested to my mother that she might need to use a wheelchair to get around, but would most likely be able to have her prosthestic legs on so she can get up and walk around when she wants, and still have her wheelchair so that she can rest when she needs to. I've read over and over that having an amputation at the knee level takes up to 80% more energy to walk using prosthesis. Having both legs amputated increases it to more than double that percentage.

I spoke with the prosthesis specialist (a prosthetist) Friday afternoon. She said my mother's number one priority is to heal. Once she is healed, she will be able to go to a rehabilitation center. The prosthetist explained that my mother would most likely first be fitted with a hand prosthesis so that she can learn how to grasp objects (this is the third medical professional to say "this is huge that she still has her thumbs!")... and learn to do basic tasks that most people take for granted, such as brushing her teeth, going to the bathroom, picking up things, etc. This will take some time, but once she is comfortable using her hands, she can then begin learning to walk- This is highly dependent upon my mother's motivation level because it will be very difficult, but she is a brave, strong woman; it's our job to support her during this journey. They'll start her with "stubbies" which will be lower to the ground and weigh much less than a full prosthetic leg... once she gains confidence and mobility, they will increase the height until she is ready for full length legs. The reality of this is, it will be very exhausting for my mother to walk. The prosthetist explained it as, "if you're walking a mile, it will feel like 2 and a half miles to her." Once my mother reaches that point, I'd like to find out how much each prosthetic leg weighs, and then invest in leg weights and wear them myself so I can at least understand how much energy is used to carry the extra weight anywhere she goes when she walks. Of course, I won't understand what it's like to use the concentration level to put them on using her prostetic hands, or to balance on them while walking, or the frustrations she'll invetably face. But I can be there for her.

-Karen

Wednesday, January 28, 2009

Wake Up Call (No, Seriously)

This morning as I lay in the warm and cozy bed still sleeping, my cell phone rang. It was a phone number I didn't recognize. Since I've been receiving plenty of important phone calls from new numbers, I didn't hesitate to answer.

Hello?
Hello, is this Karen?
Yes...
Hi, this is Mary from the hospital. Your mother wanted me to call you so she could talk to you.
Oh- ok!

I heard my mother's voice, stronger than it's been:

Hi baby
Hello!
You need to bring Isabella to come see me. Tell Daddy to bring Isabella. And tell Leah to bring me some apple stuff from Cracker Barrel. Also, tell your Uncle to bring the kids so I can see my nieces and nephew.
Ok

As soon as we hung up, I realized that was the first time I had spoken with my mother over the phone since the day before she got sick. My mom likes to keep in touch with me (and all her relatives!) by phone... I should have known this illness wouldn't keep her from being who she's always been, back to making her morning phone calls (even if she had to improvise a little).

-Karen

Message from Aunt Dee to Donovan and Emily

Aunt Dee requested these exact words be posted:

Donovan - Wow, you amaze me. Try to remember that your Grandma (Esy) has a lot on her plate. Keep her in your prayers. Help your momma. I wanted to be back for your birthday.

Emily - Hey Emily, your birthday is coming up (in May); just want to let you know I haven't forgotten your birthday. I want to say "Happy Birthday" early just in case I'm in surgery.

Love, Aunt Dee & Uncle Buddy

Tuesday, January 27, 2009

Best Friend

Yesterday my mom said "Bye bye best friend," as the respiratory nurse wheeled off the ventilator machine that, up until that day, had kept her breathing since Dec. 24th. She's officially breathing completely on her own! She also no longer requires dialysis - her kidneys are fully functional with the help of medication. She's also had a steady diet of ice and juice.

These are all wonderful things and I like to try to stay on the positive, but in all honesty we hit a bump in the road that distracted me from being fully appreciative of her miraculous improved health - her surgeon wanted to amputate further up both legs above the knees.

During the first surgery two weeks ago, the surgeon wanted to be as conservative as possible and only get rid of dead tissue. She informed us more amputation may be necessary if there was not enough viable tissue; my mother's legs were left open so they could monitor the healing. Unfortunately, the tibia (lower leg bone) is not long enough to accommodate prosthesis for walking on either leg... if my mother were to walk again it would require further amputation.

This was a huge blow to our momentum but after consulting with more family members we decided to get a second opinion; The surgery was scheduled for this morning and as a result was canceled so that we could buy time and become aware of all options while keeping my mother's rehabilitation and best interest in mind. The second opinion came in this morning that it might be possible to amputate through the knee (rather than above) so that she can have even greater chance of walking again. More leg length = easier to rehabilitate.

Obviously we're much happier with the second opinion. Please send positive, hopeful brain waves and prayers that my mother has enough viable tissue to cushion both amputations through the knee... we don't want it above the knee! :)

I don't know when the surgery will take place; the sooner the better - she has multiple open wounds on her legs that are going to require skin grafts which won't begin until the day of the surgery.

Thank you again for your continued support... and stay off icy roads!

Karen

P.S. She was approved to eat pureed food today. She's such a healing machine!

Friday, January 23, 2009

First Words

I got confirmation from a respiratory nurse last night that my mother's tracheotomy tube will come out once she is completely off the ventilator (I apologize if my previous post was confusing on this topic!) She was breathing for 16 hours on her own yesterday, and each day they will increase the time by two hours.

Today at lunchtime she received some speech therapy. They put a cap on her trach opening so that she could breath solely through her nose and mouth; which she was able to do comfortably. She was told to take a deep breath (and cough a little), then to try to say "Hi". After a few deep breaths she was able to let out a hoarse, gurgly "Hi." My Aunt Esy and Uncle Eliseo were in the room as well, getting teary eyed to hear my mom speak for the first time in a month. A little while after my Uncle left, my Aunt Emma (nicknamed "NaNa") showed up along with my Grandfather, Eliseo. My Aunt Esy was excited that my mom could now speak (sorta) and asked her to say "Hi NaNa"... so she took a big deep breath, and out came a hoarse and very low-pitched "Hi NaNa". We couldn't have been happier and had a good laugh at her endearing newly deep voice.

NaNa brought a whistle for my mom to use in case she needs the nurse since she is unable to speak out or use her hands; the nursing staff responded that she wouldn't be able to produce enough air to use the whistle, so instead they taped a sensor pad on her pillow that will alert them if my mother needs assistance; she would just need to touch it with her head. She has good mobility of her neck and shoulders so this was a huge relief for me to know she can now call for help at any time.

-Karen

Wednesday, January 21, 2009

Welcome and Thank You!

This is the first post regarding my mother's progress from her survival of meningococcemia, or Meningococcal septicemia, a deadly bacterial infection. We don't know how she caught the illness but it left a devastating trail of life-changing complications.

She is currently awake and alert, but still recovering in the Critical Care Unit. She is unable to speak as she required intubation when she was admitted to the hospital on Dec. 24th (she was unconscious) , then received a tracheotomy a few days after waking up. As far as I know, the tubing has been removed and she is breathing on her own. However, the doctors have not closed the opening from her tracheotomy because she is still undergoing regular surgical procedures. She receives dialysis regularly but after a little help from medication treatment last weekend, she was able to produce more urine. In fact, I visited her earlier this afternoon and her pee was bright yellow and clear (and there was lots of it!)

She had surgery on Tuesday Jan. 13th to amputate her fingers on both hands, and both legs below her calves. Fortunately, her thumbs were spared. My mother will require several months for her recovery, including potential skin grafts, then most likely will spend time in a rehabilitation center and learn to use prosthesis to walk.

Edit: We are now accepting online donations through this site via PayPal (on the right).

Thank you for your time; your thoughts and prayers would be most appreciated.

Also, be sure to read the story below written by my Aunt Esy.

-Karen