Sunday, February 12, 2012

February 12, 2012

My beautiful daughter Robbi passed away at Johns Hopkins Hospital January 31, 2012 at 7:08pm.
She was surrounded by Mike and I and her pastor, Randy Reid. She was loved by many people.
Please read Robbi's facebook @ Robbi McClure-Stanfield. Also Robbi's 2nd Transplant Journey on Facebook.
Thank you to everyone who kept our dear Robbi in your prayers everyday. She was courageous and fought a long, hard battle. She was in the best hospital in the world with the best doctors and nurses. Her body was so ravaged from the drugs that were supposed to help her clear the virus (which she did) that it was impossible for them to save her.

Please keep her daughters Madison and Molly in your prayers, and her husband Mike. We are all hurting and miss her every minute of every day.

Robbi's mom/ Teri

Saturday, January 7, 2012

Saturday Jan 7, 2012

This morning they removed her endotracheal tube and took her off the ventilator. She is breathing fine on her own. She is still hooked up to continual dialysis. She is increasingly awake and all day we have had to sit by her side and stop her from pulling at her lines and tubes.
The swelling in her faced is gone so she looks like Robbi again. She is doing very well today and the doctors are very pleased with her progress. Fingers crossed.

Your prayers are working so please don't stop.

Robbi's mom

Friday, January 6, 2012

Friday Jan 6, 2012

A lot has been happening with Robbi this week.
Everything was going along pretty uneventfully until Tuesday morning @ 5:30. She woke up throwing up blood. They immediately moved her to a room closer to the nurses station, and 5 minutes after I had her unpacked again they came to tell us they were moving her to ICU. They wanted her to have the nurses in ICU watch her closely. They gave her propofol and intubated her and connected her to a ventilator. They started her on continuous dialysis. They had her on a special mattress and a warming blanket on top of her. They did an endoscopy to make sure her esophageal varices weren't the thing causing the bleeding. What they found out was the side effect of the telepravir (medication-antiviral) was causing the inner lining of her mouth to slough off and her mouth had been bleeding, it caused her sleep all night while she swallowed the blood. Since blood is a natural emetic, she eventually threw up.
Mike and I were told that she was in very bad shape and might not even make it. Which of course freaked us out. They were having a hard time waking her up due to the all-day propofol that they had given her, her liver is in such bad shape it's not metabolizing very quickly and the propofol, which is usually a short-acting drug, was taking a long time to wear off.
Wednesday morning they had a meeting about Robbi and it was decided to take her off all of her antivirals. They were making her so sick it was necessary. She was able to hear us but not respond much Wednesday. Thursday at 4:30 they had a big meeting with all disiciplines- GI, Nephrology, Pharmacy, PT, Respiratory Therapy, Transplant team, Nursing- and made the decision to list Robbi as of the next day for a liver-kidney transplant. Because her MELD scores were so high- the high 30's- she went immediately to the top of the list. They told us that they would be getting offers from UNOS for organs right away and they would likely have to turn the offers down until she was medically stable enough to even survive the surgery. (Those organs are then offered to the next person on the list) Once she is stable, they said she would be transplanted. But, if her viral load moved from zero to anything else, they would not transplant her at all and she would eventually succumb to liver disease. A really hard thing for us to hear.
But by last night (Thursday night) she was increasingly awake and they told her if she continued to do well and get more awake, they would pull her ET out and she could get off the ventilator. She had already had the settings turned down and was initiating her own breaths but the vent was just giving minimal assistance. They have the removal of the tube tentatively planned for tomorrow (Saturday). Shes 100% alert but naturally her focus is on that tube being removed, its making her miserable. Then the focus will be getting her labs to where they are supposed to be so shes more fit for transplantation.

Please pray that Robbi's viral load stays at zero, where she will at least have a chance to be transplanted.

Robbi's Mom

Saturday, December 24, 2011

Dec 24, 2011

Robbi will be admitted to Hopkins Dec 26 for 4-5 days so they can get the fluid off her. Her ankles, etc are swelling and they would rather take care of it ASAP rather than later so it's not so hard to get off. Last time she walked around with the fluid for way too long.

She has completed some of her pre listing tests and has the rest already scheduled, will probably get some done while she is inpatient, too. Shes almost ready to be listed and hopefully on track for a Jan-Feb transplant. She's crazy-excited about Christmas, just like she's always been since she was a little kid.

Merry Christmas to all!!!!

Sunday, December 18, 2011

December 18, 2011

Robbi has been maintaining status quo the past month or so. She is able to keep food down better the past 2 weeks. She has her schedule for days she is to report to Hopkins for the remainder of her testing pre-transplant. Looks like the track for Jan-Feb transplant still remains.

I find her energy level to be AMAZING. She has been able to get out and do some serious Christmas shopping and decorating lately. Of course, always followed by a few days of rest to "recharge". She has attended a church Christmas dinner gathering and is looking forward to going to Hopkins liver transplant Christmas party.

Her family was chosen many months ago to be the recipient of Hopkins "family" to receive Christmas presents and goodies. They are providing her family w/ an entire Christmas dinner, as well as gifts for the whole family. A blessing, to be sure.

The long term effect of Robbi's sickness on her girls has yet to be seen. Her 4 year old was crying at school one day and told the school nurse that "her mommy was sick". Robbi and Mike have not told the girls she needs another transplant yet. All they know is she is sick and needs to rest a lot.

Robbi has continued the Christmas traditions in her family like baking cookies and goodies and is making it as normal of a holiday as possible. I continue to be amazed at her bravery, and ability to get through every day with a positive attitude for her family's sake.

Thank you for all of your prayers and well-wishes and may each of you have a blessed Holiday season.

Friday, November 18, 2011

Friday November 18, 2011

Robbi met with the transplant team regarding her re-listing this week. They are moving forward with the listing process and not making her wait until she has been at zero viral load for 8 weeks as originally planned. She is very motivated and anxious to get all the tests completed as fast as possible. Transplant Team also said she will most likely be transplanted Jan-Feb 2012 rather than before Christmas. They want to get her inpatient and bulk her up as much as possible before transplant. Get some weight back on her.
Robbi's appetite is very good in the evenings but during the day she is very nauseated and does throw up all day long. She is about 115 lbs and is very, very thin. If not for the vomiting she would probably be a healthy weight. She does sleep much of the day away, but she likes to be awake and interactive when the girls get home from school, and she cooks dinner for the family and does as much as she can in the evenings with them. Mike is a great help to her, and allows her to sleep as much as she needs to during the day. They still do family activities and errands together most of the time.
Robbi is extremely excited to start making scrapbook pages for her new album, which she won as a door prize a few weekends ago when her Grandmother, her sister and I attended a Women's Conference. She has been wanting to get started in scrapbooking, a hobby she can do while resting, and while in the hospital, she hopes. She is still collecting supplies and stuff here and there before she starts. She plans to go to a free scrapbooking group 2 x a month at the girl's school.:)
She hasn't lost her sense of humor or her caring and compassionate nature for others as she goes through all of this nightmarish re-transplant process.
Thank You for continuing your prayers for Robbi.

Robbi's Mom

Friday, November 11, 2011

Friday, November 11, 2011

Robbi has been resting a lot lately and weighs 115 lbs (she says- she looks A LOT thinner than that to me) past several weeks, the nausea continues (from the treatment) and she throws up 5-6 times a day. That's why she is so thin- she can't keep anything down. Mike has her drinking Ensure. Her birthday was Wednesday
and she even threw up her birthday cake. :(

The good news is her viral load is NEGATIVE zero, meaning she has cleared the virus. Now they will see if she has a SVR (sustained viral response) and keeps it down to zero (undetectable), then when they transplant her she will have none of the virus in her system and when they transplant her new liver (soon, we hope) she will be able to live a long normal life afterwards with no Hep C anymore. :)She is currently re-listing for her next transplant and we will be doing the "waiting for the phone to ring" through the Holidays.

Please remember Robbi in your prayers and pray she gets a new liver in time before the one she has now 'craps out'.

I will continue to update.