Back to Hopkins 5-23-10

Sunday morning Robbi had another attack from gall bladder and ended up going to the ER here, they sent her via ambulance to Hopkins and admitted her to get her pain under control and do the MRI they were waiting for authorization to do at Hopkins later this week anyway. They found out she does have gallstones and her gall bladder needs to come out but its too risky to do surgery right now, as she has very bad clotting factors and their plan is to take the gall bladder out when they do the liver transplant. We also found out she has several/many cancerous lesions less than 1 cm and one that is 1.5 cm, nothing they can/will do about it because all they can do is transplant her, which is the goal we are working towards anyway. We are freaked out about the liver cancer but them, not so much, it seems. They see it all day long, but we don't, and its been really upsetting for us and we really are not sure what each day will bring. They said she will have to keep going through these gall bladder attcks over and over till its her turn for a liver. Apparently they did an MRI 3 months ago and knew then that she had cancerous lesions but didn't INFORM ANY OF US, now they tell us that the new MRI from last night compared to the one 3 months ago shows no growth of the lesions (which they alternately call lesions and/or nodules) which is "good news".
Her MELD is now 22. Seems you get one whole point extra for cancer. I am being sarcastic, but yes, it really is just one point for cancer. Shocking, no?
Robbi is back home now, Tuesday 5-25-10. Tired but glad to be home with her girls and Mike. She was in the hospital for Mikes birthday Monday and tomorrow is Molly's 3rd birthday. Thank You for all of your prayers and good thoughts for Robbi.

Robbi's Mom

Almost A Liver

Tonight we got the call from Hopkins for Robbi to be "on standby" for a liver, told her not to eat or drink for 2 hours....said if the person on the list ahead of her was unable to take the liver (???) it would go to her. They told Mike it was a "2 hour standby". So we of course all freaked out, and about 1/2 hr ago they called them back and told them the liver turned out to be unsuitable for transplant, so we are back to waiting.
But the good news is that we now know there is one person ahead of Robbi and once she gets transplanted the next liver that's A+ will be Robbis. This happened to a friend of mine and she got her "for real" call several days later, and that was the liver she ended up getting So this means we are SO CLOSE. I guess you could call this a dry run but boy it had my heart leaping out of my chest with every emotion you could possibly imagine when you are waiting for an organ transplant to happen for your child. Also, a reminder to us all that we could getb the call at a moments notice, we have been on "red alert" since Thanksgiving and we had kind of gotten lax with the anticipation of EVER getting the call.
Please keep up the prayers and good thoughts for Robbi to get her call. We are so close now to her New Beginning. Thank You friends and family for all your support.
Hoping my next entry will be news of Robbi being in surgery!!!! :)

Robbi's Mom

Robbi back home 4-29-2010

Robbi was discharged Thursday, they did tap her and I swear she looks 30 lbs lighter. She was carrying 50 lbs of fluid alone on her when she went in. Her knees weren't even visible. The tap was no fun but Mike got it on videotape (ewww grose) and will be putting that up on the blog when he gets a chance. Not for the weak stomached peeps out there, for sure. I'm not watching it cos I couldn't stand to see that done to my child. Anyway shes feeling better and they increased a couple of her meds.
I was hoping a liver would come in while she was there (as we all always do when shes in there, anyway). Thanks for your prayers and good thoughts, sorry the picture of Jessie the dog that Madi drew came out sideways, I am techno-stupid.

Robbis Mom

Jessie the dog, drawn by Madi

Hospital Again

Robbi went back to Hopkins on Tuesday 4-27-10 after spending Monday night in her local ER with several problems related to her ascites, she was full of fluid all over from her face to her toes. She left the ER and went to Hopkins @ Hopkins request and was admitted to be tapped to get some of the fluid off of her. Once she was there they had problems finding a good "pocket" to drain the fluid from, it appeared to be kind of spread throughout and they had not one good spot to drain it from. They gave her some albumin IV and then they did a couple attempts to tap her in the room but were unsuccessful so got a portable sonogram to see if they could find a pocket with that and try it again, which was not successful so they decided to take her down to the sonogram department and get a real sono and look for a pocket there. Which, as of last night (Wednesday)still hadn't happened. The news this morning is they did find a pocket and marked it on her skin and sometime today will drain her from that spot. At any rate they said once she is tapped they want to keep her at least 2 days more for observation, and they said they were going to be giving her some blood products also.
I have no idea how her labs are. But, I imagine not too great. Her spirits are so-so, and she does have her laptop with her.
So depending on when the tap happens, plus 2 more days after that or so, I am guessing she might be home end of the weekend or Monday, I don't know.
Thank you for your prayers and concern for Robbi.

4-17-2010

FAITH IS THE BIRD THAT FEELS THE LIGHT AND SINGS WHEN THE DAWN IS STILL DARK.

Rabindranath Tagore (1861-1941)

Credit for this wonderful quote goes to my old friend, StickyBeak.

Update 4-16-2010

Robbi is still waiting. Shes very tired and has been going back down for a nap as soon as she gets her oldest off to school in the morning. She gets up a little around lunch then back down for another nap. Some days are better than others, she still gets out and gets around but not as much as she would like to. The ascites and fluid retention really has her down, as does the waiting. Shes still a MELD 21. There's no way she can run her house and take care of the kids without the help of others. She keeps her spirits up most of the time but she does get down in the dumps a lot too.
We have praying hands by the phone in hopes that call will come soon, and are still packed and waiting for when it does. Thank you for all of your prayers and good thoughts for Robbi.