wednesday, September 1 2010

This is Robbis oldest sister Raven, who helps her out so much. THANK YOU Raven for everything you do for Robbi.
Robbi has a regular doctors appt today with her Hopkins doctor. Hopefully her MELD will go up.
She feels so bad, he might even admit her. COME ON LIVER!!!
Thank You to everyone who follows Robbi's on her journey and prays for her. She is a brave strong girl. Hopefully her journey is ready to move into a transplant!

Robbi's Mom

Tuesday, August 31, 2010

Robbi is hanging in there, she has had some gall bladder pain and almost went to the hospital Monday night= was planning on it Sunday- but felt a little better. Her in laws are here from Missouri for 2 weeks, then they are going home 1 week, then they are coming back to stay indefinately. Such a relief to have them there, 2 more pairs of eyes on Robbi and they can let her sleep all day if she needs to, they know they girls schedules, etc. What a Godsend they are.
Mike told me her eyes are very very yellow. Shes sleeping day and night just about.
I know we have got to get that call soon. We are all on red alert.....suitcases ready, etc.
Robbi says she still feels those bands and in her throat, and they still feel like a tortilla chip stuck in her throat. Ugh, no wonder she eats very little. What she does eat shes really not able to keep down anymore, she just prays her pills stay down. Shes doing the best she can to keep food in her but its hard for her. Like I said, shes a thrower-upper for sure! We had "Girls Night" Friday night here and she barely made it to 8:00pm, she got on the couch with her barf bag and blanket and was asleep all night.
Thank You for your continued prayers for Robbi. It means so much to her that so many people care besides just the people she knows. Shes in awe so many people are praying for her. The picture I attached is not a real recent one but its a familiar sight- Robbi on the sofa with one of the girls- usually Molly- curled up with her.

Robbi's Mom

Friday August 20, 2010 Update

Robbi's Home!!!!!!

Friday, August 20, 2010 Update

OK so they took Robbi down yesterday to a procedure room and knocked her out with the propofol and looked at her esophagus, they tied off 2 or 3 (can't remember-sorry) varices that had been bleeding and the rest they said looked ok.
When Robbi woke up her throat hurt, she said today that it feels like a tortilla chip is stuck halfway down her throat. Her voice is very scratchy and I felt a little bit guilty calling her and making her talk. They said once she can eat and go poo and pee they will send her home! So, maybe today. The also did a chest xray, since she complained so much about her throat hurting,they wanted to make sure everything looked normal in there, which I guess it did because they didn't do anything different.
So shes working very hard to eat what she can, said this morning she managed to get scrambled eggs down. Please continue to pray for Robbi!

Robbi's Mom

Thursday August 19, 2010

OK, Robbi arrived at Hopkins finally last night (not such a long wait this time, but long enough) and was admitted to MICU which is Medical ICU. She was admitted there due to her possible bleeding varices. She had not had any more bleeding when she got there, since she had been at the other hospital, and even that wasn't bad at all. One thing about Robbi, she is one of those people who throws up and is nauseated due to many things. (I used to be that way too, maybe its just a liver thing). Anyway she got there and was given blood products first, then they did a procedure where they look down into her throat at her esophagus to see how bad her varices is and if its still bleeding. They have to knock you out for this, can't be done while you are conscious. So they had 2 ways of knocking her out, using a cocktail of 2 drugs (I dunno what they are)or using propofol (Michael Jacksons fav). They did the cocktail and she woke up in the middle of it, so they gave her some more, and she still was not knocked out. They were doing this in her hospital room and they were afraid she would quit breathing so they stopped the procedure and decided to do it again today using propofol and taking her to a procedure room to do it. The room she is in today is the medical step-down unit so she is no longer in MICU, but is being closely monitored. She has a roommate. If you want her room number or phone number call me, but that might change too because they might move her one last time to the regular place shes usually in over on Halstead or Osler or wherever it is. Mikes on his way to spend the day with her, Ravens got Madi in the afternoons and I have Molly all the time, everything so far is ok, nobody's lost their minds, Bruce even let me sleep in till 9 this morning and had Molly all by himself for 2 hours. I am still picking hair ties up from all over the house, but that's ok, PopPop didn't know she shouldn't be playing with them.
I will update more when I know it.

Robbi's Mom

Wednesday August 18, 2010

Robbi started with projectile vomiting of frank (pure) blood (not old blood, fresh red blood) this morning around 11am, when she was with her sister, thank God. They called me and I said get her to the ER immediately as she has esophageal varices and if she starts to hemorrhage they won;t be able to stop it (since she has about zero for clotting factors). So she got to the ER, and I came flying up the road and got there 14 minutes after the ambulance dropped her off. She had no more vomiting of blood after that and they loaded her up with tons of meds, to control nausea, one to help clotting, some to ease her stomach discomfort, etc plus pain meds. They know not to have any GI Docs touch her at that hospital, we cleared that up a long time ago, so they called her Hopkins doc and he said send her down. So poor Robbi is laying in the ER waiting for an ambulance to get her down to Hopkins. She will be all alone tonight because school starts tomorrow and Mike will have to be home to get Madi off to school. He is dropping Molly of to Bruce and I and we will keep her for as long as we have to. I think Mike will be going up and down the road to Baltimore while Madi is in school then home in time to get her from school, not sure what his plan is. Last time they had to wait 13 hours for an ambulance to come and take them down, because the ambulance doesn't come for her until they have a definate room number fo her at Hopkins.
Please keep Robbi in your payers, when I left her she had 2 IV's in one arm, and was getting sleepy and eating ice chips. I will keep this updated.

Robbi's Mom

August 16, 2010

Robbi attended our annual family cookout and looked wonderful. She even made me a birthday cake! Her eyes are very yellow but her skin looks normal. She was very alert but said both of her arms are still sore from all the IV's she has had lately.
:( Hope that gets better soon, as you have IV's coming from places you never knew they could PUT an IV when you are transplanted. We really feel its going to happen soon, hope we are all right. Please keep praying for Robbi!

Robbi's Mom