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

August 11, 2010 Update

Robbi came home Monday, she slept some at first and her sister and I kept the kids even after Robbi got home cos we wanted her to have a little bit of quiet before sending the kids back...she is now perky from what her sister and husband tell me.
She is not pain-free, she still has pain but is managing to "deal with it" as long as it doesn't spiral out of control as it sometimes does, which is what lands her in the hospital again. Thats about all the news I have I really have a feeling we will be hearing they have a liver for her sooner rather than later, it feels so close....
please keep Robbi in your thoughts and prayers. She is being so brave and its hard to watch her get sicker and being in pain. I am still ready but moved my suitcase to the car instead of keeping it by the door, now if I want some articles of clothing I have to go out to my car for it. LOL.

Robbi's Mom

Madison

Poor Madison, who has gotten lost in the blog pictures and has barely been shown, she is a beautiful little girl and very smart. She knows her mommy needs "a new part" but that is all she knows, any more info would freak her out. She knows Mommy will have a scar on her belly like Gramma does. Madi is such a sweet little spirit, just like her Mom, she asked her Dad if she could get her long hair cut off short and donate her hair to Locks of Love "so a kid can have hair that has cancer." (And she did, this picture was taken before she got her haircut.) I think thats pretty cool coming from a 7 year old child! She also takes karate, and has gone all the way to green belt and loves to spar, and she's been in it not quite a year!

I talked to Robbi on the phone about 11:30 this morning, she was very sleepy sounding and said nobody has said anything to her today about discharge but they also haven't said she isn't being discharged, she said some of the pain has returned in gall bladder area....so we will see what happens but I have a funny feeling she might NOT get discharged. On the other hand, she has been discharged "in pain" just a few weeks ago with an Rx for pain meds, so maybe that's what they will do...

Robbi's Mom

Want Some Great News???

Robbi probably had a gall stone stuck in her bile duct,which caused the massive pain that took her to the ER the other night, and they said they think she has passed it which is why her pain is not bad now. They are feeding her regular food and are saying she will probably be discharged tomorrow. But, the GOOD NEWS is.....she is now a MELD of 23!! This shoots her right up to the top of the list and she was already close to the top anyway. This could be the beginning of a countdown to her transplant very very soon!!! Pray she gets a liver as soon as possible, hopefully in the next week or two!!!!
Robbi's Mom

Paint Your Toe with an "R" for Robbi.....

One of my online friends Sandra painted her toe with an "R" in honor of Robbi. She sent a pic, I think its adorable....

Robbis Mom

August 7, 2010 update

Robbi finally got to a bed at Hopkins last night around 9pm, she started out Thursday night around midnight at her local ER and it took till 9pm the next day to get her in a room at Hopkins. Mike said they took her to ultrasound right away, and later will do a CT scan or MRI. I talked to her about 10pm and she sounded good, her pain was under control but she hasn't eaten since Thursday and was starving, is NPO as usual.
Dunno how long she will be in. Wish a liver would come in while shes there.....
Mike is staying in the hospital with her, Raven has Madi and I will have Molly starting later today. Please don't stop praying for Robbi.

Robbis Mom

Update August 6, 2010

Robbi's back in the hospital again. Mike called me a few minutes ago and said she went to the ER about midnight with that dammed gall bladder pain again, she is still there waiting for a bed and transportation to Hopkins to be admitted again. She was only out 3 days this time. I will update later tonight when I know more.
Please keep Robbi in your prayers.

Robbi's Mom

Update August 5, 2010

Spent the morning at Robbi's today, along with her sister. She was very alert and NOT confused, seems the 2 full days and nights of sleep following her coming home from the hospital were just her sleeping off the drugs they had given her in the hospital. She still has low energy level but that's to be expected. She seemed more like herself today than she has in over a week. Shes not in any pain, and seemed very happy to be home.
Please don't stop praying for Robbi.

Robbi's Mom

Couple More Things

Robbi's MELD is now 21. Her MELD went up due to her bilirubin level going up (her amount of jaundice/ yellow color) She has jumped over 2 people on the waiting list as of last week/ this week. She is still very sleepy and is sleeping all day and all night. We are not sure if its due to the pain medicine she had in hospital and has at home now, or if she is starting with encephalopathy. She does have confusion but is so sleepy when I talk to her. I am going up tomorrow to check her out and help out with whatever I am needed for while I am there. Unfortunately you don't get any MELD points if you have high ammonia levels which causes the encephalopathy. (Which I don't think is fair because rising ammonia level is a significant event in worsening end stage liver disease and I think it should be counted for something...) Please remember Robbi in your prayers.

Robbi's Mom

Tuesday August 3, 2010 Update

Robbi came home from the hospital last night and is now at home resting. I talked to Mike and he said they put her on a bunch of new meds, one of which helps prevent the gall bladder and spleen flare-ups, another one for encephalopathy, and an antibiotic that she has to stay on daily until she is transplanted. He said she is very tired.
I will update again after I talk to her. Hopefully she will be getting her new liver soon! NEVER GIVE UP!

Robbis Mom

Sunday 8-1-2010

Robbi's still at Hopkins. They have done MRI, are planning to or have already done another paracentesis (tap), plan to do an ECG on her, and are working on keeping her pain under control. Mike is still with her and her sister has heroicly been watching the girls (that's 4 kids age 10, 8, 3 and 2...) I am keeping in contact with her over the phone. She sounds very sad and medicated.
Please keep Robbi in your prayers...

Robbis Mom