Sunday, December 26, 2010

December 25, 2010


Bruce and I visited Robbi today.. I am so glad my mom is there. I gave her a chest with 40 kinds of tea in it and she and Robbi have been happily drinking the tea and eating christmas cookies. Ravens sister brought her a beauitiful artificial Christmas tree which they decorated and put on the windowsill in front of Robbis window. She has the prettiest window at Hopkins right now. I took a pic of it but am having trouble downloading it just now. Its a drag to be in the hospital over Christmas but my mom has made it special for her. She misses the girls and Mike but they are all sick right now. Robbi is doing somewhat better, the pancreatitis is still present but not as bad as it was. She's waiting for her prograph level to go down then the docs think her urine will get the right color and she can began to shed that extra fluid shes got on her. We are all very optomistic now.
They won't screw anything up with my mom there shes a retired ICU nurse and asks pagefulls of questions. Hooray for Mom. She did the same for me.

Robbi's Mom

Friday, December 24, 2010

12-24-2010 Merry Christmas


Heres the situation where Robbi stands now:
She started with a bilirubin of 19 (very very high, she was glowing she was so yellow) And they did 3 liver biopsies and concluded that the hep C that had so aggessively invaded her, but had not harmed the liver. Her pancreatitis is resolved and she can now eat food. Her pneumonia is resolved. Her Prograf (her immunnosuppressant) was way to high so they are giving her nothing until it comes down to 19 then they will resume giving it to her. Dunno how it got so high.
Her kidneys are functioning crappy- thick brown urine, but the docs say when her prograf level gets to where it should be the urine problem should resolve. She fell one day going to the bathroom and smacked her forehead on the toilet, they rushed her to cat scan to be sure she had no internal brain bleeding. She is able to get up and take walks in the hallway, now, with my mom by her side.
My mom has been with her 4 days following my 3 days with her. Her sister is on the way as I write this to surprise her with a tree and some gifts. I will go down there the 27th and stay a few days. Three is about all my back can tolerate in the chair/bed they have there. Bruce and I are also going down tomorrow- Christmas Day. We won't be doing the big family Christmas dinner till Robbi comes home.
That's about all there is to update about her. They have done some pretty hideous things to her and she is so brave. I sit back in the corner and bawl cos its so awful to see them do those things to my baby.
I will update when something new happens. Right now shes steadily improving. Thank You Lord for that miracle.
Merry Christmas / Happy Holidays to everyone.

Robbi's Mom

Friday, December 17, 2010

12-17-2010

Please pray for Robbi that she makes it through this, its apparently very serious and they have only had 1 patient with this before. Not good. I am more worried about her now than I ever have been. I am going down Monday to spend a night or two with her. Remember her in your prayewrs. She a very sick girl, won't be home for Christmas they said.

Robbis Mom

December 17, 2010

Robbi is back in the hospital. Her bili is 19. Thats very very high. The drs say its the hep C attcking her new liver but don't know why she is having such a severe reaction. Shes going for ultrasound today. Monday or Tuesday they are doing a liver biopsy and if it shows signs of fibrosis in her liver they are going to go ahead and start her on Interferon. The need top get her INR down. Poor Robbi, she just want to be home for Christmas. We will bring Christmas to her in the hospital but she won't be able to see the kids. So sad. Please continue to pray for Robbi.

Robbis Mom

Friday, November 26, 2010

Thanksgiving




I wanted to first off, thank my mom for all that she has done and continues to do for me everyday, and for this awesome blog for me and hopefully helping others going through this or know someone who is. I also want to thank my donor and their entire family for being able to make the decision to give life to a complete stranger in one of the hardest moments of their life. Can YOU imagine being so selfless in one of those moments??? I ts hard to fathom someone so close to me not being here all of a sudden. iI hope that eveyone reading this and me included can and will make that choice one day if it has to be done. On a lighter note, please all be safe this holiday season and remember the things that matter most arent things at all.... Love your peeps!!!! Happy Holidays!!! I LOVE YOU ROBERTA AND FAMILY


SPECIAL THANK YOU to my husband Michael, who never gets the credit he deserves and has always put us three girls first in his life. UI dont even have to ask he just somehow knows what we need. I love him so much and am so lucky to have him. I would be so lost if i didnt. I love YOu baby!!!!!!

Monday, November 22, 2010

11-22-2010

Robbi was in the hospital from Tuesday till Friday, her labs were all off, she had right sided pain, etc.
The did a cat scan, more blood work , a liver biopsy. They finally decided it was the Hep C already attacking her new liver.
She is very chipper today, she came down w/ his sister and they cut my hair and helped drag clothes upstairs from the basement.

So Robbi is doing fine today.

Wednesday, October 13, 2010

OMG- The bill has arrived!!

For anyone interested in how much something like a liver transplant costs, the bill came today, and thankfully Robbi is not responsible for anything other than some co-pays for medication that Hopkins has filled for her after she was discharged.
I have rounded the amounts down. (All amounts in thousands of dollars have been listed as "K")

Total for 9/16/10 to 10/1/10: $176,412.68

General Breakdown:

$21k room and board
$13k OR Services (both surgeries)
$5k med surg supplies
$11k Lab services
$10k Blood services (all those blood/ plasma transfusions she got)
$3k anesthesia (surgeries plus the PCA)
$1k Respiratory services (the things related to ventilator, etc)
$3532.00 PT
$545.00 OT
$278.00 EKG
$11k ICU (3 days)
**$55k Organ Acquisition services**
(this is what they charge for everything related to getting the organ from the donor and to Robbi)

Wow!

I thought it would be much more. Mine was insane, something like 1.3 million for 5 mos of hospitalization, plus plus plus...it was several pages long IIRC. I have it somewhere in my papers. Mind bending.

Robbi's Mom





Saturday, October 9, 2010

Friday October 8, 2010

:) Today Robbi had her first POST TRANSPLANT clinic appointment at Hopkins. She will be going to clinic once a week for the first month she is home, then that changes. She gets labs done twice a week at her lab near her house. Her first clinic visit was AWESOME. Her mother in law from OK is up for 2 weeks, and she took Robbi. (Robbi is still now allowed to drive because she is still taking pain medication)
Her LIVER FUNCTION TEST labs were PERFECT. Her levels for her immunosuppression meds were PERFECT. Her incision is PERFECT, in fact her surgeon (who will follow her for the first year post transplant then she is followed by her Hepatologist) removed one staple at the end on the left (her left) and the top 4 staples because she couldn't wear a bra or even a sports bra without that area being irritated. He said next Friday he will take all of her staples out and put steri strips on and he said it was a great looking incision. Guess I have to stop nagging her to keep her hands off of it. They portioned her meds out in her med box for her for the next week. How cool is it that they do they, until you learn them all yourself (and they change anyway)?? Wish my transplant hospital had done that, my poor hubby and Mom had to do that for me. She is managing her steroid-induced diabetes well, her bloodsugars, etc and she has even taught Mike how to give her insulin and he does it like a real pro. She uses the Insulin pen, which looks kind of intimidating to me. Shes a brave girl, I am sure I had Bruce giving me injections but I don;t remember it, and the thought of him coming at me with a needle now is kinda scarey.
So, first week at home DONE. One day this week she opened a cupboard and a HUGE ceramic mug fell out (those 3 lb mugs) and landed right on her incision. Thunk.
I am so proud of Robbi. Its not easy the first few weeks/ months with a new organ, the meds and labs and incision and all the other things that go with transplant. Shes doing so well with it all, PLUS the kids, PLUS the husband.....amazing woman!

Robbi's Mom

Friday, October 1, 2010

FRIDAY, October 1, 2010

Today Robbi came home from the hospital. She called me on the way home, about 2:30pm, excited they had given her a yellow Johns Hopkins duffel bag with her "stuff" (meds, glucometer, etc) in it. Excited to be on the way home, and assuring me that she DOES take her immunosuppression serious, and in fact was wearing a mask at that moment. I was :) to hear that.
I am going to her house tomorrow for about a week and will probably feel sooooo different being there taking care of her, the kids, and the house POST OP than I was during the long, long wait.

Soon her new real life will start, after she has healed a bit, certainly before those staples come out, but soon. She is so concerned about her girls seeing anything icky such as her neck bruises, etc., that she was covering them with band aides in the hospital before she was discharged. But I wonder how they will react to her surgical scar and the staples? At least her 8 year old, who is so tender hearted I would not be surprised if I am told she cried when she saw it. She won't even step on an ant, she relocates them. I have shown Madi MY scar (much older and healed of course) to prepare her that Mommy will have one like Gramma. Madi doesn't even know Mommy had a LIVER transplant, she only knows Mommy needed a new BODY PART and thats what was making her sick and thats what we were waiting on. Never any question from her what the part was, where it was coming from, how would they get it in there, nothing. Thank God. Maybe Robbi will decide to not show them her surgical scar, I dunno.

More tomorrow.

Edited to add: Robbi loves her room and said she cried when she saw it.

Robbi's Mom

Tuesday, September 28, 2010

Wednesday, September 29, 2010 (plus old picture from 9-17-2010)

Remembered this pic and hoped it would come out better here than it does on my camera. These weren't even ALL the bags she had hanging, they had taken a few off, but I have never seen so many bags of "stuff" hanging on an IV pole. Of course, I am not an ICU nurse either so it may be not unusual. This picture was taken by me just as they were getting ready to take Robbi down for her second surgery to remove the bleeders and the hematoma on her liver.
Something else I just remembered, you saw the pic of her right arm taped to the arm board, tubes and syringes attached to ports, for some reason when the nurse (right after surgery) asked her which hand she wanted the pain control button (PCA) in, she indicated her right hand.
I wondered bow she was going to get her fingers working for that PCA with all those IV's and everything sticking out of her right arm.
When I went in at 3am to see her one more time before I tried to sleep, she was grimacing so I told her to push her pain control button (PCA button=Patient Controlled Analgesia) but the poor thing, it had slipped from her hand, both of which were tied down so she wouldn't pull out the breathing tube, so I put it back in her hand. Her thumb barely moved and I had to kind of guide it to the recessed spot where she was supposed to push. She tried to push it but didn't even have the strength to push it down. So I did what any mother would do, I pushed it for her. Then I did what any idiot would do, when her nurse came in I told her I did it. She didn't rip me a new one but told me in no uncertain terms I was NOT to push that button for her. (Yeah right, you know?)When her next Nurse came on, Rita, I told her I had to help Robbi out with the button because she couldn't push it hard enough, and told her the previous nurse had a fit when she found out I actually pushed it for her, and Rita said, "Honey, if you need to push that button for your daughter, you just go ahead and push it!" :)
************
So the news for WEDNESDAY, SEPTEMBER 28, 2010 is-
Robbi said her surgeon came in this morning and said she is definitely going to be discharged on Friday morning. I am hoping they get that teaching stated soon, it's a lot of information for her to absorb, especially when she is excited about getting home and back to her life and therefore a little distracted, I would imagine. Shes all alone right now so she should have had some "quiet time" to start reading some of the stuff they left her a few days ago, before she was really feeling up to it.

Robbi's Mom

Tuesday 9-28-2010

So Robbi is healing well, her drains were removed days ago and here she is about 3 or 4 days ago, no bandages are needed and she is moving around pretty normally. I talked to her this morning and she says its the "same old same old", they are trying to get her Prograf (an immunosuppressant)
level right, right now it's too high, plus monitor her blood pressure since she has turned hypertensive, and watch that coumadin. She will go home on coumadin. She always cuts her legs shaving so I hope she is super careful with that. My mom got her a shower chair, if it goes one set of legs inside the tub and one set of legs outside then I hope they are adjustable cos her tub is one of those clawfoot tubs from way back. Her shower at the hospital is small, floor made of some kind of stone, there's no seat and the entire shower floor slopes towards the drain in the middle so the only safe way to shower in that thing is to either stand on the drain or put a towel down and stand on that. Otherwise, when it gets soapy its treacherous. Wonder how many patients have fallen in those showers?
Her recovery just blows me away. I was about 4 mos out from my transplant when I remember walking to the bathroom and sitting on a chair at the sink and washing my face, hands, etc and thought what a big deal it was. Already, Robbi has taken several showers!!!
Mike is still there with her but is maybe leaving today or tonight to come home. She will be SOLO for a few days, her sister wants to go down Thursday and I will babysit my 2 yr old grandson so she can go. I know sometimes once you are on the road to healing, NOT having anybody with you is kind of a relief, you can sleep and do whatever you want, there's not as much junk in the room, etc.
Once Robbi goes home and is all settled in, I will end this blog because I am having it made into a book for her, as a keepsake. I will have to go through 18 months of posts and correct my typos and spelling errors and would also like to figure out how to make it in reverse order, in other words starting at March 09 and going up till now, so it reads more like a book and isn't backwards. Just correcting my typos and spelling errors will probably take a month!

Monday, September 27, 2010

Monday 9-27-2010


Here's Robbi with a neck free of IV's!!!
I talked to Robbi this morning. Maybe a little bit of cabin fever setting in, staying in her room most of the time except for her walks. She said she isn't going to be coming home until Friday this week. They have to tweek her meds, find the proper Prograf level, have started her on blood pressure meds because shes become hypertensive (which happens to most transplant patients), shes starting on the Coumadin pills instead of Heparin IV. Its not a set-back, its just getting it all together before she leaves.
Once she does leave, for the first month she has to have labs done every Tuesday and Thursday, which she can do at the lab near her house. She has to be back at Hopkins for their clinic once a week, either Wednesday afternoon or Friday mornings.
I can't remember the second month but there are still lots of labs and clinic visits. Not until about 6 mos out does it really get a little more sane. But they follow her closely for the first year, and still follow her for the second year. A little different than my experience.
Her in-laws are leaving Saturday so I will be at her house Saturday until her other mother in law arrives about a week later. Mainly to be sure Robbi doesn't try to jump back into her old self, mopping floors and running around taking care of the kids. Hopefully she will be happy to be home and happy to be resting during the day while the girls are at school, and the first weekend at home she will need her rest too.
It feels weird to be home and not at the hospital, but Robbi gives me phone updates. She lost 10 pounds of fluid in 1 day and shes so excited about that. Its really tiring to drag around the extra weight in fluid when you aren't used to it, and you are worn out anyway. So she is loving the Lasix and is happy to get weighed when she is losing the fluid like that! (In the picture you can see that she still has some fluid in her face. In person, I don't even notice it, but it shows up in the picture.

Robbi's Mom

Saturday 9-25-2010 and Sunday 9-26-2010


Heres my latest pic of Robbi, she is doing so well she walks frequently in the halls as well as down to the cafeteria once in awhile, she can do steps, she has given herself insulin 3 times already, and is so much like her own self again. Her recovery has been amazing to me. Her surgeon called it "remarkable", but he doesn't know my Robbi and how strong she is.
She has still got a bit of teaching that has to be done- how to use a glucometer, but she has already memorized her meds and knows what each pill is for. That alone is a bit daunting. Her edema from all the fluids is moving south so her goal is to get it off her thighs as soon as possible!!!! Shes eating without any problems and is on a regular diet. All of her nurses are wonderful and so on top of things I felt comfortable enough to leave Sunday. Mike will be staying with her for several days, I am anticipating she will go home maybe Wednesday or Thursday. As strange as it sounds with her previous bleeding disorder, they are giving her IV Heparin to prevent clots in the areas where they connected her new liver. They were just starting that Sunday as I was leaving, and they were making it a very slow drip. I am sorry I won't be there to see her excitement of being discharged, but Mike has promised to take pictures. We are all so proud of her bravery and progress, she has never once complained or cried and has done everything they asked of her.

Robbi's Mom

Saturday, September 25, 2010

Friday September 24 2010

Here's a slightly icky and mercifully blurred picture of Robbi's triple lumen central line, from her jugular vein into the inferior vena cava of her heart. Yes it even gave me the willies and I have had a few myself, but when its your child with one its a whole different story. This picture was taken just before they removed it.
Robbi finally got the last of 3 drains in her abdomen removed today, and later on she got her central line removed (neck). They do that right in her room. She felt so "free" to have nothing else tethering her down, except the IV pole to drag around. Shes up and walking frequently in the hall to get that fluid from surgery off her. She really looks like the "old Robbi" now, it's amazing. The steroids or one of her pain meds are causing her to have bad nightmares. Last night she got 4 hours of good, uninterrupted sleep.
She had some antibodies in her blood when they did some labwork that indicated the beginning of graft rejection (organ rejection) but her Dr. is on top of everything so he got her a medication they had to mix especially for her in the pharmacy that attaches to beta cells and stops the rejection process. I didn't explain it as well as the Dr. did but all is well. All of her medicine is by mouth now, except the insulin and her heparin shots and she is eating regular diet and eating a little more each day. PT came today and she started practicing stairs. She did fine.
They are still talking about her going home Monday or Tuesday at the latest. They still need to do teaching on doing her own bloodsugars and giving herself coverage insulin. The steroids cause her bloodsugars to be high and she needs the insulin to bring it down. Its only temporary until she is off the steroids but she was told she would be on the steroids on a low dose that tapers off for the first year after transplant.
Mike and Jamie brought Madi and Molly and Jamie brought her daughter to the Children's Place room [children under 12 are not allowed to visit patients up on the floors, so they have a special room where patients can come down and see their kids] and Mike went upstairs and brought Robbi downstairs to see the kids today. They were surprised to see me, and really happy to see their Mommy. It did Robbi and the kids a lot of good. Jamie has been such a great friend through this hospitalization, watching kids on a moments notice, she's such a sweetie.
[The Children's Room also has a camera in it, and patients who can't come out of their room and downstairs to see their children (or relatives) can see them on a special channel on their room TV. I think that's kind of cool]
That's all our news for now.

Robbi's Mom

Tuesday, September 21, 2010

Tuesday, September 21, 2010

(NOTE: Old picture from when she was in ICU , taken on the 17th)
This was Robbi's right arm in ICU right after she got out of the first surgery. I have never seen so much tubing and IV's in one person. Hard to look at that when it's your family and especially your child. They had her hands tied down so she wouldn't pull her breathing tube out. She hated it, of course.
***************
BUT today she is doing great. I am home and Mike is with her but she said she had a HUGE regular diet breakfast and told me all she ate. She will probably be up and walking off and on a lot today because she is anxious to get the fluid off her butt and lower extremities. Its all gone south and she is determined to get her old body back. When Robbi's determined, just get out of the way! Her Pastor from home, Randy, came to see her today and they let him take Robbi outside in a wheelchair for a little bit. On day 6!!!! :o !!
I am going back tomorrow and her sister is riding with me, and then her sister is riding back with Mike and I will be staying a couple of days while Mike is at home with his girls and his parents.
So I won't be able to post again from Hopkins but will play catch-up like I just did yesterday and keep this up to date.

Robbi's Mom

Monday, September 20, 2010

Last batch of pics for now

"THE SURGICAL SCAR" which Robbi has waited for so long for. She and her sister counted them twice- 64 staples. It is commonly known as the "Mercedes Benz scar", as you can see by the shape of it. You could probably buy a couple of Mercedes for what this surgery costs.
Here we are saying goodbye to Robbi just before they take her into the OR. We are trying hard not to cry in front of her, as you can see, her mood is quite different. She can't wait to get started!
(Her Dad Bruce in foreground)

Probably the longest walk Mike ever has or ever will make, pushing Robbi in her wheelchair to the OR.
This pic was taken while we were "holed up" in the hospital room before transplant, sometime between 11:30am and 1:30pm, while the drama unfolded above us with the gunman/ family member who shot the doctor, then killed his mother and then himself. We watched it on CNN and also out the window.
We had to stay "locked in" from 11am to just after 2pm. It delayed the start of her surgery by 2 hours.
Raven snuggles with her little sis Robbi during the long nite Wed/ into Thursday morning. We got to Hopkins around midnight Wednesday night.
Robbi's note to the Transplant Team, to find after putting her under anesthesia and taking off her gown. Her surgeon later reported they were amused.

More Pictures

This was taken of Robbi today, right after I washed her hair. She almost looks like the "old" Robbi before she got sick!
Here she is, still in ICU but was moved to the Transplant Unit a few hours after this picture was taken. She was sitting up for the first time, and looks good considering she had 2 major abdominal surgeries in less than 24 hours, huh?
Here she is this morning, as she walked her 2 laps around the transplant unit with Physical Therapy. sorry the picture was blurry but she wasn't walking "slow" and wasn't stopping for a picture, either. See the look of determination on her face!


Robbi's Mom

PICTURES, and Monday September 20, 2010 update

Thse pictures are loaded in backwards order (my fault) but here she is on day 3 in ICU. Her nurse braided her hair for her and she was allowed ice chips and tiny tiny sips of Hi-C fruit juice. That big smile is because that breathing tube is finally out!!

This is Robbi on the 17th, when she was found to be bleeding internally, right before they took her in for the second surgery to get rid of the hematoma and stop any bleeders, around 10pm. She had a boatload of pain meds in her, plus she was a sick "little" girl, so she looks not so hot. here.

Here is Robbi on the 17th around 2am, when we were first allowed to see her following the transplant surgery. She is very bloated because they gave her so much fluids during surgery.

***So heres the news for MONDAY SEPTEMBER 20, 2010**********
Robbi had a "bad event" night last night. The tubing from her pain medication box on the IV pole disconnected and her pump kept alarming. She would put her call light on and the nurse would come in, push a button, and the machine would stop beeping. Meanwhile Robbi is pushing the pain control button , thinking she's getting her pain meds into her. The pump starts alarming again, same thing, nurse comes in, turns alarm off, leaves, and as time goes on even pushing the pain control button her pain is getting worse and worse. Finally the 3rd time, 6 hours later, she puts her call light on because the machine is beeping, and she is by now crying and in pain, this time the nurse turns the light on in the room when she comes in and sees that there's a puddle of Fentanyl on the floor and the tubing is disconnected. She gets Robbi a new canister and hooks her back up and THEN they discover that her drain on the left side is leaking and theres blood all over the bed, her gown, etc. They get her all cleaned up and Robbi eventually plays catch-up with her pain meds and gets comfortable again.
I slept through all this 4 feet away in a chair. Aren't I a great patient advocate/ nurse & mom? I must have been exhausted, and the chairs they have over there in the rooms for families to sleep in are HEAVEN compared to sleeping in the ICU waiting room chairs with your feet propped up in a wheelchair, and one night Raven and I even slept in my Jeep in the parking garage (which wasn't a bad night's sleep either). So I woke up to bloody bedclothes, gowns, and towels on the bathroom floor- and Robbi told me the events that had transpired during the night. I can't believe I slept though it, I really can't.
Anyway despite a less than perfect night, she woke up to liquid diet- jello and broth and the nasty hospital coffee. (Do any patients REALLY drink that???) Physical Therapy showed up first and had her up out of bed and she made 2 laps around the transplant unit, at a good pace, didn't need to stop and rest or sit down at all. Next they had her sitting in the same chair I had slept in all night, for about 3 hours. They showed her some foot and ankle moving exercises to keep her circulation going and help prevent blood clots. After a little while back in bed she decided she wanted to get up and walk to the bathroom and brush her teeth, so she did and had no problems at all. She got another liquid diet for lunch and since she tolerated that so well when her surgeon came in to make rounds I said hey can you advance her to a soft diet and he said YES, so she was very excited about dinner tonight.
Robbi has something called VRE or Vancomycin Resistant Enterococcus and so she is on isolation precautions, meaning all visitors and all staff have to put on a paper gown and gloves before they go in her room. They said most of the patients on the transplant unit have VRE or MRSA or something else that immunosuppressed people get so easily. Shes on antibiotics for it. They changed almost all her meds today to pill form. Her platelets are still low so they gave her some other meds today via the line in her neck to help her platelet count out. When the last of a medicine called IVIG finishes running in tonight they are going to remove her central line, and all she will have is one regular IV in her right arm. :)
Then Occupational Therapy came in and asked her a lot of questions, making sure she has a house she will be able to go home to and manage getting around ok, like not 3rd floor apartment and all those steps, etc. She does have steps but Mike has plans to keep her on the bedroom level where the bathroom also is, and I do believe after abdominal surgery they say you can come downstairs only once a day the first week, but that could have changed. So she can come down for dinner, and be in her room all day getting back her strength, etc. OT also wanted to make sure she had plenty of help, etc and finally gave her a TheraBand which is a huge sheet of rubber band material that you wrap your hands around and pull for how ever many repetitions the OT asks you to do, several times a day, to help build up your arm strength. Those bands have about a million exercises you can do with them, I remember them, and once you ace the exercises they move you to a different color band that's less elasticity, and harder to do.
I left this evening to come home and wash my clothes, sleep in my bed, eat 'free' food (haha) but I will go back down tomorrow. Mike is with her tonight, I hope its a quiet night for both of them.
Oh- at dinner her tray comes and its jello and liquids again, I caught the lady who brings the trays around and told her Robbi was advanced to soft diet so she said she'd fix that right away, and brought her mashed potatoes and gravy, green beans (soft?) and she still had her jello plus a dinner roll. So shes finally eating some 'real' food.
She's such a good patient. I was thinking tonight as I was driving home, how I wish I had had many patients like her- never complains, easy to please, motivated, compliant, has good family support, and never fails to say Please and Thank You when she asks ANY staff member for something. She does as much as she can for herself and isn't leaning on that call light 24/7. Whew, she's an exceptional patient. And I would say that even if she wasn't my own child!
Now I am going to try to download some pictures, tonight I will start with her pics right out of surgery and then her daily morning pics showing the difference in how much better she looks every day. Later I will download the other stuff.

Robbi's Mom

Sunday September 19, 2010

Today was another big day for Robbi, because she was moved from Surgical ICU to the Transplant Floor, into a regular hospital room. Its a bright sunny room and over there its only one patient per room. She seemed to improve so fast, by the hour she was getting better with pain control, they were taking IV's out, letting her drink fluids, she was moving around in the bed very well (scooting up, sitting on the side of the bed, etc.) Her surgeon said this is how it's SUPPOSED to go, and its going well because Robbi is young and was healthy before she started getting sick. He said she is doing remarkably well though and he is very pleased. She was happy to see some of the same nurses that have taken care of her the past year during her many hospitalizations. Her face is back to its normal size, all the edema has moved south, and I take a picture of her every morning because the difference in her face day to day is so incredible. Today she looks just like good ole' Robbi, you half expect her to throw on clothes and just walk out of there. Her two lines, one on either side of her neck, were removed in ICU the night before she moved over to the Transplant floor, only the central line is still in. Her color is pink and perfect, even her eyes are white again, not the yellow color we have been looking at for so long.

Robbi's Mom

Saturday, September 18, 2010

THE DAY OF TRANSPLANT,9-16-2010, and Friday 9-17, Saturday 9-18 and Sunday 9-19-2010


We ended up sleeping for a precious few minutes Wednesday night, because the nurses, techs and doctors were in at regular intervals all night to have her sign consents, explain to her what was going to happen next, draw blood for labs, and other things in preparation for surgery. The surgery was scheduled to start at 11am Thursday September 16. The closer we got to 11 the more nervous we all got. Robbi got a little medication for anxiety. She felt nauseous, and it was probably just her nerves, because I think all of us felt a little nauseous, along with her.. This is the most time consuming and major abdominal surgery there is, and the consolation is that we are in a world renowned hospital and have exc'ellent surgeons and staff.
Robbis surgeon came in to see her and tell her that he was there, was headed back to the transplant OR area to get ready for everything, and informed her the donor liver was removed already. Robbi's surgery was scheduled for 11:00am.
Then things got a little twisted right about 11:10am. A man on the 8th floor, right above the floor we were on, shot a doctor because he was upset that after his mothers surgery she was left paralyzed. The nurse that was taking care of Robbi poked her head in the door said the whole hospital was on shut-down, a man had barracaded himself and his mother in their room (while the doctor, who was found laying shot in the hallway laying on the floor, was rushed into the OR,) and he still had a gun. The area surrounding the room he was in was evacuated and the police, SWAT teams and all security had the whole place locked down, all elevators were under guard, no staff was allowed in the hallways except staff. We hadn't heard any gunshots, or even knew anything was going on. The nurse told us to turn on CNN. We got CNN on TV and watched it all unfold both on the TV and out the window. On and on it went while all our friends and family wildly called, e-mailed and texted us about the situation since they knew Robbi was here and due to be in surgery. Meanwhile, we are worrying the donor liver is out and times a-wastin' on Robbi's new liver.
The OR calls the floor and says Robbi needs to get down there. Finally, Hospital Administration had to give special permission for Robbi to be moved from her room on the Transplant Unit to the OR, (same floor as the Transplant unit)while about the same time we hear the man has shot his mother to death and then committed suicide. We were allowed to get to the OR, and the chaos and drama died down from the events that had unfolded on 8th floor. We all walked down with Robbi as Mike pushed her in a wheelchair. The good-byes were bittersweet and while we all overjoyed "this was it", finally!- it was impossible to forget what a serious surgery this was and also be almost overcome with worry. Robbi was practically giddy with excitement!
The long wait started for us, and the new beginning started for Robbi a few minutes after 2pm Thursday.
We went to the OR waiting room and got updates every 2 hours from the OR about how she was doing. They had told us the first 1.5 hours or so are spent putting her to sleep, and inserting her Central line, IJ lines, foley, all those IV's in her arms including the arterial lines,
and preparing her for the surgery to begin.
After two hours we got a call to our cell phones that they were making the first incision and the surgery had begun. The next update was 2 hours later to say she was doing well. Then another one, she was doing well and the old liver was "out". New liver going in. Then a call that she was out of surgery and the surgeon would be out to talk to us after she was delivered to ICU. A little before 2am he came in and talked to us, told us everything had gone very well, there were no "surprises or curve balls", she only needed 6 units of blood during the whole surgery. He said he expected her to have a good recovery. He also said 30% of liver transplant patients end up having to be taken back to the OR due to bleeding after the transplant, so if that happened for us to not be alarmed or freaked out. Then he said we could go see her as soon as the nurses had her cleaned up and "tucked in". Finally, after 2am Friday, we were told she was in her ICU room and we could all go back. Raven and I went first.

She was very bloated from all the fluids they had given her during the 9+hour surgery. We had a brief but good visit with her and were surprised she knew we were there and while she couldn't talk to us and could only flutter her eyes open a bit, she squeezed her hands and signed "I love you" to all of us. Back to the waiting room so she could get some rest. Mike and Raven and Bruce fell asleep in the chairs but at 3am, I had to see her one more time and kiss her goodnight before I was able to try to sleep.
Early (6am) Friday morning a security guard came into the visitors waiting room, we had gotten 3 hours sleep in the miserable waiting room chairs for family and hadn't gotten any real sleep the night before, and rudely snapped the lights on signaling it was time for us to wake up. I was so tired, I just wanted to give him a good smack. We checked on Robbi. Her hemoglobin was still low (a sign of internal bleeding) and her platelets were low (clotting enablers), and even though her new liver was making bile which was a good sign, and her kidneys were working just fine, they told us she was going to need to go back into the O.R. and be re-opened, and any bleeders stopped, and making sure there were no other bleeders before closing her back up again.. An ultrasound was done and a hematoma was found on her liver. The blood transfusions to replace her lo hemoglobin and the plasma to replace her platelets continued, and she still looked a little yellow. She was using an alphabet board to spell words out, mostly asking when her hands would be untied and the breathing tube, which is very uncomfortable, could be removed. She had already started to breathe "around it" a little bit, which is a good sign, but makes the breathing tube more uncomfortable for her. She spelled out on the alphabet board she was hot and wanted ice washcloths put on her forehead, under her armpits, on her chest, in the groin, a bag of ice kept on top of her head, and all the ice-cold washcloth wiping we were willing to do. It kind of resembled hot flashes during menopause.
Soon, she was taken to the O.R. for the 2 hour procedure. When she came out and we saw her again in her ICU room about 5pm, half her IV lines on her right arm had been removed, her color was better, and she was again asking for the same ice routine. A little later Dr Cameron explained that the tube can make someone so 'anxious' it triggers an autonomic response and they feel like they are burning up. They have no fever, are not 'beet red' nor does their skin look red and hot. But the patient will feel like that.
At 5:00 Friday night she was still getting the icy washcloths and the medical staff were closely monitoring her labs, blood pressure, pulse, respirations, heart rate, and emptying her 3 drains that were slowly suctioning the blood from her abdomen, her urine output, and she still had the IJ lines and central line in her neck and still was connected to the ventilator with that breathing tube that was causing her so much misery.. But her pain level was good, she was becoming more alert.
At 7:00 when her Night Nurse (7pm-7am) came on, Robbi seemed to "turn a corner".
Her night nurse told her she would remove the hand restraints if she promised not to pull her tube out of her mouth. They would just put it back in anyway, the nurse said, so may as well leave it alone. She said there was a chance they would even remove that tube soon. Robbi was elated. This wonderful nurse,Rita, who had been working at Hopkins in SICU for 37 years, flushed her nasal gastric tube with ice water and it gave Robbi so much relief when she did that, because it helped cool her off a bit. About 10pm the Physicians assistant, another doctor,and Rita kicked us out and the procedure of removing 2 of her 3 lines in her neck (they left the central line line to her heart in) and the left arm arterial line. It took over an hour because the physicians asst. and dr had to apply pressure to these arterial areas until they clotted up and were no longer bleeding. They promised the breathing tube would come out next.
Robbi got a visit at almost midnight from her Pastor Randy, who was in Baltimore for a ballgame and hung out for a couple of hours with her and also Mike and I.

On SATURDAY SEPTEMBER 18 first thing in the morning the breathing tube was removed. Immediately Robbis problem with the overheating stopped. The nurses gave her a nice bedbath and tuned her back and forth a lot getting clean bedsheets on, one nurse gave her a cute french braid. Robbi discovered her TV worked and started looking for stuff she liked, she was allowed ice chips, then allowed to sip Hi-C fruit juice. The bed she was in can be made into a superhuge chair so they got her "sitting up in a chair" just by making the bed morph into one. Her noon labs showed her hemoglobin was holding at an acceptable level and her clotting was good (you could see good clots in her JP drains) so the blood and plasma transfusions were stopped. Everything is improving bit by bit but the doctors are pleased with the direction she is going in right now. They said they hope to be able to remove her right wrist arterial line and transfer her to the Transplant Unit Sunday. She took a nice nap this afternoon after Raven arrived, and they visited for a little bit, and is sleeping again now but will probably wake up a little later. Hopefully they will let her have clear liquids tomorrrow too. I have lots of pictures but will wait until I am home to try to post them to this log because the Hopkins wi fi is a little leary of posting on blogs and posting pics would probably get us logged off their network or publishing impossible.
We know everyones prayers are helping and we appreciate all the calls emails and texts about Robbis condition. Her family and many many friends love her so much.

Robbi's Mom

Wednesday, September 15, 2010

Wednesday, 9-15-2010 FINALLY!!!!!!!!!

Tonight Robbi got the call we have all been waiting for. They gave her till midnight to get here and her surgery will be done sometime after 6am in the morning. Mike, Robbi, Bruce and I all got here together then split up so the guys could park the cars. Robbi has had an EKG and vitals so far, been asked a lot of questions, and is waiting for the IV team to come up and start 2 IV's on her. She is excited and anxious to get this underway!! I am taking pictures along the way. Mikes kinda a nervous wreck, and Bruce has a car magazine to look at so he's "content but concerned".
I can't believe this day has finally arrived. Her Dr. called her tonight to say hello and wish her luck.
She has only met her surgeon twice.

So...here we are, we will either have to sit up in these awful chairs all nite or go find a lobby to crash in cos she has the smallest room on the whole floor, they were full and this was the 'reserve room'. After surgery she will go to ICU for a couple of days and we will barely be allowed to see her at all, or it will be very restricted visiting at least.
I will keep the blog updated throughout.

Robbi's Mom

Wednesday, September 8, 2010

9-8-2010


I haven't spoken to Robbi in a week (!!!) because she has been spending her days (and nights) sleeping while her in-laws are here. Mike said she has been able to keep her pain level down and is eating little bits of food here and there. She is still throwing up occasionally. That's all I know to update with until I speak to Robbi. Please keep praying for her.

Robbi's Mom

Friday, September 3, 2010

9-3-2010

Robbi had to go to the emergency room again last night due to the pain (gall bladder?). She spent most of the night at the ER, they gave her meds to relieve her pain, and she was discharged at 4am.
Shes home now resting and says the pain is manageable right now. Can you imagine walking around for a year with a bad gall bladder? Anyone who has ever had a gall bladder problem and ends up getting it removed knows what I mean. That gall bladder might turn out looking worse than her poor liver once they get her to the OR. When I had my gall bladder out, the dr. ended up taking pictures of my liver while they had me opened, because he couldn't believe I was still alive with that liver. It was pale and looked like a cobblestone road, nothing like a liver is supposed to look like. I ended up living about another year with that poor liver. I am sure Robbi's is very similar.
The wait will be over soon, it could be any day, we know that for sure, and that sure is a good feeling!

Robbi's Mom

Wednesday, September 1, 2010

9-1-2010 WOOOOOO HOOOOOOOO

Robbi had her doctors appointment today and she is now officially #1 on the list for the next A+ liver that is available, she's NEXT!!!! 18 months on the list, finally at last!!!!

Now we can hold our breath waiting for that liver to come in.
Thank You for praying for Robbi,and please pray for the family of whoever her donor turns out to be, for having to make such a hard decision and for giving the most precious gift of all, LIFE.

Robbi's Very Happy Mom (can I breathe yet?)

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

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

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

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

Tuesday, August 17, 2010

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

Monday, August 16, 2010

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

Wednesday, August 11, 2010

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

Sunday, August 8, 2010

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

Saturday, August 7, 2010

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

Friday, August 6, 2010

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

Thursday, August 5, 2010

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

Wednesday, August 4, 2010

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

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, August 1, 2010

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

Friday, July 30, 2010

Friday June 30, 2010 Update

Robbi's back at Hopkins again after a night at the local hospital ER due to pain (apparently another gall bladder attack) She and Mike were in the ER all night Wednesday waiting for ambulance transport to Hopkins to be admitted. Finally yesterday evening Mike said they were there and got her in a room. I talked to her but she was very drugged and sounded tired. Poor Robbi. Shes been through way too much. I'm not sure if she will be happier to get a new liver or to get rid of that hideous gall bladder.
Please continue to pray for Robbi, and her family. Her girls miss her when shes gone, and Molly doesn't understand. One day a few wees ago, Madi talked to my mom on the phone and said "My mommy has a drs appointment Wednesday, and she will be picking up her new body part!." :)

Robbis Mom

Saturday, July 10, 2010

Saturday 7-10-2010

Robbi was discharged today. No transplant, obviously. They don't know why she is having liver pain. They gave her pain meds and she is using a warm water bottle for the pain also. She is also on an antibiotic until she gets a transplant. We learned she has a spot on her lung, another thing they have known about, but neglected to tell Robbi. It was a very bad hospital trip this time and Robbi is depressed and feeling down. I know they will be calling her soon but the wait for Robbi is unbearable when coupled with pain and the knowledge that she has liver cancer, some lung spot now we don't know what it is, and the knowledge that the gall bladder could act up any time and put her back in the ER. Please pray for her. She really doesn't deserve all the crap coming her way these days.

Robbis Mom

Friday, July 9, 2010

New developements 7-9-2010 (Friday)

Tuesday night Robbi had to go to her local hospital ER for pain from her gall bladder again. They doped her up with pain meds and she was home Wednesday morning, to go to her scheduled drs appt with her Hopkins dr and also to Hopkins for an MRI that had been previously scheduled. She looked so sick, so she had the MRI at Hopkins, (in fact, when we got there they "expedited" her to get it right away, even tho we were late for the appointment due to traffic, etc. getting there.) Then we drove to the drs office, which is not at Hopkins but another location. The dr visit there was very emotional, the dr said her cancer has not grown, its still 1.5 cm so she still gets no extra MELD point for the cancer. I think this is so ridiculous. Robbi said, how sick is it to have cancer and be hoping it grows so you get an extra point? And shes right. Its a bad mental trip shes going through and very painful to
even look at her, for me as her mother, as it breaks my heart to see her so sick and so depressed, so hopeless. She cried at the drs appointment and he tried to console her but ended up giving her his cell phone number and said next time you have bad pain and feel like going to your local hospital, call me instead day or night and I will arrange to have you admitted to Hopkins.
So we get back home, Robbi goes on back to her house, and later on (last night,Thursday)got liver pain (not gall bladder this time) last night that was the worst pain she has ever had, she had Mike call the dr. on his cell phone at 1am, dr told him to have her go to her local hospital for immediate pain control and also so they could arrange for her to be transported to Hopkins to be admitted via ambulance. She got to Hopkins this morning around 10am or so, got a room, and they changed her pain meds to morphine. She has already been taken down to ultrasound and just got back to her room a little while ago.
The doc said to her, after he gave her his cell number, at the appointment Wednesday, something that kind of shocked me. He said to her she will be transplanted this month. I was so shocked, I said "July?" He said yes, there's 3 weeks left in the month. I thought that's a pretty bold statement to make, how does he know if a liver suitable for Robbi is coming available in the next 3 weeks? What if it doesn't happen, if it doesn't happen after he has said this to her she will never trust anything he says to her again. I hope he wasn't just "bullshitting" to make her feel better, as he told her this after she had broken down in tears and said she was feeling so hopeless and depressed. These are normal feeling when you have been waiting 16 months on a transplant list, and you have chronic problems,pain, feel like crap, and are having more and more frequent hospitalizations. Even someone who "has been there" telling you that these feelings are normal, really doesn't help that much. The important thing is to keep her spirits up and let her know not to give up hope, this is part of the process, and it too will pass.
My fervent wish is that they decide to keep her in the hospital until a liver becomes available for her. That's what they did to me, but I was way sicker. I don't want my Robbi to get nearly as sick as I was before she is transplanted because frankly it was a miracle I made it at all. I pray the system works like its supposed to and a liver becomes available for her before she gets any sicker. Mike got his sister in Pa. to take the girls for however long is necessary, and Raven has Jessie the dog. Mikes on is way to Hopkins to stay with her for as long as he needs to. If it gets very bad/ serious/ critical or if it looks like a transplant is going to be happening, I will be down there too.
We are all praying that "this is it". All we have is hope, nobody has said to us, "this could be it".
PLEASE remember Robbi in your thoughts and prayers. Thank you to all her wonderful girlfriends who check on her and encourage her and keep her spirits up. You know who you are!!!
I will update this blog with any new information, I promise.

Robbi's Mom

Wednesday, June 30, 2010

A Little Bit of Happy

Several days ago Robbi's Transplant Coordinator called her and told her they had done 2 transplants recently and she has moved up the list a little more :) Also they need an updated MRI for her as she is getting closer to being called for her transplant. We are doing that On July 7th at Hopkins. Getting closer! July 29 is my 9 year anniversary of my liver transplant, wouldn't it be cool if Robbi got hers July 29th also?

Also, I want to thank my friend Sandra for being such a faithful follower of Robbis blog and for all of the encouraging messages she sends. Sandra doesn't know Robbi except through me, and I know Sandra through one of my message boards, Thanks, Sandra, for being such a good and faithful internet friend. As usual, you ROCK!

Robbi's Mom

Friday, June 25, 2010

Update 6-25-2010


Almost hate to write this, because I don't want to "jinx" Robbi's good fortune the past 30 days since her last hospitalization the end of May, but she has been hanging in there and has had no problems with that wicked gall bladder...we had kind of fallen into an approx. every 30 day pattern of the gall bladder attacks, maybe we have fallen out of that pattern for now?? Sure hope so. Robbi's in-laws are arriving today for a 2 week visit. Her sister and I pitched in and helped her get her house ready for company. Even with the 90+ degree days we have been having, Robbi's energy level appears to have improved. Summer is always Robbi's "best" time of year, anyway. She loves the outdoors, loves going tent camping, loves being in the sun.
Next doctors appointment with her transplant team is July 7th. Her MELD remains at 21. (She seems to be stuck at 21!) Thank you for your prayers and good wishes, please don't stop praying for Robbi!

(FYI- Gregg Allman of the Allman Brother's Band had a successful liver transplant, due to Hepatitis C, recently and is doing great.) http://www.google.com/#hl=en&source=hp&q=gregg+allman+band&aq=1&aqi=g10&aql=&oq=Gregg+Allman&gs_rfai=CRMle7pYkTOX0GIuugATN08X2CgAAAKoEBU_QkIOz&fp=71611131acff80b7

Robbi's Mom

Friday, June 11, 2010

June 9, 2010 doctors appointment

June 9 Robbi and I went to see her regular transplant GI doc at Hopkins, who has been on vacation. We were anxious to get the "real" story for this cancerous nodules we were told she had when she was in the hospital a few weeks ago, something her GI doc had not mentioned to us and had us freaked out when we were informed she had liver cancer by an attending doctor at Hopkins last hospitalization.
Her GI transplant doctor told us the 9th that she does have a nodule 1.5 cm that's liver cancer, but "not to worry" (yeah, right) because they really aren't concerned about these types of nodules until they reach 5 cm. In 3 months time, from her last MRI 3 months ago till the one she had a few weeks ago, the size of the largest nodule has not changed. He said this nodule won't even get her any extra MELD points, she remains at 21. :( He told us she remains very close to the top of the list although that spot is 'dynamic' and one day she can be next to be transplanted and the next day she can have 5 people ahead of her, people whose conditions have worsened and are worse off than Robbi. At any rate, he gave her an appointment for July 7 and said he will see her then, if she hasn't already been transplanted by that time. Its very much a roller coaster type ride, for sure. Robbi remains in good spirits and looks good. Her awesome tan hides the jaundice she has, you have to look at the whites of her eyes to see how really jaundices she is.
Please remember Robbi in your thoughts and prayers, and thank You.

Robbis Mom

Monday, May 31, 2010

Happy Memorial Day Weekend


Robbi and her sister planned and executed an awesome party Saturday for their two youngest children, who turned 2 and 3 just 2 weeks apart. They did an awesome job, had a magician who also did balloon animals and hats, and they had 5 games plus hot dogs, popcorn, slushies, and prizes. It was a GREAT party, they both did such a great job. Robbi made it through the day ok, heres a pic of her. Hope everyone has a wonderful holiday weekend.

Thursday, May 27, 2010

ROBBI AND HER GIRLS

 
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Good News, for a change 5-26-10

OK, heres a bit of potentially good news. Yesterday afternoon after we were home from hospital we got a call from a doc who works with Robbis GI doc, who is on vacation. She said she had called Robbis doc, on vacation, and discussed with him the fact that were told Robbi has multiple nodules cancer) and one 1.5 nodule, etc. HE SAID that the MRI done 3 months ago made him suspicious so he ran another test (can't remember what it was called) and he felt at that time it is NOT cancer. The fact that her MRI from 2 days ago is unchanged from the one 3 mos ago is good. Her liver is cirrhotic anyway and is bumpy and not smooth so maybe the nodules were those bumpy parts, who knows. Anyway this doc said she was calling us because she knew when we left the hospital yesterday we were upset (to say the least) and she wanted to put out minds at ease. She said when Robbis doc gets back from vacation June 7 he will review the new MRI and if he gets a different impression he will let us know. We have an appt w/ him June 9th anyway. SO THIS IS (potentially) GREAT NEWS! NO CANCER, just cirrhosis and a bad gall bladder. I would just like to smack that doc who came and in dropped the cancer bomb on poor Robbi in the most uncompassionate way I have ever witnessed anyone deliver bad news. She evidently wasn't in class when they went over "Compassion and Sensitivity 101."
Thank you for your prayers and good thoughts, which are evidently WORKING so please don't stop!
Robbis Mom

Tuesday, May 25, 2010

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

Thursday, May 6, 2010

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

Saturday, May 1, 2010

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

Thursday, April 29, 2010

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.

Saturday, April 17, 2010

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.

Friday, April 16, 2010

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.

Friday, March 26, 2010

home again

robbi came home yesterday and while she is .. She's not one to "lay around" sll dsy,tired, her ascites is worse and she is very yellow; her appetite is good and she enjoyed sitting in the backyard and being w/ the girls & mike. She likes/needs her naps but still participates in the kids social activities too whenever possible,
Her MELD is a twenty-one, she was back at Hopkins due to varicies which were hemorrhaging. She says she is glad to be home but feels so 'safe' in the hospital. Mike and I feel the same way- we like her in the hospital because WE feel she's safer there. Thank you all for your prayers and kind words, it means everything to us.

Robbis Mom

Tuesday, March 23, 2010

Back at Hopkins 3-22-10

Robis back at Hopkins for a few days for a colonoscopy. Since shes a bleeder it must be done there. Mikes staying w/ her this time and I will have the girls. Thank you for your continued good wishes. They forgot the camera so no good pictures this time.

Robbis Mom

Tuesday, March 9, 2010

feelin good

this has been a pretty good week, not too much ppain and other that not sleeping im doin ok. the girls and daddy have been sick with the flu but seem to be better this morning. my mom is coming back to day after she gets her hair cut, i hope she doesnt break another toe! also waiting for labs ill keep you updated as of right now my meld is 20

Saturday, February 27, 2010


luv from strangers...

jeez what a blessing to have so many people that don't even know me to be praying for me. i think of you guys through out the day and often wonder if i could have made it this far without you and of course my friends and family especially my hubby mom and sister... I'm so ready for all this to be over and for me to get back to my "normal" i feel bad that I'm changing my moms life so much i know she misses being away from my dad and her everyday life but... i have to admit i love having her here and as much as the girls love to torture her they love having her too. so than you again to all the kind and thoughtful stranger out there that make me a part of their prayers everyday.... hope to be posting better news soon!!!!! luv n hugs robbi

Wednesday, February 24, 2010

View Outside Robbis Window- and we are going home



The beautiful old buildings of Hopkins and this time she got a room w/ a nice view.
The docs all just came in and said she can go home today so we are getting that in the works now. No paracentesis. They have added a beta blocker now too. So back home we go to Robbis house. I know her girls will be glad to see her home again. She went down to gift shop today and got each of them a stuffed animal.

Robbis Mom

Well here we are again, you see Warrior Robbi with her 2 big and bad IV's....she was sent here for 24 hrs after a trip to the ER (Local) due to esophageal bleeding. She rode down here to Hopkins via ambulance but Mike and I had to do the drive, quite an adventure but found Robbi comfortably in her room when we got here. At first they were just going to observe her but now they are talking about doing a paracentesis (hole put in her abdominal wall area to drain the fluid (ascites) from her belly) so we will see what happens. Meanwhile they are calling for snow again. Thank You for your prayers for Robbi & her family.

Robbis Mom

Tuesday, February 23, 2010

Another Emergency

Tuesday- 2-23-10 Robbi to the ER this morning when she woke up and discovered she had bleeding varicies. We knew she had esophageal varicies already but so far they have not bled. Its a very serious and life threatening condition when varicies bleed because of the real chance of bleeding to death. More later. Please pray for Robbi.

Robbis Mom

Friday, February 19, 2010

ROBBI HOME FROM HOSPITAL NOW

Robbi was released from Hopkins yesterday, February 17, 2010. They think its her pancreas and gallbladder that have been causing her all these problems, and have put her on pill called Ursidol. Most people who are going to have a liver transplant have their gall bladder out first, way in advance, but there was no time for Robbi, plus she has a bad bleeding disorder.
She will not have to have the PICC line inserted (much to her relief) and will not require 2 weeks of home IV antibiotics after all. Shes very happy to be home with Mike and the girls. I will go up Sunday to get the laundry and housework done.

Thank You again for all of your prayers and good wishes.

Robbi;s Mom