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


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


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


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