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