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