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

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

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 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

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