Music to my ears! November 29, 2013Posted by Stella☆LunaC in Mike's Big Adventure.
Tags: liver, Nazareth, rehabilitation, Thanksgiving, transplant
Happy Happy Thanksgiving!
We took dinner to Nazareth Health and Rehab Center; they allowed us to use one of their lovely conference rooms, and provided the flatware and dinner plates, coffee and water. The room was perfect!
Mike’s sis and brother-in-law came out and spent the day with Mike; she made the most excellent cranberry apple sauce for the dinner. We had turkey breast, dressing, Brussels sprouts with bacon and cheddar jack cheese, garlic mashed potatoes, gravy and rolls. She even brought a can of cranberry jelly for Mike to put on his sandwich; he just wanted the canned kind…*snorts!
We were so busy enjoying the meal and the time together, in a lovely homelike setting, I totally forgot to take pics!
Today I got a phone call from Mike’s Transplant Coordinator, Sue. She called to tell me she had just spoke with Mike; she could not believe the change in him!!! She said, while she didn’t really know Mike long before his transplant, did not really know the person he was before his illness took over, she had to say his post-op mental status sure surprised her since his discharge in Sept. She said he is a study in how a person can go from being so SICK and encephalitic, to where he is today, she couldn’t get over the improvement! She said she plans to use his case as a guide for others who may experience extremes of the transplant process (and help wives who are ready to pull their hair out, like I was).
it just made Mike’s and my day!
HAPPY@#^$%@$)! Thanksgiving, Turkeys! Yep, Mike’s back!
don’t rock the Bitstrip… November 19, 2013Posted by Stella☆LunaC in Mike's Big Adventure, to liver transplant and beyond.
Tags: bitstrips, Cirrhosis, liver, PT, Trailblazer, Willows
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Just when I thought it was safe to go back in the water….
You would think an oil change wouldn’t be any big deal, right? HA, you haven’t been in my neck’o the woods lately. Things around here just don’t work the way you’d think.
So I had this oil change coupon, with tire rotation included. $16.99 YAY! They got the TBlazer up on the lift, then I get the page….”Sandra, we have a problem…” Seems the lower ball joint is Lucy Goosey and needs to be fixed immediately-UGHS!
Then we can’t find the wheel lock tool. It isn’t anywhere in the truck; most likely at the last place I took the truck, a year ago. GAH!!!!! No problemo, they can unlock it, but now we’re up against a time frame and it’ll all have to wait until morning. SOoooo I called the neighbor and she came and got me and Igor, and brought us home. Jo saves the day!
Tomorrow, I’ll break the news to Mikee, I can’t make it until after the truck is fixed.
In other news, I spent much of the morning on the phone with various Skilled Nursing/Rehab facilities, trying to find out if any of them was close to accepting Mike into their PT/OT program. One promises to come through, but we are waiting for a yet to be named “Regional Entity” to call the director back. No worries, it will all work out eventually, right?
Day 74 : Colors of Days and the Marsh Ghosts of Cambridge…. November 4, 2013Posted by Stella☆LunaC in Mike's Big Adventure.
Tags: Fall, Liver Cirrhosis, LTAC, organ transplant, PSC
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I went to visit Mike yesterday, it was a beautiful ride and the best visit yet!!
I saw a strange sight, and had to get a pic this trip, because seeing IS believing. I drive past this one particular marsh just north of a lake between Fort Atkinson and Cambridge, and as you round a turn and look off to the south side of the highway, you may catch a glimpse of a strange local prank we will call the Marsh Ghosts of Cambridge.
Look closely, you will see what looks like an upside-down remote control airplane that perhaps crashed into the marsh. Or a kite that got away from it’s Owner, or….
The locals say there is an old man who for years has put on his waders, trudged out into the marsh, and erects up to 7 or 8 of these “ghosts”, and then moves them around every night when no one is watching. This trip, I only saw 2 of the strange apparitions.
Mike was very happy to see me and didn’t fuss hardly at all while I was there. I brought treats: a mixed box of orange cranberry, banana walnut and blueberry muffins, Crunch ‘n Munch and pretzels. Igor was of course, the hit of the day again, mooching Crunch ‘n Munch off Dad.
Dr. Hobson came in and talked with us, engaging Mike in the conversation as well. He told us the Wound VAC is doing remarkably well, and may be taken off by the end of this week! Then we can concentrate on getting out of bed and walking again. But for now, they don’t want to out any strain on the newly healing wound. Mike took Doc’s meaning that he is going home this week. I wish that were true, but he’s still got a long way to go… but I still believe.
The time change was the night before, so I stayed over until 4pm, pretending it was 3 pm, and yet staying longer.
I got to meet the girl Mike said reminded him of Natalie, and with her permission, snapped a quick pic to share with Nats. Cutie!
Mike is getting along a tiny bit better on his iPad I bought him last Friday. He still has issues with keeping online; the wifi connection goes off if he is inactive for so long, then someone has to re-connect him. No biggie, but he doesn’t like the smallness…He will get used to it, I hope. I found out today, his PS3 is not compatible with WIN8, so no point getting him a laptop. Besides, when will he enjoy it, after he is home and on his feet again? Nice now, while he’s bed-ridden, but that won’t last forever….
Mike called me this morning, cheery again, until he started talking about how I was never around to see things happen. When I reminded him I was there yesterday, and it was on Sunday, he got very confused and argued that it was Monday I came, and didn’t show up at all for the weekend. Nothing I said would change his mind, he got frustrated and then hung up on me when he didn’t want to talk anymore. Rational Mike flew out the window again……
I don’t know when this will end, the Seroquel helps a lot with the mood swings, but it seems to wear off after about 4-5 days, with peak of clarity on day 3-4. He is also sleeping more, and his days and nights are screwed up. I spoke with him at midnight last night, and he swore it was noon. I told him, “Mike, look outside your window, it’s pitch black nighttime…” Nope, that didn’t matter; in his head it was high noon…..OY…..
Now I wonder if or when he will manage without anti-psychotic meds…his Psych Dr sent us a letter out last week, she is quitting the practice. Lovely, they are all dropping off Mike’s radar like flies…
Tomorrow has to get better. I will not be able to go in, awaiting a delivery via UPS in the afternoon. He will be disappointed, but then he doesn’t remember when I am there, so I guess it really doesn’t matter…
I started another Ijustwantablackhat for Mike; seems his other hat got lost in the laundry. GRRRrrrrrrrrr….
Down the LTAC Road October 31, 2013Posted by Stella☆LunaC in Mike's Big Adventure.
Tags: Indianapolis, Samandbridget, wedding
Oct. 16 Mike was transferred from UW Hospital Madison to an LTAC (Long Term Acute Care) hospital a couple miles from UW Madison.
Select Specialty hospital is geared toward patients with complex care issues that require a longer rehab time.
Mike is currently undergoing Wound VAC therapy to help close an opening in his incision.
V.A.C.® Therapy for Wounds
Since its introduction in 1995 (U.S.) / 1994 (Europe), V.A.C.® Therapy has changed the way wounds are healed. With more published clinical evidence than any other form of Negative Pressure Wound Therapy, V.A.C.® Therapy has been selected as the treatment of choice for more than 7,000,000 wounds worldwide*.
V.A.C.® Therapy promotes wound healing through Negative Pressure Wound Therapy (NPWT). By delivering negative pressure (a vacuum) at the wound site through a patented dressing, this helps draw wound edges together, remove infectious materials and actively promote granulation.
Videos can be found on YouTube- Warning! Graphic content, proceed with a strong stomach!
Mike is currently undergoing mobility exercises to improve muscle tone and yesterday they got him up and sitting at the side of the bed! He is still very weak but is gradually making improvements
Today is Halloween and our 11th anniversary! I’ve decorated Mike’s room for the occasion.
Last Thursday I got him an iPad to help pass the time while I went out of town to my youngest son’s wedding. I am so glad I went, it was good to see friends and (ex) relatives I’ve missed seeing in over 15 years
Youngest daughter Nats decorated the cake!
Day 54 post -TX October 15, 2013Posted by Stella☆LunaC in Uncategorized.
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Oct. 15, 2013
Hubs is 7 weeks post-tx. He is still bedridden, his legs are useless from being sick so long, and now going through 2nd rejection period. The steroids along with fighting 3 weeks of CDiff and other GI infections, leaking bile duct, peritonitis, etc, are making him (and me) nuts! He is so depressed, emotional, sad, emotional, tragic, it is heartbreaking…
Sunday I visited with him for 8 hours, the longest we have been able to enjoy each other in weeks. He was in such a good mood, even took 4 phone calls from close friends he grew up with! (in retrospect, maybe he got feel-good overload) He was joking with the nurses, being a real sweetheart.
Most of the time, he wasn’t really connecting the dots, the hallucinations are freaky, bugs in his food, “not poppy seeds, they move all over the place…”, people in the room he talked to , they didn’t reply so he continued to talk to them, his humor throughout all that is amazing…
I got to see a Hoyer lift in action. It is used to get him in and out of bed, and into the shower.
By 5pm Sundowners (we call it Moon-Pie), he had reached critical mass, had made up his mind he was coming home with me, so we could snuggle in our own bed, us and Igor. He got so unreasonable, the nurse had to come rescue me after she heard his outbursts at my trying to explain why he can’t leave just yet…
Everyone keeps telling us he was so sick pre-tx, it will take him a long time to recover, he won’t remember any of this (he remembers everything negative, not the positive, and is remorseful the next day) and they say they’ve seen it all before, and once the steroids are reduced, he will be back to himself one day like a light switch going on……I just want him to get better… this is so horrible…..
Fighting the good fight, time marches on… October 5, 2013Posted by Stella☆LunaC in Mike's Big Adventure.
I sit here with a nasty flu bug, UGH! I find myself wondering how long Mike’s recovery will take. It has been 6 weeks since his liver transplant, seems like an eternity…
Mike has faced a couple recent setbacks and has come out the other side, only to face yet more challenges. His latest challenge seems to be the most tenacious. He has been put in an isolated environment for 30 days until the danger is past.The barrage of antibiotics, steroids and other meds are also contributing to his slowed progress, and they keep assuring us he will come out of this, this is completely normal progress, we just have to be patient.
There will be a meeting with the Drs, hospital staff and family about continued healthcare plans, long range objectives and goals. We hope to have a clearer picture then.
What a struggle this has been for us all! Mike is worn out and tired of it all, but he’s actually making progress, even if he doesn’t see it. We will continue to be there for him; he has come so far and the end is on the horizon!
Happy Birthday, Mike, again! September 25, 2013Posted by Stella☆LunaC in Mike's Big Adventure.
Mike was brought back to UW Hospital by ambulance from the rehab facility Tuesday night with a 102 fever and in quite a bit of pain and distrerss, not to mention he couldn’t talk, and was obviously confused.
Last Sunday was Mike’s birthday. His sister, her husband and I planned a trip to see him, take a cake and try to make his day a little brighter. Instead, we were surprised to learn he was in a great deal of pain, from a bad wisdom tooth, or so we thought….his temperature fluctuated between 99.5 and 100.8, sometimes reaching as high as 102! Something was happening, and tests were ordered. The day was not a good one for our Boy, and we went home perplexed.
Last night at 11:54pm I got a call from the hospital, one of Mike’s doctors said Mike needed to have some repairs done to clear up an infection. They were scheduling him for first thing in the morning and said get a good nights sleep, he will be fine!
They found bile in fluid drawn from an LP done the day before, tests confirmed the infection source. Finally, we could put a finger on the culprit!
The hospital called around noon, Mike was in Recovery, all went well, the leak in a bile duct was repaired and the peri-area was freed of infection. Tests concluded that no infection had got in the bowels, and everything was good to go. He is doing great and is sleeping for the first time in 6 days!
Soon Mike, you will be back on your feet, starting rehab again, and giving the nurses hell! Now get to WORK, battle-scarred Warrior, another battle is WON! WHOOOT! <3 <3 <3
Back from the Abyss~ September 5, 2013Posted by Stella☆LunaC in Mike's Big Adventure.
Tags: Cirrhosis, liver transplant, PSG
Another weekend is nearly upon us. Labor Day makes for a short week
I had a glimmer of hope when the nurse called to say they think Mike might be coming back….and he wanted to talk to me.
Apprehensively I told her to pass the phone to him and she did. When I heard his voice, I knew that he was emerging from that dark place that he has been to for so long.
He told me it was a rough day and that he had been doing a lot of thinking and I shared with him that I had learned a lot of things and that our lives were going to be vastly different in a better way. There’s still so much that we have to do and he started to sound a little bit like it was too much for him to handle so we kind of change the topic a little bit… but he came back to it again and said he just didn’t know how we were going to do all of this, there was so much to think about…
I told him we’re going to do it together but he’s not alone and I could hear his voice crack with emotion.
I just about lost it and then he said I wish you could come by tonight. I hated to have to tell him but it was getting so close to desk I told him it would be dark before I got there and I have to turn right back around and come home. You got a little quiet and then in the next sentence he said well just come and get me I’m ready go home. My heart stopped and inwardly I was bracing myself for the verbal assault that would follow once I told him that he wasn’t ready to go home yet until the doctors told him he could go home.
He was there for 10 minutes and gone again in one sentence and then he said he had to go to the nurse had come into the room and I could hear in the background telling the nurse that he was trying to get me to come and that I said he was going to go home tonight and I could hear the nurse tell him no, he wasn’t ready to go home yet and I wasn’t the one who was deciding that.
At that point, I heard him start to protest and then he hung up the phone.
I cried for nearly as long as our conversation had lasted. And then I remembered the man in the classroom who told me his wife had gone through the same thing and suffered the virtual same symptoms that Mike was now exhibiting. He said it was the hardest part, but once she got over that, she was back to her normal self again in no time.
Another fellow knitter contacted me today from Ravelry to tell me he had a liver transplant 15 years ago and was doing fine. He said the first month is the hardest…
Mike’s sister said it’s like the well pump is priming and we’re just getting little glimpses of his return and while it sure was short, it was still there and it’ll be back.
Reinforcements are here today!!! September 1, 2013Posted by Stella☆LunaC in CJ and Family, UW Madison.
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Teh oldest Brat #1 arrived last night amid storms and other excitement.
We got up early and took a ride to see Mike; he was still groggy from sleep aid given the night before~we ate some lunch and day with him a while longer…he finally told us to get going. I hated leaving him like that, but he still needs much rest…
Time to call it a night; tomorrow is Rug Cleaning Day!