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He is a widower with 2 children 23 and 28. The 23yr old son is a College student who was going to take test and apply to Medical School. 28 yr old daughter has anxiety and a 3yr old. Today at the hospital the Social Worker presented my Nephew with the 24 hour Care Plan to be filled out and implemented upon BILs discharge. The Transplant will take place 2hrs from our homes. Following surgery BIL has to remain within 60 miles of hospital along with 3 full time Caregivers. Son will be first Caregiver. That is where the list ends. I so want to help these kids out. But being stuck in an apartment for at least 30 days helping care for someone having had this surgery, I can't seem to wrap my head around it. Should I decide to do this there are in hospital education courses. But I would like to hear some personal experiences before I commit myself.

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If I had the time off to devote to your BIL's recovery, I would do it. It's only 30 days which will go by quickly. The patient should improve daily (God willing) as the transplant center vets the recipients for success in the evaluation process. I would imagine you'd be assisting him take his meds on time, walk a bit, take his vital signs, etc and work with his post transplant coordinator closely, probably coordinate home health, lab draw,etc.
Good luck in your decision- you have a chance to really make a difference in his life as well as his family's.
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Bad day. I can not sleep. I am going to do few word sentences so this doesn't turn into a 400 page novel. No paragrahs so it doesn't take up too much space. BIL having significant abdominal pain Thursday and started losing his voice Wednesday. Friday voice almost completely gone. Friday: paracentisis done to drain Ab fluid. Continuing Ab pain. Ab CT scan. A lot of blocked gas. Endoscopy on throat. 1 paralyzed vocal cord. Saturday plan: BILs daughter, BILs sister and husband to travel to Houston. My daughter in law to keep nieces 3yr old. I need a mental health day. The group drop off 3yr old and leave. Child proceeds to throw 45 minute meltdown crying, screaming, trying to claw her way thru back door. Non stop...45 minutes. Not typical for this child but it happened. Group arrive in Houston. Gas problem not resolved. As described by another poster group finds a monster inhabiting BILs room. Awful, hateful, monster. He is refusing LVAD...if offered. He has not signed ANY paperwork that was due 2 days ago. My phone blows up as group travels home. BILs other sister traveling to Houston Sunday morning and invited niece. No babysitters available. I told her no and why. My daughter in law sugar coated the child's meltdown. Nephew mad at Niece because she's not returning tomorrow. 5 hr round trip plus visiting time. I talked to Niece for 1 hour tonight. Then to my husband for 1 hour. I told hubby if there wasn't a complete turn around and better news tomorrow he needs to get his @$$ on a plane pronto to be a part of this. This doesn't appear to be a med change thing. Stress probably, pain maybe but he says it's under control. The only good news is Nephew is headed back to College Monday.
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Well it's good you are going on the trip to Htown to take notes and write info / answers down.

I'm thinking you all will be staying in Houston for the aftercare? If so there are lots of apts that do short term (30 day) rental within short range of TMC. I'm not talking places like Home2Suite by Hilton or ExtendStayAmerica but apt that are more corporate housing geared for families having care at TMC or for medical staff who are there for short-term training. With shuttles back & forth to TMC and do stops at nearby grocery stores. Yeah it seem to initially cost more but may be worth it as Htown traffic is a beast & super stressful unless the kids already are used to its daily traffic & the toll-roads. Tempstay.com corporate housing is the bigger one that does this. I think all are corporate housing with handicapped entry and bathrooms, laundry, wifi, land-lines and are gated access (so if it takes you all 15 minutes to get BIL out of the car & into the apt, you don't have to worry about getting robbed….).

Whatever you decide, ask the transplant discharge nurse about "land line" need.
I think they want wherever you are staying to have its own old-school land line telephone so that if EMS need to come, the 911 dispatcher can provide the exact address via the land-line. Cells apparently just can't do this. Could be an life or death issue so the land-line is mucho importante. Comprende?
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Hi iggi,
BIL is in JC Walter Jr Transplant Center. It's part of the Methodist system. You are probably more sure of the affiliation than I am! Yes it's in the TXMC. One of the places I did happen to look up last night was TempStay. It looked really nice and safe. Pretty sure landline was one of the requirements.

Just off phone with Niece. She's seriously considering being the 2nd trained caregiver but only if Nephew agrees to paid caregivers assisting them. Oh man, these kids might get this right! If I only have to provide them information and occasional support this might be okay. Hard, but okay. I did tell her about TempStay, shuttles, etc.

No call from Social Worker but she does have 24hrs to contact me.

One of the requirements was to have a hurricane evacuation plan. If the social worker can not assist with a template for that I may have to bend your ear on that Iggi. I think you just might have some experience with that.
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Thanks Guys,

I totally agree. And yes, I may have done the Caregiver white lie. I don't know if BIL being uncooperative will get deemed uncooperative candidate but it's sure not gonna help being there is a pysological assessment in progress. Yes, they may not be thinking clearly as to the recovery and everything else you mentioned above. I think it's pretty common for men to experience depression after by-pass surgery. I had not even had time to consider BIL was a prime candidate for depression. I am sure both BIL and Nephew haven't either. Their immediate concern I am sure is BIL dying. Guessing they are thinking recovery can't be any worse than where I am right now. Leave me alone! Depending on where Nephew was in pre med studies apparently they haven't gotten to the mind body connection or post surgical depression. Even if he's made it that far he probably hasn't had time to remember either. I will try to get him on the phone today and try to convince him he needs to get on board and pro active with this.

Thanks for posting and jogging my memory .
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Lizzy---

Well, this is totally normal on all parts. Sorry to say that, but this "pre transplant-I'm super sick and may die" attitude is REALLY hard to deal with. Your BIL is getting the best care possible, I'm sure. I wouldn't even be surprised to find that my SIL has seen him, he's doing transplant rounds now--(he is going to be a Hepatologist specializing in Liver transplants)...small world.
The whole family needs to be on the same page. Period. The SW is just doing her job (ours was a joke, I asked her for help so many times and she'd push these pamphlets across her desk--she NEVER walked down the hall to even MEET my hubby!)
There likely will be more of these "days", before, or if, your BIL makes it to the actual transplant.
As I have said (and not to appear a saint, which I MOST assuredly am NOT!!) I was the only person on board with hubby's post op care. I had to address the depression he had (and still has, times 10, now)...I had to drive to every single apt and take notes. I had to deal with the ins. co. by myself with hubby second guessing me all the way. I shopped, fed, cleaned, babysat....and hubby wondered why I "tanked" when he was "better".
Maybe there are a few too many of you running to him? I don't know. Hubby would state he wanted visitors, but he slept through most visits and he is almost 100% amnesiac about the 2+ weeks he was in the hospital.
Hang in there, you are SUPPORT, not his primary caregiver.
DEEP BREATH. Many things are out of your control. And good luck. My heart aches for everyone involved in this. NOTHING can prepare you for the emotional rollercoaster you're on. Just try to pamper yourself just a little and set boundaries....and know that somebody out in cyberspace really "gets" what you're going through.
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BIL passed away this evening. Today was a train wreck that just couldn't be stopped. 2 of BILs siblings were at the hospital and his son. BILs daughter, his sister, her husband and myself were headed to hospital. BIL died while we were in route. My husband, BILs brother is in Kansas he will be here tomorrow. He is taking it very hard. I just got home from Houston. I will have to tell my son and daughter in the morning. Some deaths are harder than others. This is going to be a hard one. I will be back next week if time allows. This sucks.....
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Lizzy, I am so sorry for your loss.
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Oh Lizzy; I'm so very sorry!
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Thanks everyone for your condolences. It has only been 8 days but in a way it feels like it has been a year. Lots of things to get through. Then the scramble through paperwork to try to get taxes to CPA. I was put in charge of that. I pulled an all nighter and we got that delivered today. BIL had a 3 page handwritten and sealed Will in his is safe. The Will was very specific. We had an attorney come to BILs house. There was an old fashioned reading of the Will at the dining room table. This IS Texas y'all. The Attorney is showing the Will to a judge to make sure there are no problems. The Attorney says he sees no problems. Though not recommended holographic Wills are legal in Texas. BIL left a chunk of change to Nephew to pursue becoming a doctor. Everything else split evenly. BILs sister my best friend and I have counseled, advised,etc,etc about not blowing through the money. Kids met with BILs financial advisor today before we met with BILs CPA. They were advised, counseled, etc by both financial advisor and CPA. So...the Old Girls have done all we can do. Now we sit back and watch how this unfolds. BIL was so full of life and everyone in 3 counties best buddy. He and his son traveled the world after his wife passed. BIL could not have crammed 1 more hour of fun into his 52 years. It's almost as if he knew on some level he would not be with us into our old age.
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