grimmie

Bursting At The Seams With Joy!

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Guess I need to update.

Today was my usual day to head down and be with Paul for three days, but the flooding in Houston kept me at home. 5 people are confirmed dead, several were found in the bayou that runs right beside his hospital.

I'm not sure it will be safe to go down tomorrow due to the fact, the route I have to take had some of the worst flooding with stranded cars on the road. Have to watch the news before making my decision.

Today marks 10 weeks in ICU. Because he came off and went back on the ventilator 4 separate times, two weeks ago today, surgeons did a tracheostomy to make it easier to vent assist him, should it become necessary. It's also easier to suction secretions.

He tolerates the trache pretty well after the initial pain and sore throat passed. They ordered a valve that allows him to talk but it restricts air flow and he becomes short of breath and anxious, so he doesn't use it often.

The kidney Drs. are encouraged with the amount of urine his kidneys are producing and tell us the kidneys are slowly coming back. He gets dialysis as needed.

PT works with him everyday, he is still very weak and has lost almost all of the tone in his leg and hip muscles. It is heartbreaking to see him so emaciated, he's always been a strong beefy guy.

The hardest battle he is fighting now is anxiety when he becomes even a little short of breath. Despite the Drs. assuring him his lungs are able to provide all the O2 he requires, when he exerts himself during PT, repositioning in bed or talking...he becomes anxious and starts a pre-conditioned rapid shallow breathing which perpetuates his anxiety, then he asks to be put back on Cpap.

The staff and Drs. are becoming frustrated by this as are we. He cannot leave ICU while requiring the ventilator. He has been told several times by staff that the shortness of breath is due to weak muscles and he must not panic, rather breath slow and deep and consciously use those muscles to strengthen them.

But he won't push himself through the anxiety and shortness of breath and seems to have given up.

I'm going to talk to his Drs. Maybe they have a solution that is not in pill form.

On a better note, I talked to the team about that nurse. She hasn't been assigned to him since. We heard some gossip that she was being watched. Evidently I am not the only family member to complain about her.

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This is a cross post from the Texas thread.

At 4:30 this morning, Paul was just finishing up his 10 hr. Dialysis. He became short of breath, asked for suctioning, it didn't help. He was given a breathing treatment, still no improvement.

The ICU Dr. on call came, scoped him thinking a mucous plug was causing the distress. He found a small plug in the left lower lung, flushed and suctioned it. Still no improvement. He was put back on the ventilator.

The head ICU Dr. Came and scanned the heart and abdomen looking for blockages and found nothing. A chest X-ray was ordered, it looked clear, lungs inflated, no collapse.

Then the original ICU Dr. sits down and asks me if Paul and I had talked about advanced directives as to his wishes. I told him yes we have. About now I am silently freaking out. I asked him if I should call our children in.

He never really said yes or no. At this point, I thought, this is the same guy who made the blunder about the donor lung dysfunction. I'm not going to allow him to make me panic, not yet.

I just decided neither Paul or I was ready to go down that path yet. I stopped talking to him and decided I would listen to the transplant team and only them.

I was right to do that. I asked the Dr. I love the most to be straight with me...if The kids needed to come.

He straight up said no.

They are giving supportive care and treating him for infection and rejection. He is supposed to go for CT scan and echocardiogram soon.

He needs all the prayers and positive thoughts you can spare.

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Oh QH, so sorry for all the up in the air you two are going through right now :huggy:

Just from experience with what my brother is going through, there are doctors who are optimistic and very helpful, and there are others that just flat out should not be in the field they are in. Do your best to listen to the ones who have hope for healing. I and my family are sending healing thoughts and prayers to you and Paul. We're rooting for him!

A couple quotes that helped us get through were, "Faith: It does not make things easy, it makes things possible" and "The moment you are ready to quit is usually the moment before the miracle happens. Don't give up"

Stay strong you two!

:angel3:

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Paul was doing much better when we left tonight. The kids took off and came up to be with me. I was grateful for the company, but it wasn't necessary. He quickly responded to treatment. Every test they took came back with good results.

They think it could have begun when he got nauseated during dialysis and vomited. He might have aspirated a little into one or both lungs. They explained, by nature, donor lungs are hypersensitive to toxins and foreign matter, so they reacted pretty quickly.

They are treating him for infection and rejection just in case it's not aspiration pneumonia.

I am pooped, after 2 nights on that rock hard thing they call a convertible chair/bed, I am so looking forward to my bed. Thank you for your prayers.

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I have read your journey you posted here and am sending you and Paul my deepest and sincere healing vibes.

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Sending thoughts and prayers to you, Paul and your family. I think of you and your family often since I have been in similar shoes some years ago. Take care of yourself!

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Thank you everyone for your thoughts and prayers.

We are waiting for blood test results to determine if he will have a PEG tube placed at noon today.

Final verdict on the nausea and vomiting is poor NG tube placement. It must have gotten dislodged recently and was sending the liquid feed back into the stomach. He has had several episodes of nausea and vomiting since last Friday. I can't help but panic when this happens, but thankfully, so far there has been no damage to the lungs.

His kidneys have stopped producing much urine since last week. They aren't sure why, but think it is related to the lung infection and Prograf levels. Anti rejection drugs are hard on kidneys, kind of a necessary evil.

We are hoping things will calm down after the PEG tube placement and he will get better nourishment and begin to get stronger so he can get off the ventilator and begin to ween down to lower oxygen requirements.

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QH,

Great that medical staff stays on top of Paul's care, do hope the going will soon get better for both of you, as you have had more than your share of road blocks in the way of Paul's recovery. I hope he doesn't continue to need dialysis in the future, but it will be a bridge you cross as the rest of his health improves. :angel3::angel3: Best wishes. PD

Edited by Peppers Dad

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Thanks PD, always appreciate your kind words.

Paul's PEG tube placement went great, they did it in the room. I walked in afterward and his NG tube was gone! Oh I was so excited, they told me it could be 24-36 hours.

He's eating ice right now, that is a huge step forward, he hasn't had anything by mouth for over a month.

While waiting for his hiccups to subside before I gave him any more ice, he's fallen asleep. That's good, he needs the rest, he has a 10 hr. Dialysis ahead of him tonight and he won't be able to get any sleep.

I look forward to a good nights sleep at Nora's Home tonight, a beautiful facility for transplant patients and their families.

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Good morning! Hope the night went well. I have been thinking about the anxiety about breathing that Paul has been having and the challenges of overcoming this on your own or with medication. I am claustrophobic (sp?) and I take Xanax when I fly. I just take a small dose, I find that I only need half of the pill that is prescribed, and the worries just leave me, they just aren't there anymore. If something like this could work for Paul, I would try it. After flying with no concerns for many flights, I am more confident in general about coping with flying and can win the mental battles of being in small places without the meds. Maybe this could be a stepping stone for him if he can take a med like this given his medical condition. Only side effect for me is that it makes me sleepy.

Take care -

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Magic, thanks for the suggestion, I will ask them about it. He certainly needs something. The orders for anxiety meds must run out every 3-4 days, because I asked his nurse on Wed. about giving him something. Haha his foot was going 90 mph and that's my first indication he's anxious.

She said nothing was ordered and she would request something for anxiety. That is silly not to have something there for them to give him! It's not like he's never become anxious before.

A Fellow with the transplant team came in yesterday and told us he's fighting aspiration pneumonia now but because they were able to culture the secretions from the last scope, they have the proper antibiotics on board.

The real test now is, weaning him from the vent. He rolled his eyes at that bit of news. Poor fella, he knows what that entails. But he will not leave ICU until he can maintain good O2 Sats and CO 2 levels.

I need to get ready to pick up my grandson from his last day of school. Taking him to lunch and then a Graduation pool/sleepover party at his friends house. He is officially a freshman in high school next year.

Then I'm shopping for something to wear to our nephews graduation tomorrow night and getting a pedi. I found pampering myself keeps me sane and centered.

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Little update. Paul will have a procedure tomorrow to modify the PEG tube so the liquid feed will not be able to enter into the lungs due to reflux. They are hopeful this will stop the aspiration pneumonia he's been fighting for two weeks. Once the lungs clear up, he can get on with his recovery.

Verdict on the kidneys is a harder one to call. The drugs he gets to support the lungs are tough on them. Getting the lungs healthy will hopefully kickstart the kidney function.

They would like to get him weened from the need for Cpap so they begin the steps to remove the trache.

Then we can head to rehab and finally see the light of the tunnel.

Edited by QH_LUV_R

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The PEG modification has worked, he no longer has reflux. He has been having almost daily bouts with nausea and vomiting right after his meds are given through the PEG.

The lung team walked in as he was throwing up on Thursday. The Dr. had the nurse open the old PEG and it relieved the nausea almost immediately. So that is the venting they spoke of with the original PEG tube.

The kidney team told us the damage to the kidneys is permanent due to the length of time he's been in failure. And if there was a chance for function to return, it was very small.

We aren't buying it! I have talked to too many organ recipients who were in failure for 6 months, 12-24 months and no longer need dialysis. So we are claiming total recovery and remaining positive.

The really great news is, he is ready for transfer to a rehab hospital next week.

For the first time since transplant, he is infection free.

He walked the hall on Thursday and came back to the room and sat up several hours. When he first sat down, he was short of breath and asked for more oxygen, but the PT and respiratory therapist talked him through it and he was able to recover his O2 Sats and his respirations came down after a few minutes. Proof that his lungs are able to provide for him. It was such an amazing moment for us.

When he gets to rehab, the immediate goal besides strengthening and conditioning, is to wean his dependency on O2 supplement and remove the trache. The hospital he's going to has an excellent respiratory therapy Dept. which has a stellar record for this. Once the trache is out, they can work on his swallow and get him eating again.

I would appreciate if you could keep him in your prayers and send positive thoughts. He has a long road ahead, but finally, after 13 weeks, I can see light at the end of the tunnel.

Edited by QH_LUV_R

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What a wonderful update! This is so heartening to hear of the progress that's been made. I know it's been a long road for you both but rounding that corner with Paul discovering he can catch his breath on his own does appear to be a pivotal moment in his recovery. YAY!

*continued thoughts/prayers*

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Just a short update.

We had an amazing day with Paul. Best day he's had in 5 months. He was able to sit in a chair almost 8 hrs. And he wore the valve on his trache that allows him to talk the entire time. He's never tolerated it for more than a few minutes without asking for his O2 to be increased.

His lungs are functioning perfectly for the first time since transplant. His humor is back too! He's obviously been saving all his nurse humor and I pity them now that he has a voice!

He is set to go to rehab about mid week and I see him making excellent progress, now that his lungs are working.

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Thanks ya'll, he continues to improve and get stronger everyday.

However, someone from the rehab hospital came today and told him he won't be transferred there until next week. Not very happy about this and Paul wasn't clear on the reason it's been postponed.

I will be asking his Dr. In the morning.

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Paul has been in rehab now for two weeks. He's doing great, no infections or rejection. Best news is, his kidneys are working again. He had dialysis once when he got there but the move to rehab and all the movement he's getting in PT, OT and Resp. therapy seemed to have kick started the kidneys.

I expect him to be coming home within the next week...two at the latest. We are so excited about this new time in our lives. I can't wait to start planning our vacation trips.

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That's great, QH, just great, you must be walking on air!

It's been a long, hard journey but, I think you're in the homestretch....... this is where we all do the dance of joy!!

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Wow! Sounds like things are traveling in a great direction for you guys. Lots of well wishes for things to keep going well and moving forward!

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