DH had OHS today

[mustlovepoodles]

DH had mitral valve replacement this afternoon. It was supposed to be done late July or August but he got much worse over the weekend. He is in the special heart surgery CCU and has a 1:1 nurse tonight. DH is heavily sedated on propofal. We've been up at the hospital since Wednesday and I'm exhausted so the nurse sent me home. DHs sister is staying the night. I'll go back up tomorrow, hopefully with more than 4 hours sleep. My adult kids have not seen their dad yet (he just got out of OR at 7pm) but they'll be up there tomorrow. I already warned them about the vent, the chest tubes and the million IV lines.

DH has stage 4 pulmonary fibrosis, so this is going to be a long haul. The surgeon is more worried about the lungs than the heart, since DH has been so sick for so long. But I have hope that DH will be a fighter.

 

[Soccermom]

I will keep him in my thoughts & prayers.

 

[Blair]

Prayers for all three of you. Hope you got some much needed rest.

You know the heart itself heals amazingly fast. He sounds like a fighter (and a stubborn one, which is probably good). Soon y'all will be able to focus on just his lungs.

I'm in Georgia too. Had mitral repair five weeks ago. Will be looking for your posts.

 

[cldlhd]

i'll be keeping a good thought

 

[mustlovepoodles]

DH has had a rough day. He came off the vent this morning. He is eating a very little bit and drinking well. DH has had a LOT of pain today. He says the pain meds don't help, they just make him sleepy. From my observation, it does seem like he gets at least some pain relief, but not for very long.

We both have been a little frustrated today. They told DH he would get out of bed and sit in the chair. They didn't say how long. Well, it's been 3 hours and they still won't let him go back to bed. The nurse just came by and said, "Oh, this is normal. He should have walked at least 3 times today." Seriously? Don't you think you should have shared that with us 3hrs and 5 min ago? They have not been very forthcoming with information. The nurse just dropped off a booklet with information for me to read--nowhere does it say you have to sit up for hours and walk 3 times in the first 24 hours. I just would appreciate if they'd just be honest with us. Tell us what to expect. (Don't worry, we just had a throwdown in here...)

 

[Jkm7]

Actually, walking is the single best thing you can do for yourself while healing from heart surgery. It makes a huge difference.
If they are worried about his lungs and breathing, being in the chair, while tiring and probably uncomfortable for him, could well help avoid pneumonia or other respiratory issues.


I walked the hallway with help from nurse and DH within 12 hours of my mitral valve replacement and I sincerely felt better the more I walked.
It builds back strength and the movement is so much better than just laying in bed.

ALL best wishes your DH heals well and has a great recovery.
Please keep us posted how he and You are doing.

 

[Mentu]

Let me add my second! However, uncomfortable sitting up and walking may be they make a great difference, especially, early in recovery. Walking, sitting upright and using the incentive spirometer will help restore lung function. In your husband's case, this would seem to be of even higher priority. It can be uncomfortable when we just want to go back to bed but it will help him restore lung function. Remind him that the early days are the most difficult and that he should see positive changes soon.

Larry

 

[bluefields409]

Walking and breathing, walking and breathing. Seems like the hardest, but is the BEST way to make progress in recovery.

I remember first time up day one post op... nurse said go to your side. I said I can't, the next thing I knew, with assistance, I was on my side, then sitting then I was UP and then walking. Only time I said "I can't" but I could and did.

After that initial time, I preferred being up moving or sitting. The more I was out of bed, the sooner I could go home. Mindset was "productive pain" like when in labour. Perhaps not the best analogy to give to be shared with a man though

We can only share from our experiences and offer encouragement as you both deal with recovery.

Helen

 

[mustlovepoodles]

DH has a really rough night last night--poor pain management--but once the day shift nurse came in, she got him set up with some long overdue pain meds and got him moved to step-down. Blessed relief! I'm telling you, it is so much different there, so much calmer. They're every bit as pushy about the sitting up, breathing and walking, as they should be. But they're not top heavy with "attitude." DH has done so much better this afternoon. He almost fainted on his way to the bathroom this morning but they got him a walker so he's getting around more now. Breathing is still difficult, but the nurses and resp therapists are being firm with him. He is doing his spirometry and coughing pretty good for a guy with a fresh zipper. I think he will get there.

I was so angry with the nursing staff in the CCU and I really lost all trust in them, which is why I stayed with DH last night. It's just the opposite in step-down. They have included me as an equal on his treatment team. They have treated my husband with care, not babying him OR being his drill sergeant and he has responded well to their ministrations. I was going to stay up there tonight but after seeing how well DH has been cared for today, I felt comfortable with coming home for the night and he felt comfortable with me NOT being at the hospital.

 

[bluefields409]

Good to hear about the progress. Tough love, medically focused or not, can be a balancing act between firmness and sensitivity. In CCU there can be more emphasis on the tough as their goal of care has different focus.

Regarding pain management, it should never be compromised but I know it can sneak up when ya least expect it. Finding the right medication & dosage and person's tolerance can also be tricky.

 

[Superman]

Good to hear he's getting better care and making progess. Sometimes the ccu nurses can be tough, but (and this is just a guess), they aren't used to dealing with long term, concious people. People make progress and leave, or they are barely concious if they are long term. Not necessarily a "people person" position.

Where he is now, they are used to long stays and working with patients and families that are making progress.

Walking and breathing, another thumbs up here! Can't let fluid settle in the lungs, makes recovery very difficult. The challenge at home is going to be for him to keep it going on his own, and you to give him the motivation needed if he tries to get out of it.

Sournd like you're heading in the right direction. Keep us posted!

 

[mustlovepoodles]

Day 3...everything is better. Less pain, eating more. Got a shower, walking. He's still needing oxygen due to the severe lung disease, but I am very happy with his progress.

 

[Soccermom]

great to hear!

 

[Cacaco]

Mustlovepoodles, what part of Georgia are you in? I am in NW Georgia myself. I personally have recently joined the waiting room after getting a checkup following my dad needing aortic valve replacement.

 

[mustlovepoodles]

We're in Marietta. DH is at Kennestone Hospital. We have been very happy with the hospital, other than his CCU experience, and really that was just that one night, about 15 hours. This was our only bad experience dealing with Kennestone and we have both been patients there several times.

 

[Cacaco]

I am just up the road in Rome and work at the hospital that does heart surgery. I knew you had to be close when you said you were 500 miles from Savannah.

I hope your husband is still doing well. It is certainly an event for the entire family.

 

[mustlovepoodles]

Update!

DH is HOME. He was released this afternoon. They sent him home on oxygen and with a walker--he is pretty weak and breathless. He's doing well sitting in the recliner, except when he's doing laps in the house. He's only allowed to go upstairs twice a day and not allowed to be in the bed at all, other than at night. Pain control is still a big thing but not as bad as it was 2-3 days ago (they finally had to put him on MS-Contin, similar to Oxy-Contin, to break the cycle of pain.)

DS27 came over and Daddy-sat while I went to pick up prescriptions and get some low sodium food in the house. While he was there, he put together a shower chair for his dad and put a raised toilet seat in. Then he rolled up all the rugs so DH won't trip. Bless his heart, he can't cook and he's not a born nurturer, but he's doing his best to help. DD21 is in culinary school and just completed her Special Diets class where she learned about low sodium diets, allergen-free, low carb, etc. She' going to send me a bunch of the recipes she developed for low sodium. The interesting thing is, DH no longer likes beef. He says it just doesn't taste right. I think it's because he got a cow valve. Mooooo!

 

[Superman]

Congrats on being home! Keep walking and doing other recovery activities! The recliner was my best friend for about 4 - 6 weeks. Slept just fine in it.

Speaking to the beef aversion - it's funny the things OHS will do to you. I couldn't eat sugar for about 3 months after surgery. At all. Tasted gross. Teeth sensitivity was through to roof as well. Could not have anything too cold or too hot and had to switch to brushing with sensodyne. I must have bit down and locked on all the tubes they had going down my throat while I was out.

Between the teeth and the lack of sugar, I lost about 30 lbs during recovery - so that worked out okay I guess. Not to worry - I found most of it again later.

 

[Blair]

The best thing about OHS is coming home! Waking up in familiar surroundings is pure joy! All the old experiences are new again.

Superman, I'm having problems with sensitive teeth now also. It never occurred to me that it might be connected to the surgery - just thought it was a coincidence. Small price to pay anyway, since everything else is so good!

 

[mustlovepoodles]

I haven't heard DH say anything about tooth sensitivity. I'll have to ask.

Today is post-op day 11 and our 4th day home. DH did not feel well yesterday--breathless and fatigued. I finally had to just turn up his oxygen from 3L to 5L to bring him back to normal. I kept a good eye on him all day and nothing got worse, and maybe got just a little bit better and I was able to turn him down to 4L. DH got up today with the same feeling of shortness of breath and fatigue, so I called his surgeon's office. DH has no swelling in his hands or feet, he is still losing weight, and he's not coughing up anything. His heart rate has been normal or near-normal.

Here is the only thing I can think might have started all this-- Two days ago, DH had the fine idea that he would like to go for a ride in the car (well, actually, he wanted to go walking at the mall, but I squashed that idea!) So I walked him to the car and we went for a ride. He wanted to get some Chinese food, but I knew better than that! He's hardly eating anything, so I stopped by Wendy's and got him a Frosty. He ate some bites off my hamburger, but I'd be very surprised if he even got 400mg sodium in that much food. I'm keeping a pretty tight rein on his sodium and most days he doesn't even make it to 1000mg. Now, obviously, I will not be making Wendy's or any other fast food a regular thing around here. I don't know if the little bit of hamburger did it or if it was just the physical activity-- walking to the car, riding around, getting out for a Frosty, getting back in the car, riding around, walking back into the house. The whole trip probably took less than an hour.

The surgeon's nurse seems to think that this little trip has set all this off and I'm inclined to agree. I think DH has some high-flying ideas about what he is able to do. I'm all for getting some exercise but IMO he is just pushing it.

ETA: today, while he was resting in the recliner sucking down his 4L of oxygen per minute, DH had the BRILLIANT idea that he wants to take his sister camping...next week. Oy! What am I going to do with this man? :rolleyes2: