2 years ago yesterday I went in to replace a bum heart valve and met with quite an adventure.
3 hours after a very successful surgery, my heart rolled over and put kink my coronary artery. A very rare and completely unavoidable accident. Don't let that scare you - while you need to make sure you take care of things, the odds of something like that happening are truly a billion to 1. On April 7th they gave me 50% chance to survive and were putting me on ECMO.
4 months later I was home.
I'm doing fabulously and the journey back to everyday-mostly-normal has been uneventful in the health department.
I take a single baby aspirin before bed and that's it for medicine.
I like to live while sitting. Getting me up and moving around is a challenge - but then - I hear my heart beat when things are quiet and it reminds me I need to lose some weight.
My husband, David is thinking of writing a book about our adventures - could never compete with beloved Adam Pick, but his story is informative and has been really helpful for me while I advocate for my father who had a stroke recently.
I wake up feeling good and so very thankful every day (no bs here, every single morning), with my champion, David, by my side. Thanks again to him for keeping up with me, my journal and reaching out to you guys for support.
I am convinced your thoughts and prayers brought me back home.
106 Days of Hospital Life. Retrospective highlights.
Re-learning to sit up.
Re-learning roll over.
Re-learning to stand.
Re-learning to walk.
Constant companions: Ice Chips,Spoon & Yonker.
Heparin shots in the belly
Delcolax: Wow, that was fast!
Ever changing Nursing staff
Explaining history of events over and over and over.
Sponge baths: brrrrr
Tape glue everywhere
Vicky the wound care nurse: The BEST!
Ticket to Ride on Steam.
How can you ruin scrambled eggs?
puuhleeese shut off that alarm!
Day 86: First shower
Day 106: Home. The journey back to 'normal' began.
Today will be the 6th month anniversary of my heart valve surgery.
Here is an update:
One of my physical therapy goals is to walk on a treadmill so I can eventually go to and complete Cardio rehab. I started walking on the treadmill at physical therapy last week! I do PT 3 days a week in the morning. My stamina and endurance are pretty low. Cardio Rehab will improve this!
I'm walking on a quad-cane - which is slow but steady.
MRI (For the eyes) revealed no continuing vision loss, but is not expected to improve. They think that loss of blood flow to the brain was the cause.
My kidneys are functioning at 27%. While this may seem horrible, it WAS just 12% (just above dialysis) when I was discharged on the 21st of July. The kidney Dr feels this will be the peak of improvement. We are hoping some non-Western medicine may give me back some percentage points.
My right foot is wearing an AFO brace for the drop-foot and I still don't have any feeling in the foot except for nerve pain, which sucks. Also still numb in the left thigh. The Dr who did the nerve conduction study feels that the thigh numbness is permanent and guesses it was caused by the severing of that nerve during surgery. The drop-foot (right foot) is also likely a permanent feature (No nerves to enervate the muscle), but said to give it a year. Again, we hope non-Western medicine can improve this.
Gene Krantz: What have we got on the spacecraft that's good?
Sy Liebergot: errrm... I'll get back to you Gene.....
No more wounds! All healed finally.
I'm back to work full time (Since August 24th). Save for lots of on-going Dr. appointments which are finally tapering off.
I'm learning to drive by way of hand controls. I tried left-footed driving, but the left leg is still too weak to brake fast enough and the right leg is a wash out. While driving around with hand controls is a mind blow - my Occupational therapist seems to have a lot of confidence in me, explaining that I know how to drive, I just have to teach my brain to handle these controls. I panicked twice during the test drive and tried to punch the brake like I would normally, but was able to stop the car correctly with the braking hand control before it was too late. We get those installed in my car on the 14th. Extremely liberating!! And David won't have to haul me everywhere.
I don't seem to have any cognitive damage. Which is miraculous. I still don't know - what I don't know - and while I don't remember anything from April 6th to May 20th- that is just as well, frankly. With a few exceptions that whole 7 weeks is gone.
It's not gone for David; however.... I think he may have some on-going stress from the event. It's understandable - sudden, unexpected horrible events over and over......and now there are many demands on him and he's still got his hands full. But he's getting help.
He expressed concern about *my* having PTSD. When I was laying helpless in my hospital bed I thought often about what disasters would leave me to rot there. But that's just from living in California for 20 years and being so earthquake aware. I go through periods of being sad or angry, but mostly - I'm A-OK - looking to press forward.
I have come a long way since April the 7th and even farther since July the 21st.
I understand this was better posted as the events unfolded. I will do better.
The dialysis catheter is gone! They took it out this morning and I was a real baby about it, too. I held David's hand.
Hey! No complications - how refreshing!
Tomorrow the pic line gets removed, we load my new equipment in to the car, and I go home. I wonder if I can sleep without falling asleep to Law & Order?
Your prayers helped me get this far and I can't say enough about this site and it's educational, outlet, supportive aid. Thank you, thank you. More from the home front.
This is day 100 of hospital life. I spent Occupational therapy in the beautiful hospital garden picking bush beans and tomato's and herbs.
I got the word today that they will send me home on Tuesday. (The 21st) I have the same feeling I did when I moved to this facility, "But, I"m not ready...." but I guess they think I'm ready. Although home seems still a long way away, I am quite ready to be home. David will join me in therapy with me on Friday and we will learn how to get me up off the floor (should I fall) and how to get in to the car. There will be an in-home nurse who'll stop by as needed and an in home therapist to help me get used to my equipment at home (wheel chair, walker, bedside toilet....)
My groin wound is a spec and a band-aid. All healed. Not a miracle but dang close.
And although I don't want to jinx anything, my kidneys are showing signs of life and they are going to take out the dialysis catheter on Friday. This may be a miracle.
Robyn asked me to copy today's Facebook post:
Tomorrow will be day #90 since Robyn had her surgery and day 7 since transferring to the inpatient rehab unit.
What a journey it has been.
I don't know if "thriving" is a term used for people in hospitals, but Robyn is doing very well in this, her last, hospital location.
Robyn has a schedule each day. This alone makes such a difference. Instead of laying in a bed waiting to see who may come in, she sets her alarm, and knows what is going to happen and when. She does 3 or more hours of therapy each day. Part of her therapy is getting dressed, transferring to and from the wheel chair, eating in the group cafeteria area, taking a shower, standing and even walking within the parallel bars. She still needs various levels of help with most of these task.
They rate the amount of help needed in 25% increments. So for some tasks, she needs 75% help and for others she needs only 25% help. It is a big deal when the therapist upgrade her assist rating from full, to moderate to minimum to none.
Dialysis is continuing but she is skipping some scheduled appointments as her kidneys are starting to show signs of working.
The big wound on her left leg is just a small surface sore. The muscle that was removed will never grow back so it will take a while to build up the remaining muscles in the leg to compensate.
The wound on her right foot, and the drop foot issue is still a problem. Being the last thing to heal has moved it into the #1 spot of frustration. But something had to be the last thing to get better.
Moving out of here is still evaluated every day. But we think she only has about 2 weeks left before she gets sent home. She will still have therapy; both in home and out-patient, and she will still have a lot of work and rebuilding of her body to do. But just as the move here has made such a difference, coming home will bring an exponential improvement.
We are having a 4th of July slumber party and making a list of places to eat at once Robyn is able to get around. The last day at the hospital includes a 4 hour training session for us both doing transfers in and out of the car. Based on the list of places Robyn wants to go to, we will be using those skills often.
I've been only a fair weather visitor to the site that last few days
I have landed at the new facility and already I'm a busy bee. This is definitely a step up in rehab. We started at 7:30 this morning with transferring to wheel chair, getting dressed and washed up and them moving to the gym. THey gym area is very close to my room so I hear therapists working with the other patients. There are only about 13 of us in rehab right now.
NOt a lot of laying around time what with meals and rehab. I am finally back in bed at 2pm after a full morning. I have occupational and physical therapies.
Occupational involves pulling pony beads out of a big glob of silly putty and putting pegs in holes. Getting to the toilet (still a huge goal. )
Physical therapy has to do with strength, endurance, standing up, walking. Etc.
I took 3 steps today. I was helped by the therapist (David was there watching) and I do consider this some forward progress. I still have a ways to go.
The one thing I can do to pay David for his hard work is to kick butt at therapy and get home asap!!
we get to eat together in a common room. It has forced me to eat slowly and concentrate on not being sick. I hated the food so much at the last place i threw up a good portion of it. and was constantly nau-shuss! I think the problem my finally be behind me as I've enjoyed the last meals quite a bit.
So. Here's to taking a little rest now.
to be continued ................
Oh, and I will try to take my first shower tomorrow. Complete with washing my hair. !!!
Looks like I'm graduating to a new facility for a more intense rehab. Same hospital setting with dialysis and wound care - but the focus is on rehab and getting my body bits back to functioning. I'm excited enough to have not gotten any sleep last night - but I'm also a little anxious about my readiness. Two things are for sure. I can't lay around here much longer and I really would love to go home.
And...... who's going to wash my hair? ...To be continued.
For those of you with surgery tomorrow. The worst part of your journey is almost over! Wishing you the best and praying for your peace of mind and your fast recovery. We look forward to your posts. God Bless.
I've been on edge all day. I only just started to calm down. I've been unyielding and impatient. The list of needs seems daunting. Full of tears today. I am appreciating the site today for a place to vent.
ON the positive side; I AM making progress.
My wound is much smaller. Still needs the wound vac, but it's actually healing.
I'm no longer just two arms with a head. I'm getting stronger. I can almost roll over by myself. I can sit on the edge of the bed - and get there by myself.
David continues to rest and to also be a rock and advocate. But some days - like today - it just isn't happening fast enough. I feel the burden I am to my husband and see the time I still need before I can go home.
On Tuesday of last week I saw a therapist - like before surgery, I needed some tools to help me cope and keep a positive attitude. He said "When frustration mounts, take a breath and try let it go. Breathe the food of the angels and the love of Jesus Christ."
I just need to continue to practice that.
Thanks, again and again, for the continued prayers and good wishes.
I'm having trouble clearing out the "unread messages" tally at the top right of the web page. The number next to the read heart (when you are logged in.)
I'm missing something ? - does anyone know how to do that?
My last memory was the doctors preparing to put in my IV's. Then a few psycho episodes - my cousin visiting....but I was unaware a of time passing. The last few months hold only a few memories.
I have not read Davids entries.
To be honest, some of the details frighten me and I am not ready to hear a lot about the details.
David worked feverishly on this journal for us. I am still amazed at the detail he recorded. I do look forward to reading it soon.
Regarding the experience in a nutshell:
I've got a large mountain of rehab ahead.
Things just move too slowly.
On the positive side:
I never had sternum pain / or trouble with my scar. (other than drainage holes - its mostly healed)
My new valve is working like a champ.
I discovered there are true Heros. (David)
I never thought anyone could love me the way David does. I am so incredibly fortunate.
Now that I am awake, David is busier than ever. He's got 100% of the household and me. I am keeping him hopping and he is just too busy to post - besides - other than rehab, I seem to be on the mend.
David - Thank you, I love you.
For now I'll be looking forward to melding back into the population at large with my heart brothers and sisters. I know I have many people to connect with and thank.
I'd like to thank Adam Pick for creating this site - for one, right?
To Pre-OPs Chris, Larry, & Donna;. know there are many folks, including me, sending prayers and good wishes to you.
Well Robyn is getting better at working on the laptop. I am going to stop on my posting and let Robyn take over. It is her journal after all. I was just filling in until she was well enough to return.
She has not gone back to read everything I posted yet; that is something she will do later. So she has not seen all of your post but she will get to them and reply in time when she is ready to read through all the details of her ordeal.
I want to thank everyone for all of your support. Your kind words, advice, prayers, letters, packages, presents, and encouragement made this journey possible. I really needed all of your help to get through this.
Robyn started on this site, her first step into the social media world, as a leap of faith. She was looking for advice and to learn from others who have been through OHS. I don't think she realized, and I certainly did not know, that she (we) would become part of this wonderful community of heart brothers and sisters. You all have been amazing and I hope we will have a chance to meet some of you someday. And at the very least, we will continue to follow everyone here and look forward to giving back to this community that has given so much to us.
Robyn did not quite get her shower but she did get her hair washed. After PT we got into the wheelchair. She did some cruising about and then the OT (occupational therapy) team came in and set up a trash can behind the chair and Robyn leaned her head back and they used a cup to pour water over her head. She had to help with the soaping and rubbing and the towel drying as this was officially an OT work out. Then a combing and a french braid finished it off. She was quite happy.
Tomorrow we have a meeting regarding timeline and goals. The biggest issues are wound care and dialysis. There may be a transfer to another type of facility for additional PT and OT prior to coming home. We will know more tomorrow.
Robyn also looked at Facebook some today and read just the comments from the past two days. She said she had know idea so many people would be "liking" and posting about her. Wait until she reads more. I have read and shown her some post in the past but she really does not remember much from more than about a week ago.
I am going to bring her laptop in tomorrow and she is going to give that a try. She did do some typing but is was hard to stay on the home keys so she did not stick with it too much. Her voice is getting strong enough for short phone calls and voice to text on the phone; but correcting the text is a challenge so far.
9PM Tuesday 6/2
No more feeding tube.
The tube has been removed and Robyn could not be happier. Well, she could be happier but she will take this small victory for today.
Each day she now spends two hours in the chair at the end of PT. But tomorrow we are moving her to a wheel chair and I get to tour her about the facility and outside. I just hope she does not push me to make a break for home.
But that is not all. On Thursday we are wheeling into the shower room for a real shower.
So lots happening and steady progress.
Robyn had PT and they got her to stand (with assistance) and then sit in a chair. While sitting the occupational therapy folks came in and did some coordination work like changing her shirt and washing up. From now on she will get at least 2 hours in a chair each day.
Then wound care and the nutritionist came by.
Robyn is now drinking the liquid used in the tube feed as a between meal snack. Assuming she can get 8 oz of it in, she will get the feeding tube removed in the morning.
Speech and swallow cleared her to drink water (which means no more nectar and thickened drinks).
Then an afternoon dialysis treatment and on to an early bedtime. If her electrolytes and mineral counts continue to improve, the dialysis will taper off and hopefully stop soon.
And I went into work for a few hours and actually got a good 15 minutes of work accomplished in that time. Hopefully my focus and cognitive abilities will return soon too.
Robyn had some visitors, ate real food, did the in-the-bed exercises and has come to the conclusion that she is ready to do the follow:
Get out of the bed
Get rid of the feeding tube
Have some private time in a bathroom
Take a real bath (by herself with a tub and water, not a chemically saturated cloth rubbed about by health care professionals)
And come home
It all sounds like good ideas to me too.
There will be a full team meeting on Wednesday to discuss her case and set up the full treatment plan with goals and milestones. Personally. I think the feeding tub will be out in a day and dialysis will wrap up this week.
We both are looking forward to seeing how fast she gets her strength back and when they think she will be able to come home. There will still be some in-home and out patient physical therapy after that but getting home is the big goal we are looking forward to right now.
I brought over a TV and DVD player so we could watch some movies and shows. Robyn did her assigned in-the-bed exercises and tried to figure out this new thing called eating real food. Her tummy needed to do some sorting out and getting use to eating again. But I think by dinner we got the right set of medications in place so she can start getting more of her calories by mouth and not the tube.
We are having a slumber party tonight and I am looking forward to spending the night with my wife even if I am on a fold out chair/bench/bed thing off to the side.
3:30 PM Thursday 5/28
Busy day in the LTAC.
We have been visited by everyone and moved to a new room. Robyn has been seen by Physical Therapy, Occupational Therapy, Speech and swallow, a dietician, infectious disease, wound care, and the occasional nurse.
Everyone is developing baselines and plans. We still do not know exactly how each day will go but we should have a better idea soon.
Most people need to work with her around dialysis which is M, W, F. But we hope she can stop that; as soon as her kidneys get a little stronger. We are finished with antibiotics for now. If her white cell count stays down, then we are clear of infectious diseases. And her leg wound continues to slowly get smaller.
Still no idea how long we will be here but she is doing very well for someone who has been in bed for 51 days.
Thank you everyone for all of your support. Robyn's concentration is getting better and she will be able to read all of your posts soon. I can't wait for her to see all of your support and messages.
Robyn says "Hi" on her last day in the hospital before the move to LTAC.
Maybe moving tomorrow
Journal posted on May 26, 2015
3PM Tuesday 5/26
As I suspected, insurance could not get everything processed in time for a move today.
But we had some PT and more pureed food.
Hopefully early tomorrow for a ride OTP (outside the perimeter).
Started the day with Dialysis.
Then Speech and swallow. Robyn will be enjoying a dinner of fine pureed food tonight.
Next was wound care. Her leg wound is still healing well.
Then PT came by. After some leg lifts and foot flexing exercises, she did some sitting on the edge of the bed and some arm and torso movements. This about wore her out but it was good to see her up.
Then the Infectious Disease doctor came by. Her white blood count is just barely above normal. She has finished this course of antibiotics and they will look everything over tomorrow and decide if she needs another course or if she is finished with all of that.
I have asked everyone to make sure their notes are up to date and that they have their recommended treatments in her file. I want to make sure there is no confusion about treatment when we transfer to LTAC.
It is still looking like the plan is to make the move tomorrow. I think the only thing that might trip us up is getting insurance approval after the holiday week-end.
Doctor Brown, her heart surgeon and the doctor that is untimely in charge of her case, does rounds and office work tomorrow. So he will review everything and make the final decision.
I will let everyone know what happens next as soon as I know.
This is day 49; thanks for sharing this journey with us.
5PM Sunday, 5/24
Pretty slow day.
Still looking good for a Tuesday move back to the LTAC.
Robyn used the spoon and then drank from a cup to have some nectar and applesauce today. She is very much ready to start the rehab and get out of that bed. I am not sure how she is going to be able to wait another day and a half to get moving. I ask every Doctor that comes in to see if they can get PT to drop by. But I think everyone is off for the holiday.
Tomorrow we have wound care coming by, a dialysis treatment and hopefully a swallow test.
Otherwise, just hanging out and getting stronger and more tired of laying about.
Not much going on but everyone is saying that a Tuesday transfer is looking good.
Kidney Dr. is fine with it, Infectious Disease is happy with her white count and lack of growth in the cultures from around the lung and wound care is going to do a repack and exam on the leg on Monday. About the only thing that might slow us down is getting the insurance paperwork sorted because Monday is a holiday.
Robyn is so much stronger today than she was last Friday when we did the transfer. I am feeling very good about this one. But I am also quite willing to call for a re-evaluation if things look funny.
Hoping for a visit from PT and Speech/swallow tomorrow but otherwise not much on the schedule.
4PM Friday 5/22
I had no idea today would be like this.
As I was leaving last night they told me that Robyn is leaving the ICU and going upstairs to the cardiac recovery floor. This is where you typically go after two days in the ICU. But it was not clear when and it was thought to be in the morning.
I left Robyn her phone and the nurse said she would help Robyn call me if she got disorientated with the move. When I got up this morning I saw there was a text (the nurse sent it) saying Robyn moved around 1AM.
Then I got a call from a friend I had not talked to in years. It seems that Robyn called him and was talking a little crazy. I explained she was in the hospital and was a little disorientated and had meant to call me but hit the wrong number. I called and she answered and I told I would be right over. She had woke up in the new room and had no idea what was going on.
Yesterday and today Robyn has been having some gastrointestinal issues so she has needed a lot of nurse visits.
Then she got sent down for one more (last?) echo cardiogram. About as soon as we got back to the room, they wanted to take her to x-ray to look at her belly and make sure there was no blockage or anything causing her to be having the nausea and such. The x-ray came back clear so we are just treating with some meds.
Then PT came in and got her sitting up on the side of the bed. Next speech and swallow are coming by. In some of the confusion with moving last night, Robyn pulled out the feeding tube so maybe she can get cleared for food or maybe we need to put it back in for a while. Of course the gastro issues are making that all hard to sort out.
And now we are waiting to roll her off to dialysis. (now that she is not in ICU, she has to roll all around the hospital instead of everyone bringing portable equipment to her).
We had planned for a morning and afternoon visit thinking we would be in the ICU and a little stir crazy. But I had to cancel the guests as the day has been non-stop.
I was not at all packed and ready for all of this activity. I rushed out of the house to got to the hospital as soon as I could. So I did not get a chance to really pack up lunch and supplies. Typing this post is the first chance I have had to sit down all day.
But this is all good news and steps in the right direction. I think we are still tracking to move back to the LTAC early next week.
Started off with Dialysis and a visit from a friend. The PA from Infectious disease came by and so far the cultures from the fluid around her lungs is not growing anything. But they are not ready to rule out infection quite yet. So we are still on hold for a possible procedure to do a more thorough cleaning from around her left lung.
We also had an afternoon visit from some out of town friends who are here for a gaming convention.
The schedule got a little screwed up with PT showing up at the same time as dialysis. PT got bumped. If they can still get out this afternoon, the plan is to use some type of harness to help Robyn stand up and then get her to sit in a chair. I am picturing something like those baby jumper things. We shall see.
She is currently off all IV drips and she took her pills orally today.
I have not heard of a release date but I am hoping for Tuesday. Since Monday is a holiday, I do not think we will move then. This will give us more time to work on swallowing and to make sure her lungs are stable.
Looking for a quite evening and night.
Infectious Disease thinks that the fluid from around her lungs is infected. Cultures will be back tomorrow but preliminary results lead them to believe that the area needs to be cleaned out. This will require a surgery. Not a big deal, they make a small incision in her side and run a tool in there and a second incision for a camera. Then clean everything out so there is good fluid flow around the lungs. A drain tube is placed in and it drains for 3 days. Antibiotics will take care of the rest.
The infection has returned to her lungs but the cultures are still treatable with the same antibiotics as before. She also has infection in the bones of her neck. Antibiotics for that to.
We will keep doing dialysis in an attempt to support the kidneys which will be effected by all the antibiotics.
Her leg wound continues to heal well (infection still present but antibiotics...). Her ICU delirium is getting to be full time right now. She has not had much clarity for the past three days. While this is normal (sleep deprivation, trauma, noises, lack of day and night and on and on.) and it normally clears up after a day or so; or at least within two weeks, it is hard seeing her so confused and distraught.
To help this I have music playing during the day (she sometimes sings along) and visitors lined up each day. She gets so much better when someone new comes in the room.
Not sure on time line for surgery or release to LTAC. I suspect surgery is any day and LTAC could be next week. I will make sure she gets transferred early in the week. The Friday transfer was a bad deal; she ended up spending the week-end laying in bed with minimal help and lacking evaluations and treatment plans for PT and speech and swallow.
4:30PM Tuesday 5/19
The doctors drained 600ml from around her left lung. It looked like old fluid, probably been there a while. Her lung looks good and open at the bottom.
The tube came out at 4PM.
She is resting now and her stats all look good. Hopefully an easy restful night.
11:30 AM Tuesday 5/19
Robyn is still stable.
Another round of HD dialysis today. She is very awake but with the tube in her mouth she really can not communicate very well. She thinks she can write but nothing legible comes out. She does know sign language and she thinks she is spelling things but it does not quite make sense. It is hard to judge someone lucidity when they have a tube in their mouth and some sedatives in their system. So I am not sure what she wants to say but it seems that she is not in distress and we tell her she just needs to wait awhile until we get the tube out.
The LATC never sent over her CT scan films yesterday. We called this morning and they had put them in the regular mail. So I drove out there and picked up a CD copy and brought it back for the team to review. Once they have looked we will hopefully know if there is a need to do something or not. X-rays do not show anything as dramatic as the LTAC doctor indicated in his notes. But that is why the Piedmont doctors want to see the scans.
Unless she is going to need surgery, and the tube in for that, we will start to see if it can be removed in the next hour or so. Since she was breathing fine with good O2 levels on Sunday, I suspect it will come out soon.
Still lots of questions but I do not think she is in danger. My hope is that early next week we can have her stable and strong enough to leave the ICU for the last time. Yesterday was the 6 week mark in this journey. Thanks for following along and for all of the support.
We have Robyn back in the ICU with her old team. Still assessing but she is stable and safe and will be that much stronger when she returns to rehab.
Even when she was seeing things and confused, she kept saying "I need to get motivated. I need to get up. I need to get going." She really is ready for rehab and getting on with recovery.
11:30 PM Sunday 5/17
I hate being right.
I had a bit of a freak out at 6Pm and wanted Doctors to come look at Robyn and get some intervention. I said "if we do not do something, she will not make it through the night". They came and did a blood gas, put her back on the cpap type thing and told me she was fine.
The night doctor came on duty along with the night charge nurse who is an ICU nurse. They both agreed she needs to go to ICU at Piedmont again.
Her lung is not doing well and she needs a ventilator and to be in surgery sooner then later.
Please say a pray for a safe trip and great doctors and nurses tonight.
I will let everyone know more later.
Lots of activity with multiple doctors and specialties.
Journal posted on May 17, 2015
9AM Sunday 5/17
The ICU did an amazing job of saving Robyn's life multiple times and bringing her to stability. Now we are working on getting her back into the world. She is getting examinations and treatments that where outside the purview of the ICU.
She is using an mask device at night, like a cpap, to help her lung capacity and to better clear CO2 which is part of what is messing with her perceptions. She is also getting breathing treatments and her supplemental oxygen needs are declining. She still has fluid build up around her left lung. This has been an on going problem and dialysis helps but we are going to drain that area which means a trip to the hospital but it is not a particularly scary procedure.
She had the first scan of her brain. While I have always been confident, the results did not show any issues.
They also scanned the leg wound and it is still looking good. Her white blood cell count has dropped on its own.
Neurologist are starting to look at her right foot and will work with PT to see how to address that. I also raised a question about the Lyrica that they started her on for nerve pain. It is a very nasty drug with a ton of side effects that can really screw with your head. Robyn does not do well with altered states and I was concerned that this medication was contributing to her mental confusion. The primary doctor and the neurologist were both very open to discontinuing it. I am nervous about challenging a doctor on treatment choice; I am very much not a doctor and have to trust that they know what they are doing. But I am an expert on Robyn and no one at this point knows more about her medical condition then I do. So I am glad they were open to listening to my concerns and reasoning.
HD dialysis will continue until her kidneys fully recover. She is also still being treated by infectious disease and I am waiting to hear more about their plan. PT starts their work on Monday.
All these doctors and all these plans are keeping me busy with documentation and research. PT should take her for 3 hours a day and I will use that time to go into work and try to get some level of familiarity and normality in my life. There are so many things I cannot bring myself to do because they all involve Robyn. We do nearly everything together so going some place or doing something without her kind of freaks me out. But work is the one place I go to without Robyn so I am hoping it will not feel weird.
6PM Saturday 5/16
Not the best of days. Robyn is very disorientated. While that is to be expected, they ran some blood gas test and are going to do a CT scan today or tomorrow. Her CO2 levels are elevated which could contribute to the confusion and lethargy she is having. Her white blood cell count is also trending up so the CT scan will include her wound to see how that looks.
it is all a little hard; still doing the two steps forward, one step back shuffle. And now there is a whole new team and they need to get up to speed and I need to get comfortable with them.
I am working on updating and cleaning my notes for the past 12 days so I can give the most accurate and concise answers. It also helps me to be able to look back and have objective and quantifiable data. For instance, I did not realize that it was only 3 days ago that she had the really weak and sleepy day. I thought it had been much longer. It makes me calmer seeing a pattern and not an anomaly.
One thing that is promising, even in her confused state one of her most common request is to get up and walk around. And that is what we are going to start working on come Monday.
4:30PM Friday 5/15
We are all settled in at the LTAC facility.
Started out the day with lots of farewells and well wishes from the ICU staff. The surgeon that worked on her leg said it looks good and infectious disease said she only needs one more week of antibiotics because the infection is fading. These were the last big question marks coming out of the ICU.
Then Robyn had an ambulance ride over to her new digs at the Wellstar Windy Hill LTAC facility.
She got inspected and poked and prodded and documented and now she is getting some sleep.
It is kind of weird not having all of the nurses around and having a solid door you can close. It is also very quite. Robyn is sleeping very deeply and I am a little lost without monitors to watch and a constant flow of nurses to interact with. But is is all good.
The plan is for a pretty slow week-end that features practicing eating. Then on Monday they will start with physical and speech therapy evaluations and creating a plan for working with her.
It has been a long 39 days. I am glad we are finally at this point.
Thanks to everyone for your help and support.
2:00PM Thursday 5/14
It is confirmed. Transport will pick Robyn up at 10:30 AM on Friday, 5/15 to move her to a long term acute care (LTAC) facility.
She will start the morning with HD dialysis, then her vac pack wound will get dressed for transport. They will use an ambulance service to move her with full support.
When she arrives they will re-pack her leg wound and get her settled into her new room. The rest of the day will be meeting the new team and evaluations. Maybe some work over the week-end and then she will start the rehab in earnest on Monday.
The timeline and milestones will be developed over the next few days. These facilities are very big on goals and having dates associated with them. The only thing I know is that antibiotic treatment to cure the infectious disease will last for at least 3 more weeks and that is one of the things that will keep her in the LTAC.
It has been a long road and there is still a lot more ahead. But this next stretch should be a whole lot smoother.
Thank you everyone for all of your support, kindness, prayers and help over the past 38 days.
I will update tomorrow once we are settled in later in the day.
10:30Am Thursday 5/14
So far so good.
Robyn was very much herself this morning. A good night of sleep and calories made a huge difference.
Even though she has the nose tube, we gave her a full breakfast. She used the spoon and gave herself some of the eggs. And she ate about 25% which is quite good.
Insurance has cleared her for transfer to the LTAC. Insurance can actually be a bigger barrier then the medical issues. So this is great news.
Although it is not totally cleared, she MAY be transferring to LTAC tomorrow at 10:30AM. As soon as I hear for sure, I will post an update.
7PM Wed. 5/13
We have to supplement Robyn's real food with some tube feeding. She was not getting enough calories and she got really sleepy and lethargic today. We can continue to practice eating while using the tube for back up. Since she was not scheduled to start eating for a few more week anyway, we are still ahead of the game. I do need to see if this causes any issues with the LTAC's. I think most (all) want a peg in the belly and not a tube in the nose.
Speaking of LTAC, I followed up with everyone: Piedmont patient rep, the LTAC rep and insurance case worker. And good thing I did. there was some "crossed wires" I was told and the information did not reach the insurance person who is going to be out of the office for the next 5 days. Had I not followed up, we would have had a real problem moving forward with a possible discharge coming up.
I do respect everyone's jobs and duties, and I am careful not to gum up the works by calling directly on my own, but nobody is as invested in this as I am. As Reagan said: Trust but Verify.
I hope to have an answer tomorrow regarding when we move on to the next phase.
I did get some cards and a care package from some of Robyn's (our) heart sisters. Thank you so much for reaching out. I showed them all to Robyn and read the cards for her. She was very happy to see them.
7PM Tuesday 5/12
We had a good meeting this morning with representatives of Robyn's care team. One of them even saved my agenda; in case she ever had a loved one in the hospital, she could use it to organize her meetings too.
Robyn did good enough on her swallow test that she is cleared for real (well, pureed versions of) food. Hopefully she can get up the strength to get enough calories and avoid a temporary tube going back in.
Wound care came in and changed out the vac pack dressing and the surgeon was happy with how the graft is looking.
PT got her up in the chair and did some in bed work with her too.
After hearing from all of the team, she is cleared for release by all but wound care and infectious disease. But they both feel she will be ready to transfer to the rehab location as soon as Friday or by Monday.
I ran up to work today to take care of some year end items. It was the first time I have been on the expressway, or gone over 45 mph, in 36 day. It was a little disconcerting.
Tomorrow I will check out one more rehab facility, but only as a back up. I have made my first selection and they are starting the process of getting the insurance stuff cleared. They are also on the same computer software system as Piedmont Hospital so file transfers should be easy and complete. I am feeling really good about the facility.
All and all a good, productive and healing day.
7:30PM Monday 5/11
Robyn really did good with the speech and swallow nurse. They are going to do another camera monitored test tomorrow. If she does well she will get real food and not need a peg in her belly for feeding.
The kidney doctor also said she is stable enough for transfer to a LTAC facility, as far as he is concerned. That means we need clearance from wound care and infectious disease next.
I am holding a meeting tomorrow morning with her care staff. Since she is getting better, she is getting less nurse care/attention and things are slipping a little. She has a chart that is 35 days long and no one can possibly review everything so some things are getting missed. I need to refocus everyone to push through and get her well enough to release. I hope to get home early to work on the agenda and get ready for that.
I am also starting site visits to three possible rehab facilities. They all really want Robyn to come and are courting her hard. I wonder if they do signing bonuses?
10AM Sunday 5/10
A pretty good morning so far. The out of town visitors all stopped by for a brief farewell. I hope to let Robyn have the afternoon to sleep and I will catch up on some "other life" things.
But the best things was a visit by the vascular surgeon. I found him a bit crusty and lacking in bedside manor in our other interactions. I really only care if he is a good surgeon but he has freaked me out a few times with his "worst first" technique. But today he looked Robyn over and said she is going to need a lot of rehab but he is unconcerned. I said "so our big concern is infection in the wound?" And he actually said he thinks it is going to be fine and the pulses are all good and it will just take time for the wound to heal and fill in. I think I just took my first deep breath in days. I even told the nurses what he said and they were quite shocked to hear he was positive and encouraging.
So I look forward to getting stuff done today without this sense of doom hanging over me and tomorrow I will tour some rehab places.
I may not post tonight, unless something comes up.
Please enjoy your day and think about all the mom's in your life and wish them a Happy Mother's Day.
I missed getting my Saturday updates in the Journal. Sorry about that. Here they are:
11AM Saturday 5/9
Robyn's night went pretty well. The next two days will be about healing and keeping up with her speech and swallow therapy and some arm movements.
In two days we will get back the cultures from inside her leg wound and that will give us some much needed information. In my mind, having been under the care of Infectious Disease and on antibiotics for the past three weeks, along with no fever and nearly normal white blood cell count, means she should not have any terrible infection. But every one is just waiting to hear for sure.
We have a full slate of visitors lined up for today. So stimulation will not be an issue.
I am also trying my hand as a beautician. Some nail trimming, hair combing and de-matting, and lotion and rubbing. If she looks good, she will feel good.
Thanks for everyone's support yesterday.
11PM Saturday 5/9
Had a busy day and evening so a little late to update.
Not anything too eventful. Dialysis, removing her A-line in the arm and switching to a cuff to measure her blood pressure, and then they gave her a picc. This is an IV location on the inside of her upper arm. Then the nurse removied the IV point on her clavicle. This is apparently better to avoid infection but still provide access to meds if needed.
She also had lots of family visits: My sister and Aunt and Robyn's brother and father all came in for 2 visits each. By the end of the day she was quite tired.
And so am I. So off to bed.
Thanks to all.
10:15 PM Friday 5/8
Robyn is out of surgery. It took longer then I expected but I had no real idea.
The results where as we hoped. They took a vein from her right leg and used it to repair the left side where they plastic tube was removed. Then a section of muscle created a flap to cover the exposed artery. And finally a vac pack dressing goes over the wound. It will need to heal from the inside out.
She will need to be still for 48 hours and remain in the ICU for another 7 to 10 days. Still risks of infection and stuff, but all in all, the best possible outcome for this surgery.
Thanks for all of your thoughts and prays and positive energy. It was an exhausting surgery and Robyn and the doctors and nurses needed all the help they could get.
10AM Friday 5/8
And easy night for Robyn.
Today we are just hanging out waiting for her surgery scheduled for 4:30PM.
I ran into Dr. Brown again and he again reassured me that he thinks this will go fine today. It will be a long'ish healing and recovery time because the wound is in a tricky location as anyway she moves that leg, it will engage that wound area and it is in the natural fold of where the leg meets the front groin. But all of the long term acute care places I am interviewing are set up to handle this type of wound and can adjust her physical therapy to accommodate it.
My only real concern is how long she might have to be on the tube and ventilator after surgery. But I am happy that is my biggest concern.
I will post again after the surgery but it may take me a while as I want to be with her first. So do not be concerned if a few hours go by. No news will be good news for this one.
6PM Thur. 5/7
I met with the vascular surgeon today and have a little better idea of what to expect. The surgery is at 4:30 PM on Friday.
He is going to go into this surgical wound on the top of Robyn's right leg, in the front groin area. This was an entry point for the ECMO machine when it was supporting her heart.
Best case is he clears out some dead surface tissue and removes the Dacron tube that is typically left in place and then either fixes the artery or does a graft from a vein in her other leg. The wound then gets packed and it takes a long time to slowly heal but this is part of what she is going to a rehab center for.
He wanted me to know all the things that could go wrong: Death, amputation, gram-negative bacterial infections... Unfortunate he chose to lead off the conversation with those things last night so I was left reeling with the vision of Robyn being in a really hard place.
I went in to the hospital quite early and talked to some of the nurses and eventually her heart surgeon, Dr. Brown. While Dr. Brown agreed that all those things were possible, he did not see it going that way. Robyn has been under the care of the infectious disease team for weeks and she is now off of antibiotics and shows no indications of having an infection. Dr. Brown has seen her veins and arteries and knows that they are strong and healthy and should be able to be repaired. The vascular surgeon was not aware of these things when he spoke to me.
So there is still concern and this is still a full surgery in the OR, and she will have to be re-tubed, but nothing dramatic is expected to happen and if it is a bad situation, we will have a few days to address it.
Please think of Robyn tomorrow afternoon.