Since Jean has been back on her computer for quite a while, I haven't been posting updates but I did want to share the BIG news today....she's FINALLY back home!
What a terrific 30th Anniversary present for me!
It's been a long and rocky road....6 mos. 20 days....6 facilities....countless doctors, nurses, therapists and medications....but she's been a real trooper and never gave up.
She said she is feeling a little weak right now and she definitely has more physical therapy ahead but hopefully things will continue to improve from here. We are so proud of her and thankful that she's such a fighter.
I just spoke to her and she said Pat picked her up this afternoon after the hospital bed was delivered to the house. Melinda was there and they were cooking out to celebrate her homecoming.
Pat and Melinda have been truly amazing during this entire ordeal and have really taken extraordinary care of her. It's really hard to be 800 miles away and not able to pitch in as often as I would have liked, but I've always known they were there watching over her.
That's really all to report. Just wanted to let all of you know and again express our thanks for all the thoughts, cards, flowers, emails, and especially prayers that you've sent her way.
Just a quick update to let you know all is okay. I called Dr. Khan and he met me in Mom’s room about an hour ago. The pain in her legs that she is experiencing is related to the area healing. Shirley, her physical therapist had said it could be that just before he came over and said it was like a burn victim’s healing…as the new skin is rebuilding. This is the area that had blistered and erupted due to the excessive swelling.
Dr. Khan said he is having labs done every two days and her numbers are looking good. He is going to have them remove the catheter as they seem to have the diuretics stable. She will continue to have the IV but this is only used when pushing the prophylactic antibiotics. All other meds are given orally. In addition, the bruising is now going away and she is beginning to look like herself again.
While we were waiting for the doctor, Shirley came in to take her to physical therapy. When she found out that we were waiting for the doctor, she said that we could do PT in the room. Mom walked back and forth across the room, approx. 45 ft. then got into bed so the doctor could look at her leg. But she also did a lot of leg exercise while in bed.
She is getting much stronger everyday and with our continued prayers and Mom’s hard work, I’m sure she’ll be home soon.
I’ll be going back this evening after work but wanted to let you know about this morning.
Mom walked 20 feet yesterday and then rolled herself back in the chair. Creatin still high at 2.4 but should come down as they decrease the diuretics. Will probably transfer out on Monday. Kim the Director from Lifecare has been to visit 3 times and yesterday she said they have private room #234 on hold for her and they have an aggressive plan already charted for her. Dr. Khan (primary care physician) has been in everyday as well and said that when she transfers to LC they will be monitoring her VERY closely. Dr. Mao is off this weekend but Dr. Chen was in yesterday and will see her again today. I really like her too!
I just spoke to Mom and she had a good night sleep. Still sounds a little congested and short of breath but is in good spirits. She said they weighed her this a.m. but Dr. Mao told me the other day he wasn't confident in any of their weights.....he is concentrating on her numbers which are improving overall.
The infectious decease doctor came in yesterday and said her legs were fine but they are still giving her antibiotics to ward off pneumonia. She only had a couple of indicators but they didn't want to take any chances.
Melinda was off yesterday and spent the day with her.....gave me a chance to get back into the office to get some major catch up done.
That's about it for now. I am getting the yard work done this morning and then heading up to visit her.
Keep her in your prayers and that she will be home soon!
Unfortunately Mom wasn't as stabile as they thought when they transferred her to skilled nursing last week, so earlier this evening she was re-admitted to Medical Center Plano. Although she was on oral diuretics, apparently the dosage wasn't quite right and she started retaining fluids again and her creatin levels went up as well. They are hoping to have things under control in a few days.
We feel this is still due to the prior situation caused when Remington stopped giving her Lasic and we are praying that they can get this under control without further complications like dialysis.
Will keep you posted if there is anything new. Please keep Mom (and Pat) in your thoughts and prayers as they have both been put through the wringer both physically and emotionally during the almost 6 months since this ordeal began.
Well after a disappointing setback it looks like Mom is back on the road to recovery again. Late yesterday she was transferred to a skilled nursing center in the same general area which seems very nice and they were just rated one of the best nursing facilities in Texas. according to the March 2011 press release they consistently exceed national standards so we feel very good about the care she will receive. She's now at Lifecare Center of Plano, 3800 W. Park, Plano..
She has already been up to the bathroom several times using her walker and the PT dept has taken her out for a walk this morning and said she did very well. We are waiting for kplunch now and then she will have more PT this afternoon. Pat and I have an assessment meeting with them tomorrow to discuss her goals and objectives for the near and long term so hopefully we will have a better idea of when she might expect to come home again.
Medically she is free of all the IVs and catheter and back to oral meds so that is a blessing. Wre hoping this incident has just been a bump tin the road that tpshe can quickly overcome.
Will keep you posted when there is more news. Thanks as always for the good wishes
Nothing much has changed although the fluids are still coming off rapidly, which is good. The kidney doctor expects her to be here on IV diuretics at least through the weekend so he can monitor her closely.
She was able to walk about 10 ft today but that is a far cry from where she was before this setback when she was walking 30-35 ft 3 times with just short rest breaks. She could also get in and out of bed with little or no assistance and now needs a lot of help.
She will probably go to skilled nursing from here but hopefully will regain her strength quickly and be able to get home pretty soon. Needless to say we are all disappointed with the situation and are looking into possibly taking action against the rehab facility for letting this happen to her. It was TOTALLY avoidable! Of course, we're extremely thankful that at least so far it does not appear that any permanent damage was done. Personally, every time they come and stick her I want to stick it to someone for causing this! With everything that she has faced and overcome it's hard to watch her go back to where she was many weeks ago. We don't think it will take as long for her to bounce back because of all the work she had been doing
Will keep you posted when we have more news. Hope you all have a nice weekend
Just arrived in Dallas this afternoon and stopped by for a quick visit with Mom. Things are okay but apparently for some unknown reason, the rehab center stopped giving her diruretics on 3/26 because the doctors orders had expired! No one thought to check with them before stopping a major medication for a heart patient? So basically this is their fault that she is back in the hospital...needless to say we are not happy and they have not heard the last of this. We are now hoping they can get the fluids off quickly and she can still come home as planned without having to Go back to rehab. The good news is that her kidneys seem to be functioning....the just need the medication to keep them on track. Should know more in a few more days
We thought that this update was going to be the good news that Mom was finally coming home from rehab and in fact, it was scheduled for Monday, April 11.
Then today, during the home assessment it became apparent that she was extremely short of breath and her hands and feet were swollen. Since both are signs that her fluids are backing up again, Pat contacted both her heart surgeon and kidney doctor. The kidney doctor said he wanted her taken to the hospital immediately so he could assess her properly, so Pat is coordinating the transfer this afternoon.
We won't know much until they run some tests and determine if this is a simple medication adjustment or something more serious, but we wanted to let all of you know that she may be off-line and not responding to emails. We will send an update when we have more info.
Please keep Mom in your prayers that this is easily resolved and it won't slow down the wonderful progress she has made.
Mom reports that PT is still going great. In addition to her normal weekday therapy, she also had PT on Saturday. Working on walker... she walked the length of the gym... twice! All in all, seems to be improving.
Pat reports that her room is coming along. All paneling, wall paper, carpet removed and texture on all walls. Bathroom door has been widened. They bought the flooring, paint and new ceiling fan this weekend. Worker is painting today.
Sounds like they better hurry....she may be coming home SOON!!!
Jan reporting from Dallas....have been here a week and Mom has really shown a lot of improvement even in the last 4-5 days. The main focus up until now has been transferring in and out of the wheelchair. You will recall that when she came her about 4 wks ago she couldn't really assist with any sort of physical movement. They were still using the easy lift to get her in and out of bed and she needed max assistance.
She can now transfer from bed to chair or chair to potty with minimal assistance! She is no longer using the bedpan at night but they get her up and to the bathroom once or twice as needed. This in itself is great PT and shows how far she has come.
We just returned from the gym where she did some standing and arm exercises and the walked the length of the parallel bars not once...not twice....but THREE times! Of course there were rest breaks in between but after several chair transfers and standing exercises right before, this was quite a workout for her. Then she still managed to do 15 mins. on the bike.
Other than a slight cough, she is feeling fine and doing well medically. They haven't discussed a release date yet but at this rate we don't think it will be much longer. In anticipation of her homecoming, Pat decided to redecorate her room so we packed up all her DVDs and VHS tapes along with the rest of her worldly possessions a couple of days ago. Then Pat, her husband and I cleared out all the furniture....they did most of the heavy lifting but I was there for moral support! The work begins on Wednesday with the paneling and wallpaper coming down, carpet coming up, hardwood floor being installed, fresh paint, new lighting and a wider bathroom door. A new larger desk and new furniture arrangement. It will be a whole new room waiting for her!
Last night Melinda, Adri! Mom and I watched the Oscars upstairs in the 3rd floor lounge on the large flat screen tv which was fun. We had the whole place to ourselves so we could make as much noise as we wanted.
That's all for now...I head back to Atlanta tomorrow. Hopefully the next update will be to tell you that Mom is coming home!
Wow! What a difference even a few days can make at this stage. Progress continues with much more emphasis on mobility, strength and endurance. Pat spent most of Saturday with Mom, doing OT/PT (2 hrs) and really seeing how wonderful Remington is going to be for her. Normally OT/PT is offered 6 days a week but if they have availability, they said they would come to get her on Sat & Sun if she wants....and we were ALL happy to hear that. Mom is becoming a real "gym rat" and willing to do as much as she can as fast as she can.
In addition to her new workout clothes, we are ordering her a swimsuit and cover-up (first one in YEARS!) so she'll be ready for the aqua-therapy pool whenever they're ready to start that phase.
Mom is REALLY getting the royal treatment. She can order what she wants for each meal and the time wants. And, when she has company, they can all go down to Remi's (the on-site restaurant) and enjoy ordering from a menu, linen tablecloths, etc. Pat and Melinda ate dinner with her last night (food very good).
Today, Pat arranged for Mom to visit the on-site salon for a REAL shampoo and haircut. And, she has a nail appointment for next week, too. Mom said it felt wonderful and it turned out really cute. Pat sent photos from yesterday and today which I'll post in a few minutes so you can see for yourself that she's feeling so much better every day.
Mom is finally getting back on-line more frequently, so I'm sure she'll begin responding to her own emails pretty soon. She's been trying to keep up with what's going on but has certainly missed all her gal-pals!
Just a quick note to let everyone know that Mom is quickly settling into her new routine at Remington. Check out the pic that Pat took of Mom on her way to OT this morning. A little blurry…Pat said she was moving too fast!
How do you like one of her new outfits? Pat went shopping for her with Christmas money from Jan & Chuck, (knowing that she would be needing workout clothes). First time she's had "real" clothes on in 2 1/2 months! She said she liked them and they’re comfortable.
Salil (Director of P/T) said she is on the schedule for 1 hour of Occupation Therapy (OT) in the morning and 1 hour of PT in the afternoon, so she should really start to regain her strength quickly. They will increase the rehab time as she continues to improve.
At this rate, we can all see her long hospital stay coming to an end and looking forward to the day when she's back at home!
Have a great weekend and stay warm all of you Eastern Berenger Babes!
Quick update....Mom was transferred to Remington Medical Resort in Richardson this afternoon and has quickly settled into Room 105. This place looks more like a 5-Star Resort hotel than a hospital... http://www.remingtonmedicalresorts.com/dallas/index.html
While the surroundings are beautiful and the location is very convenient for the family, the primary reason we selected it was for their state-of-the-art PT Department which includes expansive rehabilitation gyms and advanced therapy pools, complete with underwater treadmills and monitoring equipment. When Pat & I toured the facility, we met with the Director of Physical Therapy and we were very impressed with the team approach and weekly meetings to set goals, etc. We feel this will be the perfect place for Mom to rebuild her strength as quickly as possible so she will be able to return home.
Thanks again for all the lovely messages and good wishes. We are all grateful for all the love and support.
Well we had hoped that Mom would be moving over the weekend but it didn't happen. Everything should be in place for Monday or Tuesday latest.
Since there is no official PT here on the weekends, we've been doing some exercises with Mom when we're here just so she doesn't get so stiff just being in bed. We also encourage her to sit in the wheelchair as much as possible for better circulation. They removed her oxygen last night and she's maintaining good saturation (95-100%) even when exercising which is terrific. Another sign that she's medically so much better.
Sadly, I must return to Atlanta tomorrow but Mother says the visit has really helped her and it was great to be able to give Pat and Melinda a little break. She has made excellent progress in this one week so we are extremely optimistic that the next phase will go quickly with the total focus on PT.
I have posted a new photo of Jan, Mom and Pat from Saturday so you can see for yourself how much better she looks than a few short weeks ago.
Mom loves reading all your messages and words of encouragement. She was surprised to even see an entry from Adam Pick, author of the great book that provided so much guidance and support thru this journey as well as this Journal forum to keep you all updated.
Will continue to psot updates as things move forward.
Well, the news continues to get better each day, so all your prayers and ours are working! Looks like Mother will be moving to Remington Medical Resort as early as tomorrow! Her doctors say she is medically stable that they don't need to see her every day, she really just needs extensive rehab.
Remington came over today to assess her and they have a bed available so we asked that they transfer her ASAP (hopefully Saturday) so she can get started on her new PT schedule first thing Monday. Another advantage is that they have PT 6 days a week, which Mom was excited about. She knows the more she does, the faster she gets to go home.
Nothing else new to report for now but I wanted to let you know she's ready to accomplish another milestone.
This is Jan reporting from Dallas where I'm visiting with Mom for the first time since I left in November. Although she still has a long way to go with her rehab, her primary care doctor came in this morning and reported that her numbers seem to have finally stabilized. They also removed her Foley catheter yesterday, which is great news after 2 1/2 months. This is great news because it means she's well on the road to recovery!
Now, the primary goal is to concentrate on rehab and once she can tolerate 3 hrs. of PT per day, she can leave the Acute Care and move to rehab for the final phase of regaining her strength. She's doing about 1 hr. of PT now but one of the reasons I'm here this week is to go to PT with her and learn things that we can do with her when she's back in her room. Pat, Melinda and Steve can work with her when they visit at night or weekends so she keeps moving forward. The idea is the more she can do, the better. It's still hard for her to transfer from bed to the chair but hopefully that will get easier with more movement and practice.
Her PT changes daily, but basically they're working on standing with a walker, getting her balance back, walking with the parallel bars, arm cycling (7 mins.), upper arm strength (pushing down - 4 sets of 20), seated leg exercises (kicks, marching, side-to-side), etc. using 3 lbs of ankle weights. She is ready and willing to do everything they ask and knows that more is better and the fastest way to get home again.
Her appetite is good, her attitude is good (although weary from so many weeks in the hospital) and the staff here seems to be doing everything possible to get her well. They are very responsive to requests and actually seem to care about her comfort as well as her wellbeing.
That's about all there is to report for now. As always, thanks for the continued messages, prayers and good wishes. Mom is getting back on the computer and reading your emails and guest book entries....it's just hard for her to type so may not respond personally very often but she enjoys hearing what everyone is up to these days.
Things continue to go well at LifeCare, especially now that the holidays are over and routines are getting back to normal.
No new lab updates but No IV’s…has the port in her arm, just in case. They’re giving her meds by mouth now. She is still on the nasal cannula. The doctor is keeping a close eye on her fluid this week to try to get more off so the oxygen won’t be needed.
PT doing better – no longer using lift to get out of bed. She walked 10’ (length of parallel bars) the day before yesterday!
Pat requested that they get her up and in the chair for meals which they started yesterday. She got in the chair for breakfast …then right after came PT, which really got her tired. They decided to do get her out of bed to eat 2x a day for now until she builds up her strength. Pat spoke to the nurse last night and they are going to start with PT and then put her in the chair afterward so she can eat lunch and hopefully stay through dinner.
Basically, they’re trying to increase her movement but not too much at once. At least the doctors and nurses are listening and reading our notes. For example, a few days ago, Pat mentioned that Mom feels more stabile walking in her own slippers, rather than the hospital slipper socks. Now, they don’t even ask her about her slippers…they just put them on her before starting PT.
Pat won’t be going by today…Steve and Melinda will be visiting her this afternoon. Mom always enjoys her visits with them. She found out Melinda stopped by the other day and didn't wake her and she said ALWAYS wake me up!
Overall though…she is looking much better. She still has fluid but her legs, hands face are back to normal. That’s why Pat asked them to start getting her up so the fluid will be able to move down (at least to the bottom of her lungs) to help her breath better. Last night her breathing seemed to be much better too.
Jan will be in Dallas next week and we hope it will really help having someone there throughout the day…not just from a information standpoint but keeping her motivated and positive through all of this.
We still have a long road before she gets to come home but hopefully once she is able to get up and about herself, the recovery will go much faster.
First, thanks to everyone for all the New Year's Greetings. Hopefully, 2011 will be full of progress and hope that Mother will be able to return home soon. She still has a long road of rehab ahead but we remain optimistic that she will continue to improve daily from here on.
Due to the holidays, PT has been hit and miss, so progress has been slow again. Things should be back on track this week for DAILY PT and improved mobility... consistency is the key!
Labs are looking good with Creatinine (kidneys) holding at 1.4 and Platelets at 140! Much improved from a few weeks ago. Mom continues to have breathing difficulties but the x-rays don't show any fluid in or around the lungs (which is good) but we don't know exactly why she feels short of breath again. It's probably due to inactivity and not working enough with her Spirometer. The Respiratory Team is giving her a new type of breathing treatment to try to expand her lungs and improve function.
She had what appeared to be an infection on her leg at the other hospital which with a little TLC from the Wound Care Team has finally healed and is looking much better.
Mom's (and Pat's) overall spirits are much improved with the move to LifeCare so we anticipate that things will continue to move forward.
Also, the internet service is more reliable now, so Mom is able to sign on to read her email and guest book entries, however, it's still hard for her to type much. So, know that she's there staying up on things and thinking of all of you and wishing you all a healthy and happy New Year!
Just a quick update to let everyone know that the transfer went smoothly this afternoon and the prior hospital even PAID for the ambulance fee due to the problems. Probably figured it was less expensive than a lawsuit...
So far things are looking up at LifeCare and the staff actually seems to care, which is always a plus.
Will keep you posted in a few days after we have a chance to see how things are going and actually get a handle on her current status.
Hope everyone has a nice New Years and that 2011 will start off better than Mom's 2010 ended!
Sorry for the long delay since the last update but it's been pretty crazy for everyone during the holidays. We all hope that you've enjoyed some wonderful family time and are managing to stay warm, especially all of you in the NE.
The GOOD news is that Mom is doing much better and actually progressing pretty well with her PT. Pat reported that last week Mom was able to walk (with assistance) twice the length of the parallel bars! Quite an improvement from barely taking a few steps.
The BAD news is that none of us is happy with the care (or rather lack thereof) that she's been receiving since her move to Plano Specialty Hosp. She really likes the PT staff but other than that there's not too much good we can say about their quality of care. There have been numerous incidents from trivial to
potentially serious over the past 2 wks.
The most serious being them attempting to take BP in the arm with the clots, which is clearly marked NOT TO TOUCH for anything...BP, blood draws, etc. Mom wasn't really aware of the problem but fortunately Pat was there at the time and stopped them. The nurse looked really blank and said, "Oh, I didn't notice that." NOT A GOOD ANSWER!!!
We've also gone from being totally in touch with her condition to basically being in the dark as the nursing staff rarely gives us straight answers about even basic matters, like lab results. It's finally to the point that we've decided enough is enough and it's time to move for everyone's peace of mind...especailly Mom's!
The transfer will take place sometime tomorrow (Tues. Jan 28) to LifeCare Hospital in Plano. They were on the "short" list when Pat & I originally looked at LTACH facilities but they didn't have any rooms then. Pat has spoken with them again and they do have a room for her and agree that the incidents Pat described should not be tolerated. We hope that's an indication that their location will provide a higher level of service.
In addition to the PT Staff, Mother also likes the doctor who is also on staff at LifeCare, so we like the continuity of medical care aspect as well. The doctor was so upset about the lack of care and information that he gave Pat his private cell phone number so she can contact him directly should she feel the need to do so. He also told her that we would be happy with our decision to move her to LifeCare....that itself was confirmation that this is in Mom's best interest.
Jan will be heading back to Dallas for a week in mid-January and again in February to lend Mom & Pat a hand. Sure hard to be 800 miles away with so much going on, but that's the reality many families face.
We'll keep you all posted and hopefully the LifeCare internet will be more dependable and Mom will be back on-line soon. She misses all of her gal pals!
Nothing really notable for the past few days but Mom is doing pretty well and enjoyed watching the Cowboy game with Pat this afternoon. Pat and Melinda set her tree up in the new room. (see new photos just posted).
Unfortunately, the hospital internet has been down for a few days but at least she can play Monopoly and a few games she has on her laptop.
No PT on the weekends but they should be back at work Monday. Pat is off next week, so she's planning to spend more time at the hospital and work with her to see exactly what they're doing and how to help her exercise in her room.
Pat just called with today's update and things are looking pretty good today. Mom was up most of the day, sitting in a wheelchair and doing some PT. She was able to take a few steps on the PT parallel bars (not sure how much assistance she needed) but the point is that she is UP AND MOVING again! And, she really likes the PT staff, so that will help keep her motivated. She told Pat that it felt good to be moving... again another positive sign.
The Nephrologist said her kidney function was holding steady at 2.0 which is higher than they would like it but okay if it's leveling off. She still has a lot of fluid built up but hopefully physical exercise will help with that as well. Everything just works better when you're ambulatory.
Pat & Melinda stopped by again this evening and after her busy day Mother was so tired she fell asleep and didn't even wake when the doctor came in to check her.
Pat will be off work next week so will spend as much time as possible with Mom during the day, helping with PT and really getting a handle on how much she can actually do. Hopefully she will also learn some exercises that they can do in the room to get the most benefit from the PT as possible.
Mother has been receiving all your lovely cards and Pat is going to decorate her room with them to remind her of how much everyone loves her.
The new hospital is Plano Specialty and she's in Room 101. Here's the link if you need the address or want to check it out: http://www.specialtyhospital-plano.com/plano/index.aspx
After 6 wks since this little "adventure" began and a month since she entered Baylor Heart Hospital, we just found out that Mom is moving to Plano Specialty Hospital at 2:00 pm today! They've already ordered the ambulance for the transfer and Pat & Steve will be heading up there to pack her up and get her settled into her new room.
We were really surprised because we didn't realize that her numbers were consistent enough for the move. Apparently, since the critical numbers have been trending in the right direction, they feel she's ready. (Her last labs showed creatinine at 1.8 but her platelets were up to 129).
They did do the TEE Echocardiogram and cardioversion yesterday and we hoped that would get her back into a normal sinus rythmn, which it did until around 10:30 this morning. :-( The doctors are consulting now to determine if they will try additional measures or consider her in chronic a-fib from here on. Many people live with a-fib anyway, so the potential danger of more aggressive measures may outway the potential benefit at her age.
The really good news is that this move to acute care is one step closer to home as she will begin more intensive rehab, while still being closely monitoried. Her doctors will receive updated labs and keep an eye on everything there as well. Assuming she progresses well, the next step will be moving her to Remington Medical Resort for final rehab.
So, please keep those thoughts and prayers coming....they're working!!! Will keep you posted later tonight or tomorrow.
Oh, and HAPPY BIRTHDAY, MELINDA!!! Great present from Grandma Jean!
Sunday - Looking forward to the Cowboy game tonight!
Journal posted on December 12, 2010
The Nephrologist (Kidney doctor) came in earlier today and wasn’t very happy that Mom still had so much fluid accumulated. She ordered an ex-ray and then increased her diuretics and reinserted the catheter (to make it easier on Mom).
Platelets were at 100 this morning, down slightly from 101 yesterday.
Also, one of Dr. Ryan’s nurse practitioners came by and she said they will do the TEE Echo (if needed) at the same time of the Cardioverision so she will be sedated for both. They will do the procedure in her room…hopefully tomorrow morning since she won’t be able to eat anything after midnight today. She also said they use “pads” not “paddles” and the doctor might let me stay in the room. I let her know that it was just fine with me to wait in the lobby area.
I’m planning on being back at the hospital tomorrow morning by 8:00am and will stay until the cardioversion is done and she is awake.
Will update after the procedure if anything significant to report.
Mom's wonderful surgeon, Dr. Ryan, stopped in last night after Pat had left and responded to our questions. He agreed that she should be getting more PT and left those instructions on her chart. We know he has her best interest at heart and doing everything necessary to keep things moving forward.
Her platelet count was back to 101 today which is moving in the right direction and they've adjusted the diuretics again to reduce the edema and keep her stabile.
Pat and Melinda were there right after she had her bath and the PT was there helping her with leg exercises, which they said she was doing pretty much unassisted. They then got her up taking a few steps to the chair and she was going to enjoy sitting up for awhile. That's much more activity that she's had lately, which we take as a very good sign.
Dr. Ryan has ordered another echocardiogram for Monday and may cardio-vert (shock) her heart to see if they can get her out of A-fib. He's adjusted her meds to see if they can do it without the paddles but will make that decision on Monday. She will have to be sedated for the cardioversion if that's necessary but it's a pretty quick procedure. Our brother, Steve, has had it done several times when he was in chronic A-fib.
Sunday is usually a pretty slow day, so probably no news expected until early next week.
Thanks as always for the support and prayers...especially from those of you that don't even know our wonderful Mother. Your kind words of encouragement are greatly appreciated and we wish you all well as you continue on your journeys through this strange new world of medical miracles.
Just spoke to Pat, who has been a real trouper, stopping in to see Mom on her way to and from work every day. It really brightens up Mom's day and gives her something to look forward to. We are trying to keep her motivated and positive and Pat is really good at that. Pat's husband and our brother (Steve & Steve) both stopped by as well as Melinda, so she had lots of company today.
The other day, Pat & Melinda brought her a cute little pre-lit tree and decorated it for her room. It's sure no fun being in the hospital during the holidays. Since she's still not back on the computer, if any of you wish to send her a card, you can send it to:
Jean Reed, Room 219
The Heart Hospital Baylor Plano
1100 Allied Drive
Plano, TX 75093
1205 Oakhill Drive
Plano, TX 75075
As for the medical situation, unfortunately, the platelets still seem to be low and we're not exactly sure why. It's hard when we can't seem to catch the the doctors and speak with them directly. Pat was hoping to see the surgeon this evening but that didn't happen. We came up with a list of questions which Pat left in case he came in later tonight or over the weekend.
Our primary concern is why she was doing so well and now things seem to be going backward. One of the side effects of low platelet count is fatigue and weakness...great! No wonder it's hard to get her moving. She seems to be doing everything asked of her but we're going to see if they can schedule more PT for her at whatever level she can muster.
She started getting puffy again so they've increased the diuretics...seems to be a constant battle trying to find the right balance. Too little and the edema returns; too much and they can dehydrate her veins.
Wish I had more positive news to report but right now, she's still a very sick gal and it's still day-to-day. Keep those prayers coming. We all appreciate the love and support you're sending her way.
Hello everyone. First of all, Mom is feeling fine, eating well and doing pretty well, all things considered.
That said, wish I had better news to report this morning but unfortunately, Mom has some serious on-going issues almost 3 wks post op. Basically, they have confirmed by ultrasound and CT Scan that she has quite a few clots in her upper extremities which of course puts her at risk for stroke in the near and long term. There is really nothing preventative to do at this point, other than keeping her on the blood thinners...Argathraban by IV for now and then Coumadin, probably for the rest of her life. This was something they tried to avoid by using the pig/cow valves but is an issue now anyway.
Pat was visiting this morning when both the Surgeon and Kidney Doctors were there and they didn't seem overly concerned. Made it sound like this was fairly common and not that unexpected. Then again, it's not THEIR mother.
On the positive side, they removed the catheter over the weekend! The diuretics seem to be doing the job as her creatinine was down to 1.3 this morning!!! That is the lowest it's been since this whole thing started 5 weeks ago.
The main thing we need to do moving forward is to encourage her to do as much PT as possible. Getting her moving is going to be key to her recovery. She's nervous about her legs giving out on her but Pat assured her that they wouldn't let her fall so hopefully she'll work a little harder on the walking. She is willing to do everything else they ask but the walking is still the major stumbling block.
Still no idea when she may be released to the acute care but we're going to try to set up a conference call with her doctor to determine the gameplan moving forward.
As always, thanks for your concern and continued prayers.
Still at Baylor Heart Hosp. Surgeon said Platlet count needs to be at least 120 (not 140) and she's now at 116, so making good progress there. With the reduced diuretics, the fluids started accumulating again so they withdrew 800ml from behind one of her lungs this morning. Said she could breathe easier again...I guess so! Kidneys are still holding their own but they are adjusting her diuretics again to keep the fluids from backing up.
Pat spent the night at the hospital just to keep Mom company, so was there for her morning PT. These weekend PTs hadn't seen her for a week and were impressed with her progress. She still needs a lot of assistance, but is doing much more than before, which is good.
Thanks for all the continued good wishes and prayers.
Thursday - 15 Days Post Op - Still at Baylor Heart Hosp.
Journal posted on December 2, 2010
Just spoke to Mother's nurse and she tells me that she's doing well but having a "lazy day" today. That will change when PT comes around!
We expected that she would be relocated to Plano Specialty this week but that's still on hold until her platelet count improves. She's currently at 110 and they want her count to be at least 140. The platelet drop is due to the Heparin reaction they found shortly before her dialysis. (Heparin is used to prevent clotting during dialysis and to prevent intravascular coagulation during open heart surgical procedures.) The major risk right now is preventing clots which could lead to a stroke so the Hemotologist is watching her blood counts very closely and treating her with another anticoagulant.
On the plus side, her kidneys seem to be recovering, with her creatinine level holding at 1.7 with good output, so they have reduced her diuretics to oral lasik rather than the IV meds she was receiving.
So, she's still not out of the woods quite yet, so please keep her in your prayers. She is in the best hospital for her condition and they will not release her until all of her numbers are right.
Jan here again....journaling from Tuscaloosa, Alabama. Yes, Mom is doing so well that I've run away from home! Actually TO home. Jean contInues to amaze and inspire all of us with her resilience and strength. Her kidneys are continuing to function on their own and her createn (?) count has come down from 3.5 to 1.7 (1 is perfect) so things are trending in the right direction. That means that the kidneys are beginning to filter properly.
The doctors have decided they still want to monitor her closely so she will move to Plano Specialty Hospital probably on Thursday. She will likely be there a couple of weeks before moving on to Remington for the rest of her rehab.
Speaking of rehab....today she walked from her bed to the door of her room! That is the furthest she has managed since before surgery so that is a real milestone. She has a long way to go but we are confident that she will feel better and be stronger than she has in several years when she comes home.
Pat or I will update as things progress until Mom is ready to do her own journals. You can leave message for her on the Guestbook but remember to sign them encase it does not show email addresses. She also cannot reply to guestbook entries. You can also send messages to her regular email and she will see them at some point. She is looking forward to being back online soon!
Things continue to improve. Kidneys are still functioning and labs are looking good. We hope that she is well enough to transfer to LTACH (acute Care) or Skilling Nursing tomorrow or Tuesday.
Lots of activity today, including PT where she stood alone for a minute or so and even took a couple of steps using the tray table for support. She sat in the Cardiac chair for quite a while and had several visitors.
That's it for now. Just keep praying that the kidneys continue to improve!
Last night Jan decided to "run away from home" as Jean was doing so well that we felt it was time she could manage on her own....with nurses only a few steps away, of course. She did just fine (as we knew she would) and we got good news when Pat & I came to visit this morning...her output was strong and steady overnight and her morning labs were improved. In fact, they may remove the central line tonight or tomorrow because they are hoping that the kidneys can now function on their own without further dialysis! They are of course keeping a close eye on everything so if things start to backslide they will insert a perma-cath for dialysis. Although it has "perma" in its name, it does not mean that dialysis is permanent. Just means it's a more stablile type of catheter and more comfortable for the patient.
Pat & Jan spent the day looking at Skilled Nursing Centers and found a beautiful facility conveniently located for both Pat & Steve to visit. If you are interested the website is: http://www.remingtonmedicalresorts.com/dallas/index.html Aside from the location and amenities, the primary reason we selected this facility was the PT department. Since this is key to her recovery from here it was the final deciding factor.
Not much else new until Monday, so stay tuned....good things are coming!
Had an EXCELLENT night and the diuretics really kicked into high gear...Output goal was 500 cc per 12 hr. shift. Daytime, she hit 400...much improved over the day before and her highest volume to date. Last night however, she produced 1,765cc!!!
We didn't think that was even possible.
Her morning labs weren't perfect but pretty darn good because her doctor even cancelled today's dialysis! She may have turned the corner but we will have to wait to see how my kidneys do on their own today. They did take her off oxygen and she is breathing without assistance since November 1st when this adventure began.
The Surgeon is extremely happy with his work and says she'll feel better than she has in a long time once she's over the surgery itself.
The next step will be to transition to a LTACH (Long Term Acute Care Hospital) or now they are talking about a less intensive Skilled Nursing until she can step down to a rehab center. A long way to go with rehab after being in bed for so long. They tell me that will improve each day as she has more PT.
I can't think of anything else right now other than to say thank you for all your concern, messages and most of all your prayers....they are definitely working!
Not exactly a "fun" way to spend Thanksgiving but the staff was cheerful and we all managed to have a nice day. The hospital provided a free Turkey Dinner to families and staff, which was very good, so Mom and I had our turkey and dressing together, while the rest of our family (Dallas and Atlanta) managed without us. Most of the Dallas family dropped by during the day to visit and we Skyped the Atlanta group which was fun. First time they've "seen" GG since the surgery and vice versa.
On the medical side, things "may" be turning around in the kidney department. We will see what the doctor says tomorrow after he sees her lab reports but her urine output today has been FABULOUS! 400 ccs from 7am-5pm (500 was her goal) and we're probably at around 600 in the last 6 hours. She was tentatively scheduled for another dialysis tomorrow but if her labs are good, that may change....we hope.
Will discuss moving to the LTACH tomorrow but expect that to be Monday or Tuesday. I will be heading back to Atlanta, so Mom or Pat will have to update the journal after that.
Mom is sleeping soundly so I'm about to hit the sack. Hope everyone had a wonderful Thanksgiving. We have more than usual to be thankful for this year.
Very long and busy day so I'll try to keep this short.
Mom woke up bright eyed and bushy tailed at 4:00 am so we got an extra early start today so I decided to get "pay back" with a little PT! And she actually did very well with the few exercises that I can help with. Then Dialysis showed up at 5:30 and it was off to the races...before that was even finished, another technician showed up to do an Doplar ultrasound of her legs and arms to make sure there are no clotting issues, now that they've had to take her off Heparin. 3.5 hrs and 2 liters lighter she was finished and pooped. But no rest for the wicked! :}
Pat and I spent the after visiting some Long Term Acute Care (LTAC) which is a transitional hospital between this facility and a rehab center. Don't let the "long term" scare you....she will probably only be there 25 days before going to a regular rehab center, if necessary. She will receive rehab there but also be monitored closely and have dialysis if necessary. We found one that is very convenient to Pat's & Mom's house which is great. They may transfer her on Monday or Tuesday next week. That will depend on how she does over the weekend.
Chris and the girls had a nice long visit while we were out and she really enjoyed that.
Not much change in her overall condition but we're making baby steps forward each day. The doctors are pleased with her progress after only 1 week, so we continue to be optimistic about her long term prognosis.
We will enjoy a Turkey Dinner here at the Heart Hospital and then the family will come up to visit (at staggared times so we don't overwhelm her). We plan to try to Skype with the Atlanta Gang at some point since this is the first time in 30+ years that Jan hasn't been there.
Still, we have MUCH to be thankful for so we are not complaining.
Sorry for the late update but the internet went down earlier and I’m just getting a chance to journal so this will be a little longer than usual.
Mom had a bit of a rough night getting settled down for sleep...nothing serious, just a combination of restlessness, monitors going off, too much light, etc. A good sign that her system has been cleaned out from the toxins that had built up and she’s now more aware of things….that’s also the bad news for her. She started off well but awoke about an hr. later and we were off and running. Something happened every 15 mins. from 10 pm to 2 am. Finally, she managed to get back to sleep and Jan wasn't far behind. The nurse let us both sleep in until 7:00 am instead of 5:00 but due to the late sleeping pill, Mom was pretty groggy most of the day but she’s also had a very active day, so it’s understandable.
Dr. Mao, her Nephrologist (kidneys) said the dialysis has taken almost 10 liters of fluid off of her in the past 3 days. If you have trouble with metrics (like me), think of carrying around FIVE 2 liter soda bottles. Her swelling is way down and her lungs are clearing up but we're not out of the woods quite yet. Her urine output is still extremely low, but he wanted to give her a rest from dialysis today and changed back to diuretics to see if that would help. Not much so far, so probably have dialysis tomorrow.
Other than that she's not in any pain from the surgery itself. They removed her last drain yesterday and her central line catheter today and greatly reduced her IV meds. They also drew 400 ccs of fluid off a pocket which had collected behind her lung. Each step means an overall improvement. She had an Echocardiogram today to check the valves and her surgeon told us everything is functioning perfectly!
On the downside, today’s labs showed that she has developed an allergy to Heperin which is an anticoagulant (like Coumadin). Heperin is used to flush IV lines/ports so the problem that presents is they will now have to stick her more often rather than using her IV ports. Mom took this news like everything else in stride and said, “Oh, well.” She has been such an inspiration throughout this entire ordeal and is still teaching me Life Lessons every day.
With the edema subsiding, she's moving around in bed much better but still has no strength to stand or walk. She can sit on the side of the bed unassisted, so they're doing some PT (Pain & Torture aka Physical Terrorists) and encouraging her move around as much as possible because she's so stiff after 3 weeks basically in bed. She is really trying hard to do all they ask of her, which is all they want or expect....just to try.
Still no word on next steps but it's pretty apparent that she will be moving to an in-patient rehab facility for some serious workouts before she can go home.
Chris (Pat's son) and his girls, Danielle and Jennifer, drove in from Little Rock last night and GG (great-grandma) was REALLY looking forward to their visit! Definitely the highlight of her day. Chris stayed here to visit which gave Aunt JJ and the girls some girl-time together. Pat, hubby Steve, Melinda and Adri were here this evening so she’s had lots of company.
Unless there are significant changes, I'll probably just do daily updates going forward as the routine details will probably be pretty routine and boring.
Another good night of sleep and feeling good....BOTH of us! Mom ate a very good breakfast and totally fed herself this morning...another good sign that things are improving.
She's not in any pain even though her last pain pill was 12 hrs. ago....incredible!
The kidney doctor stopped by this morning and said her urine output is still way too low, so he's ordered another round of dialysis today and will see where she stands tomorrow. The first two rounds have done WONDERS. She's more alert, lungs are clearing and hands less swollen so she's able to do more independently and certainly more comfortable.
We did a few PT exercises this morning so she can show off when they come in later. She is really working hard and doing everything asked of her, even when it's not easy. Best of all, she has excellent cognition and sense of humor. She is quickly becoming one of the favorites around here. No surprise to those of us who know and love her.
That's all for now....please keep her in your thoughts and prayers...we have much to be thankful for this Thanksgiving week!
Mother is doing so MUCH better this afternoon. The edema is subsiding and she's putting out about 15 cc of urine an hour...about 1/2 of where they want it but VAST improvement over the past couple of days. She's extremely alert, eating and breathing well, so they are going to do at least one more dialysis today and see where things stand. They expect her kidneys to make a full recovery and then it's just back to the basics of surgery recovery and rehab.
When she realized early this morning that it was Sunday, one of the first things she said was, "Are the Cowboys playing today?" Adri stopped by before church to bring her a new Cowboy blanket to cheer on her favorite team, and then Pat & Melinda joined them to watch the game. Cowboys clobbered Detroit, so it was a good day all around.
Thanks for the thoughts, prayers & messages....she misses all of you as well.
That's all for today unless something major happens tonight.
Mom had a GREAT night...slept 7 hrs! Much more alert this morning...speech and eyes more clear. Had a little urine output overnight. More than yesterday but not enough to avoid dialysis again today but still shows kidney activity which is a good sign that this is temporary to help her right now.
Pain management is still good...just on hydrocodone and not needing anything stronger. Not complaining of pain unless they turn her...but it's not chest or incision pain...her legs are really stiff. PT is really going to be important in the coming days to get her strong again.
Will update again this evening or if there are any significant changes.