Marlise's Journal

On the mend! Hi everyone, We had our final visit at Duke yesterday. They said she looks really good! She had all staples and stitches removed and is released to her local doctors which is great! We shouldn't have to return to Duke unless something happens with her incision. She can hear her valves more clearly which makes us think the swelling is going down. The fluid is still coming off as well & she is on oxygen but only temporarily and if anything it can't hurt! She does have to be on a low sodium diet (less than 1 TEASPOON!!! a day) as well as no caffeine and keep an eye on her green leafy veggies because it can thicken the blood due to the Vitamin K in it. Need that blood thin for those valves! This will likely be my last update on Mom's behalf. We wanted to thank everyone from the bottoms of our hearts for all the good wills and wishes sent out to us through many different ways. Thanks for everyone who checked in on her and just.... for everything. We are so fortunate to have such a great support group!! This warm, welcoming group was really a game changer for helping getting us through! With love, gratitude, and well wishes- Kristina (Marlise's Daughter)

Hey everyone- hoping to get my staples out today at my follow up visit today! I tried posting this as a status a couple times but i don't see it so i don't know if they came through. ANYWAY! I am looking for an app or tracker of some kind to track my fluid input & output, Sodium, & Vit K. Anyone have something they use before i reinvent the wheel?

Hello everyone, Thank you for all the well wishes. We hope to discharge today once we get the supplies and items at home that she needs (basically Oxygen). We go to Duke to get the staples out and labs done on Wednesday. Hopefully we will get her to stay home for good now to continue her recovery:)

Hope yall are well! Mom is doing good today. She is flushing out the fluids and her blood levels are perking back up! Our goals for discharge (and no we don't know when (-: ) is to get all the fluid out and her heart back in a regular rhythm- which it looks like it is trying to do. Hoping to be home soon- thanks for everyone's support!

Hi everyone, Don't be alarmed BUT.... Mom was readmitted to our local hospital for observation. She was having shortness of breath overnight and went to the ER this morning. There are a few elevated blood levels & excess fluid. They are covering all the bases and gave her a CT. There is fluid around her lungs but no clot and no fluid around the heart so that is good. Her heart did go into A-Fib (irregular/fast heartbeat) while at the ER. She will likely get another echo tomorrow to ensure the heart and valves are working normally but the doctor seems to think it will be all clear. She will also need a blood transfusion as her levels haven't gotten to where they were hoping... even with all the iron rich foods:) Doctors say this is not uncommon. We will likely be here a couple days and will keep you posted! Keep the good thoughts coming!

Hi everyone- here are Marlise's full updates that i thought was posting on the photos. To start from the beginning to to the bottom _______________________________ Making new friends! posted 7/5/18 Good morning, Some good news today- Mom's blood levels are changing and she is down 2 lbs of fluid! Yahoo!! So although we will likely still stay another evening, there is upward change in the levels which is good. For those worrying- a longer stay in the hospital isn't always due to complications or problems, it's just that the new blood medicine has to be at a therapeutic level in her blood and we aren't quite there yet. It's on the upswing though so that is why we are hoping for tomorrow but again, nothing concrete. We would rather stay longer with all the care than leave before we're ready and be in an emergency situation!! As we are able to go outside for 30 min at a time, we have been doing that. Before mom was able to- this little guy showed up so I sent her this picture & this morning there was also a volunteer pianist playing that I sent her video of. Mom ate ALL of her breakfast today! This is the first time she has finished one of her meals so I am really proud of her. We are staying positive and ahead of the pain. Shooting for 20 laps around the hospital floor today (a little over 1 mile). So this morning, we did our 5 assisted laps with ease and said hello to our floor buddies. We don't go by name but we know their faces and say hello. Mom and I go out of our way to encourage people when we see them in the hall walking as well because hey- some people are alone here. I also told one of the other gentleman that has been here since before mom (he had a transplant), that I hope not to see him tomorrow because that would mean he got discharged!! Everyone is rooting for one another! Talk soon! _______________________________ Happy 4th of July! Hi everyone, We are hoping for discharge tomorrow or Friday but nothing concrete yet. Mom's fluid is coming off her each day but there is still some retention. We are also still working on a couple blood levels. Nurse Practitioner noted that this wasn't uncommon as she did have 2 valves and recovery time for 1 was 5-7 days. We want her as good to go as she can though so no rush at all! Conrad headed back to get the house prepared so I will stay with her until we are discharged and drive her home. She had a pretty good day today but we didn't get as much walking in because we did some unassisted walking as well, which really tires her. Until tomorrow- Happy 4th!! _______________________________ No we were not discharged today Posted 07/04/2018 Hey everyone, Still some fluid on her and around her lungs as well as her blood not being thin enough but she is a trooper. She walked 1 MILE today! Walking is the best thing they say you can do!! We are hoping for discharge tomorrow (all the time really) but we really won't know until they tell us we can go. There is a certain drug that they typically change to oral the day before you leave and that hasn't happened yet. Although we don't want to be here any longer than we have to, we don't want to come back because we left too soon either. On the bright side she was cleared to leave the floor and go outside for a little while- we enjoyed it! _______________________________ Wonder Woman Shield is on! Posted 07/03/2018 Hey everyone, Another day and night at Duke... Last night Mom's incision was opened to air and she was un-tethered from all machines. This is a picture of her incision shield that helps keep the clothing off of it. She has a 7 inch line of staples running down her chest but it looks good on her and is healing well. This morning, she had her temporary lead wires removed from her heart and now, due to her mechanical valves, they are thinning her blood to start her on her oral medication, Coumadin, which keeps the blood thin to keep the valves running smoothly. All in all in she was unleashed from machines for approximately 12 hours but boy was it was it nice! She is still wheezing at night but attempting to get some sleep and is now walking 1/4-3/4 of a mile daily! She has graduated to a rolling assisted walker instead of a more assisted one. She is eating because she has to due to no appetite but we are bringing in better food to try and encourage her. We will know more in the morning however the nurse practitioner thinks Wednesday is more likely for discharge- Until tomorrow- hopefully I'll be reporting that we're going home instead:) _______________________________ What goes up, must come down... Posted 07/01/2018 Hello everyone, Sorry for the late update- was a big day of FIFA soccer and visitors today! Today has been one of mom's harder days as she did not get too much sleep last night due to wheezing. She is also having some fluid buildup that is making her uncomfortable. She is walking well and has upped her laps from 2 to 3 laps/walk. Later, I plan to take her for a wheelchair ride downstairs so she can at least look outside. i don't think they will let me take her outside but I sure will try!!! Thanks for everyone thoughts and concerns. Until tomorrow- Have a good evening! _______________________________ Here she is.... Miss America.... of Duke:) Posted 06/30/2018 Happy Saturday everyone! Mom is doing great! We have found a medication that controls pain but doesn't take away her spark and give her grogginess and it's given her back a little of her appetite. She is getting more and more sleep each day and they took out her last chest tube drain today! Yay!! Now there is only one machine to carry around & hopefully that will get pulled tomorrow. She is walking well (and she only needs a family member now so we don't have to wait for a nurse) and doing all she needs to do to continue to get healthy and get out of here. As it's Saturday it's a little quieter around the hospital but she will have quite a few visitors since people have off- she is very loved and looking good! Thanks for the continued love, support, & happy thoughts! _______________________________ Keeping on the up and up! Posted 06/29/2018 Hello everyone, Good news today! - Her heart is beating on it's own with the temporary pacemaker as a backup which is awesome!!! - She had one of her chest drains removed with the other scheduled for tomorrow - They are weaning her off the oxygen today and her next walk we are shooting for 2 laps (18 laps on this floor equals a mile) - She was able to sleep more or less on the step down floor We are working on her pain meds as she doesn't like the grogginess but we are working to keep her pain under control but also her to feel like herself. This is the view from her main hospital room & they even have music therapy from time to time. In ICU is was a flutist/vocalist & in the main a guitarist/vocalist. I asked about animal therapy but unfortunately we don't qualify due to the open incisions and stuff;) TBD on leave date but we are thinking Monday at the earliest. Her surgeon, although a man a few words, is apparently one of the best in the state if not the US:) He was in a meeting recently so we look forward to seeing him tomorrow and hopefully get a better idea on when we can head home. Keep the good vibes coming yall! _______________________________ Goodbye ICU! Posted 06/28/2018 Say Goodbye to this view! She has graduated to the step down floor in the main hospital which is a good thing!!! The likelihood of a pacemaker is looking low which is good and hopeful. Everything looks stable and not much to report today. She is still tired but thanks everyone for thinking of her <3 _______________________________ Day 1 Post-Op Posted 06/27/2018 Hello everyone & Good morning! I was here until about 10pm. She was able to get her breathing tube out but was "talking" up a storm up until then using a letter board! She came out of anesthesia beautifully but her blood was a bit acidic so she had to keep the breathing tubes in a little longer while they got that under control. They removed it for her at 10pm and she had a sore hoarse throat. It's was a long night. As only one visitor can stay over night Conrad stayed but of course they were checking on her every hour so neither got good sleep. I relieved him this morning and we have some updates. She walked 200 steps this morning and has her voice back mostly although her throat is sore. She can have clear liquids and we hope to graduate her to solid food by lunch! So... the other thing is that her heart conduction isn't working normally (without the temporary pacemaker they have in now which is standard care) which isn't uncommon and is hopefully due to the swelling. It does mean she needs to stay in ICU at least another day and, although far off, she may need a pacemaker. But don't worry because they said it isn't uncommon & more often than not it'll return to normal. She is "tired and in pain but otherwise okay and thanks everyone for keeping us in your thoughts, prayers, and good vibes." _______________________________ She has made it through Surgery! Posted 06/26/2018 Hi everyone, Great news! The surgery went well! They were able to do what they needed to and the valves went in well and seem to be taking well. She finished up her 5 hour surgery around 1pm and they moved her to ICU for recovery (standard care) around 1:30pm when we were moved to a different floor. We were able to see her sedated around 3:30p & as of now they are weening her off the ventilator to remove her breathing tube (also typical). She is waking up very well and is even able to acknowledge us with head "yes" & "no" and thumbs up and down. She also is already wanting to write... what did she say!? She said she was "working in her dreams"; "how long was surgery"; and did Chris and I eat- always a momma:) We & the wonderful staff here are very happy with the progress she is making although there is still a long road ahead. So far no pain for her and I will keep you updated on how she does over night. Keep the good vibes coming everyone! She's on the table! Posted 06/26/2018 by Kristina Mclamb Good morning everyone, We arrived early at 5:05am (just in time before the line built up) and they took her back shortly after. They got her dressed, prepped, and IV'd before they allowed us to go back. She is in good spirits and we complained when they switched the hair net from NC State red to stupid hopital/carolina blue ;) We gave her lots of hugs, kisses, and well wishes & the actual surgery began about 8am. We will get very generalized updates about every 2 hours and we expect it will take 4- 6 hours. As this is a very personal matter, we'd appreciate if you do not share any of these updates with others, post online, etc. at Mom's request. Keep you updated and keep the positive vibes coming!

Short update today- we are still working on that blood level and mom is having a bit more sternum pain but overall she is doing well. She is slowly gaining her appetite back and her senses are starting to get back to more normal as well. We did complete 20 laps yesterday which was a goal for us!!! She is also working hard on alternating by solo walking and assisted walking with the roller walker. Her incision is healing well the doctor said. She is also working on not using her arms as much but dang if that's not a hard habit to break when you have used them all your life!

Day 10 post op; INR 1.7 (required therapeutic range is 2.5-3.5). Daily INR is only increasing by 0.1. Did anyone else have hospital stay extended due to this after mechanical valve replacement or something out of your control? Otherwise more good and than bad days and walking daily mile.

Hi everyone, Marlise's Daughter here! She is doing great after her Surgery on Tuesday. i posted her updates with some pictures on her page if you'd like to check it out! Best of luck to all in recovery and all whose surgeries are coming up soon!

She's on the table! Posted 06/26/2018 Good morning everyone, We arrived early at 5:05am (just in time before the line built up) and they took her back shortly after. They got her dressed, prepped, and IV'd before they allowed us to go back. She is in good spirits and we complained when they switched the hair net from NC State red to stupid hopital/carolina blue ;) We gave her lots of hugs, kisses, and well wishes & the actual surgery began about 8am. We will get very generalized updates about every 2 hours and we expect it will take 4- 6 hours. As this is a very personal matter, we'd appreciate if you do not share any of these updates with others, post online, etc. at Mom's request. Keep you updated and keep the positive vibes coming! ---------------------------- She has made it through Surgery! Posted 06/26/2018 Hi everyone, Great news! The surgery went well! They were able to do what they needed to and the valves went in well and seem to be taking well. She finished up her 5 hour surgery around 1pm and they moved her to ICU for recovery (standard care) around 1:30pm when we were moved to a different floor. We were able to see her sedated around 3:30p & as of now they are weening her off the ventilator to remove her breathing tube (also typical). She is waking up very well and is even able to acknowledge us with head "yes" & "no" and thumbs up and down. She also is already wanting to write... what did she say!? She said she was "working in her dreams"; "how long was surgery"; and did Chris and I eat- always a momma:) We & the wonderful staff here are very happy with the progress she is making although there is still a long road ahead. So far no pain for her and I will keep you updated on how she does over night. Keep the good vibes coming everyone!