Welcome to the UPDATES Page
On Friday June 3, Darlene is having open heart surgery.
This site will be updated as information is gained.
You can refresh the site at any time to see if/when it has been updated.
We thought this the best way to communicate info to so many people who love and care, and who would like to follow along with updates - we would like to make everyone feel included and informed, while also protecting the energy and emotions of direct family (Rob, Adam/Kara, Krystle/Erick).
You are welcome to share this link with friends or family who are asking to be updated.
If you want to leave her some well wishes:
Download the free "Marco Polo" app to your phone or tablet.
She has said she will have her phone silenced a lot of the time and focusing on resting / recovery. She has said that this way would be a great way to leave her messages.
She loves Marco Polo because it allows her to see your face & hear your voice, and allows her to play the messages during times that are convenient for her.
Marco Polo Directions:
1. make an account using your phone number
2. press the + sign at the top right to add her or tablet
3. tap "enter a Phone Number
Her Phone number is: (519) 807-5835
4. Once you've added her, tap that icon to open the "chat"
5. When you see yourself, press the blue "video camera" button to start your recorded message
6. Tap it again to stop the message (it will be red with a white square inside)
- for any difficulties, watch this video: https://youtu.be/eknMFmnJ464 (click or tap)
Updates:
Tuesday 9:00 pm
heart medication was re-started to raise blood pressure (she’s currently on one BP med, down from 2). Also on a heart medicine to help the heart contract.
Last night she was short of breath so they increased her oxygen to high-flow 70% (with oxygen mask). Today after restarting that medication and with more Lasix she is back down to low-flow at 3 litres through nasal canula. She’s being given electrolytes due to urinating so much from Lasix. She’s coughing up phlegm, which is to be expected.
This tough cookie is still not complaining of pain! She’s on Tylenol and has orders for something stronger but only gets it if it’s needed/if she asks for it, and she’s not really asking. During coughing she reported a “pinch” and classified it as 2/10 pain! I did *not* inherit her high pain tolerance, but I’m sure glad she has it!
The nurse also said that typically patients are no longer in the ICU after her type of surgery but we know that mom just needs slow steady improvements at her own pace!
She was able to walk again today and the nurse said “she’s quite steady on her feet.”
She had a nice long visit today from her sister, Missie & another one from Adam tonight!
Thursday
Mom is still in the CVICU. Patients who are awake/alert typically are not in this unit quite so long so there are no shower facilities -- she's wishing for a hair wash! She continues to improve and heal slowly but steadily & surely! She's on one particular heart medicine that is only available in the cardiovascular ICU so that is one thing keeping her put for the moment. She calls it the "Kitchener Hilton" though, with such detailed attention and service! ("room service & they even put your socks on for you!" lol). A nurse braided her hair today to keep it away from her face and the wires. Her voice is still weak and raspy, but continuing to improve also. Her feeding tube is out!!! So the sore, irritated throat can start to heal. She still becomes short of breath. We talked today for a record of 41 consecutive minutes so that was great exercise for the lungs and voice. But exertion like that wears her out. She says she's loving watching the marco polos and feels the urge to respond when each is over, but does not have the energy just yet to respond to each. Keep sending her your love!
Friday 6/10
She continues to make slow, steady progress! She has gotten two balls to move now on her incentive spirometer (for lung capacity/strength). She is still on a heart medication that is only available on the CVICU floor. She had a nice visit with her sister Missie again today, and I think even a hair wash!
Now that the major improvements are behind her, it will be a slow, steady but long recovery for her heart and lungs especially, and updates may be slower than in the early days post-surgery. But, no news is good news in this case because no news means "same news" and same news means slow steady progress... and slow steady progress is good :)
We hope to soon report "graduation" to the regular floor, but for now she's exactly where she needs to be. Keep sending her all your love, jokes, encouragement, prayers, life updates, and just your smiling face!
Friday night 6/10 update!
Look who looks (and feels!) like a new woman!! Missie washed her hair and massaged her back with lotion (helping soothe a rash on her back) and also rubbed her legs/feet with lotion. What a spa day! Missie said she looks stronger. She has spent all (Friday) day with no wires on her face -- this means no oxygen, even during her hallway walks! Her breath is improving; coughing is less and still getting a little phlegm up as her lungs continue to clear.
Saturday 6/11
Another great day! I called up 3 times and the staff is very busy I wasn't able to talk to a nurse, BUT .. how about an update from mom herself! Even better!!
Sunday 6/12
Mom is back on oxygen. Ultrasound and X-ray show fluid in the bottom of her lungs and air pockets around the outside. She says oxygen seems to be helping some - at least more comfortable. But they are all set up for a draining tube through the night if needed.
Monday 6/13
She did not need the chest tube for drainage last night so that’s a very good thing! She is still on high-flow oxygen (a stationary machine that is attached to her face, using a nasal canula, thicker tubes than the usual small clear tubes of low-flow).
She had an ultrasound of her heart and it showed her body is fluid overloaded, so there is fluid build up on her lungs, in heart, and in limbs (legs especially) - so they have changed her medication for an aggressive plan to reduce fluid; the nurses say that it has been effective so far as evidenced by lots of urine output. Mom says she doesn’t notice a difference yet. She is still on medication to help her heart pump normally. She’ll have another ultrasound of her heart in a couple days to make sure things continue to improve; she’ll be in the CVICU until then at minimum. Let's all help (first validate) and then attack that feeling of discouragement!
She went for a walk this evening, about 50 metres and tolerated it well. This was on 100% O2, then went back to high-flow when returning to her room.
Tuesday 6/14
"Today was a better day" she said! She's been responding to the Lasix, releasing fluid and they will assess again tomorrow. She took THREE walks today at different times during the day, all around 50 meters each. Today was "busier" than usual, with many people in and out of her room and a lung ultrasound. She is still on high-flow O2, which she calls "the big snozz" lol
Thursday 6/16
Yesterday was a good day, she walked the farthest she has so far and O2 at a minimum since around 4pm ... that means no more high-flow big nose canula! Picture is this morning, with a text of: "Me having breakfast, breathing on my own. Now that's a boost. Keeping it off now."
Thursday she also had a nice visit from her sister again, and another massage :)
Friday 6/17
Because the fluid is not moving as quickly as had hoped and as needed, the doctors decided to manually drain fluid from her lungs using a procedure that would go in through her back. This was scheduled for today, and before completing it they did another last minute ultrasound of her lungs which revealed enough improvement that the doctor instead chose to hold off another day to see how much more improvement can be seen because he did not want to put her through that if he didn't have to. We are all grateful for this news, especially mom!
Saturday 6/19
Still no need to do the draining procedure due to steady progress. Mom is still breathing on her own without oxygen support, and says she feels such a positive difference with hardly any coughing today; she says the crud is moving out, or already has! She constantly has the hiccups! She now has a button fro self pain administration which she is finally using. White blood cell count still shows infection but they can't find any. She did 2 full laps of walking around today (which did induce vomiting when she returned to her room, but) overall she's reporting a good day! Dad went to visit today and washed her hair. xxoo
Monday 6/20
The PICC line came out of her neck today, which is great! That was the method for the heart medication that is only available on in the CVICU. So one step toward moving to regular recovery floor. She now has a PICC line in her left arm instead. Still has nasty hiccups that are quite annoying. She's in fair spirits, but just so "over it" -- not surprisingly. Missing Peyton on her 8th birthday!
Tuesday 6/21
After 19 lonnnng days in the CardioVascular ICU, mom has busted out and has been moved to the main surgical recovery floor. It is overfull, so she's been in the corner of a full room of 4, she makes 5. A positive step for sure! Dad visited her in her new "suite" (not a suite at all! but at least she had some company this evening!) She is glad to be making progress, but also it's 1 nurse to 5 patients, so getting help is trickier and takes longer.
Wednesday 6/22
She's in a room for 2 now. Pretty tired from all the commotion ! Still very weak and the white blood cell count is still off. They say Monday would be the very earliest she could be going home. Medical staff says she continues to heal from the surgery which is great but she reports she has "zero energy and the smallest of tasks wipe me out. They keep telling me that this is normal I haven’t seen much change in that. Could take months I'm told." On a positive note, she got half her staples out today (every other one) and the rest are scheduled to come out tomorrow. The incision site is a little tender - she's guessing it will probably be better when the rest of the staples come out. "Chest bone feels ok - coughing is the only thing that really gets me — luckily not much of that as before either. Home is on the horizon — I can see it!"
Thursday 6/23
Today is a full shower day!! (The first in 3 weeks!) The rest of the staples came out today.
Friday 6/24
No major changes to report. A re-assessment is planned for Monday. On low-flow oxygen support from time to time, needs to be off O2 for 24 before able to go home. Still taking walks using a walker, about once or twice a day. Hiccups have gone! Complaints of shortness of breath. Her heart function is not optimal yet - managing by restricting fluid and giving water pills. Switched diuretic to IV to continue to get rid of fluid - they have to balance this with nor negatively impacting the kidneys. They think body is reacting well to the Lasix (diuretic). This also causes electrolytes / potassium off balance so she's receiving potassium. Lungs sounded wet in the morning - crackles only at bottom of lungs (which is a good thing).
No d/c planning for now. They want to make sure fluid status and respiratory is WNL (within normal limits) before she goes home.
Tomorrow getting blood work done.
Saturday 6/25
Mom reports today: "I actually felt a little stronger today which is very good for my emotional heart ♥️"
She got 3 or 4 walks in. She felt pretty good until supper (still feels like she has to force food in). No complaints of pain. Will have X ray in the morning to see how lungs are doing. Nurse said her lungs sound better today than yesterday.
Sunday 6/26
up and walking today. Complained of being quite tired today more than usual.
X-ray from today (follow up), showed decrease sounds to lungs at the base, meaning fluid build up in lungs on right side, an increased amount - they do not know how much. They will do another f/u tomorrow to see if further testing (like ultrasound of chest) is needed to determine how much fluid in there.
Tuesday 6/28
INR, a blood marker is at target level today. Lungs sound quiet in Right base - they did an ultrasound to determine if its fluid or collapsed airway; it showed 800ml of fluid under lung. She is getting a drain put in to remove the fluid. Nurse practitioner suggests followup xray in the morning. If the xray looks good, and breathing is good, she will be discharged
Wednesday 6/29
She's experiencing pain from chest tube. They have increased pain medication. She's sitting up in the chair. So far nothing has drained from the lung. Doctor will be in later today to assess. She's feeling pretty discouraged.
Doctor called to give update: her lung hose is kinked inside her. She will be sent back down to have that taken care of this afternoon. She cannot leave the hospital until the fluid is drained because her breathing is very difficult. Friday is next targeted date for discharge.
Thursday 6/30
Fixing the kink in the chest tube was a success, and a lot of fluid drained! Things went so well, that ...she's coming home today! (And so am I! - flying in tonight!)
Friday 7/1
Happy Canada Day! Mom slept in her own bed for the first time in a month! As lovely as that is, it was a big change to the hospital bed she's been used to, so it was difficult to get comfortable. She's feeling nauseous and tired this morning.
Saturday 7/2
We needed to go to hospital outpatient clinic for bloodwork to measure INR levels to determine warfarin dosage. It took about 3 hours. White blood cell count is elevated ( 14.7 ) so they checked chest tube site for infection and also urine sample to rule out bladder infection. Both looked fine. She got to remove the bandages on her back from the chest tube which she was very happy about because they were so itchy.
A third trip to the pharmacy and all the medications are finally worked out.
Mom got a wedge cushion for her bed (thanks to a great friend!) which has improved comfort but it’s still been difficult to fully get comfortable and to sleep well.
Sunday 7/3
Returned to outpatient clinic again today for bloodwork. We were there for 2.5 hours this time.
Today white blood cell count is down to 11.6 and they are happy with that.
K (potassium) is 3.0 so she was given a booster pill while at the clinic because yesterday it was 3.5. Low potassium can cause weakness, fatigue & difficulty breathing -- and she's definitely feeling all of those; mostly fatigue & "wobbly."
From here she will follow up at the community lab, 2 times per week for 2 weeks. Then 1 time per week for 2 additional weeks. This is to monitor INR levels (which determine warfarin dosage), white blood count, & potassium (K) levels.
Monday 7/4
More blood work today, but at the lab this time, instead of the hospital. We were there 2 hours. The upside is no beeeep beepity beep beep noises of the cardiac floor! The downside to it is we did not get the results today so med dosage is a calculated guessing game for today. Tomorrow we will have the results and her family doctor will give the dosages for Tues & Wed. Thursday she goes for more blood work (we'll go earlier in the morning and hopefully have the results by dinner).
I wanted to give a little glimpse into what home is like:
She has a stander chair that has a remote so it transforms from a recliner into a "regular" chair, but then it also has a third position with tilts forward and slowly gently "pushes" the person into a standing position so she does not have to use her arms to sit up. She is on week 4 of 6 weeks of sternal precautions. She spends most of her day in this chair, and is able to walk to the bathroom by herself, just a little shaky and unsteady at times. When it's sunny outside & not too hot or not too chilly she also sits/lies in the anti-gravity chair outside in the backyard. She does the set of stairs up & down once a day - down in the morning, and back up again to bed at night. It takes quite some time and all of her energy; this will improve slowly but surely.
Today has been day 4 of full days at home. We've gotten into a pretty steady (quiet & slow) routine, and the days ahead will just be a continuation of that routine. Thank you so much for your love, support, prayers, & check ins so far!! She really appreciates it, and so do we (the whole family). She has her phone and when she feels up to it, sometimes is texting or responding to marco polos, but again that is whether she feels enough mental and physical energy -- that right now is the largest hurdle. Regular updates on this site will now shift to maybe once a week, unless something big (positive or set back) occurs, and I'll be sure to update here.
