Memories

Facebook can be annoying and frustrating at times.  Often there are more ads on there than news from Facebook friends.  One of my favourite things from this social media is to see happy news from family and friends.  I enjoy those first day of school pictures, the decorated houses for Christmas, and of course, most recent the great costumes from the little and not-so-little trick or treaters.

Another thing I enjoy from Facebook is when it pops up and says that “you have memories to look back on this date.”  I can fondly remember great vacations, good hikes and how cute and little our grandchildren were.  To set the record straight, they are still cute but not so little.

Today this picture popped up as a memory.  It was a picture that Tina had tagged me in.

It’s so sad to me that I won’t get any messages from Tina any more unless a miracle happens.  So, when Facebook shows me a memory that Tina is in, I will treasure that moment even more.

I know that the blog has been a little quiet these days but I don’t hear a lot of news or the news is much the same.  Tina continues to be looked after at the hospital.  Some of you have gone to visit or take Tina for a walk.  Some of you have sat with Tina and fed her and many of you have offered words of encouragement and told us that you are continuing to pray.  

We appreciate all of you….because of you we are STEELE Standing.

Happy Birthday to Mom!

Today our mom turns 82.  She had already left the house this morning when I called.  She was with Tina at the hospital.  Tina had eaten a half of a muffin and then wanted to lay on her side.

Picture taken on their 60th anniversary 

I wondered this morning what mom would have been doing if she wasn’t at the bedside by her youngest daughter.  She would have probably gone out for breakfast and hopefully got a free one due it being her birthday.  They may go out for lunch since a lady from mom and dad’s church was coming to sit with Tina.

Mom has been so faithful to be there for Tina.  She is on the top of Tina’s list to call when she needs anything.

Happy birthday mom from all of us!  We love you!!

*************

If you are interested in going to sit with Tina at the hospital she would love to have you there for a few hours to give her a drink or two, feed her a meal and try and make her comfortable.  You might be able to give mom a break some time.  We appreciate your support.

Tina was moved to a semi-private room so if you have been there before….she has moved.

Oh….and Happy Birthday to Hilda who shares the exact day and year for her birthday.  Two special ladies born on this day 82 years ago!

STEELE Standing….

Flying Home

I’ve been staring at this empty page for a while.  I know that there have been so many following Tina’s journey and looking for updates.  I have continued to do the posts because I promised Tina that I would.  I have many moments when the words that I put in print hit me…this is really happening to our sister.  It is in those moments that my emotions pour out in tears.  

Today Carol will be flying back home.  She has a long day of travel but right now she is at the hospital with Tina.  I know that my dear sister will be strong saying goodbye and then walk away in tears.  There is nothing easy about saying goodbye.  

Carol said that they were tying to brave
saying goodbye! 😢

Mom will replace her at the hospital when dad drives Carol to meet Jenn.  The trip will continue with Jenn dropping her off at the airport.  She won’t arrive home until after midnight her time.

Yesterday, Tina had a CT scan to make sure everything would be okay when they insert the feeding tube.  Dr. Robertson will be doing the procedure when it is deemed necessary.  He has assured her that the procedure will be different then what she experienced in Kingston.

Say a prayer today for Carol as she travels.

STEELE Standing?

Look For Something Positive

Tina is feeling better thanks to the antibiotics.  She is eating a little better but only small portions. She has better energy but tires easily.  She can handle sitting up for about two hours.  She goes to bed early.

I don’t have a lot of news but I do know that Kate came and gave Tina a manicure….one of Tina’s pleasures.

Carol and mom continue to do the day shifts. It’s hard to think about Tina being in the hospital but she does have the care that she needs there.  She is on IV constantly.  Her vitals are closely monitored.  Her weight has stabilized so the feeding tube has been put on hold. Her breathing is more shallow which means that she needs to be sitting straight to help her swallow.  Choking is always a concern.

Today we are thankful that Tina is feeling better.  We are thankful that she has been outside a couple of times this week.  We are thankful that Carol is there to help.

Today look for the positive …look for the good in people…take time to encourage ….look for the positive.

We are STEELE Standing!

Some have asked about Tina posting on her page.  She is unable to do that anymore.  She is not even interested in looking at Facebook these days.    

100th Post

On February 1st, we started the “I’M STEELE Standing” blog.  It was less than a week after our world was shaken with Tina’s diagnosis.  Here we are 100 posts later.  The ALS has progressed but we are STEELE Standing.

Tina is bed ridden but she STEELE has her smile.  She STEELE has her army surrounding her.  Encouragers are encouraging. Prayers are praying. Helpers are helping…

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

Tina seems to be doing better at the hospital.  She needs a lot of care and they are there to provide the medical needs.  Family have still been doing shifts to be there to visit, give her drinks, feed her meals or take her for walks.

On Tuesday, Judy was at the hospital with Tina.  She bundled her up and took her out to get some sunshine.

Mom has been going up early to help Tina.  Carol comes for the afternoon.

Carol took Tina for a little stroll today.  The nurses come to help get Tina in and out of the wheelchair. They use a lift to safely get her out and back in to bed.

 She was very tired and ready to sleep at 6:00 pm. 

Tina continues to lose weight.  She still hasn’t had the feeding tube inserted.

As I sit here, three provinces away from Tina, my heart hurts.  💔

We are STEELE Standing…we are standing for Tina.

A Short and Sweet Update

We were all a little concerned with the pneumonia diagnosis yesterday.  Thankfully, Tina was started on antibiotics right away to try and get ahead of it.

This morning, Tina asked google to call our very worried mom.  She sounded much better to everyone’s relief.  

Carol sent me a message this morning that Tina was thinking she was feeling up to going to the gift shop to have a look.

Carol and I both agree that Tina is one tough girl.

It’s always good to be able to write a post about something positive.  We know that life is very short and, sometimes not especially sweet, but we will take every day, every moment that we have to try and be positive.  Tina has taught us that.

Speaking of short and sweet….

You are Appreciated!

Carol arrived in Ontario in time for Thanksgiving and today she is thankful that her luggage found its way to her.

Yesterday, her and mom spent some time with Tina.  Tina’s spirits were up and she managed having a little bit of a turkey dinner.  She even enjoyed a piece of mom’s pumpkin pie.

Today, Carol was back to the hospital with Tina.  Tina wasn’t having a great day. She didn’t have much of an appetite today and was pretty tired. They ran bloodwork because she had been nauseous and wanted to make sure that she didn’t have an infection.  Through the tests, they found out that Tina has pneumonia again.  They started her on antibiotics.

Tina still hasn’t had the feeding tube inserted. Still waiting.

Tina still needs someone there through the day to help feed her and keep her company. 

On this Thanksgiving Weekend, we want to thank everyone that has helped in whatever way.  These past few months have left us grateful for those that have helped Tina.  Visiting or staying with Tina was huge.  The many meals and treats were greatly appreciated.  Your prayers and encouragement have kept us all going.

Thank you for STEELE Standing with us.  We appreciate you!

Self Care is not Selfish

I know that a lot of you have said that these updates are so hard to read.  Many have said that they bring tears.  When I read that it made Tina cry…it took my breath away.  I wondered if I should stop. Tina wants her journey to be documented.  It’s hard to write these posts…hard to read and even harder for Tina to live it.

I think we would all agree that Tina has the right to be selfish at this time.  I really wouldn’t call it that though.  She is trying to put all the energy she has left to get through this. She is strong.  She has carried us all through with her strength and attitude.  Now is the time for us to forget about ourselves and focus completely on Tina.

I got to talk to mom and Tina for a few minutes this morning.  Tina had a headache but sounded relaxed being in the hospital. Mom sounded relieved that she was there getting the care that she needs which helps Tina not have so many anxiety moments.

Carol is flying to Ontario tomorrow.  She will be able to spend lots of time with Tina over the next couple of weeks.

We are STEELE standing.

More Questions Than Answers

What? 

Tina was at KGH (Kingston General Hospital) with the full intention of getting a feeding tube inserted.  As mentioned before, she was in a lock down ward due to a COVID outbreak. Imagine, if you can…being in a room by yourself, unable to move and with the fear of choking. Anxiety will definitely kick in and it has.  Now, it’s time to insert a feeding tube but first they need to do a nasal insertion. I’m not a medical person but it sounded like they needed to do a barium before doing the procedure. 

I don’t know all the details but there were problems with the nasal insertion. Tina then ended up with a migraine and refused the procedure.  The hospital called and said that Tina was being discharged.

Where?  

I had lots of questions and one of them was “where is she being discharged to?”  I assumed, at least, back to the Napanee hospital. No, she was being discharged to go home.

When? 

Tina was wheeled down to the front door at the hospital. She was very nauseous and was throwing up.  I know that this is a lot to take in.  I can’t imagine the fear that Tina had as they drove the longest 40 minutes of their lives.  Tina feeling so horrible and afraid she might choke.

So Why?

I don’t think I am alone in asking why would an ALS patient be discharged from a hospital in this condition?  Why, if they were releasing her, wouldn’t they send her back by ambulance to the other hospital?  Why didn’t they sedate her, or at least give her something to relax her, before starting this uncomfortable procedure.

How?  

Tina is at home.  There is no homecare lined up.  She still needs the feeding tube.  How is this possible?  How can mom take care of her needs without burning out? How?

When Tina got home last night, mom came up and helped get her showered and in bed.  She was tired enough to sleep through the night. Tina was feeling better this morning. She had a carnation breakfast and some muffin.  The nurse, Angela, was there and started the IV.  Dr. Liz came and talked to Tina.  She said that there might be a surgeon that could do the feeding tube in Napanee. 🙏Tina would like (not like, understands the need) to be admitted to a long term facility and would prefer Providence Care in Kingston.  This would be the best option at this time.  Hopefully a bed becomes available for her soon.

Dr. Liz has been so amazing to try and find the answers when there have been so many questions.  Angela, the nurse, has responded so quickly in helping with Tina’s needs.  

So we wait…with all of our questions:

• What next?
• Where will Tina be when a long term facility opens up?
• When will she have the next chance for a feeding tube?
• Why would she be released from a hospital when she needs so much care and no one is set up to help?
• How is Tina going to be looked after until a facility opens or more homecare is provided?

What we do know is that Tina is home.  She ate a little Mac and Cheese for lunch, watched a little tv and is having a nap.  We know that Tina is loved by her family and so many friends.  We know that people care and are praying.  We know that Carol will be there in 5 days.

We know that we are STEELE Standing even when we have so many questions running through our heads.

Off To Kingston

Tina got to have her birthday party on Saturday and then today she was transferred to Kingston General Hospital. They aren’t allowing any visitors due to COVID restrictions.

She should have the surgery Wednesday or Thursday to install the feeding tube on and be transferred back to Napanee either Friday or Saturday.  Tina was told that they were doing the tube Tuesday and be discharged on Thursday.

So as far as we know, Tina will have the surgery sometime and be released sometime after that?????

Some days my mind thinks about how life use to be.  I think about how Tina kept busy juggling two or three jobs.  I let my mind wander to the Halloweens when we would take the kids trick or treating.  I can even smile when I remember Anthony, Tina’s oldest, dressed like a present.  Each door we would have to wait until he got crunched down in his box costume before we could knock on the door.  I think about the summers when Tina and the boys would spend time with us.  Our last time to the St. George’s Lake cottage, Tina had just had her gall bladder surgery.  She wanted in the water so I helped her flop into a giant tire. I remember that it was easier getting her in the tire than out. Those are the times I like to think about.  

Then reality hits.  I shutter thinking about the tubes that she now has connected to her. More often than not, tears flow even when I say her name. Sometimes I have a hard time breathing when I hear that she has lost another battle with her body. 

When Tina asked me to follow her journey through a blog, I knew that it was going to be hard but I also knew that I needed to do it for her.  This is a journey that I would not wish on anybody…it’s a journey that needs the support of all of you and we do appreciate you all.

Pray for Tina as she once again goes through another procedure.  Please pray that she will have peace.  Pray for Tina’s boys…and mom and dad.

We are STEELE a here, STEELE Standing and Steele needing your prayers.

Birthday Celebrations

The birthday girl made it to her party.  When they first started planning, some of us were sceptical that she would not be feeling up to it.

The queen was rocking her crown for the festivities and had lots of smiles through the day.

Jenn had sent us pictures of the decorations.

There was a nice turnout of friends and family to wish Tina a Happy 55th birthday.

Cake was served and there was lots for everybody and enough for the nurses at the hospital.  They have been so good to Tina.

Tina did really well keeping up with the celebrations but she started to fade at 3:45. 

She loved the visits from people.  She has lost a lot but she has her smile and laughter back. 

She was ready for her bed back at the hospital after the afternoon festivities.

Thank you to everyone that helped plan and to all those that came to say hi to Tina.  I know that you made her day by being there.

Tina, with help, put this note on Facebook, “Thank you for the many Birthday Wishes .. It was wonderful to see so many and I enjoyed each one and the time you took to share with me this special day.”

We are STEELE Standing and she’s probably sleeping!

The Queen is Back on her Thrown

Tina is still in the Napanee hospital awaiting her transfer to the Kingston hospital.  She had a bit of a panic attack through the night.  Mom went in the morning and then Jenn came later to let mom go home.

Jenn did a three way call with Carol and I to give us the update.  Once she is transferred to Kingston (maybe tomorrow), she will have the feeding tube inserted surgically, and then when she is able, she will be sent back to the Napanee hospital.

Jenn said that she was in good spirits and ate some chicken pot pie and a muffin through the day.  She will be getting ensure to supplement calories until she can get nourishment through the feeding tube.

The Queen seems to be back on her throne as she is starting to give orders about the birthday gathering on Saturday.  The hospital has okayed her leaving for a few hours to enjoy the celebrations.  If you are able to join in on this day, Tina will be thrilled to see you.

When: Saturday October 01 

Time: 1-4pm

Where: Roblin Wesleyan Church

(Her actual 55th birthday is the 29th)

Cake and snacks will be provided! 

******

Carol is counting down the days when she can be with Tina and the family.  I hope the fall colours are brilliant this year for her time in Ontario.

We are on our second last day with Stephen and Kylie.  This visit has been just what I needed.

You can’t let the rain storms of life constantly beat you down.  Sometimes, you just need to put the raincoat on and enjoy life.  Sometimes it will start to rain harder and sometimes you just might see the rainbow or maybe just a beautiful place to be.

We are STEELE standing…one day at a time, one hour and sometimes by one minute.  As Casey posted on my Facebook page, “ Happy Birthday Penny! May you live all the days of your life! 😉”  I’m trying to get back to that…to truly make the most of every day.  We don’t know what tomorrow will bring.  We have found that out!!

She’s Got Her Smile Back!

Tina was admitted to the Napanee hospital yesterday.  

It was so good to see her smile and laugh.  Jenn said that she had been joking on Friday when they were given the instructions on the lift.  When they had her up in the lift, she asked if someone could push her so she could swing.

After so many weeks of Tina feeling down and discouraged, we are so thankful to hear that her she is feeling a little better emotionally and it was great to see her dimples in the picture.

So we are very thankful that Tina STEELE has her smile and sense of humour.  We are STEELE standing.  We are grateful for the updates especially when they include a smiling Tina.

Another Update in Tina’s Journey

Tina has been feeling a little better emotionally.  Mom said that she has been eating a bit better. On Thursday, she had the catheter installed.

She will be admitted to the Napanee hospital this weekend and then transported by ambulance to Kingston on Monday.  She will have a feeding tube put in while at the Kingston General.  Mom thought she would stay there one night before being sent home.

Mom questioned why she needed the feeding tube when she is eating a little better.  The answer was that she needs to get it done now when it is not totally necessary in order to have it when she will need it.  She continues to have IV to keep her hydrated.

It was hard for mom when Tina told her that they were applying for a long term facility.  For all of us, it is so difficult to think about.  We understand that it is necessary but it is hard to grasp that this is where we are.

Jenn felt it necessary to tell Tina about the birthday plans. Surprises aren’t the best for her.  They are all hoping that she will feel like this gathering.  I would recommend coming earlier as she might tire out by 4:00.

When: Saturday October 01 

Time: 1-4pm

Where: Roblin Wesleyan Church

(Her actual birthday is the 29th)

Cake and snacks will be provided! 

********************

Carol will be travelling to Ontario in 16 days.

Today is my birthday and I am celebrating in Kitimat, BC with Stephen and Kylie. It’s just what I needed right now.

********************

ALS continues to take more and more away from Tina.  It is stealing Tina’s dreams for her future.  It is a cruel and brutal disease.  We continue to get and give updates.  It’s hard to hear and heartbreaking to know that this is happening to Tina.

Once again, we thank you for STEELE a standing with us and supporting Tina.  We appreciate everything you do!

Hospital, Testimony, New Equipment and Borje Salming

 Wednesday is usually a Jenn day and so she was at the hospital with Tina.

She gave us reports through the day and the first one was that Tina ate all of her breakfast.  She hasn't been hungry for quite awhile and we all know that hospital food isn't the best and so it was great that she had enough of an appetite to finish her meal.

Her blood pressure was 124/80 which is great for this Baby Princess.

Physio came and it was good that they were able to get started back on the stretches.  She actually walked today during physio.

She ate her breakfast and lunch.  Vitals are good and she walked to the doors by the elevator.  Jenn wheeled her downstairs and she sat outside  for 1/2 hour waiting for Austin.

When he arrived it was time to go back up.  She walked to the washroom and relaxed waiting for lunch.  She is her bossy little self!"

Here is the link for Tina's testimony that she did at church and I am hoping that I can add it here so that you can all hear how strong Tina is.  Click on the link to listen.

Tina's testimony at church

Today, a retired Toronto Maple Leaf Player was diagnosed with ALS. 

Borje Salming Diagnosed with ALS

"I do not know how the days ahead will be, but I understand that there will be challenges greater than anything I have ever faced," Salming said in a statement.

They are still not giving a discharge date and we are all thankful that Tina is getting the care that she needs and is feeling so much better.  Some of you have asked if you could go in and sit with Tina while she is at the hospital.  We so appreciate these offers but unfortunately with the hospital restrictions, they will only allow the 4 people that were put on the visitation list.  Usually only 3 are allowed but they made an exception and let 4 people be named.

We are so happy that Tina is STEELE improving with the health care that she is receiving.  Thank you for STEELE reading.

Update from Jenn

She is getting better and eating more softer foods mac & cheese, cottage cheese mixed with peaches for supper last night with vanilla pudding and brownie for dessert.

Legs are weak so limited standing.  Sitting up she is good for 1/2 hour then needs to lay down.

Vitals are much better took her bypap to her yesterday so she has that.

She has her tablet and good group of support but she's at the point she likes someone with her as comfort and assistance."

Carol sent us a little bit of serenity

Jenn sent this information about yesterday:

She had a decent day, we had a meeting with Melissa, Care Coordinator and she is going to reiterate to the agencies the importance of her being a priority, and any calls about no-show have to be called! Judy is going today.  She was tired out after the meeting with Melissa.  She did sit up in the wheelchair for about 25 minutes.  I'm not sure why.  The Charge Nurse had it down she had more mobility than what she does because he was confused when something was said about her being fed.

They are putting a request in for Physio to come work with her in the hospital which is good because she hasn't done anything in essentially a week.

From Carol's World

And what we would all like to be doing....wouldn't it be good to put life on pause and just go cruising!

Tina is STEELE improving from whatever took her down so low.  She STEELE needs lots of care and prayer.  We are incredibly thankful that she is at KGH getting the medical attention that she needs.

From Janice C

 Thank you for STEELE Standing with all of us!

Update from the hospital

I will keep this in real time as it seems easier to keep it straight in my head.

Sunday

11:52 a.m. - Jenn was working and popped in to check on Tina.  She sent this: “Aunt Tina has more colour.  She drank a good amount of water.  They are holding off on IV for now but have it ready if needed.  She is going to email Dr. Melanson to let him know she is here. And we got a call bell she can use!”

1:20 p.m. - “she has ate some ice cream and had a bite of a club sandwich.  This is her second glass of water.” - from Jenn

Carol told Jenn to tell Tina that her garden is looking great as she tries to work away anxiety.  I added, that my garden looks horrible and causes me anxiety.  

At 7:48 p.m., Carol asked, “How’s the bp?”  I thought for a while wondering what this short form was and then asked, “Does this stand for Baby Princess or Bad patient?”  When she responded with “blood pressure” I realized how badly my brain is currently working.

Jenn responded that Tina’s blood pressure is perfect!

Jenn’s final update of the evening was at 8:33 p.m., “fluid intake up, still gets nauseous and tired out after being up. Was able to have a conversation and was smiling today and giving orders.  She drank two glasses of water.”

9:31 p.m. -  Tina not good. She made several trips to the washroom with help and a wheelchair. At supper she ate all of her mac & cheese first good eat since Mon last.

Monday

9:57 a.m. - Jenn was working again and popped in .  Tina was being taken for a shower.

I received a message from Casey, a friend of Tina’s to see how she could help.  She was willing to go and sit at the hospital with Tina but unfortunately is not allowed.  We have been overwhelmed with the number of people who have reached out to help, pray and just offer words of encouragement and comfort.

*****

We are thankful that Tina STEELE has a voice and can STEELE give orders.  We are also happy that she is STEELE our “Baby Princess” and hopefully she isn’t a “bad patient.”  We will give an update later on her bp!!!

In Real Time

Tina was feeling so horrible yesterday.  She knew that she needed help.  She talked to Jenn and found out that she was working at KGH.  (Kingston General Hospital is located about 30 minutes from Tina.  It is a much bigger hospital.)  Tina said that she needed someone to fight for her to get attention.  Jenn accepted the challenge.

She went to the hospital around 1:00 p.m.  Jenn finished her shift at the hospital at 3:00 and went through triage with Tina.  Jenn went home and showered and ate supper.

7:28 p.m. (Ontario time) - Jenn got back to the hospital.  They had done an ECG and a CT Scan.  They got her hooked up on an IV.

7:32 p.m. - they decided to keep her over night.

8:58 p.m. - Jenn updated us with, "so the dr is AMAZING! They have started more Odanzetron.  They did CT and it looks good.  Going to have internal medicine come see her. Blood work is perfect."

Odanzetron is medication used to prevent nausea and vomiting.

10:52 p.m. - "Just saw internal medicine resident. They will be admitting her.  Wil be going to the floor sometime tonight.  I asked about being moved to an isolation room because there are so many coughing and stuff, they did.  So we are in a quiet room.  She is sleeping.  We are awaiting chest and abdominal x-ray.  The internal medicine resident has ordered more anti nausea meds as needed." - Jenn

11:15 p.m. - they took her to x-rays.

11:19 p.m. - Jenn's bed for the night

11:25 p.m. - Carol asked the question if Jenn needed to stay all night.  "Someone needs to, if she starts getting sick she needs help....and there are a bunch of doctors coming in."

Sunday at 12:01 a.m. - "they are admitting for more than a couple day." (this was after Jenn told them how much care Tina needs and how little they have available.)

12:05 a.m. - "he said we will admit and get fluids and start antibiotics incase it's a bit of a bug."

12:17 a.m. - "good night.  She's snoring.  And I'm close behind."

2:00 a.m. - Tina got moved to a room on the floor. 

Tina slept some and Jenn got about 1.5 hours.  Tina's blood pressure is elevated (198/103) but it came down some in the morning.  The neurologist that she has been seeing is on call tomorrow.

6:54 a.m. -  2.5 bags and feeling like dirt.  Blood pressure toooo high.

8:58 a.m. - "Breakfast here but she won't eat.  Been 4 days no food, just fluids." 

*Note - times may not be exact.  I was going from the update times.

Please STEELE continue to pray.  This is our baby sister!