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!

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.

Being Carried…

 I wanted to make Tina’s birthday and her party completely about her.  I felt we all needed a reprieve from ALS.  I wish that Tina and could enjoy a true reprieve.

When we were pastoring, a lovely man in one of our churches use to say,”Life is hard and then you die.”  As a young mom with two sweet children and a wonderful husband, I thought that was a pretty negative statement.  Then life happens..I have thought of Vern’s statement over the years.  Life has thrown a lot along our way.  Life hasn’t always been easy and many times seemed far from fair. I have tried to rise above the negatives and have sometimes succeeded and sometimes have ended under the covers crying. Yesterday was one of the days that I needed the covers and Kleenexes.  I wanted to be there for Tina’s birthday because we really don’t know how many more she will have.

********

Tina has lost all muscle in her arms.  She has lost over 25 pounds. 

“The Lord replied, my precious Tina, I love you and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, it was then that I carried you.”

Perhaps Tina isn’t STEELE standing but rather STEELE being carried by Her Lord.

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!!

Broken Heart to Broken Heart

  Jenn iscurrently working on the application process to a long term facility.  It's been a hard month.  It's actually "been brutal."  Every time Tina has a back spasm, she wonders what else in her body is shutting down. 

Tina knows that things can't continue the way that they have been going.  There have been great people that have been helping but there is never enough.  There needs to be at least two people to help with Tina now.  They continue to struggle with PSW's not showing up.  This causes a lot of anxiety to her when the scheduled shifts of homecare workers don't arrive when they are supposed to be there.

Tina came to the conclusion that they need to apply to a long term facility.  They were trying to prepare themselves for this decision since the day that she was diagnosed.  They had expected it to come much later than this.  

Tina doesn't want to be read to or to watch tv.  She barely feels like talking.  Her days are filled with sleeping or sitting quietly with her eyes closed.  Her attention span is very short and so is her tolerance for most things.  

Tina started new meds and it is the hope that these will give her back a little spark and take away some of the anxiety that has caused her to be so nauseous.  Today was the first day in two weeks that she hasn't had a panic attack.

The occupational therapist was advised with how quickly things were progressing.  She was shocked at the speed that the ALS was moving.

The nurse has ordered the catheter and that is the next step for Tina.  She continues to need IV daily to keep her hydrated.  A feeding tube has been discussed with Tina for the future.

So here we are...Tina has picked their top four choices for the Long Care Facilities.  They can pick up to 5.  In order for the process to be expediated, they need input from the professionals that are aware of Tina's fast moving condition. Tina's nurse and family doctor understand the urgency for a care facility.  They need input from the neurologist.  He hasn't been returning their calls.  Tina was told that this was the slow moving ALS.  In less than 8 months from diagnosis, she has lost all of her mobility and this disease has taken over so much.

Once the application is completed and the choices are submitted, they will need to accept the first opening.  If it isn't their first choice, Tina can be moved to that facility when space is available.  (This is so hard for me to type...how can I be talking about my sister needing this type of care?....our hearts are broken.)

This post has taken so long to type....how do I tell you all we have gotten to this stage?  We know that this step is necessary for Tina's care and important for all the caregivers that haven given so much love, time and attention to Tina.

Please pray that the right care facility opens for Tina.  We need a smooth transition.  Please pray for Tina as this will be a hard move for her.  Pray for the boys....this isn't what they wanted.  Pray for Mom and Dad...no one ever wants to see their daughter go through this.  Please remember Carol and I in your prayers...this is so hard.  Pray for Jenn and especially Emma who has been there for Aunt Tina.

We are STEELE here....leaning on you and each other.... 

Another Hard Day

Mom had gone to Tina’s last night to check on her.  Tina wasn’t even talking.  She had thrown up a couple of times and was on IV.  I shutter when I think of Tina being sick.  How does a person do that without choking when they have no control over their body.

This morning, Carol was able to talk to mom and Tina for a few minutes.  Homecare had been there and Tina had been bathed and then they did exercises.  Mom was able to get Tina to eat a muffin and some instant breakfast.  She doesn’t need IV today.  She was feeling a little better but looked pretty tired so the conversation was short.

Our hearts are heavy but we hold onto any positives.  She ate.  Carol was able to have a short virtual visit. She was able to have a bath and get her exercises done.

We are STEELE Standing…

Casey just sent me this message and I wanted to share it here:

Good morning 😊 saw Tina yesterday. You've probably heard, but in case you didn't she had a rough night up till 3:00 in the morning puking. I think from a McDonald's chocolate milkshake that she was craving at bedtime 😄

I was trying to be there for 8:00 so your mom could have the day off and I could help get her up with the PSW, but apparently she had been texting me to come a little earlier but I didn't have my phone on, she really needed to pee! But I did get there in time 😀

Had to take the morning really slow because of a gag reflex and still feeling nauseous from throwing up. So no morning routine but did manage to eat half of one of your mom's chocolate chip muffins and some chocolate milk. Her eyes were quite puffy and runny, which she says is pretty common in the morning. She was feeling bad that she was poor company for the PSW and I (shaking my head) she also had a headache 😟

I stayed until around 10:00 when her friend Kate arrived, we toileted her and she seemed to be in better mood by then. 

We shared a few memories,  one of which was a party in your parents basement and someone, can't remember who- Brad maybe? Asked Dennis C for a Pop Shoppe - Dennis asked what flavor? And "surprise me" was the answer, he was gone for like 15 minutes and came back saying he couldn't find that flavor 😄

Praying for her healing 🥰

Thanks Casey for sharing and for being there for Tina! ❤️

He's STEELE Standing

The patriarch of our family turns 86 today.  Dad is celebrating his special day in style....going to Denny's Restaurant.  

Dad retired from work 16 years ago after a long career with Dupont.  He said at that time that he wanted to get out of there to enjoy life after work and he did.  A number of years later, he suffered a couple of heart attacks but even that didn't seem to stop him.  He has slowed down the past few years with his legs giving him trouble.

Dad was called "Sparky" growing up.  He always had lots of energy.  In his younger years, he played hockey and mom was there to cheer him on.  I have heard lots of stories about the purses coming across the boards when dad would check someone close to where mom and her sister were sitting.  I think mom might be the reason that they put plexiglass around the rinks now.

When we were young, dad was the one that would organize a baseball game in the backyard for the neighbourhood kids.  I will always remember him shouting to one little guy on third base to run home and the boy took him literally and took off home (to his house).

On hot days, he would come home from work and tell us to get changed.  We would hurry to get our bathing suits on and head to the local quarry for a swim to cool off. 

In the winter, he would shovel some of our back yard and water it regularly so that we could have our own ice rink.  I remember once him even building an igloo.  He was always kind of a big kid.

He enjoyed travelling up to about 13 years ago.  They travelled by plane, car and motorcycle seeing Canada from coast to coast. 

He is now known as Papa to lots of grandkids and great grandkids.

Happy Birthday Dad from The Sister Three!

I was pleasantly surprised this morning when talking to dad that my ipad rang and it was Tina.  We haven't been able to do our regular chats because of Tina being sick.  

Carol didn't make it on this morning and the chat was very short.  Tina just wanted to let us know that her emotions are out of whack.  While she was sick, before going to the hospital, meds were overlooked and now she needs things to regulate.  She is doing better physically but emotionally is not doing well. 

Emma is back at her side to help out.  Today the homecare worker came in the morning and respite was soon to arrive.  The nurse was coming to check her vitals.

Please continue to pray for Tina.  This is a journey that no one wants to take.  

Tina is STEELE Standing....she just needs a little more support.  Thank you for supporting Tina and our family in your thoughts, prayers and generosity.

Note:  If you leave a comment on the blog and you would like to have us know who you are, click on the down arrow beside anonymous and choose Name/URL and then enter your name.  You don't need to put anything in the URL.  We will then be able to put a name to the comment.

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!  

Surrounding Tina With Prayer

Mom called me this morning in tears.  She said that Tina wasn't feeling well.  She has had a very rough week with two trips to the hospital and still feeling horrible.  Tina asked for everyone to pray.  She asked that people come around her house and offer up their prayers.  

Mom continued to call people and I reached out by messaging people to pray.  I've got a busy day ahead of me with Sarah's 13th birthday but I felt that I really needed to send this post out to ask people to pray and to share some comments.

I won't mention any names but thank you for thinking of us and praying for Tina.  It takes an army.

"Oh Penny, I am so sorry!  You can count me in.  God has already placed you in my heart and I do pray for you and all that you shared with me."

"For sure I will my friend. I have been following your posts and praying for Tina.  ****'s brother has ALS so we feel your pain acutely.  May the peace and presence of Jesus surround you all in the days of this journey."

"Of course I will pray.  Are you doing OK?   I am praying for you too but if there is anything else I can do please let me know.?"

"Will definitely pray for Tina."

"Praying"   "Will be praying"   "Will be praying today"

"Awww I've been praying but will put out to our church group too."

"Absolutely praying for Tina.  Have lifted up up in prayer this week as I've seen the blog posts.  Thank you for keeping us updated. I'll be praying today for Tina and all of you."

"Awww shoot!  Such a sad and trying time for Tina and her loved ones.  Will do and will pass on prayer request for a miraculous healing, peace and His presence fully known."

"I'm on it Penny!"

"Called people, about 20 from our church praying."

"Hi Penny I've been thinking about Tina.  I'm praying for her and send my love.  I will put a post on my wall asking prayer for Tina.  

Calling on all those who believe in the power of prayer to pray for my friend Tina Steele Tina she has ALS and has been to the hospital twice this week very sick but her faith in God is strong let's pray and believe with her that God will bring strength and healing

6Leanne Smith Butcher and 5 others

3 Comments

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"Will certainly be praying for her."

"Will pray for sure.  Thanks for letting us know.  Best to you!"

"Believing with you for healing and peace for Tina.  Our God is able to keep those we commit to Him.  Let's see faith and hope rise up and healing flow."

Thank you for STEELE praying and STEELE standing with us.

And Another Trip to The Hospital

The nurse came today to check on Tina and found her very lethargic and called the ambulance.  Two trips in two days to the hospital.

They, once again, gave her two bags of fluids intravenously and then sent her home.

Emma is with Jenn now but will be back with Tina tomorrow.  Emma brightens Tina’s days.

We are STEELE Standing.