Christmas in heaven

I see the countless Christmas trees
around the world below
With tiny lights, like Heaven's stars,
reflecting on the snow

The sight is so spectacular,
please wipe away the tear
For I am spending Christmas with
Jesus Christ this year.

I hear the many Christmas songs
that people hold so dear
But the sounds of music can't compare
with the Christmas choir up here.

I have no words to tell you,
the joy their voices bring,
For it is beyond description,
to hear the angels sing.

I know how much you miss me,
I see the pain inside your heart.
But I am not so far away,
We really aren't apart.

So be happy for me, dear ones,
You know I hold you dear.
And be glad I'm spending Christmas
with Jesus Christ this year.

I sent you each a special gift,
from my heavenly home above.
I sent you each a memory
of my undying love.

After all, love is a gift more precious
than pure gold.
It was always most important
in the stories Jesus told.

Please love and keep each other,
as my Father said to do.
For I can't count the blessing or love
He has for each of you.

So have a Merry Christmas and
wipe away that tear.
Remember, I am spending Christmas with
Jesus Christ this year.



*This poem was written by a 13 year old girl named Lysandra Kay Bencke
Lysandra had a seizure and was in a coma for five days before she died
on the anniversary of our Lord's birthday, Christmas Day 1997

Christmas...

Merry Christmas to all of you who still visit this blog. And I know you do. It means a lot to me! Christmas is one of the hardest times of year for those that are mourning... Everyone else is happy, getting together with family and friends, celebrating, eating, and you just want to sleep till January 1st. This post is just a little reminder to pray for Maynard and Faye and others you know who are sad this year... It's especially tough for Maynards because last Christmas was scary and it's always in the back of your minds, "This time last year..."
Thanks for all the support, prayers, comments, in the last year.
Natalie

A year ago...

We were waiting in suspense and Andrea was in surgery. Every phone call made me jump and every minute that went by made me more tense. It's hard to believe it's a year already... I would give so much to sit and talk with her for an afternoon- theres so much to say.
Miss you, Andrea.

Lonesome Moments

Lonesome moments hit at the strangest times...
lying in bed at night
Sunday mornings at church
mid-math class
singing with new friends
talking to old friends
making cookies
at the end of a long day
the beginning of a new day
reading in my diary (a year ago I went to see her)
seeing one of my students do something she would have loved
They hit and leave you reeling, the empty Andrea-shaped spot in your heart throbs, your eyes water, you frantically wipe away the tears and pretend to smile. "I'll cry later," you say. Then one day "later" comes and you can't push the tears off any more. The tears flow, healing the Andrea-spot a little and you can go on.
Until next time.

New Memory

There's a new memory on the page. Thanks!

9th Heart Birtday

Maynard and Faye were over for supper and Faye quietly said that today was Andrea's 9th heart birthday- her last heart transplant was 9 years ago... It was a hard day for them because they always celebrated this day, going out for lunch or something, and for years she collected little china dolls, one a year to mark the day.

Pray for them earnestly. All these painful "firsts" are wearing them out.

More Memories Received

Thanks to all of you who have sent in more memories. Fay asks me often if I've got more and I love it when I can tell her that, yes, more have come in! Because the page is getting so long, I'm starting to put any new memories at the top so they're easier for you to see. (I'm out of people to beg for more, if you know of anyone, tell them to email them to memories.of.andrea@gmail.com. If they aren't typists or don't have email, email me and ask for my fax number or address, I don't want to publicly post them but I will share them via email.)

Oh, and I got that thing we were raising money for but Maynards are off on a trip so I haven't got it to them yet. It's even more beautiful in real life! The extra money I donated to the Ronald McDonald House Edmonton as that was Maynards' wish for any memorial donations.

Smile Train

Through losing Andrea, I've gotten to know another woman who lost a daughter about the same time Andrea died. We've emailed and texted back and forth and I got an email from her today with this message that I want to share.-

Hi... when we lost our little angel, we also lost a beautiful smile. A smile we wish we could see again. A smile we can only see in our minds. We knew we wanted to set up a memorial for our little girl.

One day over the funeral, we remembered a place that fixes children's smiles. Fixes cleft palates. The feeling was strong that we set up a memorial in honor of Lauren. In memory of beautiful smiles. So that other little children can smile too.

Thus the creation of this online fund with smile train.

You don't have to donate. It is entirely up to you. We have a goal for 13 smiles for 13 months. If you know of anyone who would like to donate, please pass this email on. The address is:

http://support.smiletrain.org/goto/laurenyvette

If for some reason you can't get on here, plese let us know.

Thank you in advance.

Jeffrey and Delilah Schultz

How Do You Ever Say Goodbye

(This feels a bit strange for me to do this but) last December, the 15th to be exact, when Andrea didn't die after all, I wrote this poem and I thought I could share it... Just a few notes and explanations before I begin, there is a better version of this poem, a more edited one, only it's tucked away and not to be found. This one is nearly straight out of the notebook it was written into. Little Andrea was a fun name I had for her, I had her in my contact list as Lil Andrea and when she turned sixteen, she was determined to change it. So she changed it to Andrea Froese and I took it away from her and entered it as "Andrea Little Froese". It's still like that. That last little Froese is kinda a pun-ish joke, word play if you will, little phrase/little Froese. Just jokes we had. Here goes.

How do you say goodbye to a friend?
I told her I'd love her to the end.
I know she'll be in a better place
But, oh! I will miss her dear little face!!
She's always been little Andrea to me
Or "that last little Froese" that I loved dearly
We've had hours of talking and hashing things
We talked about life, joys and sorrows it brings.
We were gonna grow old and always be close
And of all my friends, I told her the most
Of my dreams and wishes, we'd laugh and we'd cry
How do I ever say goodbye?

Dear Father in heaven, when you meet my friend
There's a little message I want to send
Tell her I love her, always will
When we're both in heaven, I'll love her still
I can't wait to see her, healthy and strong.
We'll be friends forever, eternity long.

I all at once remembered this poem the other day and it comforted me and it seemed like the right thing to do to share it. Keep praying for us all. We miss her so much.

More Trials For Maynards

To all our dear friends and family

This posting is to inform all of you who may not have heard the news of the accident in which Faye's parents were involved in on the 8th of June. Early this morning the tenth day since the accident, Faye's mom passed on to her reward, having sustained very serious injuries in the crash.  Faye's dad and the other vehicle driver involved, both suffered only minor injuries.  We traveled to Saskatoon on Thursday, arriving there mid afternoon. Faye was able to spend several hours with her mom, and although in a lot of pain she was fairly clear, recognizing Faye but not able to communicate very well.  That evening she started failing more and Friday her vital signs began changing, her lungs began filling with fluid and they had to increase her pain medications.  We left Saskatoon yesterday about 5:30 PM, arriving home at 11:20 or so.  At 5:15 AM  the phone rang and we were informed her mother had just passed away.  She had a birthday May 31, reaching 79 years.  Most of the family got together in Regina on May 29 to celebrate.  We plan to return there tomorrow morning, thinking the funeral might be on Tuesday.  Please remember us in your prayers.

Thanks, Maynard

 

Donations Received

Thanks to all you for your donations for the wall sticker for Maynard's. I've already ordered it. However, I received roughly twenty dollars more than I needed for it, any suggestions what to do with the left-over? If I don't get any suggestions, I will just give it to Maynard's to spend as they wish in memory of Andrea.

Once again, thanks so much!

Natalie

PS I can't resist adding a little note begging for more memories. I am trying to make a book of memories to give to Maynard and Faye but I don't have enough yet. Absolutely any memory is acceptable. Please send them to memories.of.andrea@gmail.com and if you are not comfortable with them being posted on the page, please specify.

I Had This Idea

and I have no idea if it's cool or lame so I'm coming to you. If your name is Maynard or Faye Froese read no farther because if it's a cool idea, it's something for you...

Jen makes this awesome sign that made me cry the first time I read it. http://www.etsy.com/listing/72373855/because-someone-we-love-is-in-heaven?ref=ss_listing

I was wondering if you thought it would be a good idea to buy it for Maynards from "us". By "us" I mean all their followers and friends on this blog. I'm going to set up an anonymous poll to at the bottom of this page (please vote) and if most people like the idea, I will set up an anonymous Donations button through Paypal so that your money is safe and once I have enough I will remove the button and buy Maynards the sign from all of us at "We Love Andrea". Please leave your opinion on the poll at the very bottom of the blog.

More Memories Needed

I hate to be a nag but here goes... We really need more memories of Andrea. I want to put together a book of memories for Maynards and I don't yet have enough. I do understand that it takes time, and, as most people say, they don't have any specific memories of her and she hasn't even been gone a month. That is totally okay. From talking with Maynard and Faye lately I have discovered that the little memories of her mean as much or more than the big ones, things like "This was something she liked" or "Once she said this" or "We had a joke about that". It's those little things that make up what we know of a person and I promise that nothing you send will be too trivial or silly! And if you want, I won't even post it on the blog, just send it to Maynards without lots of other people seeing it. For those of you who have forgotten, the address is memories.of.andrea@gmail.com and if you need something to jog your memory, read other people's memories. (Done nagging now!) Thanks and have a great Sunday!

One of those days...

Some days I can go the whole day just thankful that Andrea is at peace and that she has no more pain. Other days, I just want to see her again. This is one of those days. What I miss most about her is talking to her, we spent so much time talking! Now, whenever I have something confusing or exciting or just interesting, I want so badly to be able to tell her, to hear her laugh and say "Cool" like she always did, to hear her sympathize or make me laugh at myself which she did a lot too! It so hard to believe we will never see her on this earth again... Not sure why I'm posting this here, maybe because misery loves company and I know for a fact I'm not the only one who feels like this, who misses her and can still hear her laughter echoing in my head (and is so scared that laughter will fade away). For all you out there who are feeling the same way, I don't have anything profound to say but we gotta stick together and support each other!

Miss Me–But Let Me Go!

When I come to the end of the road
And the sun has set for me
I want no rites in a gloom-filled room.
Why cry for a soul set free?

Miss me a little–but not too long
And not with your head bowed low.
Remember the love that we once shared,
Miss me–but let me go.

For this is a journey that we all must take
And each must go alone.
It's all a part of the Master's plan,
A step on the road to home.

When you are lonely and sick of heart
Go to the friends we know
And bury your sorrows in doing good deeds.
Miss Me–But Let me Go!

Edgar A. Guest

In memory of Andrea whom we all miss but who we also must let go, even if it's the hardest thing we will ever do...

Today Would Have Been Her Birthday...

Today would have been Andrea's 17th birthday (it's also a week since her funeral). She wanted so badly to be home by her birthday. But I guess she is... This is just a prayer request for all the family, friends, etc for whom today will be a tough day...

It's Been a Week

Today it's officially a week since Andrea died. It's been weighing quite heavily on my mind. And I can only imagine how Maynards are feeling. This is your reminder to keep praying. Andrea was the centre of their universe for the past 7 months or longer, their days revolved around how she was doing. To suddenly lose that "centre" would leave a huge hole behind.

By the way, thanks so much to all of you who have sent in memories, the page "The Life of Andrea" is really taking shape. I want it to be a long page though, keep sending.

Natalie

I can't wait...

This weekend, hanging out some with Andrea's cousins and hearing stories about her, I thought of about a thousand things and I think "I can't wait to tell Andrea that!" and then the next minute it hits me... She isn't waiting at the hospital for a rambling email from me, or a phone call, or a visit. She's in heaven... It made me sad every time, until I had this great thought! What if, as she's running around heaven, visiting with my grandparents and aunt and other friends who have died, she keeps thinking "I can't wait till Nebs gets here and I can tell her about this!" It's gonna be a grand old discussion when we are reunited if we're both storing things up to tell each other!

The Life of Andrea

May 23,1994-May11,2011
In nearly 17 years of life, she made a lot of memories. I have created a new email account where you can email me (please include your name and any other relevant information) and tell me your memories of her. Then I will post them here; Maynard and Faye read this blog and they will love to see your memories as well. These memories will be posted on the link above (see where it says "home" and beside that "the life of Andrea", click on "The Life of Andrea" to get to them.) I would like to have quite a few memories by May 23rd, the day that would have been her 17th birthday.
memories.of.andrea@gmail.com

Obituary

Click on any of the four pages to enlarge them.

Funeral Plans

The funeral is Monday at 11 in the "Church of God in Christ, Mennonite" near Edberg, Alberta, located 2 miles south of the 4 way stop in Edberg. If coming from Edmonton take highway 21 south all the way to the secondary highway 609, turn left and go east for about 12 kms to the 4 way stop, turn south onto a gravel road go 2 miles south till the first intersection, turn left and the church is right there on the left.

Andrea passed away at quarter to ten this morning. The battle is over and she's resting in Jesus' arms.

Just Keep Praying

I'm not sure what to say here... She's in a lot of pain and isn't doing great otherwise either. Maynard and Faye and Jeff and Twila need a lot of prayers. They're facing things no mother, father, brother, or sister(in law) should ever have to face, but they don't have to do it alone. Lets pray that God will comfort and direct them.

Sever Pain

No update this morn but there was a quick alert phone call last night requesting prayers as she has severe abdominal pain.

You've received a Message from a TELUS phone. For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap. If you don't hear or see the file, download the Quick Time player.

Vous avez reçu un Message d'un téléphone TELUS. Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic. Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

"Pain-filled Day"

Good Evening

 

Another long day at the hospital has come to a close, back at RMH now, Andrea was not asleep when we left as she usually is.  Today was another pain filled day for her, Codeine does not agree with her and so her stomach bothered her a lot, headache seemed more intermittent today.  They were more prompt with pain medication and so she slept most of the day off and on.  Consequently her blood pressure was on the low side which also contributes to fatigue.  We did have her sit up on the edge of her bed for 5 minutes, long enough to brush her teeth and comb her hair.  She seemed a bit more upbeat than yesterday too, which is a good thing.  They also did a run of plasmapheresis today, her plasma free hemoglobin number was a lot lower than yesterday too which is a good sign.  Tomorrow the plan is to do another run of plasmapheresis again and hopefully her plasmafree number will stay down.  Tuesdaay they plan on starting her on heparin again so will have to see how that goes.  Now it is late so goodnight.

 

Thanks, Maynard

Headache Better

Good Evening

 

Today was relatively unchanged from yesterday, Andrea did say though that midafternoon she had no headache for a little while.  She also scales it at 6 out of 10, before it was always an 8 out of 10, could be that her pain management is being handled a little better.  When her headache is at it's worst it seems to make her nauseous, but not usually throwing up.  Today she was asking when she could go back upstairs to the ward that she was on earlier.  She is much more alert and awake now, but is also more affected by her situation.  There is lots of time to think and she cannot avoid that either.  If she was feeling better we could interest her in some crafts or something, but her headache is too bad for that.  They also did plasmapheresis today, and is scheduled for another run of it tomorrow.  Hopefully her plasmafree hemoglobin number comes down and stays down.  Well it is late so goodnight.

 

Regards, Maynard

Not Very Good Day

hi Everyone

 

Andrea did not have a very good day, although the pain in her head was a bit less, some medications have been switched around again, she has been getting pain killers and from previous times they don;t agree with her stomach too well.  Last night's power spike must have chewed a bit of the clot loose in her pump, after running it fast for awhile and then slower again, it settled down and I don't think it spiked again seriously since.  This morning's blood test showed that her plasma free hemoglobin number was quite high again confirming that a clot let loose, her pump chewed it up and the plasma free number went up, so she had a run of plasmaphoresis in the afternoon, so hopefully tomorrow her test will show acceptable numbers again.  Pt had her sitting up on the edge of her bed in the morning and this afternoon we had her up again.  For the first few days in CVICU she lay so still and hardly moved around in bed, now she seems a lot more active again which is good.  Sure hope her headache starts diminishing faster and she needs less pain killer from here on.  Please remember her in prayer, that her courage and hope can be increased.

 

Thanks, Maynard

Walking a Fine Line

Good Evening

 

Today Andrea's headache seemd a little less severe, she had another CT scan which indicated that her bleeding had stopped in her head.  The biggest danger right now is that she is getting no heparin to thin her blood and that increases the risk of another clot in her pump and if it breaks free where it might go.  They cannot reintroduce heparin for a few more days to give the blood vessels time to heal, so it is a very fine line to walk.  Tonight she was having power spikes from her heart pump so they changed the speed setting of the pump to increase circulation, sometimes just changing rpm settles things down.  It was hard to leave her for the night but we also need sleep too.  Please pray especially for Andrea it seems like a long road for her to take.  Now it is time to sleep at least if sleep will come.

 

Regards, Maynard

"Basically the Same"

Good Evening

 

Today was basically the same as yesterday, headache pain unchanged, not really less or more.  PT was in today and exercised her limbs in bed, then got her up sitting awhile and then stood and sat down 3 times. Later on OT came in and we got her up in her wheelchair where she sat for 1.75 hours and without being too uncomfortable.  I was pleasantly surprised when I helped her stand and move over to the wheelchair at how much strength and coordination she had, seemed better than expected.  We'll just have to see how she does, and only take one day at a time, which is all anyone has.  I've run out of inspiration and will have to close or else I will repeat myself.  Goodnight.

 

Thanks, Maynard

Bleeding Around (not in) her Brain

Good Evening

 

Today was not a good day for Andrea as her headache continued, maybe a little worse than yesterday.  When the pump doctor found out about it today he right away ordered a CT scan of her head and found that she has bled between her skull and her sack that surrounds her brain.  It likely has only seeped there and the reason being that in trying to control her pump clot her heparin level went too high.  In the late afternoon the pediatric neurosurgeon came in to see her and asked a lot of questions.  He also said that they see quite a lot of this problem in patients who have had heart surgery and are on blood thinners, so it is a fine line to walk to control and balance it out, and is extra challenging when the patient has a device installed too like Andrea has.  He said right away that he was not too concerned from a neurology point of view, 5% of patients with this problem require surgery to fix it, but he did not expect that in her case, in reviewing her CT scan he saw that she has had 2 bleeds one a week or 10 days ago, which coincides with her high heparin level at the time and again yesterday morning when her heparin level went up and they stopped it for awhile.  Unlike Coumadin another blood thinner, heparin has immediate effects and also disappears just as quick, so now they will watch heparin levels very closely.  The danger is that she may develop a serious clot in the pump, her pain is expected to persist a few days in her head maybe a week or so as the body reabsorbs the clots in her skull.  They are monitoring her very closely, every hour they will wake her up, check her pupils, ask questions like her name, the current month, where she is etc.  So far she is completely clear, answering questions promptly and correctly.  They are also watching for her reflex actions and whether she has strength in her hands and feet also.  The pump doctor was relieved that her pain came on so slowly and has not increased a lot indicating that she has likely only bled very slowly.  Fortunately it has not bled inside her brain, which would be much more serious.  The pump doctor said he had patients before with this problem, and so far they have always cleared up.  Please pray for a miracle for our dear daughter, she desperately needs a break and a turn around, although she does not seem discouraged and understands her situation well.

 

Thanks, Maynard

Back on 24 hour dialysis

Good Evening to all

 

Andrea is still in the CVICU, likely will be there a couple more days.  They put her back on the 24 hour dialysis again this morning, they think she has a little too much fluid on board yet, so will have to see how it goes.  She complained about headache a lot today which is a bit unusual for her, she hardly ever has headaches at all.  I think it is partly because she did not get enough sleep last night.  Otherwise her blood numbers are not too bad, certainly improved from a week ago.  She was asleep when we left tonight, hopefully she sleeps well this night.  Still not sure whether her clot is gone or not, her pump numbers are a little on the high side, not to the point of doing anything drastic about it yet.  Don't know what else to report so goodnight.

 

Regards, Maynard

"Normal" Dialysis Resumes

Good Evening

 

Andrea's day was similar to yesterday, awake most of the day, not sure whether she actually slept when she was to nap or not. Her plasmafree hemoglobin number was 53 yesterday morning,83 this morning and this afternoon 93, so it has gone up only marginally since her last plasmaphoresis on Friday.  She was up in the wheelchair and later on sat on the edge of her bed for 15 minutes.  She needs to keep on moving so that she does not lose more strength, we can see that she has not gone forward in that area this last 10 days or so.  Today her continuous dialysis was stopped and tomorrow she will get the regular hemodialysis in her room.  If she tolerates that well and other numbers are normal enough, she should move back up to the ward in the next few days.  Until next time, Goodnight.

 

Regards, Maynard

better day

 

We are very thankful to report that Andrea had a better day today, very alert and awake, had an hour nap in the late afternoon.  The best news was that her plasmafree hemoglobin count was down to 53 this morning from a high of 2500 a week ago.  50 and less is normal.  Hopefully it will stay down, if it does, it would indicate that maybe her clot has cleared up.  She sat up in a chair for half an hour this morning and for 5 minutes on the edge of her bed this afternoon and nearly `15 minutes tonight.  Faye was looking over the emails I posted this last week and pointed out that I had not mentioned that Andrea tested positive for strep throat 8 days ago.  her pump doctor thinks that it is likely the reason for the clot, it is the natural response of the body to fight infection this way.  She also was quite pain free today and not asking for pain killer, and says she is not nauseated or in stomach pain.  Hopefully her nausea and stomach pain are gone for good, if that would be possible she might make faster gains for recovery.  Now it is late so I had better close, goodnight.

 

Regards, Maynard

Slept Most of the Day

Good Evening

 

It is late so this will need to be short.  Andrea slept most of the day due to the dilaudid dose she got.  She is still on the 24 hour dialysis machine called  Prisma.  Now it is a waiting game to see what happens to her plasma free hemoglobin numbers, so far they are not spiking as high as they went a week ago.  Her liver enzyme numbers have also improved, although they are not all where they were before, we will know better after the weekend.  She sat up on the edge of her bed for 10 minutes twice and tonight we had her up in a chair for awhile, hopefully tomorrow will be better.  The pink has returned a little to her cheeks, and she has not been having the stomach ache and nausea she had a week ago.  The concern is whether there is still a clot remaining in her pump or not and there is simply no way of knowing for sure, the blood numbers combined with how she is clinically, and what  her display screen of power usage says, will decide what is really taking place.  I know this is sounding confusing so I'd better stop.

 

Goodnight, Maynard

Feeling Some Better

Good Evening

 

Andrea is still in the CVICU, feeling about the same as last night, maybe a little bit better.  She had plasmaphoresis today because the plasmafree hemoglobin number had gone back up again.  It's kind of a waiting game to see if that number will go down and stay down.  That would indicate that there is no clot, all the CT scans ultrasounds etc come back negative.  Had her sitting on the edge of the bed twice today, tonight was much better than this morning.  Hopefully they can soon find out what is going on with her and get some help.  She is back on full feeds again and tolerating it well, don't know what else to report so will close, goodnight.

 

Regards, Maynard

Pain is better

Good Evening

 

It is late so I'll be brief.  Andrea's day was a little better, the terrible pain she experienced last Friday seems to be gone, but it seems to have taken it's toll, combined with her tube feeds being shut off from last Thursday till Sunday night have made her weak.  Her blood numbers are not quite where they should be and the display screen the for pump seem to reflect that.  The power draw is a little high at times and combined with the other values, it seems like something is amiss.  Hopefully this stuff resolves itself shortly and if there is a clot someplace that it clears up quickly, she needs a break.  Please remember us in your prayers.

 

Goodnight, Maynard

Slept Most of the Day

Good Evening

 

Well Andrea had another day in the CVICU, not just where we would like her to be and not the kind of recovery we were hoping for, yet there have been some small advances in her situation.  Today after the plasmaphoresis treatment her plasma free hemoglobin number was down to 164 from a high of 2500 on Friday, normal is less than 50.  Not sure what the lactate number was but i think it is improved, her bilirubin is up over 200 again, an indication of stress to the liver.  The other blood values I don't know about, I think in general they were improved.  She slept most of the day because they gave her 3 doses of Fentenyl a pain killer at night and another one again in the morning.  For her liver's sake she should not have gotten any, so we will see what they do about pain medication tomorrow.  We hope she will sleep through the night as she slept so much today.  CT scans don't show anything anywhere, her blood vessels in her liver all appear clear and no sign of a clot anywhere.  Don't know what else to report so will close, goodnight.

 

Thanks, Maynard

Better

Good Evening

 

Andrea had a fairly quiet day in CVICU today,dialysis was run all night until noon, then plasmaphoresis was run for an hour and a half and after that she was free of both machines.  Her free hemoglobin numbers came way down from where they were and are a lot closer although not normal yet.  Tomorrow they will reassess this part of her care and decide whether they need to run the plasmaphoresis again.  her tube feeds were restarted again this afternoon and she is now back on full rates again. It seems that she has lost some strength, afterall she has not had any calorie intake since last Thursday.  Her blood pressure has also improved and the pump numbers looked better again.  We still are a bit concerned that she might have a small clot someplace yet, don't really have any basis for thinking that though.  She did not sleep much today, but lay with her eyes closed a lot so we think she will sleep well tonight, at least we hope she will.  Please remember us in your prayers as we are in uncertain times it seems like.  Goodnight.

 

Regards, Maynard

Getting Better Again

Good Evening

 

Just returned from Andrea''s bedside, she was nearly asleep when we left, Faye is not staying in the CVICU but is coming with me for night.  Her blood numbers have returned to normal for the most part, yesterday and today they used a process on her called plasmaphoresis which I will try to explain what I know of it.  It is similar to dialysis using the same process but it takes out the plasma free hemoglobin, that is the damaged red blood cells that are contained in the blood plasma.  If the kidneys don't work there is nothing to filter out the damaged red blood cells which in too high levels are toxic.  The pump rotor is always damaging a negligible amount of red blood cells which are removed by dialysis, but if a clot forms it also contains red blood cells and they are damaged, so when the clot moved and they think migrated to the liver, it causes the liver enzymes etc to shoot up.  Maybe this is not exactly how it is, but this is my limited understanding of how it works.  By morning her lactate levels were back to normal which had been a big concern.  She rested peacefully and seemingly without discomfort today, her color is much improved, the pink returned to her cheeks, her eyes seemed clearer too.  They will do another round of plasmaphoresis tomorrow and reassess where she is at. If everything looks okay she will likely return to the ward in a few days. So far they are holding her room upstairs for her as we have a lot of things in the room and they still have empty rooms there and have been short staffed too.  Today the church youth group brought their Easter program in the Healing Gardens at 3 PM, so her nurse got her ready for transport and we took her up there in her bed to hear them, she really enjoyed it and afterward a lot of them came up and spoke with her awhile.  Tomorrow I think PT will want to work with her again so she does not lose the strength she had regained.  Now it is time to close so goodnight.

 

Thanks, Maynard

Explanation of what happened

 

Sorry for not posting last night, but Andrea crashed yesterday and the decision to move her down to CVICU was made in the evening to move her down there when they discovered her blood numbers were way out.  Some values were 10 times higher than normal and a few critical ones were very high also.  I have reported how she was struggling with her feeds, a lot of nausea and stomach pain, well yesterday morning after a bad night previously it got much worse, her violent retching and gagging seemed to come out of depths unknown.  It got so bad she was moaning and groaning and crying, saying she did not see how she could live like this.  Finally they gave her 5 mg of morphine and it still took over an hour before it took effect and she fell asleep.  Even then she moaned and groaned in her sleep, tossing and turning, but managed to sleep most of the afternoon.  They came to draw blood from her pic line in her arm and soon had the results which were so unbelieveable that they pulled a sample from her perma cath for doing dialysis, same results.  Then the doctor ordered a poke in the arm from a new site thinking the first 2 might be somewhat contaminated from running medications through them, but results the same.  Then they got worried and moved her down to the CVICU around 9:30 PM and started her on an number of different medications to restore the electrolyte balance etc.  By around 3 AM the numbers had improved a lot, she had a CT scan without the contrast dye and was on continual dialysis.  We finally left her room around 3:30 AM and went back to her room on the ward and managed to sleep a few hours.  She did not sleep more than an hour all night the nurse told us in the morning.  Miraculously her pain had mostly disappeared by the evening and when her pump doctor came in he said with those kind of numbers she should be much sicker, and he could hardly believe her pain and nausea were almost gone.  This morning she had an abdominal ultrasound but they could not find anything unusual.  The CT scan also did not show anything either.  The only conclusion they can reach is that her pump must have had a clot in it that had moved to her liver maybe partially blocking it or something, causing her the intense pain and her blood values to shoot sky high.  Appaarently a clot can form in a place in the pump where the rotor does not touch it so it spins merrily on and the computer screen really does not show a severe power spike or the flow per minute numbers change much, yet the body is deprived of circulation causing pain.  The interesting thing is that today she began to ask to drink which is very unusual the last weeks, we could hardly tempt her with anything at all to drink, she just was not interested.  Now today it seemed she could hardly get enough fluids and without nausea, to satisfy her cravings which is a very good sign.  When we left to come back here for night she was nearly asleep and resting peacefully.  O yes this evening she had another CT scan using contrast dye which gives a much better clearer image since it shows up everything better, the intensivist just wanted to be sure there was nothing being missed.  The results of that seemed good also.  Now it is time to sleep as we have hardly slept at all the last 40 hours or so.  Goodnight.

 

Thanks, Maynard

Slightly Improved

Hi  sitting with Andrea in CVICU. Pain mostly gone CT scan results negative so far though they did not use contrast dye so images maybe inconclusive. Strep throat painful maybe contributes to problem. Must have been a clot in pump or someplace blood test results mostly improved  Andrea is alert talking although she slept little at night hopefully a short stay in CVICU  now thirsty good sign

Terrible Pain, Back In CVICU

She's back in CVICU tonight. Pain beyond belief in AM she said could not go on living like that. Big morphine dose finally knocked her out, moaning in sleep. Pain broke resting peacefully now. Blood numbers way out now. Something moved maybe a clot or a stone. Waiting now for CT scan.  Please pray. Maynard

Violently Nauseous

Good Evening

 

Another poor day for Andrea, her nausea is more violent and more gut wrenching than before, sometimes is bringing up, sometimes not.  It could be any number of things, ultrasound shows some gallstones present, but she is not experiencing pain like most gallstone sufferers do, still might be the problem.  The other thing is that her stomach lining might be sore for some reason, maybe it is just the flu.  The GI people were notified late this afternoon but nobody showed up and it is a long weekend too.  The blood tests all show good results it seems.  Her pump doctor is a little puzzled, but he is getting the right people involved, hopefully they can come up with a solution or she will dehydrate more.  Her night nurse thinks it is just bad flu, her gagging and wretching sure looks like that may be the case.  I see that I am repeating myself so will close.

 

Thanks, Maynard

Not Feeling Well

Good Evening

 

Andrea still not feeling good, stomach bothering today again.  Blood was drawn for a bunch of tests for infections etc.  As far as I know all were negative, although blood culture test results can take a few days to come back.  We tried to have her get up for physio in the gym but she was not up to it today.  Otherwise the Heartmate II seems to function very well, it just takes time for all the other organs to recuperate.  It could also be that she needs to have her formula changed again, there might be another one that might agree more with her stomach.  We'll have to see what tomorrow brings and hopefully she will feel better.

 

Thanks, Maynard

Continuous Feeds Again

Good Evening

 

Sorry for being late, I'll keep it short tonight.  Andrea was put on continuous feeds last night through the night, and this morning with adequate nutrition she seemed to be stronger and feeling better, although she was having bouts of nausea again.  This morning the Ot nurse came in and is teaching Andrea some life skills again, like how to sit up on the edge of the bed again, although she is not able to do it unaided at this point.  She is helping her to brush her teeth and hair again something she is even yet not able to always do.  When we went down to PT she walked 30 feet again with a walker before sitting down to rest.  After that she did some more leg excersises and back to her room.  Around 1 PM she went down for an abdominal ultrasound and xray, didn't find anything unusual.  Stopped in at the teen room a little while and then back to her room for more feeds and some much needed rest.  Tonight she battled nausea before going to sleep, we sure hope she will feel better tomorrow.  Goodnight to you all.

 

Thanks, Maynard

Dialysis Went Well Today

Hello Everyone

 

Today was another dialysis day, seemed that part went well.  Andrea's pump doctor was gone for all of last week, so when he came back and heard what a struggle it was to handle her bolus feeds, he called in the dietitician and they went back to the formula she was on before.  They are also going to run them all night and for a 2 hour stretch in the afternoon.  They were expecting that along with the bolus feeds she might eat maybe another 500 calories or so, instead it got less and less, so actually she was being malnourished.  She actually ate more before with more calories coming from her tube feeds, and still she was starting to nibble abit, and now she had completely stopped.  Hopefully this will put her back on track again, I could tell from being the only one getting her up, that she was losing strength, not gaining strength like was expected.  She did not walk in physiotherapy but stood up a few times.  If she expects to get home by her birthday on May 23, which is the goal of the care team, she will need to make some rapid progress soon.  Please remember us in your thoughts and prayers, we need them.

 

Goodnight, Maynard

Hoping For A Better Week

Good Evening

 

Just got back from Andrea's hospital room after having her here at the RMH since noon yesterday.  Hopefully this coming week goes better than the last one.  She seems to have a lot of stomach pain intermittently, comes and goes, sometimes retching and gagging without throwing anything up.  She has not eaten or drank virtually anything and says it is because she is afraid she will throw up.  We have tried telling her that we don't think she throws up from anything she has eaten, but anyone who has had suffered food poisoning could sympathize with her.  I know how it feels to get sick and throw up shortly after eating something which before was considered a favorite, sometimes after throwing up following a meal I just cannot bear the thought of eating that kind of food again.  Usually after these bouts of nausea she feels better soon so that is a blessing, at least she is not nauseaous all the time like she was earlier.  Otherwise don't know what to report except that I am very weary and so I'll close.

 

Goodnight, Maynard

Last Saturday

Good Evening

 

Today was a better one for our girl, she slept well and we brought her here around noon.  This week was not so good, her energy did not seem to be as good as it was the previous week, could have to do with drying her out too much on Wednesday in dialysis.  Last night I reported that her PIC line didn't work, this morning the IV nurse practioner came in and tried again and was able to withdraw samples no problem.  In fact she reviewed the xrays and said it is a beautiful line.  The nurse that was not able to withdraw yesterday morning is the same one who was unable to withdraw from the line maybe 6 weeks ago, so maybe it was just her bad luck or something.  Andrea has not slept at all today and is very tired, so i will sign off.

 

Thanks, Maynard

Day got better

Good Evening

 

Well the day is ending and for Andrea the end is a lot better than the rest of the day.  We don't know exactly what was off the last couple of days, maybe it was Wednesday's dialysis, but her color was not good and she felt "sick" as she put it, unable to really say what was the matter, or what was bothering her.  Tonight though, her color had improved with a faint pink color in her cheeks, and all around she was feeling a lot better.  This morning the nurse was unable to withdraw blood samples from her PIC line in her arm, so in the morning they will try putting something in there to clear it.  Another possibility is that it could be positional and in certain positions it does not work.  It would really be no surprise if the line does not work, she has had this one since before the New Year.  Hopefully it can be cleared and work again.  If the weather would only warmup and she could feel better, it would be good for her to spend time outside in the sunshine, I guess we will have to wait for that to happen.  It is time to close so to all a goodnight.

 

Thanks, Maynard

Got Dehydrated in Dialysis

Dear Friends All

 

Today was not so good for Andrea, she had a few suction events showing on her control screen, which likely means that in dialysis they removed too much fluid and she became too dehydrated.  The heart mate II is designed to perform the best in a well hydrated environment, so she got a dose of albumin and was given extra fluids to account for what she had lost.  We will be meeting with one of the nephrologists tomorrow to see if we can have one on one care, it doesn't work too well to have the whole crew of them writing orders, some of them have done that with out seeing her or knowing more about her than what they have read in her chart.  All day long she complained about feeling sick, she couldn't perform too well in physio and finally tonight around 9:30 she got rid of a lot of stomach contents and felt better.  hopefully she can sleep well and feel better tomorrow.  If after dialysis tomorrow she is feeling up to it, we hope to bring her here to the RMH for the weekend.  until next time.

 

Goodnight, Maynard

Walked 60 feet with Walker

Hi Everyone

 

Andrea had a fairly good day, went down to physio this morning, managed to walk about 60 feet again with the aid of a walker.  It sure tuckers her out though, she also did some other occupational excersises to strengthen her arms and upper body.  Tonight she ate a bit of pasta again, hopefully this soon picks up.  The weather has been cold and windy so we have not taken her outside the last few days.  If all goes well we hope she can come to the RMH for the weekend.  Don't know what else to report so will close, Goodnight.

 

Thanks, Maynard

Waiting to See What Her Kidneys Do...

Good Evening Everyone

 

Today was a good day for Andrea. although she did not walk as far as yesterday.  The PT said it is common for that to happen, muscles have been stretched the first time that are sore the next day, so she walked 30 feet with the walker and did some other leg exercises instead.  She had one short bout of nausea and after getting rid of some stomach contents and with the help of an anti nausea medication she was good again.  Her bed was changed about one week ago from the delux air inflated one she had which is designed for people who are completely immobilized, to a firmer, more conventional one.  She is enjoying this one more and sleeps much better on it and is able to sleep on her side if she chooses.  Tomorrow is dialysis again in the afternoon, hope it goes well for her.  We hope and pray for a miracle that her kidneys will function again, nephrologists don't give much hope that they will start up again, but they are used to mostly dealing with the aged, not so common for someone her age to require dialysis.  There are young patients whom we have known quite well that have recovered kidney function somewhat and get along quite well after their kidneys had stopped functioning, so we hope and pray... Today she ate a few bites of pasta her mother had prepared, and with more mobility we expect her appetite to be stimulated again.  I don't know what else to report so goodnight.

 

Thanks, Maynard

Walked with a Walker

Hello Everyone

 

Today was another milestone for Andrea and a good day also.  This morning in physio therapy, with the aid of a walker she managed to walk about 60 feet.  I was right behind her with the wheelchair and at the 30 foot mark she sat down and rested a few minutes before resuming her walk again.  Needless to say, we were very proud of her achievements, and she was very pleased with herself.  After another hour she did some OT, but she was very tired, she had about a half hour rest in her bed and then she went up to dialysis clinic for the afternoon.  She had a little nap there and tonight she actually was quite chipper again.  Slowly her strength is coming back, if we look back to where she was 6 weeks ago, she has come a long ways, if we look at where she was 2 years ago she has a long way to go.  It is best not to contemplate the future, none of us know what it holds anyways, we rejoice in her accomplishments of the day.  If things continue improving in the future days, we hope to have here at the RMH for the weekend coming up.  Thanks again for all the support and the many prayers that have been offered up on our behalf.  Goodnight.

 

Regards, Maynard

Good Weekend at the RMH

Good Evening

 

Just returned from the hospital, a little later than usual, sorry for being late.  Andrea had a very good sleep last night here with us at RMH.  Must have been about 12 hours and only awake once around 1:30 or so for a short while, slept in till about 10 AM.  Faye made dinner at noon, mashed potatoes, gravy, roast beef etc, hoping Andrea would eat some which she did at least the meat.  Got her ready and went to the chapel service at the hospital for 2 PM, after that a couple girls that volunteer here in Edmonton ( Cross Cancer center, Blood Donor Clinic, University Hospital, Ronald Mcdonald House etc,) came to visit awhile which was really appreciated.  Tomorrow she has physio in the morning, and the PT wants to try having Andrea walk with a walker, see if it works.  In the afternoon she goes up to 5B1 the dialysis outpatient clinic again, sure hope it goes well there, on Friday they took off too much fluid, dried her out too much and she had a suction event.  We took the power base unit there for them to monitor her heart mate II and suddenly the numbers were not right.  Pump speed had dropped aways which is an indication that it was not getting enough flow at the intake cannula.  She was quickly given apple juice down her feeding tube a couple of times which corrected the situation.  Andrea does not feel that at all, she is just lying still and not exerting herself, but the pump sure is sensitive to a lack of flow.  This too is part of the result of her becoming more mobile and using more energy than before, also eating and drinking more, which can change the fluid balance quickly. Until next time.

 

Goodnight, Maynard

Trying a Weekend Pass Again

Good Evening

 

Andrea had a real good sleep last night and slept in till mid morning.  I was there to help get ready to bring her here to the RMH, we have a weekend pass and hopefully it will work out well so that she can go back to the hospital on Sunday night.  So far, so good, we have a feeding pump here and it has worked well for her bolus feeds.  She is getting tired now and soon will be ready for bed, hopefully she gets a good night's sleep here, whether we will sleep well or with one eye open is a question.  Since I am very tired and will begin repeating myself, will say goodnight.

 

Regards, Maynard

Walked 35 Feet Between the Bars

Good Evening

 

Today was another good one for Andrea.  We went down to the physiotherapy gym for her to use the parallel bars, I pushed the wheelchair between them and she walked between the bars from one end nearly to the other end 3 times, a total of 35 feet, with very little assistance from the physiotherapist at all.  If she is feeling this good on Monday she will start Andrea out with a walker and see how she does.  In the afternoon she was up in the dialysis clinic again.  As she becomes more mobile and activity increases, it becomes more of a balancing act to remove the correct amount of fluid.  This is especially true in her case because of the pump, it can run a little low on the intake side from a lack of volume, meanwhile it maintains a constant speed and circulation is the same as if she would be walking around or excercising.  Andrea is the first patient with a VAD to go up there for dialysis, so it is a bit of a learning curve for all involved, extra training was needed etc, hopefully things will work a bit better in the future.  We hope to have her here in the RMH tomorrow and overnight till Sunday night.  I think we are more prepared now and she is stronger too, maybe the weather will warm up so we can go out a bit.  Now it is time for bed.

 

 Goodnight, Maynard

Went Shopping!!!

Good Evening

 

Today was another fairly good day for Andrea, sure helps when she gets a good night's sleep for her to feel more energetic.  About noon we bundled her up into her wheelchair, went across the street and took the train to the Southgate mall. we were in and out of a few stores, then went to the food court and had lunch.  Andrea ate more there than she has since last fall, still not a lot, but it is a start.  By 3 PM we were back in her room expecting her to nap but she didn't at all so I expect she will sleep well tonight.  Daily now we can see small signs of her stamina and endurance returning.  She is still not walking at all without help and then it is only from her bed to the wheelchair and back, but she is doing that much a lot easier.  Her feeding formula was switched to another one with less volume but the same calories as before and it seems to work better.  She is fed 3 times daily that way so that she does not need any at night.  That allows her to sleep in a less elevated position and is able to move around and reposition herself, helps to relieve her back.  I don't know what else to report so will close.

 

Goodnight, Maynard

April 6th

Good Evening

 

Overall today was okay, although Andrea was very tired, stiff and sore after yesterday's trip home. It was a good boost for her to be home a few hours with her family and friends gathered around her, so today was a little bit of a letdown for her it seemed.  I can identify with her, kind of like after returning home from a vacation and it is time to get back to the grindstone and work again, the exciting holiday is over too soon, and now it is a long time till the next one.  We went down to physiotherapy in the morning, back to bed for a short rest, then to the dialysis clinic for the afternoon.  Tonight she was running a low fever, nothing too high, but enough of a concern to do some blood tests to make sure there is not an infection starting somewhere.  She did not feel sick really, no particular pains except below her ears, probably swollen glands.  Tomorrow it will be down to the gym again and in the afternoon if she is okay we will be free to go again to the RMH.  After she is stronger we will be able to make the occasional day trip home again, although that could be awhile yet.  She really needs to gain more strength and begin eating again to manage a few hours at home.  It is warming up outside too so we should spend more time outside if possible, the sunlight is itself a good thing for her since she has been out of it for so long.  I will stop now, as I soon will starting repeating myself if I continue.

 

Goodnight, Maynard

At Home for 5 Hours!

Good Evening

 

Today has been another landmark day for Andrea,she was able to enjoy about 5 hours at home!!  We arrived home at 11AM and the pump doctor and his nurse drove in about 5 minutes later.  A little after that Jeff and Twila came bringing a meal that Twila had prepared.  At noon we all gathered around the table, with Andrea in her wheelchair and enjoyed a nice time together.  Around 1 PM her friends started coming, boys and girls she had attended school with, and since the day was so nice and our deck is on the south side of the house they all spent awhile out there.  We soon went in again and Andrea asked the group to sing awhile which they do a lot, 17 of them showed up.  By 4;20 we were back on the road again and she was back in her room by 6 oclock.  She was very tired by the time we were halfway back to Edmonton and remarked that she had forgotten how far it was.  Not only Andrea was tired though, I think we will all sleep well tonight.  Too tired to think so that will be all.

 

Goodnight, Maynard

Going Home for the Day

Good Evening to All

 

Today was another good day for Andrea.  Slowly she is regaining strength and mobility.  Today she began with leaving the ward to go to dialysis clinic on 5th floor, nurses quite nervous about having a VAD patient there, as they are responsible for her.  I think it is another first for them, so far they were coming down to do dialysis in her room, but since she moved to a sunnier room yesterday, and it did not have the necessary plumbing for the dialysis machines like her previous room, she needed to go upstairs for it.  This is another indication that she was becoming more stable and safe to go to that clinic.  A nurse from cardiology who is also VAD trained and has looked after Andrea a lot came up there too, plus they wanted one of the parents there at all times.  Meanwhile they will undergo more training there so they are qualified to look after her, blood pressure is always something that is watched closely during dialysis, as fluid shifts can change it dramatically.  That has never been a serious issue since we left CVICU.  She was up to the teen room again today awhile playing games there.  I went home today to make sure everything was okay and to get ready for tomorrow.  If all goes as planned, tomorrow the pump doctor and nurse will follow us home to our house 1.5 hours away, spend a few hours there and try to get back to the hospital by 4 oclock or so.  If no emergencies come up where they are needed in the operating room, and all other patients are okay, it should work out.  It will be the most Andrea has done yet since surgery and it will tire her out, but going home even only for a few hours is what she wants...so we'll see.  It has been a very full and busy day for us all so now it is time for sleep.  Remember us in your prayers tomorrow, not that we are afraid, but it is a big undertaking none the less.

 

Goodnight, Maynard

Very Good Day!

Good Evening

 

Today was a good one for Andrea, after a real good night last night.  They restarted her feeds last night and ran them all night and today they were shut off till around 7 PM.  She had no nausea today, was up in her wheelchair from before 2 PM till around 7 or so.  Her color is getting better, cheeks definitely were slightly rosy in color, could have been flushed with excitement of having her close friends who spent the afternoon with her.  This morning she was transferred to another room across the ward to a room with big windows to the outside, hoping that the bright sunshine streaming in during the day will also straighten out her sleep/wake cycle.  Tomorrow they want to start with dialysis being done in the dialysis outpatient clinic at 1 PM.That should free up her mornings for more physiotherapy.  I think the big push will be to recover strength, especially for walking, her upper body strength is coming along okay, and it should return more on it's own as she is able to walk.  The other area to work on is her eating, she hardly eats anything at all, today she had a few bites of toast, but she is never hungry.  With becoming more mobile she should develop more appetite, and we are willing to prepare or buy anything at all, just so she will eat.  We also are free to leave for day passes whenever she is not occupied, and is feeling up to it.  Possibly in a week or two when she is stronger we will try the weekend pass again.

 

Thanks, Maynard

April 2

Good Evening

 

Well Andrea is back in her room at the hospital again, arrived there at 5 pm, almost 24 hours exactly that she was gone from there.  It is not a panic situation at all, just that maybe it was a little premature to try a weekend pass, everything is a lot different, so quiet in the room,bed a lot different etc.  She for some reason got very little sleep last night which contributed to her problems today, which were compounded by the fact that her feeds were not going well.  She had her tube pulled back only 11 days ago, and was switched from constant feeds to bolus feeding 4 300 cc cans in 12 hours, seems like too much too fast.  The other problem is that with bolus feeding is now we were trying to do it without a pump, just gravity feed, the feeds are very sticky and don't flow very well, so it is very hard to control the rate.  Once we got her back to the hospital bed they gave her Zofran IV to settle down her nausea.  It worked it's magic once more, she slept for an hour and tonight she was alert and enjoying her Cricut machine, a small computerized scrapbooking machine which we got her for Christmas.  She has not used it much yet, hopefully it will see  a lot more use in the coming days.  Toorrow she is getting visitors, so if she is still feeling good and the weather is nice we might take her out again.  I think her physiotherapy will pick up speed, they will start pushing her harder which will be good.  Currently I always am the one to help her up from lying down to standing up and into the wheelchair and back to bed, so I can tell when she is feeling stronger or not. She is one of those patients who fool doctors into thinking she is a lot better than she really is, I sometimes wish they had more time to see how she really is doing, spending more time with her, it would help them to make much more informed decisions.  Until next time, goodnight.

 

Thanks, Maynard 

At The RMH

Good Evening

 

Well, tonight we are together at the RMH for night!!  Her bed is saved at the hospital for now, I think this will only be for the weekend.  We changed rooms to get a wheelchair accessible one so we moved our stuff late this afternoon, will need to clean our former room tomorrow sometime.  It seems like a big step to come here for night, so many things to remember.  We brought her meds, supplies, the big heavy power base unit which she is on in the room, same one she had at the hospital, plus many more items too numerous to mention.  We sure hope she will sleep better here, she has not slept all day.  It is a real leap of faith to venture out from the protective support team we have grown used to.  Hopefully this is not premature to come here on a weekend pass, although they told us if it looked like it would not work we could come back to her ward anytime.  We still only have the old lead acid batteries yet which are only good for at best 3 hours.  The new lighter weight batteries are on order along with a new controller, new batteries are lithium ion, some say they get 12 hours before recharging.  I guess I better get back to Andrea and Faye as I'm typing this on a computer on main floor, soon time to get her out of the recliner and back into bed for night.  Goodnight to all.

 

Regards, Maynard 

Has a Weekend Pass for the RMH

Good Evening To All

 

Today was a good day again for Andrea. She was down to physio therapy in the morning, went driving around some, played Bingo at the Beach, back to her room.  She napped awhile and afterward she had a shower, washed her hair etc, probably am missing something other activity she was involved with.  Since her day passes went so well the last 2 days, now the doctor wants to let her go ao a weekend pass.  If all goes well after dialysis tomorrow morning, and getting all the logistics figured out, and if she is still feeling okay, she will come with us in the late afternoon or so, and return to her room sometime Sunday evening to be there for dialysis Monday morning.  If you would have spent a few days with us recently, you would understand what a huge undertaking this is for her and us.  We are excited and more than willing for it, but since she needs help for nearly everything, it will fully occupy us.  It means bringing a power base unit for night time use, all the batteries for it, her reserve pack  controller, her feeding tube apparatus, all the flushes for the feeding tube, all medications etc.  She still requires a lot of help to situp, move to the wheelchair, to the car, to bed and the list goes on.  Will likely need to go shopping in the morning for some more luggage to get it all done.  Now she is being switched from her feed pump to a gravity fed tube, bolus feeding during the day so that she can sleep in a regular bed lying down flat.  When we were here yesterday she lay down on the bed here and said "this feels so good to lie in a bed like this again".  This is all progress, it's what we want, it's what she wants, and it will likely speed up her progress quite abit, but it is a bit sooner than we had expected.  The good thing is that we are not far from the hospital if we need anything like supplies or any advice or help.  The next goal is to get her started eating again so the feeding tube can come out.  So far she is not eating much of anything, her needs are being met nutritionally with tube feeds so she is never hungry.  Hopefully her mother's cooking will help to restart her appetite, then tube feed amounts can be reduced and finally stopped altogether.  I am very tired now so will close.

 

Regards, Maynard

Dialysis, Physio, and 3h at RMH!

Good Evening Everyone

 

Today was another good day for Andrea, dialysis this morning with Physiotherapy going on at the same time.   Her throat was still quite sore, but all the tests came back negative, so it is likely only a common virus.  Her cough had loosened up, and  her chest seems clear.  Tylenol seems to help out with the pain, otherwise she seems okay, still getting stronger, although she is still not really eating.  that is something we will have to pay more attention to it that she eats something every day.  We took her to the RMH(Ronald McDonald House) again today, were gone about 3 hours again.  We will have to see what tomorrow brings, she will likely go down to the gym and attempt walking again between the paralled bars and also do some hand and arm excercises as well.  Now I am very tired so will sign off.

 

Thanks, Maynard

Another Big First!!!

Good Evening Everyone

 

Today, March 29th, has truly been a notable day.  For the first time since mid November, Andrea was able to get in our car and leave U of A hospital property and spend several hours away.  Yesterday she asked her doctor whether she would be allowed to go to RMH for a few hours.  he said sure if her parents were not afraid, and since we are VAD trained to handle battery changes etc, we could leave.  Repeatedly he has reassured her that the only reason she is still in hospital is because of weakness.  At 4:30 we got her into the wheelchair went out the pedway to the car, got her in and went for a drive.  We went down Whitemud Freeway east to see the huge pile of snow that has been hauled off the city streets, located east of 17th street, turned around and came back to RMH, a 3/4 hour ride.  Then we went into parking underground at RMH, got her into a wheelchair and went up to our room.  Volunteer ladies from Atco Electric had prepared a Chinese supper for all the residents, so we went down after abit, had supper and returned to her room at the hospital.  She was positively glowing, so happy and pleased to finally get out of there, even if only for a few hours.  Now there is light at the end of the tunnel and it is not an oncoming train, it is a huge incentive to her to put more effort into rehabilitation.  As time goes on and the Lord willing, we will take her out more and more to reintegrate her back into the real world.  She is still not eating much more than a few bites, not enough to remove the feeding tube, but if she can eat her mother's cooking again I think she will eat again.  It seems like she has caught a real bad cold, but it seems to have progressed to a running nose, throat not quite so sore.  Tomorrow is dialysis again, hope it can be done early so she has the rest of the day to do other things.  Today's excursion was not only tiring for her but for her parents as well, so Goodnight.

 

Regards, Maynard

Mean Average Blood Pressure Got Too Low

Good Evening

 

I don't know whether to call the day a good one or not.  In some respects it was good, the blood tests and swab tests came back negative which is good.  Her sore throat and cough have not improved yet.  Tonight she was running a bit of fever, not much.  Her MAP, Mean Average Pressure, was quite low the last few days at 48, probably from removing too much fluid with dialysis.  Tonight when we were going to get her up into the wheelchair she nearly blacked out from sitting up, so they gave her two bottles of albumin, a blood product which rehydrates through the cell structure.  Hopefully by tomorrow her pressure will have come back up again.  Otherwise her spirits were quite good, her visitors cheered her up too.  As soon as she is strong enough to manage it we want to bring her here to RMH, I'm sure her doctor will agree, he is getting anxious to get her out of the hospital.  We are also waiting for the weather to warmup so we can spend time outside with her. Well, time to shut down.

 

Goodnight, Maynard

Enthusiastic Day!

Good Evening

 

Today was a good one for Andrea, were it not for the sore throat and cough she picked up somehow.  however it did not seem to dampen her enthusiasm, we had her get up,pivot and sit down into her wheelchair and attended chapel service there.  She also stood up from her wheelchair and back into bed after, this is of course with help from me, although I don't really have to put much strength into it, she does most of it.  I am mostly there to make sure she does not collapse, she is gaining strength and her knees have not threatened to buckle.  Tonight was another first, with my help she was able to get up from bed, shuffle a few steps, and sat down into the recliner, where she sat for an hour.  After that she got up from the recliner and with my help shuffled over to her wheelchair and we went out driving the halls. I can hardly wait till it warms up and we can spend time outside with her in the fresh air.  Tomorrow is dialysis day again, hopefully early so that the rest of the day is free for physiotherapy. Until next time.

 

Goodnight, Maynard

Talked to her for an Hour and a Half

Good Evening

 

Andrea had another fairly good day, a shower, dressing change etc.  For lunch she had a little bit of soup and for supper her tray had grilled chicken breast, can't remember what the other item was but she had a few bites of both.  Another first for her was to talk a long time on the phone with one of her friends.  For us as parents that was particularly gratifying to see, the sparkle in her eyes that had been gone so long was back,the fact that she was interested to socialize again is very encouraging.  We left the room so she could have privacy in her conversation, that is one area that she had lost almost all control, seems like the only privacy she was allowed was in her thoughts.  Her movement from bed to wheelchair is getting easier, we also move her back the same way.  Today she was wondering how soon she would be able to walk with a walker.  I asked her if it felt that her legs would buckle when she tries to walk and she said no.  Today was also mostly nausea free.  If she continues this way she might be released to the RMH by her birthday towards the end of May.  Please continue in prayer for her and us, her parents.  Thanks again for all your support both monetarily, emotionally and all the other ways you have helped us.

 

Goodnight, Maynard

PS by Nebs! Yup, that was me talkin to her on the phone! And it was so much fun!!!

Dialysis Day

Good Evening

 

Dialysis started early this morning finished by 1 oclock or so.  She had some Manitoba cousins visit the last few days, they left midafternoon today.  Till just recently it seemed that if she was having a good day it was nice for her to have visitors, but so often she felt poorly that often she hardly interacted at all with her friends.  It seems like that has changed somewhat, now her friends are very real to her again, and it definitely lifts her spirits to have them come see her.  In fact we like to leave her room so she can have private time alone with her friends, then their attention is focused on each other, seems like the best therapy right now, it also gives her reason to continue her battle.  It is getting easier to stand and with my help maneuver over to her wheelchair, we like to have her get up out of her bed every day at least once if possible.  Tonight she read an email of several pages which is the first time she has done that in months, actually concentrating long enough and strong enough to easily read and hold up paper.  She is being tube fed during the night and 2 hours during the afternoon, this is to stimulate her appetite.  This morning and again tonight she ate part of a toasted cheese sandwich.  We also are switching her over to taking her meds in pill form like she used to do.  In hospital we have been crushing her medications and dissolving them in water.  Well I can't think what else to report so it is best to close.

 

Thanks, Maynard

Walked 20 Steps!

Good Evening

 

I am glad to report that the day was better, after a week in the doldrums today was a welcome respite.  Andrea was feeling better from morning on, went to PT where she walked 20 steps, about 5.5 feet for her.  Afterwards she said her legs had not hurt.  With help we weighed her standing on the scale, later on we had her stand pivot and sitdown in her wheelchair to go to the gym.  Her OT was better,working with her arms and hands is getting stronger too, although it will still be a long haul till she is fully able to walk and move even close to what she used to do.  Today her doctor told her the only thing keeping her in the hospital yet is her weakness and nutrition.  He said though that even if she was not eating but was able to walk some again, he was ready to let her go to the Ronald Mcdonald House for night, scary thought.  A pump could be brought here, we are taking care of that aspect anyway.  She was in the teen room this afternoon for awhile again, playing games.  They started today with shutting off the feeding pump for the day and only running it at night, hoping that her appetite will return.  We think it is a little premature to try, we feel she should have a little more time for her stomach to get used to having something in it, but the doctor said she is tolerating feed in her stomach much better already than he had expected, so we'll just have to see how things shape up in this regard. I see my thoughts are all jumbled up and confusing, the sentences do not follow in sequence, so I guess it is time to close.

 

Goodnight, Maynard

Still Lots of Improvement Needed

Hi Everyone

 

Today was kind of so so, wishing we could have seen her feeling better and more active.  her stomach tube feeds are back to the levels they were before pulling the tube back into the stomach, and are catching up to her and making her somewhat nauseated.  It almost seems like she may be coming down with a sniffle or cold, complaining about her throat and feeling hot and cold in turns.  She had dialysis today and actually tolerated it quite well.  Sounds like a contradiction from the previous sentence, but her blood pressure holds up well and they are able to take off the fluid they want to without it affecting her too badly.  Dialysis is usually followed by a nap for awhile, and tonight she was up in the wheelchair for an hour or so.  I'm making lots of mistakes so will close.

 

Thanks, Maynard

Few Steps Again

Hello Everyone

 

I don't know what to report tonight, Andrea had a fairly good day I guess.  I reported last night that her feeding tube had been pulled out enough so it is in her stomach.  Well so far so good, her feeds were started at 10 cc/hour and she has tolerated that quite well, every 6 hours they have been increased 10 cc/hour so now she is on 50 cc/hour, 65cc/hour is where she was before and is the goal again.  After she has proved she can tolerate that for a few days they will begin bolus feeding her during the day so they can shut it off during the night.  Tonight Faye went to the nearby Sobey's and picked up a potato and cheese casserole, and a chicken dish.  Andrea had a few bites of potato and cheese casserole and said it tasted good to her.  Her stomach will have to stretch and get used to food again, she has not eaten anything significant since last fall.  Today she took a few steps in the gym between the parallel bars with help.  Sure takes a lot out of her.  Until next time.

 

Goodnight, Maynard

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Moved Feeding Tube Up

Good Evening

 

The day started out with dialysis in the morning.  The PT person came in and did some arm exercises at the same time.  PT is short handed these days so they have asked us to take over her leg exercises too.  She had her feeding tube pulled out enough to feed into her stomach,they then did xray to see if it was properly placed and it was not far enough out yet so they pulled it out some more, xrayed again and found it was good so they started her feeds up again at 10 cc/hour.  If she tolerates that well, then every 6 hours they will increase it by 10 cc until she is back to 65 cc/hr.  When she is used to that they will try bolus feedings where they will give her larger amounts during the day and none at night.  She is finding time quite long and wanting to get out of there, but she is not there yet.

 

Goodnight, Maynard

Stood Six Times

Good Evening Everyone

 

Today seemed to be a kind of sideways day for Andrea.  She was very tired in the forenoon, but last night she was awake for 4.5 hours or so, so maybe that explains that.  She also stood up 6 times yesterday with help, which is a huge effort for her.  We got her up and went to the chapel service at 2 this afternoon which she really enjoys, and didn't gag, cough or vomit there which was a blessing.  She was up for about 1.5 hours in total I think.  If last week's plan goes ahead, tomorrow the feeding tube will be pulled out enough so that the feeds go into her stomach, instead of going through the stomach into the intestine like it is now.  Yesterday was 6 months since Andrea was first admitted to the Stollery, feels like a long time.  Tomorrow is dialysis again also, will have to see how it all goes.  Please continue praying for her strength and courage and patience.  Goodnight.

 

thanks, Maynard

Pretty Good Day According to Andrea

Hi Everyone

 

Before I left tonight I asked Andrea what I should post here tonight about her day and she replied "pretty good".  She slept late this morning and PT came in to weigh her and take her to a small physio gym on 4th floor.  There was a little mixup in weighing her so she sat down and stood up including into and out of her wheelchair, a total of 6 times.  It was very tiring for her so she napped twice during the day, but tonight she was more alert and stronger again.  She had one bout with nausea today, likely because she has been having nosebleeds off and on for the last couple of weeks.  Blood in the stomach that has gotten there from a nosebleed is likely the reason for her stomach upset.  Her INR or blood thinness number is a little high, meaning that it is a little on the thin side, aspirin which is a blood thinner was discontinued today.  Unfortunately it takes a few days at least to clear out the aspirin effect, so it may take a few days for her nosebleed to stop.  This is a common problem for anyone who has a heart device, they all need to have their blood thinned some and it is a common problem to bleed somewhere, most commonly from the nose.  The nosebleed is intermittent and not lots of blood.  Hopefully tomorrow will be better.  Goodnight.

 

Regards, Maynard

Little Better Day

Well today was a little better one for Andrea.  Dialysis was early this morning and done by 1PM.  She slept some during dialysis so was awake the rest of the day except for an hour nap.  Pt was in to weigh her standing on the scale besides some other excercises.  She asked today how we could make time go faster, so she is sometimes impatient too, probably a good thing, as long as it doesn't get her down.  We had her up for an hour in her wheelchair this evening, although she was a bit nauseous for awhile.  Hopefully she will sleep good, she also can sleep in a bit on the weekend which she looks forward to.  Now it is time to sleep here too.

 

Goodnight, Maynard

Not Feeling Good Today

You all know the old adage about 2 steps forward and 1 step back?  Andrea had a good string of 2 step forward days, so I guess today was the day for a backward step.  In other words not a good day really.  First thing this morning when I got her up to get weighed she was feeling bad, so she lay down , thinking that it might pass over, later got her up in the wheelchair hoping to have her take a few more steps today at 10 AM but it got delayed awhile because  of how she was feeling so by the time we got down to the gym, the PT worker had other commitments and Andrea was not feeling good so we turned around and she went back to bed.  She slept alot and was in stomach pain and nausea most of the day.  When she tried to drink it all came back up within a few minutes.  She was ready to sleep at 9 PM so hopefully she has a good sleep before her dialysis tomorrow.  Extra blood tests were taken to see whether there was infection somewhere and only one test came back slightly elevated not really indicating anything, not sure which test though.  The overall trend is still getting better though,if we compare her to where she was a month or 2 ago.

 

Thanks, Maynard

"Stronger Every Day"

Dialysis started early this morning and she was able to nap a bit during that time.  The rest of the day she did not sleep, she was up for 2.25 hours in her wheelchair did some scrapbooking, driving around the hospital etcetera.  Physiotherapy did their work with her too.  Tomorrow we want to have her down to the gym for 10 oclock, they will likely see whether she can walk a little farther than the last time, do more hand and arm excercises also.  She is definitely a little stronger every day, still it will be a while yet till she is able to do some of what she was able to do before she got sick last summer.  She still is only eating a wee bit, hopefully that will soon improve.

 

thanks, Maynard

She WALKED!!!

Good Evening

 

Well today was a day to record a milestone on Andrea's road to recovery.  Today she WALKED, yes it was only 4 feet or so, with a PT ahead of her keeping her knees from buckling and I was right behind with the wheelchair so she could sit down, and it was between the paralled bars, but yes she actually walked!!!  Her steps were only shuffling steps, maybe 15 all told, nevertheless it is progress.  After this she was totally tuckered out.  The effort put forth was probably the equivalent of a seasoned athlete doing a triathlon or more, but it is a start.  I have been helping her stand beside her bed and it is getting easier.  It is a real morale booster for her to actually be able to do this, the last 3.5 months she did not walk at all and the previous 2.5 months before that she hardly did any walking either.  She should sleep well tonight we expect and hope, last night's sleep was better than the previous night,  her days go a lot better when she has had a good night's rest.  She is still battling nausea off and on, but they say with becoming more active and hopefully she will feel like eating more, this should all help.  Time to close again so, goodnight.

 

Thanks, Maynard

Stood for 50 seconds

Good Evening

 

Dialysis got started  this morning done around 1 oclock.  She still had bouts of nausea during the day but tonight seemed better.  I helped her stand up beside her bed, 50 seconds.   After that we used the lift and got her up in the wheelchair for an hour tonight.  Andrea napped several times during dialysis and none at all after that so she was real tired, especially after the poor night she had last night.  She woke up at 3 AM and didn't sleep till around 7 or so.  Maybe she did not get tired out enough yesterday, not sure.  Don't know what else to report so will close for now.

 

Goodnight, Maynard

Nausea Again

Hello Everyone

 

Today was a so so kind of day for Andrea.  If it was not for the sudden, without warning bouts of nausea it would have been a good day.  She had had a few days without any bouts of upset stomach last week so today she was a little disappointed.  Fortunately the length of these nausea spells were not very long today.  We had her stand up into the wheelchair and attended chapel services, but soon after it was over she wanted back to bed.  Around 7 Pm we used the sling and put her into the wheelchair and were out of the room for awhile again.  No nap for her today so she was very tired and I am sure by 10 PM she will be asleep for the night.  Tomorrow is dialysis again, not sure at what time.  Rather than be repetitious, I will close, goodnight.

 

regards, Maynard

Stood Twice for 30 seconds each!

Good Evening

 

Andrea's day started out well, she slept in late, PT came in and supervised the joint effort of Andrea and myself to stand her up.  She did this 3 times, twice for 30 seconds.  I did this the first time on Thursday and I was surprised at how much more strength and balance she had to stand, although after 3 times she is exhausted and needed rest.  After lunch we took her to the teen room where she was awhile.  As the day wore on she was uncomfortable and threw up twice tonight.  When I left she seemed chipper enough, hope she sleeps well.  She had visitors today so did not have a nap so maybe that had something to do with it.  We just hope and pray that tomorrow will be a better day.  Goodnight.

 

thanks, Maynard

Strength returning

Good Evening

 

Today was dialysis day again starting first thing this morning.  After she slept some and then under the supervision of an OT I helped Andrea from lying down to sitting up and then onto her feet and into the wheelchair, worked okay.  The Occupational Therapist a.k.a. OT, said she hoped to have Andrea stand up withe the parallel bars and take a few steps next Tuesday.  She still has no appetite yet so it is hard to have her eat more than a bite or two at a time.  She needs to eat more so that her stomach becomes more used to it.  We can see her strength slowly returning, and soon her physio and occupational therapy will graduate from the bed where they have gone as far as thye can, to more strenuous activity in the gym.  They are trying to get all muscle groups attention and as she is able they will push her harder and harder, as that is the only way to build up strength.  Welll I've ran out of inspiration so will stop.  Goodnight

 

Thanks, Maynard

Very Good Day

Good Evening  everybody

Well Andrea had a fairly good day again.  She got up from sitting position on the edge of her bed to standing 4 times today with some help.  Last night she slept better than she had for awhile and was more rested this morning.  Pt and Ot both had their turn with her today, doing exercises etc, she also played with an electronic game in bed this morning.  Her nap was an hour and later in the afternoon she had a shower and had her hair washed, after which she was very tired.  We are trying to get her to eat a teaspoonful 3 times daily, but because of her tube feeds she is almost never hungry.  In a week or so they want to pull her nose tube out far enough so the tube feeds go into her stomach, right now it is just passed through the stomach into the next part so that she is able to tolerate feeds at all.  That way they will bolus feed her and possibly not feed her at all during the night.  None of us are designed to receive nutrition 24/7.  We are all meant to eat a meal or something several times a day, and this is what they are hoping to have her do also eventually.  Then they will be able to shut off the tube feeds, she should get hungry and gradually as she grows stronger she will eat normally again.  Just need to be patient and take these steps as she is able to, meanwhile building up her strength at the same time.  I am tired so off to bed soon.

 

Thanks, Maynard

PS Andrea called me last night to brag about her day and all the therapy and standing and even eating she had done! It's so awesome to see here getting better! And that she's excited about it too. Nebs