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

We Are At 10,000 Page views!

Or to be precise, at 9:20 we are at 10,004!

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

Dialysis and a Little More Pump Trouble

Hi everyone

 

Today was a fairly good one for Andrea, dialysis started around noon which was a little later than usual.  She was having some abdominal pain and was a little afraid of getting up, but with the help of PT she stood on a big scale beside her bed.  She had another pump event today which was suction related, probably because dialysis took off too much fluid and dried her out too much.  Now they want to weigh her every morning at  the same time on the same scale to be able to better establish her weight trends, and how dialysis is affecting her.  They immediately started her on fluid IV and the pump issue straightened out.  They had been weighing her with the bedscale until now, but who knows how accurate that is, and there are too many variables involved, pillows or blankets on the bed etc.  Tomorrow they want to see if she is able to take a few tiny steps between the parallel bars.  We also were told to have her eat at least something 3 times a day, a little hard to find something appetizing in the hospital, especially since she is not hungry.  I guess it is baby steps, baby steps.... together they add up to something though.

 

Goodnight, Maynard

Pump (Heart Mate) acted up

Good Evening to All

 

If you remember from last night's post I wrote about my concern about her pump acting up.  Well that story continued this morning, Faye forgot to mention when the pump doctor was in this morning what we had seen her display screen doing.  Shortly after I arrived this morning the pump nurse walked in and I had been watching  the pump readings very closely, there was a spike in the current draw to 11 watts.  The normal range is usually from around 6 to 7.5 watts, so the nurse checked the history in the computer for the night and saw there had been a lot of these spikes towards morning, so she quickly called the pump doctor, he ordered blood work stat to find out whether her numbers were out of line.  Meanwhile he ordered heparin started again, a children's size aspirin, then he pushed up pump rpm's  from 9600 to around 13000 for a minute and then slowed it down momentarily to half that.  She can really feel it when the pump is speeded up like that, it's very uncomfortable.  The doctor set the pump at 9200 and with heparin running, after an hour or so the numbers all straightened out again.  They think a fibrin was forming on one of the vanes of the pump and starting to clot just a wee bit, although that is a puzzle her INR or blood thinness level was right, and all the other blood test results came back good.  To make a long story short, she missed out going down to the gym in the morning, in the early afternoon PT got her up into the wheelchair and she spent some time in the teen room.  Tonight there was a kid's bingo at the Beach on 4th floor, so we took her there, she won 2 small prizes.  She only napped for maybe a half hour today, so she was ready to sleep tonight, and so am I. 

 

Thanks again, Maynard

 

 

Full Day

Good Evening

 

Well Andrea had a fairly good day, although the first thing in the morning she vomitted on awakening.  Could be from waking up too fast maybe, don't know.  Dialysis started early so she was done shortly after lunch.  PT was in to do physio and got her up in the wheelchair from a standing up position.  She spent some time in teen room and was sitting up again for 2 hours or so.  Two of her aunties and a cousin came today so with a lot of stimulation she did not nap at all.  Seems like maybe her sleep wake cycle is getting straightened out some, she was very tired tonight.  Another heart mate patient and his parents stopped by also.  The biggest news though is that her bilirubin was down to 54 today from 66 last Thursday, woo hoo.  I am not sure why her pump was showing that her pump output is going up some, along with her current draw.  To me it suggests that with her blood a little thinner that possibly her own heart is doing a little more and because of that the pump is possibly a little short of supply, the good thing is that these numbers go up and soon come down.  If they stayed there for 2 hours or more they would possibly have to readjust the pump speed or something.  Well it is late and time to sleep so goodnight to all.

 

Thanks, Maynard

Went to see her

Good Evening Everyone

 

Glad to tell all of you that Andrea had a good day today.  She definitely slept better last night and slept in till midmorning.  Her nurse was in and got her up on her feet beside the bed for a little while in the morning.  We got her up and ready and  went to chapel service at 2 oclock, she really enjoys that.  It really tires her out though, she is not used to crowds so she was back in bed after an hour or so.  Later friends brought in supper so we had her up again to the atrium and afterwards drove her around in the wheelchair which she enjoys a lot.  Tomorrow is dialysis again, not sure at what time though.  Faye has taken over most of Andrea's care, as that will be the case anyway when she eventually is able to leave the hospital.  Well it is time to shut down for the night, and I have run out of inspiration so goodnight.

 

Thanks, Maynard

PS, yup, that was us! Brought her supper and spent the evening with her. She looks so good already! And it's just awesome to hear her talk and to see her face animated and her eyes dancing just like they always used to!

Very good day, PT, company, scrapbooking

Good Evening Everyone

 

Andrea had another good day.  She slept in late, then PT was in and had her first sit on the edge of the bed and then to a standing position twice, each time for about 30 seconds.  That takes all she has to stand up, but it seems to be getting a wee bit better each time.  We had her up for about 2 hours in the afternoon, part of that was in the teen room doing scrapbooking, she seems quite enthused about that.  We bought her a Cricut pattern cutting machine for Christmas and now she is learning how to use it, quite the nifty machine.  After she returned to her room she napped awhile and then 2 of her school classmates came to visit awhile.  She is to the point where she really enjoys some company.  O yes her former school teacher also paid a visit this morning, much appreciated.  She seemed quite positive and upbeat today, talking more than before.  Tonight she also talked on the phone for the first time since November I believe, with her grandparents.  Hope she has a good night's rest, it always makes the next day go better.  That's it, that's all for tonight.  Thanks again for all your support and interest.

 

Regards, Maynard

Starting a Scrapbook!

Well it was another fairly good day for our girl.  Dialysis was started first thing this morning,over by about 1 or so.  Around 2 oclock with the help of the PT she sat up on the edge of the bed first, then with help she stood and turned and sat down in her wheelchair.  We took her to the teen room where she did some scrapbook stuff and made a poster. we also went to the Tim Horton's that is in the hospital with some people that stopped in.  By that time she was up about 2 hours and then was ready to go back to bed.  She said it had been a fairly good day, seems like her spirits are more positive too.  She is starting to make a scrapbook of this stay in the hospital, it is something she loves doing.  Her hands shake a lot so her mother does a lot of it, but the ideas are Andrea's.  I don't remember any nausea today, painkiller was only tylenol also.  Well that is all I can think of so late, so goodnight.

 

Thanks, Maynard

 

 

 

Most Active Day Yet

Andrea had a good day today, although she was very tired.  Faye and I agreed that this was the most activity Andrea had in one day so far, down to the gym in the morning, 2 hours in the wheelchair, then, back to bed, another round of physiotherapy for her arms with one PT, then another one came in and did leg exercises and had her sitting up on the edge of her bed unaided for around 10 minutes.  After a rest she was up for a shower and washing hair included.  It seems that they are including more and more routines in her exercising, coming up with new ways to include more muscles groups, and more stretching of muscles, especially in her legs so that standing will become easier.  Needless to say this is very exhausting as her muscles are pushed harder and harder, and when she is back to bed she usually falls asleep immediately.  We are trying to have her awake as much as possible so that she can sleep at night, this is a struggle as a hospital is not conducive to getting a good sleep.  That part is slowly improving too,  when her night has been fairly good she has a better day the next day.  Well it is off to slumberland here soon too, goodnight.

 

Regards, Maynard

 

PS  I forgot to mention that she was down to the gym today without her IV pole, she is now on oral coumadin and her feeds could be shut off for 2 hours, makes it much easier to get around and don't have to worry about snagging IV lines etc.

Eyewitness Account!

My friend was there to see Andrea yesterday and agreed that she looked good! She also said that Andrea is talking a lot more again. I really should go see her again, we have so much to catch up on- I have this long mental list of things I wanna tell her and its growing! And last time I was there, she wasn't up to much visiting.
And it's not like I doubt Maynards about how she's doing, it's just awesome to hear from another source that sees different things. We all know how biased parents are! :-)

7 weeks out of the ICU

Well, Andrea had another good day, down to PT this morning, dialysis this afternoon.  I think I have reported that they were gradually switching Andrea over from a heparin continuous infusion to coumadin taken orally, decreasing the first and increasing the second one to replace the first.  This has taken place over about 2 weeks, today she finally is on coumadin only, which means that she is not on any IV pumps anymore.  They also increased her tube feeds so that in 24 hours she gets the same amount as before, only now she is allowed to rest from tube feeds for 2 hours out of 24, so she can be IV pole free going down to physio therapy.  Now she needs to grow stronger and start eating enough so that she can have her nose tube removed.  It has been in place a long time and she has had trouble with sores in that nostril which are very painful and have bled some too.  Meanwhile we try to support her in any way we can, Faye has taken over much of her care, administering medications and keeping her tube feeds bag filled, besides all the other many things a mother can do for a child.  Today a friend of hers was there and they had a nice little chat, which she is more ready to do.  We spent 7 weeks in CVICU and yesterday was 7 weeks since she was moved onto the 4th floor.  Time goes by fairly quickly some days and other days not so fast.  It sure helps when she is feeling better that time goes more swiftly.  And now it is time to get some rest.

 

Goodnight, Maynard

Standing With Less Pain

Andrea had a good day, went down to the gym for physio, stood up with help between the parallel bars 2 times, it is slowly getting easier and less painful, although she still has a long way to go.  She has had less nausea the last few days it seems, when she gets exhausted and needs to cough she is still weak and sometimes it happens to go down the wind pipe and that triggers the gag reflex.  Other times her gagging is from extreme pain, sometimes her pain goes away with the help of Tylenol, at times she gets something stronger.  Not sure if I mentioned, her bilirubin is down to 63, which is much better than it was.  She has been more talkative the last day or so which is also a good sign.  Tomorrow is dialysis day starting at around noon so will try to get her into her wheelchair and PT done before that.  When she is feeling better she appreciates visitors, especially the ones she knows the best.  Time for some shut eye, goodnight.

 

Regards, Maynard

Dialysis Day

 It is very cold out with wind chill about -35C.  So thankful for warm hospitals, houses, cars, etc.  Andrea had a good weekend, today was dialysis so she spent a lot of the time in bed and quite cold from the process of removing the wastes out of her blood.  She woke up with a very sore belly, took some pain killer and it mostly went away, not quite sure what is the cause of it, most likely muscle pain.  I forgot to mention that her bilirubin was down to 63 today, so it is approaching the level she was before her VAD surgery.  The whites of her eyes are nearly normal again, skin color is also much improved.  Tomorrow we hope to take her down to PT again, get her standing up in the parallel bars, doing some OT with her hands.  I forgot to mention that yesterday afternoon we took her up to 5th floor for the chapel services, first time in about 4 months.  Service is roughly a half hour and she managed very well, good to have her out again in a more normal setting.  It will be a real challenge to get her eating again, her nutritional needs are all met with tube feeds, so she is not usually hungry,  we'll just have to see how that goes.  I'm making lots of typing mistakes, hence a lot of correcting so I'll quit for now.  Sweet dreams to all.

 

Thanks, Maynard