Here it is- sorry its late

Hi Everyone

Today was quiet and uneventful, Andrea had a good day.  Slowly she is getting an appetite, she actually said once today that she was hungry.  She nibbles a very little bit at a time, by now her stomach must be quite shrunken from having nothing in it for 3 months.  She will have to slowly expand her volume to the point where she can have her nose tube removed.  We had her in her wheelchair twice today, also trying to keep her awake during the day so she will sleep better at night.  Her sense of humor even poked through once today.  Tomorrow is dialysis again, sure hope it will be the first thing in the morning.  Tonight she admitted that she felt better than a week ago.  Can't think what else to write, so before I repeat myself I'll stop.  Goodnight.

Thanks, Maynard

Internet Down

Sorry people! our internet is down! i will send you all maynards update as soon as its all workn again. nebs

Good Day, Standing and Eating

Good Evening to all our faithful support group

 

Andrea had a fairly good day, Pt was in this morning and first had her sit up on the edge of her bed and then standing two times.  This PT we have known since 10 years ago, she does not look after her during the week, this was the first time she has been on duty for weekend.  Anyway I think she must have been there when the walls went up in that place, and she said Andrea is quite close to walking again, of course that would be only a few steps at first with a walker, that's encouraging.  Another first, Andrea ate 2 very tiny tiny bites of food for the first time since sometime in November.  Faye prepared toasted, hot, ham and cheese sandwiches tonight, so offhandedly I asked her whether she would like a bite and very surprisingly she wanted one.  She was very happy to manage it, said it tasted very good.  She also had maybe 6 of those smallest Mr Freezies today, also had a teaspoonful of chocolate pudding 3 separate times, it all stayed down too.  It might be that the appetite stimulant is working, although it would seem quite soon for that, since she has had it only for 5 days or so.  We also had her up in her wheelchair for about 1.5 hours today.  Her sleep wake cycle is still not right, maybe tonight will be better, we tried to keep her awake as much as possible today.  When I left she was very very tired, and nearly asleep, which is what I need too, so goodnight.

 

Thanks, Maynard

 

 

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PT more agressive

Dialysis started early and was done by about 1 Pm which was nice.  She had a few catnaps during this time so did not sleep too much during the day, hopefully less sleep during the day will help her sleep better at night.  She seems like a little stronger day by day, PT is getting more aggressive and doing more difficult  and longer routines with her.  The goal is to have her stand up on her feet every day next week, we'll see how that goes.  She is eating more Mr Freezies every day, tomorrow we want her to try some pudding and see how she toleates that.  The doctor would like to see her take up some form of schooling in the hospital school, even if it is only one subject and only half an hour per day, but she is not there yet.  They are switching her from Heparin drip "blood thinner" to Coumadin taken orally.  This is so she is dependent on one less pump, she only has this one and the pump for her tube feeds right now.  Well it is time to close, goodnight.

 

Regards, Maynard

Good Day in Rehab

Well, all around Andrea had a fairly good day.  We took her down to rehab gym for 10 AM, pushed her wheelchair between the parallel bars, and by grasping the bars and the help of an OT she was able to stand up and sit down twice.  She cannot stand straight her rear sticks out and her knees are bent, she cannot straighten up because she is too weak and her leg muscles have lost their tone.  When she sat down the second time she promptly threw up, she said later that was because of the pain in her legs.  She also was in the OT room where she was putting pegs in a board that was actually up higherthan her head which was good but exhausting.  We got her back into bed and she promptly slept for 2 hours, she was totally exhausted from her efforts.  By midafternoon she was up in a chair and showered and shampooed her hair which she was very happy for, after which she slept again.  Tonight she was actually the most alert she has been for awhile, we played a few games of UNO with her which she really enjoyed.  Tomorrow is dialysis again, sure hope they can do it first thing in the morning.  It seems that if she is not feeling nauseous she can be quite interested in her surroundings and is willing to take part in activities and conversations around her.  It is a long slow climb that she is making, and some days seem like backward steps but overall she is slowly gaining ground.  Thanks again for all the prayers, emails, cards, gifts, meals, money etc, they are much appreciated.

 

Goodnight, Maynard

Not Sleeping Well

Andrea had dialysis starting at 8;30 AM 4 hour run, slept some this afternoon, got her up in her wheelchair around 6 PM.  She was nauseous part of the day and very tired.  She kept telling us the last while that she was awake a lot at night, so we arranged with her that if she was awake more than 5 minutes during the night that she should wake her mom up.  So last night she slept till about 3 Am and was awake mostly till 7 AM.  Today her medications were changed to see if it was possible for her to sleep better, which would help her to be more alert during the day.  I think most of us can say how the next day goes if we for some reason are sleep deprived at night, the next day loses it's shine after awhile, and so with her.  Tomorrow we hope to take her down to the gym for physio therapy, don't know what the plans are for her down there.  It might be the parallel bars some time next week, I don't think that is the plan for just yet.  Well I am tired and don't know what else to write so I'd better quit for now.

 

Goodnight, Maynard

A Good Day for Andrea

Before leaving tonight when I asked Andrea what I should post here, like whether she had a good day or not, she agreed it had been a fairly good day.  She was up from the bed to the wheelchair without the sling by 9 AM, and then was up for almost 2 hours.  The transition from bed to wheelchair was mostly done by the PT person, Andrea contributes very little to that effort.  She is simply too weak to even consider doing it on her own, it is a matter of helping her situp on the edge of the bed, and then PT literally hauls her to her feet.  This is the most painful and taxing thing she has done the last while.  Her leg muscles have shrunk and gotten soft so that when she stands, her muscles stretch again, causing her pain.  The only way through this is ahead, bearing the pain and believing that it is worthwhile to continue, although she realizes that she is definitely stronger than even a week ago.  Her color is improving, her cheeks are more pink again which is good to see.  Tomorrow is dialysis day again, so a good part of the day will be spent in bed.  Hopefully they come early so that she can rest after it and still have time and energy to get into her wheelchair in the afternoon or evening.  We are trying to keep her awake more during the day so that she can sleep better at night.  It's been a long day so goodnight to all.

 

Thanks, Maynard

Tired day

Well today was a dialysis day, starting at 9AM till 1PM.  She was awake till midafternoon and then slept till 5 PM, we tried to wake her up but it was hard to do.  She seemed quite sluggish most of the day, not quite sure why, I guess just one of those days.  Nausea was a problem also which made her not feel like getting out of bed, although we had her up in her wheelchair for an hour tonight.  It seems like dialysis days are real tough, seems to take a lot out of her.  Sure hope tomorrow will be a brighter day for her and for us.

 

Goodnight, Maynard

Feb 20

Another quiet day has passed with Andrea, she was nearly asleep tonight when I left.  Sundays she is allowed to sleep in, her medications go in through her feeding tube, and if it is done very quietly she hardly notices and goes back to sleep.  She was a little nauseous again, I think that is partly because her cough is still quite weak, she has a hard time to get rid of mucous secretions at times and she coughs and swallows repeatedly and finally gags on it.  After doing this awhile she sometimes pukes a little and feels better.  PT was in this morning and had her standing for 20 seconds and she begged to be able to lie down again, and promptly threw up, so it seems that it was not a good idea to try that when she is not feeling great.  Slowly, slowly she is improving in color, the whites of her eyes are clearing up, her voice is getting stronger, she is more talkative too.  At first when we got the better wheelchair if she lasted for 5 minutes she was very sore and wanting to get out.  Now if she feels not too bad she is able to sit in it for an hour or more at a time.  Tomorrow is dialysis starting around 1 PM.  Have a good night.

 

thanks, Maynard

Feb 19

Well Andrea had a fairly good day again.  She says she was awake quite awhile during last night and so she slept in till 11 AM.  She stayed awake the rest of the day without a nap so now she ws ready to sleep.  She had a bit of nausea, threw up only once though and then was somewhat better after that.  We had her up in her wheelchair for 1.5 hours around 6 PM.  We also try to do her physio therapy with her because they don't come in for that on weekends.  We hope tomorrow will have no surprises and that she can continue improving.  The last 10 days or so we have seen some good things happening, she also realizes it, and it gies her new hope to continue.  Wishing you all a good night.

 

Regards, Maynard

Bilirubin to 87!

Well another long day with Andrea has come to a close, we parted for the night and now I am back here at the computer trying to figure out what to post.  She had a fairly good day, dialysis this morning, dressing changes, PT etc.  She did not stand up today, we'll leave that for tomorrow, had her up in the wheelcoair for 1.5 hours this afternoon.  We are trying to keep her awake more during the day hoping that she will sleep better at night.  I think I mentioned here earlier that she is on a steady dose of Maxeran, an anti nausea drug and it seems to be helping, she has not really been nauseated the last couple days, which sure make the day easier for her to bear.  Not sure if I mentioned earlier or not but yesterday's bilirubin was down to 87, first time in 8 weeks or so that it has been down so far which is excellent.  She is drinking a little bit and tonight she had a popsicle, doctor is hoping she will soon eat some solids like pudding, maybe drink milk too.  She is slowly getting a bit stronger, and we pray she can continue making steady progress.  It is still a long way till she can be released from the hospital.

 

Goodnight, Maynard

Stood Again

Andrea had a good day, she slept till 9 AM, almost first thing PT came by and got her up on her feet beside her bed, turned her 90 degrees and sat her down in her wheelchair.  Of course the physio therapist held most of her weight up.  It's much the same as trying to make a one month old baby stand, the baby actually contributes very little to the project, except this is a nearly 17 year old girl instead.  When she was asked how it had gone she said "horrible".  She didn't really want to try, she was afraid of how painful it might be, also how weak she is and afraid of falling.  But it is like so many other things in life, you never know until you try.  Tomorrow she will be a lot more willing to try again I think.  The pump doctor said after he didn't think she was ready or could it.  If she continues to improve in the nest few days, PT is considering having her try out between the parallel bars, 2 handrails, by the end of next week.  She still needs to put on around 20 lbs of muscle to get back to where she was a year ago.  Her voice is stronger and she is talking a bit more now too.  We just thank God for all the improvements there have been.  Now it is time for dreamland, goodnight.

 

Thanks, Maynard

New Background

K so I changed the background on the blog again. I like to pick ones that look like Andrea and she loves the whole palm-tree beach thing! Just so you all know :-)

Just a Regular Day

Just returned from Andrea's room, and it's really cooled off again -22 C again.  Andrea had a fairly good day, her bout of nausea was first thing this morning, and the rest of the day it didn't bother too much.  We had her up in her wheelchair for an hour this morning, back in bed before 11Am for dialysis.  The Cutdown site which they repaired yesterday bothered her today abit, kind of pinching and sore but bearable.  She slept some after dialysis but tonight was more awake again.  She sometimes will add a comment when we are talking and it interests or concerns her.  Now we hope and pray that she will sleep well and be ready to have a good day tomorrow.  Goodnight.

 

Thanks, Maynard

Surgery to Close up an Artery

Don't know what to write tonight.  This morning Andrea had a kind of surgery in her bed, it was something they had been wondering about awhile and decided to go ahead with it.  Sometimes when a risky heart surgery is expected, the doctors want to have instant access to major arteries, so they will do a "cut down", exposing an artery so if necessary it is right there.  Well Andrea had an artery "cutdown" when her VAD was installed, but because of her anti rejection drugs, steroids etc it was slow in healing up.  they were not very concerned about infection because it is right where lymphatic fluid  flows, which is a part of your immune system, but it was so slow to heal, that today a surgeon cleaned up the wound and stitched it closed.  So now no showers for 10 days, and today she needed to be careful to not bend that leg too soon.  Even so, PT came in and got Andrea into the bed that moves her from lying down to standing.  It was very painful at first, her leg muscles have not had any real job, or the strength to stand for nearly 3 months, but she had a half of a popsicle while standing, and actually stood nearly vertical for 14 minutes.  It was quite obvious that she managed standing like this much better than a week ago.  Tomorrow her dialysis is to start at 11 AM, so we will possibly get her up in the wheelchair or in the standing bed before that.  And now it is time for bed.

 

Goodnight, Maynard

Nausea Today-Not as good a day

Hi Everyone

 

Today was kind of a sideways day, Andrea had dialysis starting first thing this morning, after a somewhat sleepless night.  Not sure if she slept too much yesterday or whether her stomach was bothering her or what.  She finally threw up around 6 AM and soon they were setting up the dialysis machinery.  She struggled with her stomach all day, although we had her up in her wheelchair for an hour too.  PT hopes to see whether she is able to stand tomorrow.  They sure are working her out to try to loosen up her shoulder joints, she cried out in pain today when they were working her out, yet she knows this is a necessary step for recovery.  Right now I think the greatest immediate hurdle is her nausea, she cannot do anything when it is so bad.  Pray that this can improve.

 

Goodnight Maynard

No Big Changes

I just returned from Andrea's room and since it is late I'll be quite brief.  Today was a fairly good day for our girl, she slept in the afternoon for at least 2 hours.  Last night was not so good she was awake a lot and by early morning she threw up and did not  really sleep well after that.  We got her up in her wheelchair for 1.5 hours or so.  I don't think she is so nauseated like she has been, but sometimes she coughs a lot and since it is not a strong enough cough to really get rid of phlegm properly, it tends to go up and down quite fast and eventually she gags and sometimes throws up because of it.  More movement and strength is likely the only way for her to properly clear her lungs. Tomorrow is dialysis again which is quite tough for her, hopefully she does not have to wait too long in the day till they are able to start it up.  I did request the nephrologist that she could have it first thing in the morning, that way the rest of her day isn't wrecked for PT to work with her after she has had a nap, PT's start early in the morning and are gone quite early in the afternoon, so it is sometimes hard to schedule everything in for those hours.  thanks for reading this and goodnight.

 

Regards, Maynard

More Progress

Good Evening

 

Just returned from Andrea's room she was nearly asleep after not napping at all today.  I hope all of you will understand this, but our hopes and dreams of her recovering have been dashed so often, her improvements have been so small, that when I very tentatively and with much hesitation tell you that today has been by far the best day she has had since her VAD was put in, you will understand.  Don't misunderstand me we are extremely grateful for the gains she has made to date.  She was a lot more talkative today,moving around in bed more easily, not nauseated or in a lot of pain either.  We just hope that the improvements we have seen in the last few days will continue.  It helps that her brother and his wife were in to stay with her while Faye and I got out for awhile this afternoon.  The night shift nurse that had her last night was working again tonight, and her observation was that she could see a lot of improvement in the last 24 hours.  there seems to be evidence that her kidneys may work again, how well remains to be seen. The physio therapist that has been working with her very diligently worked with Andrea again today, and she said one of the goals in the near future will be to have her stand up again.  What she needs the most for that to happen is for her calf muscles to stretch and strengthen again, right now they are still quite painful.  She was also up in her wheelchair for 2 hours today, which is the longest stretch she has been up so far.  Well morning will come soon enough, so now to bed I go.  Please continue in prayer for Andrea and us.

 

Thanks, Maynard

Eating and Drinking a little

Andrea had a fairly good day, except she was nauseated off and on again.  Her Maxeran dose which she was getting  every 6 hours was withheld starting this morning, so it will likely need to be restarted tomorrow.  She lasted all day without throwing up until tonight, so late tonight she was able to throw up and then felt better.  We had her up in her wheelchair twice today., besides that she also had dialysis which tired her out a lot.  She is slowly getting stronger it seems, although it is not always obvious.  She has been drinking a little at a time and also eating jello in very small amounts.  hope tomorrow will be better and thanks for reading these epistles.  Goodnight.

Regards, Maynard

Swallow Test and she passed!

Today was a better day for Andrea.  In the morning she went down for a fluoroscopy swallow test, which she passed.  This test is when you swallow juice, pudding, peach slices cut up small that are in barium.  As you swallow the picture comes up on an xray like screen showing the liquid or pudding going down and by that they know whether the patient is ready and all the muscles are doing the right thing to force the food or liquid down the right pipe.  She has been so thirsty and so frustrated that she could not drink anything for so long (11 weeks), her doctor said she could start off with a little of whatever she wanted the most, which was Pepsi.  She took very tiny sips, was not much volume, which she sure enjoyed.  She also had a bit of clear orange jello which she liked, the best part is that it stayed down without nausea.She will only get clear liquids till after the weekend, after that depending on how she does, they likely will pull the NJ tube out a little so they can tube feed  into her intestine, she will also be able to eat tiny amounts of solids as tolerated.  She also had a shower this afternoon which they said she did a lot better strengthwise, than last week.  Tomorrow is another dialysis day starting at 11 AM, runs appproximately 4 hours.  Pt will be by in the morning to get her up in the standing bed which she does not like, but it is a necessary step to beginning to walk again.  Goodnight.

 

Thanks, Maynard

Less Nausea

Well it is getting late so I'll make it short.  Andrea had dialysis starting at 7 AM so that was behind us by noon or so.  She gets very chilled from it, so we keep on changing out her blankets and getting her fresh hot ones from the warming oven, after they are done she usually sleeps an hour or so, after she awoke PT came in, did some excercises, got her into the wheelchair and we went driving for an hour or so.  She didn't get so nauseated today as she has been, so all around she had a fairly good day.  Tomorrow she goes down for a swallow fluoroscopy, I don't anticipate much difficulty she should do okay with it.  If she passes, they will start her on a very small amount of liquids and maybe something like pudding till her stomach can handle more.  Her bilirubin came down 105 points down to 134 from her last test on tuesday.  Hopefully it will continue going down after this too.  Goodnight. Regards Maynard

 

Regards, maynard

More Progress!

Hello Everyone

 

Sorry this is so late, things were sort of hectic with another patient on the ward tonite, so Andrea's nurse was called out to help, I wanted to wait till things had settled down abit and that Andrea had all her meds and night care done before I left.  She had a fairly good day, we had her up in the wheelchair strolling around the hospital in the morning awhile, they have discontinued some pain meds and today her nausea was a lot better.  After lunch 3 ladies from PT came by and got Andrea up into a nearly standing position with a stretcher like bed where she was strapped loosely to and then raised to a nearly standing position.  That bed, whatever it's name is, has a place to put her feet on so that when she is nearly vertical her feet bear some weight.  It was an extremely painful experience for her, the muscles in her calves and thighs were very challenged by this, no wonder, this is the first time in at least 10 weeks that she was in a nearly standing position.  She endured 10 minutes of it which they said was very good, often the first time someone is up like that they only can manage a minute or 2 the first time.  Speech pathology was in the afternoon and repeated the swallow study that she had such a hard time with last week.  This time she did much better,she first had a few ice chips, then a little apple sauce, and finally a few partial teaspoons of water.  On Thursday she will have another test, an xray performed while she is swallowing some liquid with a dye or something in it.  With that they will definitively tell how far along she is and maybe there are some exercises she can do to help along with it and hopefully she will soon be able to drink at least a little and eat something on her own.  O yes, she got some colorful beads today and was stringing them on a string, even though her hands were very shaky, but that is how she will build up strength again.  that's all for now, Goodnight.

 

Regards, Maynard

Gaining Strength

Just returned from Andrea's room, she actually had an okay day.  We had her up in a wheelchair for an hour this morning before dialysis.  After that she slept awhile and now tonight she was up in her wheelchair again.  It is not bothering her as much to sit as it did, she is a little stronger and she is putting on a bit of muscle and padding on her legs again, so she is not quite so uncomfortable now when she is up.  We still have to use a lift and sling to get her up in her wheelchair.  Pain management people got involved today, and they think her nausea may be caused by the narcotic pain control she is getting, in fact she was refusing to take it sometimes because she could tell it seemed to upset her stomach.  Now they are switching her to Tylenol round the clock.  This might be why she felt a little better today.  When she feels a bit better she is more willing to talk and also to do things like playing Uno or doing a simple craft for a few minutes. Hope she has a good night, and the same to the rest of you who might still be reading this post tonight.

 

Thanks, Maynard

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Its an Ontario website; all about organ and tissue donation. Check it out if you want to know more.

Slept Most of the Day

Sunday has been a fairly quiet and uneventful day,  We had visitors this afternoon which was nice.  Andrea was given an anti nausea IV medication which knocked her out for most of the day, not surprising after a night like she had the night before, she woke 3 times to vomit and very upset stomach.  We hope they find another medication that is more effective, she still needs to be awake during the day for PT, OT, getting out of bed and into the wheelchair etc.  Today the pump doctor told us that this is the hardest time in her recovery, when she was so very sick every improvement could be measured like a milestone,getting her off of heart support drugs one at a time, drainage tube removal one at a time etc.  Now she has improved to the point that she needs to heal, and it is not fast enough or measureable enough for her to feel any real changes herself, and it is hard for her to see clear milestones, so even though she is getting stronger, she cannot really notice the improvements that we see.  Hope she can soon feel more encouraged of herself, I think sometimes she does not believe she has improved as much as we tell her that she has.  Goodnight to all.

 

Thanks, Maynard

Quiet Saturday

Tonight I hardly know what to report, it's been a quiet Saturday, Pt was in this morning for her daily workout, otherwise we had her up in the wheelchair for 1.5 hours this afternoon.  She did not sleep very much today, maybe tomorrow will be her day to catch up on rest, who knows.  She still has bouts of nausea throughout the day, someone will need to figure out how to control that and possibly a different medication for pain control too.  Otherwise there is evidence that she is putting on muscle and tissue again, she is also gaining strength and control of her neck muscles, able to hold her head up better than before.  I wish there was an injection for faith and courage also, we all could use a boost right about now.  Please remember to pray for Andrea and us also.

 

Thanks, Maynard

Slowly Gaining Strength

Well, seems like nothing significant to report tonight, Andrea had an okay day, in the morning she sat on the edge of her bed, after we helped her up, and she sat for almost 5 minutes with very minimal help, something she could not do a week ago.  After that she had dialysis, then a nap, and after that with the help of a sling and the lifter, she was in her wheelchair for nearly an hour.  A constant battle for her is nausea, seems like she is having an upset stomach most of the time, and some of the pain medications she can have also cause nausea, so she sometimes refuses the painkiller because she is afraid of throwing up.  Slowly she is regaining strength, a little at a time, seems that she is running low on patience at times.  Hope tomorrow will continue to show gains, even though they may be small.

 

Thanks, Maynard

Showered today (first time in 10 weeks...)

Today was a good one for Andrea, in the morning they used the lift and sling, put her on a chair with wheels and armrests and she had a shower, the first one in about 10 weeks.  She sure enjoyed that, even though it wore her out.  Fayte was quite surprised to see that she could sit up in the chair and holding onto the armrests by herself, that she didn't need help with that.  After that she slept again for 3 hours, so she didn't get out of her room at all today , except she went down for a routine x-ray.  The speech pathologist came in to do the first part of the swallow study.  That did not go as good as we had hoped, she gave Andrea an ice chip to chew and swallow, first one went down okay, the second one her gag reflex made her retch so she stopped giving her ice.  It might have been different if she was not nauseated to begin with.  The nurse was not surprised, she said after being intubated as long and eating nothing for almost 3 months, it would take a little while for it all to work normally.  Tomorrow she is due again for dialysis, so if they start it real early, and she naps awhile, maybe we can get her up in her wheelchair and get out of her room for awhile.  The swallow study nurse will be back again tomorrow and will stick with it until she is able to eat and drink again normally.  Hope tomorrow will go okay.

 

Regards, Maynard

New Little Feature

It's so much fun for me to see where all the visitors are from that I added a little "cluster map" at the bottom. Within a few days it will start showing little red dots on the map and if you click on the map, you will see the stats. Enjoy :)

Small Improvements

Today was another dialysis day for Andrea and somehow it didn't get started until almost noon, so PT didn't get the workout with her that they wanted.  Since it was so warm today we bundled her up first thing this morning, and went outside a few minutes.  Tomorrow they plan to give Andrea a shower, first one in about 10 weeks.  They have been very diligent about bathing her in bed, and because of the different lines, monitors etc, they couldn't have showered her anyways.  We'll see how she manages that, we expect her to be very tired, but it will be a step in  the right direction.  Her MAP, or mean average pressure is steadily improving,that number is derived from subtracting the lower number from the bigger one in the conventional way of measuring blood pressure.  For an easy example if your blood pressure would be an easy number like 100/60, your MAP would be 40, which would be on the low side.  They first said they were happy with 55 to 80 range, but she struggled to get past the 50 mark.  Now she is in the 60 to 72 range which is very good.  Not sure why it improves slowly like that, my understanding is that her heart output was so low, and now with the pump it takes awhile to get adjusted to such a dramatic improvement in circulation.  Slowly the body gets adjusted to the better flow and the circulation improves all around.  currently she is on no blood support support medications or antibiotics, just her blood thinner  drip and anti rejection meds, vitamins etc.  She may have a swallow study tomorrow, however I don't think her trache site is completely closed yet.  That is all for now, hope to report again tomorrow with some more positive news.

Goodnight, Maynard

Out of Her Room For a While

Good evening

 

The weather has warmed up from -23 this morning to -13 or so, supposed to be melting tomorrow.  Thankfully Andrea had a better day today, the pain medication patch she is on now seems to have made a difference.  We were trained on her pump controller in the last while and what the different alarms mean, so now we are free to take her out of the ward.  We have been trained on how to switch batteries and also how to very efficiently switch controllers, so today we went driving around on 4th floor.  We went to the teen room, but unfortunately it was closed, so we went back and forth from her ward to the far end at 4E, I didn't count how many trips we made, but it was many.  She really enjoyed getting out of her room, and driving in her wheelchair has always been a favorite for her.  The pump doctor was in this afternoon and he says her blood pressure is much better, her blood test results are improving, so the next steps will be to see if she can pass the swallow test, and maybe she can start to eat a bit again.  She was up in her wheelchair twice today for a total of 3.5 hours. Dialysis will be resumed in the morning for 4 hours again, hope they start early so the rest of her day is not used up.  Thannks again for all your moral support, prayers, visits, gifts, etc.  Goodnight.

 

Thanks, Maynard

Trache Out! Bilirubin Down More

Just returned from Andrea's bedside, it has gotten very cold again, -30C this morning, should warm up by the weekend.  Well the day had it's good and bad, good news her trache came out today, the bad news was that she had a new PIC line installed.  Pump doctor thought it was arranged she would be given medazallam which is a very light sedation, just enough to sleep and she would not remember or feel the pain as it was going in.  The doctor who put it in insisted that would require an anesthetist, her blood pressure might drop, etc etc so  they only gave her local freezing and she has enough scar tissue already, so it was very painful for her.  Usually dialysis is done, starting with setting up at 7 bells, but they had an overload of patients to do, so hers was not done till the afternoon.  As I have mentioned earlier, she gets very cold from it, so after she warmed up she went to sleep for a few hours.  One other good point is that her bilirubin was down to 150 this morning.  I think in order for her to progress more they are going to need to pursue her pain control more aggressively, they started her on a fentenal 72 hour, 12 mg patch for pain control. hopefully that will take off the edge more effectively.  That's all for tonight, thanks for reading my nightly epistle.

 

Regards, Maynard