Throwing Up

Well it has been a very quiet day for us, Andrea slept about 4 hours starting shortly before lunch.  She threw up quite abit again this afternoon, just bile from her stomach, as her feeding tube is put in further down into the next part of the system.  They say there is nothing going into the stomach orally, first the trache needs to come out, a swallow study done, and when they have proof that she can swallow without aspirating, the food she swallows should carry out the bile with it.  We expect the trache to come out tomorrow if all goes well.  those that have experience with the trached patient, say that usually there is a very dramatic improvement in their recovery.  We sure hope so, it seems that she has been slowed because of it. That's all till tomorrow night, thanks.

 

Regards, Maynard

January 29

Well don't know what to report, Andrea had a fairly good, quiet day today, sat on the edge of her bed for 10 minutes this morning.  She had a few naps as well, totalled a few hours at least.  I think her color and the whites of her eyes are the best we have seen since the pump was put in.  The trache is supposed to come out Monday.  Everyone says that then she will improve very quickly.  After it is removed she will have to wait a minum of 48 hours and then a swallow study will be done to determine whether she can eat and drink.  She still has pain quite bad sometimes, seems to come and go.  Goodnight to you all.

 

Regards, Maynard

Not Much New

Since I don't know what exactly to report, this will likely be short.  Andrea had 4 hours of dialysis this morning, and the machines they use, they are not allowed to use the blood warmers that would normally warm up the blood before returning it to her, so she becomes very cold as a result.  The ward has ovens where warm blankets are always available, so we do very frequent blanket changes in an attempt to keep her warm.  When they are done, she usually has a long nap afterwards.  Her bilirubin was down again on yesterday's test to 168 which is good.  she was sitting up on the edge of her bed for 10 minutes again today.  She can only do this with help to situp, and she needs support for her balance, reminds me of a few month old baby learning to situp and balance on her own.  it seems like her neck is not so stiff as what it was before they took the lines out of her neck.  We just hope she can have a quiet uneventful weekend.

 

thanks, Maynard

Lots of Little Problems

Well I am not sure what to report tonight.  Andrea went down to have an ultrasound on her right arm this morning, she had some swelling in her arm and hand, so they wanted to make sure she did not have a clot.  Her arm was warm and ultrasound did not find any clot there.  That excursion took over 2 hours and by the time she was back in her room she was very tired, so after some bedside checks, she went to sleep.  After lunch  she woke up another test was done to determine if she was actually getting enough nutrition, a very simple test where a clear space like helmet was put over her head while she was lying down, and a hose led from there to a computerized machine.  this machine measures the amount of carbon dioxide she was breathing out and how much air she was breathing in, and from that they could tell how much energy she is burning.  Results showed that she needed a little more nutrition, so her tube feeds were increased a bit.  After that she was lifted into her wheelchair where she stayed for an hour or so.  She was awake for awhile after that, but soon fell asleep which is likely for the night.  Tomorrow at 7 bells they will come in and start her on hemodialysis for 4 hours again.  It is tough to fit everything into the day with physio therapy, occupational therapy, nursing care, nap time, all needing a part of it.  Now it is time to sleep here too, Goodnight.

 

Regards, Maynard

Pain Today

Today was a bit of a stand still day for Andrea.  She is so very thin and has lost so much muscle tone that she has been quite sore.  This morning her left shoulder hurt her very much, seemed like the pain killer hardly touched it.  Tonight it was her right side which hurt, where the drainage tube was removed last week.  Pt and Ot did not work with ther today, they found a wheelchair that will work for her, we hope, we had her up in it for 2 hours this afternoon, of which she slept for 1.5 hours.  It is a chair like most of you have never seen, wonder how much it cost.  Very adjustable, back reclines, whole chair, seat and back recline as one, sides can be moved in together to support her shoulders, etc.  It is very good therapy for her to sit up and get out of the bed, be more in a vertical position.  By tonight her pain was more under control and she was more restful.  When we got her up in her new wheelchair I suggested going outside as it was so warm, and so we bundled her up and went outside for 5 minutes, which was a good diversion for her.  We started with pump training yesterday and today, likely about 35 hours of it in total.  If we look at the changes from yesterday till today it seems so small, but if we look at where she was only one month ago, then she has made some good improvement, we need to remind ourselves often that we were told it would likely mean a long and gradual recovery.  Please remember her and us in your prayers.

 

Goodnight, Maynard

Jan 25th

Well Andrea had a busy day again.  First thing this morning they wheeled her down to Neurovascular Surgery and put in a new Broviac line (actually they call it something more specific, can't remember what), and were able to remove the line that she had in the left side of her neck.  they did not put her to sleep just a bit of sedation and local freezing.  That went well and a little more than an hour  she was back in her room.  Because of the pain medication she got she slept most of the afternoon.  A little after 6PM she was up in her wheelchair for about an hour, but she was having a lot of pain in her neck.  The pump nurse was in the room for awhile to teach us about the pump, it will be a total of about 30 hours teaching us everything we need to know, changing batteries etc.  She is very good at what she does, very dedicated, good with Andrea too.  Pt and Ot were in and are quite aggressive, they are trying to get her stronger next thing will be that she is able to sit upright unaided.  Removing the trache will likely be next week, Monday possibly.Well so ends my day and this report, goodnight.

 

Regards, Maynard

Jan 24

Andrea had an okay but busy day.  Somewhere in the gigantic beaureaucracy of the hospital, dialysis people  did not get their orders for Andrea's dialysis run first thing this morning, should have started at 7 AM, was 10 AM by the time they got started, so it made the rest of the day quite hectic.  Kialysis takes a lot out of her, she becomes very cold, and after she just wants to sleep. Apparently this is very common and so she slept for 2.5 hours this afternoon.  While dialysis was running they still did Pt and Ot, then different ones come by and want to check in on her also, so we did not manage to get her up in a wheelchair at all today,but she did sit up on the edge of the bed.  The double lumen line that she ahd put in her neck 8 weeks ago has become very painful, especially when they hook her up to dialysis, it also impedes her progress because she favors her neck so carefully.  Tomorrow they plan to take her down to Radiology and install a central access line so they can remove the lines in her neck.  The fancy name for that type of line is BROVIAC, it is tunnelled under her skin from a convenient spot, and enters a blood vessel somewhere not sure where they will put it.  She still has a PIC line in her arm above her elbow,same type of application, not sure whether they will remove the arm line or not.  Hopefully these changes will get her more mobility, less pain also.  The pump doc is still reluctant to remove her trache from her throat, if all goes well maybe it will come out by the end of the week.  After that they will wait a few days and do a swallow study to be sure she is not aspirating and maybe then she will be able to start eating and drinking again.

 

Thanks, Maynard

 

PS. For those of you who want to continue emailing her directly, go to Alberta health Services website, Mazankowski heart Institute, follow the links, and she is now on 4th floor 4A5 or 6 not sure, bed 2

uneventful

Today has been mostly an uneventful day for Andrea.  Her doctor was away today so did not show up, the pump nurse also was not needed today, so Andrea was undisturbed most of the day.  She was up in the wheelchair for half an hour only and was so sore she wanted to go back to bed.  We did some PT with her so at least got some excercise.  She did not require any pain killer either which is a good sign. we just hope and pray she will have a good sleep and make some more progress tomorrow and in the future.

 

Thanks, Maynard

Quiet Saturday

Well I am happy to report that Andrea had a better day today, after yesterday's hectic, busy day the quiet of a Saturday was welcome.  Her stomach pains seemed to be mostly over today, the drainage tube came out from her chest cavity also.  it was not draining anymore, and when they took off the dressings they found it had partially pulled out and was also plugged, so regardless it had to come out.  Hopefully she will not need another one anytime soon.  We got her up in a wheelchair for 50 minutes around noon, after which she was played out, she had already had physiotherapy, so she had 2 hrs of good nap time.  All the tests they did yesterday ruled out a number of things they were concerned about, so maybe yesterday's pain was muscle pain, after all yesterday was only 3 weeks since her colon surgery.  Hopefully she can make sure steps forward tomorrow.  Well it is late, so goodnight.

 

Thanks, Maynard

Stomach Pain

Well it is finally not so cold out, but now it is snowing again.  I wish I could tell you that Andrea had a fantastic day, but that would not be true.  For some reason her belly started hurting yesterday afternoon, she had a good night's sleep last night, but today the pain returned with a vengeance.  They did a whole bunch of tests,many different ones got involved, she was down to radiology twice this afternoon, Xray, abdominal ultrasound, blood tests, fluid samples taken from the stomach cavity, etc, all tests negative.  It is 3 weeks ago today she had her colon surgery, so maybe it is scar tissue, cramps, muscle pain, who knows, no infections found either.  She was not out of bed sitting up at all, PT came in and did leg exercises in bed like usual.  Her tube feeds were turned off last night and will be reassessed in the morning.  The good news is that her bilirubin came down again to 180 from 220 the last test, which is great.  This stomach upset is hopefully only a bump in her road to recovery, and when I left it seemed that her pain was less, and she was resting more comfortably.  Thanks for all the emails sent to Andrea, she really appreciates them.

 

Goodnight, Maynard

Outside Today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Today was a notable day for Andrea, she was all bundled up in her Stryker Chair and her VAD doctor and nurse and a resident doctor took her outside, not sure when the last time was that she was outside, last fall sometime.  It was -4C or so and snowing very heavily which she really enjoyed.  She was only outside maybe 5 minutes at the most.  After that she was all played out and went back to bed for a good nap.  Mid afternoon she was up in a wheelchair for the first time since surgery, but something was very uncomfortable so she soon was back in bed.  Her stomach was in a lot of pain and around suppertime she threw up some bile which made her feel somewhat better.  Her Hemoglobin is dropping a little so maybe at night or early morning she will get a couple blood transfusions, she must be bleeding a little somewhere, not sure just where.  Tomorrow she will have another round of hemodialysis again.  She still has the drainage tube in place, xrays show that she still has a bit of fluid beside her right lung.  When that stops they will remove it.  We are still hoping she can have her trache removed soon, that is the breathing tube she has in her neck.  Today she was weaned completely from oxygen prongs in her nose, hopefully her oxygen sats will stay good.  Time for some sleep.

Goodnight, Maynard

bilirubin down further

Hope this finds all of you in good health.  Andrea had a fairly  uneventful day today, her bilirubin # was down to 219 this morning from 272 at the previous test, so it is certainly moving in the right direction, the lower the number the better, they would like to see it less than 50.  Pt and OT were both in again today, they got her up in the Stryker chair today, and they said they want to get her up in a wheelchair that is able to recline, tomorrow.  The Pump doctor said that the goal for tomorrow is to get into the fresh air outside  Otherwise I don't know what to report, O yes, she finds it hard to situp, after lying down for so long, her sitter downer gets sore quickly, so they are trying to find the right cushion for her chair.  If things continue to improve like they have, possibly the trache will come out next week.  Faye is spending the night with her again.  They roll a cot into the room in the evening and take it out again in the morning, as there is hardly room for it.  Thanks again for listening to my repetitious rambling.

 

Thanks, Maynard

Moved out of CVICU

Well today was a big day for Andrea.  After just over 7 weeks in intensive care she was moved up to 4th floor.  The intensivist on duty has the last word in most decisions and he was confident that she was stable enough for the transfer, but they said that if we had any concerns at all, we should just call them, and her heart surgeon is following her on the floor too.  They told Andrea that she should not regard it as a big setback if she ended up back in CVICU, so we are a bit nervous because the care is less intense.  The good side of this is that she is in a much quieter place, the nurses were instructed to let her sleep and not to bother her with hourly checks.  I guess she found the move so exhausting that she slept mostly the rest of the day and very soundly.  Faye is staying with her, they brought in a cot for her and the room is a private one too, so hopefully they will both sleep well.  Physio therapy will be following her more closely and will begin pushing her as hard as she can take it, they tell us that mobilization and nutrition are the 2 main things that will help recovery the most.  Please remember her in your thoughts and prayers, as she is still a very sick girl.

Thanks, Maynard

"Okay Day"

Andrea had an okay day, when we got to her room shortly after 8 AM she was sitting up in the Stryker chair again.  The chair is not very padded and she has lost so much muscle mass that it is very hard for her to sit up too long, tomorrow they want to give her some form of padding on the chair.  The intensivist thinks that she can be transferred to the ward tomorrow, those who are maybe a bit more involved in her daily care think she needs to get stronger yet before she can be moved.  We tend to agree that it is too early to move her out yet, she might end up in CVICU again if she is not ready to move out yet.  She might have her drainage tube removed tomorrow, nothing drained out today, probably after an xray in the morning they will decide on that.  She sat up in her chair for almost 2 hours in the morning and in the afternoon it was for an hour again.  She is having hemodialysis every other day now so today she had another session of 4 hours, so altogether she had a busy day, and did not sleep as much today.

 

Thanks, Maynard

 

PS Thanks for the direct emails to her room, she really appreciates them, she got nine today.

Tired from Sitting Up

Spent a long and quiet day alone with Andrea, seemed very long as she slept most of the day, waking up for only short times.  When we got to the hospital a little after 8 this morning, her nurse had her sitting up in the Stryker chair where she sat for an hour.  Later in the afternoon she awoke long enough to get her back in the Stryker chair and went up to 4th floor healing gardens.  She managed to stay awake the whole time we were gone from her room.  the nurses say that when a patient is so weak it is not unusual to have them sleep most of the day as the energy they use to situp is about all they can manage, and it tires them out to the point that they just want to sleep.  When she sleeps, it is very deep, and she even snores a bit, I guess the deep relaxed sleep is therapeutic too.  She still has a drain tube under her arm and it gives her quite abit of pain at times.  Hopefully it can soon come out.  Well it is time to close and get some sleep, hope it soon warms up outside.

 

Thanks, Maynard

Sitting Up More

Good Evening

 

Hope all of you are inside on this cold night.  Andrea was in the Stryker chair today for an hour and spent all of it in the healing gardens on 4th floor.  She sure enjoyed that.  The drainage tube that was installed yesterday was hardly draining at all, but it gives her a lot of pain at times.  Today she seemed more alert again after having two consecutive nights of good sleep.  Sitting up in that chair seems to help clear her lungs quite well, and tomorrow morning she will have had her trache capped for 72 hours, although at times she is getting a little oxygen via her nose prongs.  The days activities sure tire her out so that helps to get a good night's rest, which is what we are needing and planning to get soon.  Goodnight

 

Thanks, Maynard

Drain Tube

Good Evening

 

Just got in and it seems very cold outside.  Andrea was not out of bed today, although she sat on the edge of the bed again.  For a week or so the docs were watching some fluid they saw slowly building up around her lungs and so today they put a drain tube between her ribs below her right arm and were able to take it out.  I saw the before and after x rays and there was quite a diference to be seen.  they expect the drain to be in for only a few days.  Otherwise I don't know what to report, just hope she can sleep again like she did last night, which was very good.  have a good night.

 

regards,Maynard

Email Andrea

Good Morning

Last night I forgot to mention that it is possible for anyone who wishes, to send Andrea an email directly to her bed.  The volunteer organization, Friends of University Hospital, receive these emails and then hand deliver them to the various patients that had emails sent to them.  Here is the address. 

 

http://www4.albertahealthservices.ca/wellwishes/          Thanks, Maynard, 

PS  Her bed is Mazankowski heart centre CVICU, Unit 3A7/3A8 room 1

 

Out of Her Room Today

Sorry this is so late but I just returned from Andrea's room.  She had an alright day, sat up on the edge of the bed, I think, did PT, played a game of UNO with the OT, they finally quit because Andrea kept on giving her take 4 cards and they were both tired of the game.  This afternoon they got her into the Stryker chair and 3 nurses and the Resp tech and us took her up to the 4th floor healing gardens, then on up to 5th floor, made a short loop around and back down to her room.  She was out of her bed for 40 minutes which she really enjoyed.  Her trache was capped this morning and still was when I left, they are planning to leave it that way overnight at least.  They were also starting her dialysis up to run overnight again.  There are some improvements, albeit small, but we are very thankful for every small step forward she is able to make.  Now it is time to hit the horizontal again.

 

thanks, Maynard

 

PS Andrea got a few emails delivered today to her room, thanks.  For those who might have missed it, I posted an address recently.

This is so Cool!!!!

I googled Andrea Froese and heart transplant and I found a news article from when Andrea got her (I think) first heart transplant! I have a picture of her from a news article way back that I uploaded too (she'd probably kill me though) but she's so cute! Click on the article to get a bigger image.

Heart transplant successful for Manitoba girl
Last Updated: Friday, June 8, 2001 9:45 AM ET
CBC News
A seven-year-old girl from Roblin, Man., remains in critical but stable condition following a heart transplant operation Thursday. Andrea Froese underwent surgery at Edmonton's University Hospital.
In Roblin, her grandmother Susie Froese, has been told by family members the operation was a success. "They were changing her sheets. She opened her eyes. They told her, 'you've got your new heart, everything is over now.' And then they asked her, 'do you have pain?' and she said 'no.' Then she drifted off again. So it sounds good."
Andrea had been waiting for a new heart since last August. She, along with her parents and brother, have been staying in Edmonton's Ronald McDonald House for almost 10 months, waiting for an organ to become available.
Susie Froese says the family suddenly received news Wednesday that a donor heart had become available. "We heard about it only about 4:00 yesterday. Once they have the heart, they move very fast."
The Froese family issued a statement expressing their gratitude to the donor family.

I'd also like to thank the donors family for giving life to a girl who I would meet weeks later and become best friends with almost instantly...

More Heartmate Info

Hey I just found more information about the heartmate including some images this time.

The top image is a generic image showing external and internal. The bands across the shoulders are optional, they support the batteries, which can also be carried in a purse or bag. The "white thing" around the waist is external, theres a wire coming out beside the belly button that connects to that device which is worn in a fanny pack.

The second picture is a close-up of the heartmate attached to the heart, and the bottom image is the same, just less "zoomed in". An interesting fact about heartmates is that people on them really have no pulse because its a smooth-running pump. So all you medical people and first-aiders, if someone doesn't have a pulse, make sure they don't have a Heartmate!

Uneventful But Positive

Well, Andrea had a fairly uneventful day, sat on the edge of her bed, did PT,etc.  She seemed quite tired after yesterday's strenuous activities.  The doctors have told us many times to expect a good day followed by one or two not so good ones.  She is now off isolation, meaning that she is not considered to be contagious to others, so the nurses are not required to gown up and put on gloves every time they enter the room or do something with her.  They have also discontinued all antibiotics the way I understand, her white cell count does not indicate any infection at this time.  They also came in and changed her trache for one that should be easier to breathe past.  The nurse that had her today has asked to look after her tomorrow also, and she is determined to get her up in a Stryker chair and get her out of the ward, just a short ride around the floor, new scenery, today just didn't work out for that.  Because we are with her all the time we may not see the small improvements that happen, but those that have not seen her for awhile and know what to look for, sure do.  She is getting excellent care for which we are very grateful, big new state of the art facility, large private room, top notch doctors and nurses also.  It's easy to see that they love their work, and some of them have certainly taken a shine to our daughter. Time to sign off.

 

Regards, Maynard

VERY Good Day!

Hope you are all safe at home on this cold night.  Just returned from Andrea's room, she was still awake but hopefully will soon sleep as she has not slept today at all or very little at best.  I think today was possibly the best day she has had since the heart mate II was installed at the end of November.  She sat on the edge of the bed for 15 minutes this morning, did PT and occupational therapy came in and played 4 games of Uno with her, she won half of them.  In the afternoon they came in with a Stryker bed, like a transport stretcher, flat bed that goes up into a sitting position very easily.  Andrea had understood that she would be able to get out of her room and go down the hall and out of the ward but they were not ready to get out yet, she was very disappointed to not leave the room.  She sat up in the Stryker chair for a half hour.  Hopefully tomorrow she can leave the ward for a short while.  She is slowly gaining strength, obvious when they do PT with her.  She seems to not have much trouble with her speaker valve and is on it from early till night.  Actually tonight they were going to try another fitting on her trache and see if she can manage to sleep with it all night.  She did not manage with her trache capped very well, so when the doctor heard about it he suggested changing it to a smaller one.  When she is on the ventilator or the speaker valve there is a cuff that they inflate to seal it to the windpipe.  When they cap the trache they deflate the cuff via a small line, and the thinking is that the trache is too large and that even with the cuff deflated there is not enough room around it to breathe normally.  If they can get that sorted out, and she can go 72 hours with it capped successfully, then they will consider removing the trache, but we don't expect that anytime very soon.

 

Good night to you all, Maynard 

Trying to Maintain Fluid Balance

It is late and the end of another long day, so I'll try to make it short.  Andrea had another relatively uneventful day today.  She slept quite well last night, but this morning her blood pressure was quite low again, so they gave her more blood and restarted her on a blood pressure medication again, and it corrected itself in a few hours.  When her blood pressure is so low it makes her very lethargic and tired.  It was much better in a few hours and she was feeling somewhat better.  The intensivists work a 7 day rotation, and the doctor who came on for her, last had her about 2 weeks ago, and when he came in he thought she was very weak and shaky so he did a bronchoscopy, putting a camera down her trache into her lungs to see if there was infection and mucus there and she was clear, he also did an ultrasound to see whether she had fluid around her lungs and he did not find any, so that was a relief.  Both her pediatrician and another person who last saw her on Friday saw her again today, and both remarked how much better she looked than 3 days ago.  Her pump doctor promised that if she was off the dialysis machine tomorrow, he would get her up in a chair, so hopefully that can happen tomorrow.  She seems to be tolerating her feeds quite well, her physiotherapist also remarked on how much stronger she seemed when she came in to give her a workout.  O yes, the likely reason for the low blood pressure is that dialysis dried her out too much, it runs a constant speed according to how it is set, so night or day, sleeping or awake and active, a person with the heart mate II must maintain a very careful fluid balance and not dry out too much, or else the pump starves of blood, something which those of us with our original hearts, is automatically looked after.  We compensate by  our hearts slowing down when we sleep conserving energy and maintaining fluid balance.  That is why most of us first make a visit to a restroom when we awake in the morning and then we are needing to drink something shortly after.  Well it is getting late so I'll sign off.

 

thanks, Maynard

 

PS Please forgive the short and sometimes inaccurate lessons on plumbing and such like.  I'm quite sure this contains a lot of false information, but this is how my weak and impoverished mind understands most things.

Not Much Change

Another long day is gone and I am back alone at the RMH.  Andrea had a sideways day today, quite tired mostly, dozing off and on.  She managed to situp on the edge of the bed twice today but not for long stretches.  She also was on speaker valve from around 8:30 this morning and they were going to keep her on it till midnite.  She was maintaining good oxygen saturations also.  Otherwise I don't know what to report, just hoping she has a very good sleep and a better day tomorrow.  Thanks for all your support.

 

Goodnight, Maynard

Baby Steps Forward

Just returned from the hospital, much snow has fallen in the last 24 hours and they say more is on it's way.  Andrea had a fairly uneventful day, after the excitement of the last few days with her cousin and no naps, today she was catnapping quite often for short times.  The stimulation of the last few days was good, it gives her goals to look forward to.  Even so she sat on the edge of her bed 3 times today  for 5, 15 and 3 minutes respectively, and was pain free after, also able to hold her head up better.  For a short while she sat up unaided.  Another good thing was that she had the speaker valve on at 9 AM today and they were planning to leave it on till midnight.  They started out with an average amount of oxygen support this morning and it was only one third of that when I left.  Tomorrow they will likely try her with a plugged trache and see how she manages with that.  The respiratory technician said it is actually harder to breathe with the trache capped than without the trache because that is an obstruction to breathe around when it is in place.  Her anti rejection meds are being given through the feeding tube orally again, they were intravenously till now.  After sitting up for 15 minutes this morning she asked for a reward, so I said I'd give her 20 dollars, she said no, she wanted a mouth swab.  She is very thirsty and begging to drink, but until her trache comes out and a swallow study is done that proves that swallowing works, she will have to go without drink.  She also has cabin fever, so the pump doctor said as soon as she was off dialysis and her trache capped he would get her bundled up and take her outside for fresh air.  She is also on intermittent dialysis now, meaning that from 8 PM till 8 AM she is dialysed but not during the daytime.  These are baby steps, but at least in the right direction, hopefully no more serious setbacks.  Hope I can get to the hospital in the morning with all the snow, I guess we should have our old 4 by 4 truck here now.

 

Goodnight, Maynard

 

(For those of you who don't know, Maynard wasn't kidding about "much snow"! We got around a foot, everythings plugged up! Just a little point of interest...)

Speaker Valve for 11 hours!

Just returned from Andrea's room, she just fell asleep.  Today was another full day for her, a girl cousin from Manitoba whom she is very close with, spent parts of the last two days with Andrea.  It seemed like a real incentive and diversion for Andrea.  She managed to situp for 13 minutes today in the morning and even stood briefly with lots of help, she also was on the speaker valve for almost 11 hours too.  she spoke her first words to us in more than 5 weeks too, although they were not many.  We also have a paper with the alphabet on it in big letters, and she has become very adept at spelling out whole sentences, we have to really concentrate to keep up with her to understand her thoughts and questions.  She is still on fulltime dialysis but hopefully soon it can be done only at night.  To her it feels like she has been in her situation forever and she has become quite impatient to get out.  Today her pump doctor promised that as soon as dialysis can be stopped and she is able to sit up,they will get her up in a wheelchair, and get some fresh air outside.  I think it would have a very good psychological effect on her.  Hopefully she can continue to make real progress that she can recognize and feel good about also.  Thanks to all for your encouragements and your patience in putting up with these emails, even if they become rambling and lengthy epistles.

 

Thanks, Maynard

The Same

Today was about the same as yesterday in terms progress.  In the morning Andrea had another scope down her throat because the hemoglobin fell during the night, indicating that she was bleeding internally somewhere.  Because of the color of the stool they knew which area it had come from.  What they found  was that her stomach ulcers where they had put clips earlier actually looked better, and she had no clear bleeding anywhere, but her feeding tube which went through her stomach into the intestine, had pulled back and was rubbing around on the stomach wall and making it raw.  It also could be the heparin level being plenty high and making her stomach sore.  They stopped heparin and introduced something to lubricate and soothe the stomach wall.  She is getting a little stronger every day and we borrowed an IPAD from the children's heart society which she played around with a bit.  Right now she needs incentive, it has been over 5 weeks since she went into the CVICU.  We still don't know how much her liver or kidneys will recover.  All we can do is take it one day at a time.  The nurse who has her tonight had her the night just before her colon surgery, and she thought she was better than that night.  Please remember us, sometimes we are physically exhausted but still need to carry on.

Goodnight,Maynard

Down a Little But No Liver Damage

Don't quite know what to report tonight, no big improvements really, the setback was that she has some pulmonary edema meaning that fluid is collecting in the tissues surrounding her lungs a bit, so they resumed dialysis late afternoon yesterday.  Otherwise it seems that her digestive system is going along fairly well, she seems to us that she is a bit stronger, her hands are not so shaky, when she sat up on the edge of her bed this morning she appeared stronger.  She still is having a lot of pain when they reposition her or make her situp.  Weaning her from the ventilator is somewhat delayed because of the fluid build up in her lungs, so today she was not on the speaker valve at all.  Hopefullly tomorrow she will have improved enough that the speaker valve can be used for a few hours at least.  All along the biggest concern of all besides the heart has been the liver, and they have been wondering about it because that is one organ they cannot do anything about, it will have to heal on it's own.  Today she had a liver ultrasound and they found nothing abnormal, no dilated blood vessels or plugged ones either, they could see that the gall bladder seems irritated and the duct from it still has sludge in it.  That could explain why her bilirubin is so slow to come down, the last few days it went up again, but it could be the TPN which they discontinued today.  Time alone will tell wht happens but it seems like a tentative indicator that her liver showed nothing too abnormal.  Well it is time for some sleep so goodnight.

 

Regards, Maynard

 

Tired

If you would ask Andrea how her day went today she would likely say not too good.  That is mostly because she needs mobilization and nutrition more right now than anything else, so the doctors say, at the same time not pushing her more than she can do.  She had a poor night last night awake a lot, too much commotion and lights on and off etc, on top of that she was so tired out from the day before without a nap.  Then when she is put on speaker valve as a step toward weaning her off ventilation it requires more effort on her part too.  This afternoon she managed to sleep for 1.5 hours with the speaker valve which was a first for her, her oxysats stayed good, CO2 levels were low also, and after she woke up she felt a little better.  Remember though that she is having someone either checking her various pumps, changing dressings, washing her up, doing physiotherapy or something most of the time, so she is tired from all the activity.  X-rays this morning show a little extra fluid around her lungs, which is no wonder since she has hardly moved since a week ago.  The steps forward are small but are going in the right direction at least.  Being willing to work through her pain and weakness will be a challenge.  Faye is with her again tonight.  Remember us in your prayers please.

 

Until next time, Maynard 

Small Progress

Today seemed to be a day of small progress, Andrea had more pain today than yesterday, and generally wasn't as cheerful as usual, although tonight she seemed a little better.  Thankfully her stomach is moving the waste through, the vomitting seems to be over, she does not complain of nausea either.  But she is so weak and frail that her recovery will at best be very long.  the plan is to try dialysis at night only and see if her kidnes will start up again, this will allow more active physiotherapy and to try to get her mobile again.  Today she was on the speaker valve for 5 hours again which is a lot less support for breathing than being ventilated, but she quickly tires out so today was done in two sessions.  Tomorrow they want to get her sitting on the edge of her bed which will be the first time since surgery on Friday.  Her pain is mostly her stomach incision, which the surgeon today said was healing up nicely.  As you can see it is an emotional rollercoaster we are on, pray for strength for Andrea and her parents to endure.

 

Thanks and Goodnight, Maynard 

Good Day

Andrea had a fairly good day today.  She was awake most of the day and alert and not in too much pain, except for dressing change repositioning her etc.  She is up to 45 mls per hour tube feeds, most of her blood pressure support meds are off, they are not giving blood transfusions at all now, she has been restarted on heparin to reduce her chances of clotting her heart mate pump.  She was finally feeling good enough that we had our christmas gift exchange around her bed, Jeff and Twila were with us and she was very thrilled.  Today Dr Sobey the intensivist who is also a gastro surgeon and has been following her very closely, said he hoped she would be moved out of the CVICU and onto the ward this week.  They are hoping to get her weaned off her ventilator ASAP and be able to remove her trache.  It may be somewhat unrealistic to think she could be moved out of the CVICU this week, don't want to have our hopes set too high.  It is very late so I will close.

 

Thanks, Maynard

Big Improvements!

Good Evening to All

 

Well 2010 is history and may 2011 be better please!  It is maybe too much  to hope for , but maybe, just maybe Andrea has turned a corner this afternoon and is on the mend at least in a small way.  This morning her pain was very bad but by midafternoon she was started on a PCA pump, a self administered system where she holds a switch in her hand and it is set to give a preset amount of painkiller when she presses the button. It is also set so that she cannot overdose because it will not activate more than a preset time interval.  At first she was trying too often to give herself pain medication so they increased the dosage a little, and she was still asking for more than the machine would allow, that is how they determine how much pain killer she actually needs.  Then she slept awhile and after she awoke she went for nearly two hours without activating the pain killer, in fact we had to remind her that she could do it as needed, but she actually went long stretches without  using her switch and said she did not have pain either.  In the evening the effects of her sedation medication had worn off and she was fully awake and comfortable.  Her bilirubin was down to 294 this morning and 274 this afternoon which is a very good sign.  The cardiac surgeon was in this afternoon with the Gastro surgeon and both were pleased with her progress. The cardiac surgeon said he thought that in 4 or 5 days she would be sitting up in a chair.  Faye is staying the night with her, and as she improves she hopes to come here to RMH for the nights.  Andrea also had her tube feeds increased to 40 mls/hour tonight.  She sure is a lot of work for the nurses, maintaining her med pumps, washing her up and keeping the bed linens changed, all the paperwork done too, most of them just thrive on the challenge though and some even request to look after her instead of 70 year old men, they seldom have a teenager as a patient.  Well it's time for bed.

 

Happy New Year's to all, Maynard

Andrea's surgery-Went Great

Andrea went in for her stomach surgery at 10 AM this morning and was back in her room at around 2.  Everything went well, they had a full crew on hand in case anything went wrong and nothing did.  Her friendly little pump had no hiccups, her blood didn't clot or thin out, unnecessarily either.  Her colon was not perforated and they had no contamination either they told us, so now maybe she can soon be on the mend.  They will sedate her for the night so that she can rest comfortably.  She was awake briefly when she returned from the operating room, but she will mostly sleep tonight we expect.  The plan is to resume tube feeds at a low rate tonight.  Otherwise I don't know what to report, so a happy New Year's Eve to all.

 

Thanks, Maynard