Slept Most of the Day

Good Evening

 

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

 

Goodnight, Maynard

Feeling Some Better

Good Evening

 

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

 

Regards, Maynard

Pain is better

Good Evening

 

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

 

Goodnight, Maynard

Slept Most of the Day

Good Evening

 

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

 

Thanks, Maynard

Better

Good Evening

 

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

 

Regards, Maynard

Getting Better Again

Good Evening

 

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

 

Thanks, Maynard

Explanation of what happened

 

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

 

Thanks, Maynard

Slightly Improved

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

Terrible Pain, Back In CVICU

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

Violently Nauseous

Good Evening

 

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

 

Thanks, Maynard

Not Feeling Well

Good Evening

 

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

 

Thanks, Maynard

Continuous Feeds Again

Good Evening

 

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

 

Thanks, Maynard

Dialysis Went Well Today

Hello Everyone

 

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

 

Goodnight, Maynard

Hoping For A Better Week

Good Evening

 

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

 

Goodnight, Maynard

Last Saturday

Good Evening

 

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

 

Thanks, Maynard

Day got better

Good Evening

 

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

 

Thanks, Maynard

Got Dehydrated in Dialysis

Dear Friends All

 

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

 

Goodnight, Maynard

Walked 60 feet with Walker

Hi Everyone

 

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

 

Thanks, Maynard

Waiting to See What Her Kidneys Do...

Good Evening Everyone

 

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

 

Thanks, Maynard

Walked with a Walker

Hello Everyone

 

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

 

Regards, Maynard

Good Weekend at the RMH

Good Evening

 

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

 

Goodnight, Maynard

Trying a Weekend Pass Again

Good Evening

 

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

 

Regards, Maynard

Walked 35 Feet Between the Bars

Good Evening

 

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

 

 Goodnight, Maynard

Went Shopping!!!

Good Evening

 

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

 

Goodnight, Maynard

April 6th

Good Evening

 

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

 

Goodnight, Maynard

At Home for 5 Hours!

Good Evening

 

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

 

Goodnight, Maynard

Going Home for the Day

Good Evening to All

 

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

 

Goodnight, Maynard

Very Good Day!

Good Evening

 

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

 

Thanks, Maynard

April 2

Good Evening

 

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

 

Thanks, Maynard 

At The RMH

Good Evening

 

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

 

Regards, Maynard 

Has a Weekend Pass for the RMH

Good Evening To All

 

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

 

Regards, Maynard