Surgery In Progress

Hello Everybody

Andrea went into surgery about an hour ago to remove a part of her colon which was bleeding from an injury she likely got sometime before her pump was put in.  The injury is likely from a lack of blood flow.  I will try to report again tonight.

thanks, Maynard

Stomach Surgery Tomorrow

Well the surgery that Andrea was to have today was postponed till tomorrow.  Hopefully if no emergency surgeries come up she should be first case in the morning.  She is having very much pain in her stomach, and the doctor said that the pain of the incision would be small compared to what she is experiencing now.  She is on a lot of pain killer right now so she has been drifting in and out a lot today, and is right ready for relief.  Today her pump doctor told her that he wanted to play volleyball with her when she gets better, and he was rewarded with a faint smile, the only one we have seen in at least a month.  The surgery in itself is not that risky, very many are done every year, but with the VAD it complicates things somewhat.  She was wide awake when the doctors explained it to her and she nodded her head to show that she wanted it the sooner the better.  This might be tonight's email so don't worry if there is not another till after surgery.  Please remember her tomorrow, her doctors too, as they proceed with surgery.

Thanks, Maynard

Colonscopy

Just returned from the hospital alone, Faye is staying with her again tonight.  After Andrea was so low 2 weeks ago, they offered to bring in a lazyboy recliner so Faye has been spending some nights there, says she sleeps fairly well in it.  Andrea had a colonoscopy today because of her internal bleeding and there were no more spots bleeding than 2 weeks ago, but they are still there and oozing, so they are considering removing part of her right colon.  Before they do that though they want to try giving a drug whose name I can't remember, which sometimes helps the gut to heal up inside.  They started this drug right after her colonscopy this afternoon, and when I left there was no evidence of any blood being passed at all. Tthe intensivist in charge was a general surgeon for many years , and he is the one who wanted to try this medication out first although he was very dubious whether it would help.  He came in the room just before I left and was very surprised she had not passed any blood yet, but he said they would watch her hemoglobin very closely, which will indicate if she bleeds more or not.  Otherwise she was still in pain from the scope down her throat yesterday, besides the procedure done today.  Otherwise she is quite alert and awake when she is not under the effects of her pain medication.  We are getting a little impatient with all the delays and setbacks and now this, but with the help of your prayers and support we can have strength and hope, knowing that God is in control.  Time to sleep so goodnight.

 

Thanks, Maynard

Internal Bleeding Again

Just returned from hospital, Faye is spending the night with her, she passed a lot of blood last night, so today they scoped her stomach from the top again and found the clips which they put in on Sunday were holding and she is not bleeding there so it must be from her colon.  Right now it feels like if she could get over her gastrointestinal issues she could make some real progress.  Her coughing is less and she is able to do a stronger cough, so she should soon be weaning off the ventilator and be able to have the trache removed.  All around she seems to be a little stronger and is more alert every day.  We just hope she does not need surgery on her stomach to heal it.  She sat up on the edge of her bed for a few minutes again today.  They restarted her TPN again as she needs to have her nutritional needs met also.  Today was four weeks since the heart mate was put in, seems to be doing it's job okay.  Well it is late and I'm tired so I will stop before I repeat myself and bore all of you too much.  Please continue in prayer for Andrea, we sure appreciate it.

 

Thanks, Maynard

More Today

It is late so this will be short.  Andrea had an okay day except that she began passing blood, I guess her blood got too thin.  Her feeding tube did not goin after all so she has been without nutrition for 24 hours already.  Heparin (blood thinner) was withheld, and she had another unit of blood again, hemoglobin was staying good.  Nurse said tonight that nearly every heart mate patient went through the same bleeding problems before it got sorted out.  She also said since a week ago when she last looked after Andrea, she saw good improvement all around.  They are trying to get her less ventilator dependent every day, but it is slow going.  Her bilirubin was down 102 points this morning also.  Well it's time for dreamland so goodnight.

 

Thanks, Maynard

PS by Nebs
I found a computer i can use today and i will be home tomorrow night so I should be posting updates by Wednesday morning.

Two Days Ago

Merry Christmas everyone

 

Spent a fairly quiet and uneventful day with Andrea.  Today's progress was maybe a little sideways in some ways and straight ahead in others.  She maybe overdid it yesterday with her trache capped for 6 hours, today they tried capping it in the morning and she kinda panicked so they resumed ventilating again.  In the afternoon they put the speaker valve in and she had it for 6 hours.  The respiratory tech said that gave only a little more support than with the trache capped and nasal cannulae giving her oxygen support through her nose.  It seemed that when she sat on the edge of the bed that she could do it with less support and help, although it was not for as long as yesterday.  Her bilirubin had shot up a few days ago till almost as high as it had been, today it had come down 50 points again.  this could be that her liver function is slightly improving again, also her TPN was discontinued 24 hours ago, which could explain liver improvement as TPN is somewhat hard on the liver over the long term.  She also looked at a magazine for a few minutes, which was the first time since surgery.  Faye's sister and brother in law came this morning and plan to leave tomorrow afternoon sometime, so we were not completely alone today.  Things were very quiet in the hospital today, very little action anywhere to be seen.  Hope you all had a good Christmas.  Goodnight.

 

Love, Maynard 

Update-7hours ago

Had an opportunity to get this done at noon so here goes.  Andrea had a good night's sleep and looks a little better this morning.  It's probably too soon to give an accurate update though.  One huge positive is that her bilirubin dropped 102 points from yesterday, for which we are so thankful.  It means her liver is going the right direction.  Gastro intestinal docs were very relieved yesterday to find the 2 ulcers yesterday which they could fix.  So far it is not clear whether it is fixed or not, as they with held her tube feeds overnight.  They are putting her tube back in her nose now so they can feed her that way and also give her oral meds that way.  Otherwise her blood pressure is pretty good, she needs to be restarted on Heparin again to prevent blood clots in her pump, with that there is risk of internal bleeding.  Don't know what else to add, I'll try to post again tonight.

Regards, Maynard

Update from Dec 26

Well today has been a day of some disappointment for us.  Andrea was struggling with her blood pressure last night and this afternoon  when seeing that she was passing blood again, they decided to scope her from her throat and found 2 ulcers that were bleeding, so they clipped them, not sure how that is done.  She was in considerable pain from it so they gave her painkiller to knock the edge off, so now we hope she is sleeping for the night.  They gave her 3 or 4 units of blood today plus some albumen, which is a blood product also.  A possible cause for the bleeding is a little too much blood thinner which she needs for her pump.  It is a fine balancing act they are doing, juggling her meds one way and another, and there is very little room for error.  Hopefully tomorrow she can make some solid forward progress again.  Please continue in prayer for her and us too.

 

Thanks, Maynard

Looked Better

Hey we went to see Andrea today before headin to the airport. it was short cause she was tired n all but she looked some better and she could whisper a little-my name in fact :-) its just really hard to see her so unergetic cuz shes always been burstin with energy. also i miss her eyes twinkling... but its definitely better! nebs

Ha! If there is any big news i can send it from my cell like this! Merry Christmas friends!

Christmas in ICU...

Christmas Eve

 

Well here it is Christmas eve again and we are spending the second one in the hospital here.  O well somehow this too shall pass.  Andrea had an okay day, no huge improvements, but a few small ones.  Her trache was capped for 6 hours today, meaning that she was getting some oxygen from nasal prongs, but she was also using room air naturally.  After 6 hours she was very tired and asked for ventilation support again.  Her TPN, intravenous nutrition was discontinued today, as now all her nutritional needs are being given via the nose tube, so far her stomach seems to be tolerating that alright.  Hopefully now her bilirubin number will come down, as TPN is tough on the liver.  She also sat on the edge of her bed for 10 minutes again and did not seem as weak as she has been.  O yes, with her trache plugged she was able to whisper to us too.  They are giving her a mild sleep aid and she seems to be sorting out her days and nights alittle better.  It is late so I will try to post again tomorrow night.

 

Goodnight, Maynard

 

PS by Nebs

We will be gone the next few days. I don't know how often I'll be able to check my email and send you updates but I will as often as I can. MERRY CHRISTMAS

Starting To Breathe on her own

Today was an okay day for Andrea.  She was on a speaker valve twice today, in the morning for 2 hours and late fternoon for 3.5 hours.  That is when they disconnect the big tube from her trache and put a small valve on which allows her to whisper.  It also allows them to give her some oxygen at the same time, but she really has to breathe on her own as well.  She was asking to go back on the ventilator tonight, she was so tired out, even though her oxygen sats were good.  The last 2 weeks her core muscles that make the rib cage and diaphragm expand and contract had a holiday and they lost a lot of muscle tone and strength and now they need excersizing so she can breathe again on her own.  The next step will be to plug the trache so that she will do all her own breathing again through her nose and mouth.  Her tube feeds were increased again and hopefully by tomorrow night they will be able to discontinue her TPN, the intravenous nutrition.  She also sat on the edge of her bed for 8 minutes again today but she is very weak.  We would like to see faster progress, but we need to be happy for the small steps forward that she has made.  Thanks again for all the support and prayers, the meals, monetary help etc.

 

Goodnight, Maynard

Some Better

Andrea had a fairly full and good day today.  When we got there this morning she was still asleep from a tiny dose of propafol and a mild sleep aid.  She was awake most of the day except for a nap around 6 PM for awhile.  Physio therapy were in this afternoon and gave her a very extensive workout to strengthen her arms and try to limber up her shoulders, as she has stiffened up somewhat.  Later on they had her sitting up on the edge of the bed for 7 minutes.  She was very weak and wobbly but she wanted to do it quite badly.  They also disconnected her trach ventilation for 2 hours this afternoon to help her rib cage muscles strengthen and help her breathe.  She will have to be able to handle 48 hours on her own breathing without the machine before they are able to remove the trache.  Although she was very tired tonight, she handled her workout, sitting up, breathing on her own, etc., quite well.  During the night last night they were able to stop all her blood pressure support medications and she was able to maintain good pressure on her own.  Unfortunately during the day her blood pressure dipped and they restarted her on one of them again, tonight's nurse said it was likely because of the dialysis machine drying her out a little too much, hopefully it will correct itself soon, it had improved alot by the time I left.  They had increased her tube feeds today also, they want to get her off TPN, her intravenous nutrition as it is hard on her liver on a long term basis.  I forgot to ask what her bilirubin was this afternoon, this morning's was the same as last night's.  There is a very good intensivist doctor in charge of her and today he said he was not so concerned about her bilirubin, to him the biggest indicator was how she was feeling, he felt that as she continued to improve her liver wuld look after itself.  She is clearly not out of the woods yet, but she is making some small steps toward recovery. Time to get some sleep, hope to report again tomorrow night.

 

Thanks, Maynard

Trach In

It is very late so I hope this will be short, and if you read this morning's post it is about what I had hoped to report tonight.  Andrea had a tracheostomy this afternoon and some other things done while under sedation.  She is still lightly sedated and will be till morning, nothing to be alarmed about, she needs the rest. tomorrow they will start weaning off her breathing support and hopefully she can soon be off support for a few hours at a time during the day, and in the not so distant future can have the trach removed.  Her bilirubin went down a whole 53 points today which was very welcome news.  Heart support meds are very minimal now and they hope to totally take them away soon, as her blood pressure is quite good.  They restarted her tube feeds again tonight.  We want to be back there very early tomorrow so it is time to sleep.

 

Thanks, Maynard

Trach In and Bilirubin Up

10:30 Am

Quick update here.  Andrea did not do well without the breathing tube, she hardly slept last night at all, so as I am typing here they are reintubating her again.  Docs say her lungs are okay, her muscles that we do not even think about, are so weak and tired and she is having to put so much energy into breathing that it stalls her progress.  She needs to get up and be mobilized and move around to regain her strength again.  She is not strong enough for this on her own, so this afternoon they plan to do a tracheostomy, that way she can have full suppport at night so she can sleep, and in the day time they plan to plug the trach a few minutes at a time, gradually increasing the time off support until she is well enough to breathe on her own again.  Often this process takes a couple weeks to accomplish.  Her bilirubin is also up today to all time highs again, nothing we can do about that except wait for her various systems to heal again.  On a positive note, they have discontinued one very strong heart support medication, and reduced the other one to a very small dose.  In spite of this her blood pressure is much improved her central venous pressure is lower, which means that the right side of her heart has significantly recovered.  Her heart mate II is also working well.  She is also very clear altho she does not talk.  After the trach is in, when they plug it, she will be able to talk, something we really look forward to.  Hope to get another update out tonight to you all.

Thanks, Maynard

Transfusions and such

Good Evening (yesterday evening)

Today we have experienced a few small steps in the right direction.  Andrea had her breathing tube removed late this afternoon which is a big relief for her.  Her day nurse was very dubious whether she would actually be able to manage on her own without her oxygen saturation going down and needing to be ventilated again.  Every hour that she can manage without ventilation makes the likelihood of needing assistance more remote, unless some other crisis shows up.  Another thing we had been waiting anxiously for was that her gut would start working again, and today it looks like it began again, and without bleeding, which is a big relief.  She is still very weak and very shaky, hopefully tomorrow she can sit up on the edge of her bed.  The negative is that her hemoglobin is very low, she is getting another transfusion now.  The other issue is that her white cell count is up also, which indicates an infection somewhere, today the doctor said that she has had pneumonia, although mostly under control.  Every few days her tubes need to be replaced and even started in new locations.  We expect that to happen tomorrow.  She had a real good uninterrupted sleep last night and we hope that is the case again tonight.  Thanks again for all the support, cards, emails, phone calls, prayers,etc.

Till tomorrow night, Maynard

PS I hope none of you understood that Andrea had a wheelchair ride Saturday, she just asked for it.  She is also asking to drink, but that will need to wait till she has a swallow study.  Her bilirubin was also a little lower today.

Bilirubin Up Again

Good Afternoon

Need to get this sent out by 5 oclock, so here goes.  Andrea is much the same her bilirubin number was up at the last blood test at 4 AM by a little bit.  I guess it is just wait and see how things go from here, otherwise she feels much the same.  They are considering a tracheostomy, possibly this week.  Then that horrible tube in the mouth can come out.  She is not supported very much by the ventilator, but she is not strong enough to manage on her own yet.  Everyday we hope for some improvement, we don't always see it. I'll try to report again tomorrow sometime.

Thanks, Maynard

Betterish

This office closes in a few minutes so I will be brief.  Andrea has had a little better day today.  Her bilirubin nunber is down a little bit again, hopefully the peak is behind.  She is more alert and when awake is wanting a little activity, though she tires easily.  Today she was able to communicate that she wanted to get into a wheelchair and go for a ride.  They are trying to maintain status quo, not pushing anythin in anyway, hoping her systems will recover.  Sorry I have to go, Thanks again for all your support and prayers.

Thanks, Maynard

Stablish

Don't know what to report, her bilirubin was up again this morning, down by almost 20 points tonight.  Her stomach has been bothering her and she managed to throw up some bile, which as she is still intubated, they said was impossible.  I wasn't there, so I don't know whether they suctioned all of the bile out or not.  She is still quite alert and not in much pain, still determined to get better.  The drainage tube that was put in last Sunday for her pneumothorax was removed today, which is a positive thing.  They are talking of doing a tracheostomy early next week, that is installing a port in her throat for breathing, they say it would be a lot more comfortable than having that tube in 24/7.  That way they could try her out during the day for a while to see if she can get by without ventilation assistance, and if that would work they would consider removing the trach after she is a lot better.   Please continue for her in prayer.

Thanks, Maynard

 

Note from Nebs- I know its confusing, sounds like mixed messages but I think the whole truth is that her body is worn out and shot and no matter what she doesn't have much time. I hate to say so cause she's proved us all wrong before and if she really does want to live... So I guess we can pray too that Maynards can have wisdom to decide whats right for her future. That would be so hard to decide.

Awake Today

Today has been another uneventful (hopefully) day.  Andrea's bilirubin went up a little bit at the 4 am test and now at 4 pm it was just marginally down by 3 points, not very much, but at least not up.  She is very clear and wide awake today, doesn't seem to be in much discomfort at this point.  A recliner was moved into her room so Faye is staying for nights now.  I have a room in the hostel attached to the hospital, only a short walk away and under the same roof.  We are not getting much sleep these days, spending all the time we can with Andrea.  Her pump clotting issues seem to have cleared up during the night, so the pump is running right.  Tomorrow they are installing a pump in another patient here.  Please continue with your prayers, we desperately need them.

Thanks, Maynard

Goodbye (or so I thought at the time)

(Please note that this is not true anymore!) Some of you have probably heard that Andrea is most likely dying? I'm going to say goodbye to her this afternoon. We need all the prayers we can get...
PS Quite a while later- Just to avoid confusion, I'm gonna add that obviously she didn't die! She's amazing that way... She seems to have pulled through and is definitely improving. Thanks for all the prayers though, they got me through a really hard day.

Not Good at All

Hardly know how or what to write.  Met with the surgeon this morning and his message was not very hopeful.  Her bilirubin has shot up some more, and who knows how much more it can go up without serious lasting damage.  She has slept a lot today, although she wakes up in between, and then is still completely clear.  They will continue providing full support for as long as she is in her present state, the danger is if anything else like an infection gets out of control.  Here it is storming and Jeff and Twila came prepared to stay a few days, so we will be staying at her bedside mostly, we also have a room in the hostel booked for us.  It is part of the old hospital and is connected to the new, so we will be very near her room.  I don't know when I will be able to send another update, so please be patient.  Right now we need your prayers and support more than anything.

 

Love, Maynard

Prayers

Not sure exactly whats up today but I know prayers are needed extra badly. I will let you know if I hear anything more.

More of the Balancing Act...

We are very very tired, just returned from the Maz and Andrea was going to sleep.  It was a kind of a sideways day, no significant improvements that we could see.  It is still a very touchy management program with her, she is on many different medication pumps that need constant attention.  As soon as blood tests show a change, one med or another is changed.  Her bilirubin is still very high, they are still using a medication for supporting her blood pressure, which they would like to wean off if possible.  There is a clotting factor called PTT which went up from 55 to 63 for which they were happy, it meant that they could increase heparin safely to thin her blood down more.  The heart mate needed monitoring throughout the day, it seemed that little clots were still forming there, so a little more blood thinner was needed.  At the same time they are very concerned that she not start bleeding from her gut again, so far it seems she is not.  They started her again on her NJ tube feeds, hopefully if the stomach starts working again the gall bladder liver etc.,will work and her bilirubin will come down.  She was very awake and alert today, although she lies very still in bed.  Please pray that Andrea will not weary and lose hope, we also need that too.

 

Thanks, Maynard

Roller coaster....

Another long day at the Maz.  Today some fresh new hurdles arose to be crossed.  First this morning the heart mate monitor showed an increase in watts drawn and the litres per minute numbers doubled, the pump guy was called in and he said it was an indication that there might be a clot in the pump.  He started her on a heparin drip to thin down the blood some, but all day the pump was the same until tonight it started to read more normally again, so we didn't know when we left whether they were satisfied that the clot had been cleared up or not.  The other bad news is that her bilirubin number keeps on going up.  It shot up after her episode last Thursday and has been climbing ever since.  As most of you know, in babies that is very important number to watch, as it can lead to brain damage in infants.  In adults it is not so much so, some liver cancer patients are not only yellow, but green, yet they remain clear and cognizant through it all.  The liver is a very forgiving organ and can rejuvenate itself completely. ( A living donor liver is sometimes used, a third of the liver is removed and installed in a recipient, yet 3 months later donor and recipient have full size livers again, imagine that.)  Nevertheless Andrea is still very sick and vulnerable to setbacks which would not ordinarily be a big problem, but in her weak and sickened state are quite big.  Every day we hope for some big changes, her breathing tube stayed in, although she has made very good progress since last Thursday's setback lung wise, her blood pressure and heart rate have also stabilized.  I hope you don't read out of my comments that she needs a liver transplant, nobody has even mentioned it, I just added that info for your interest.  Time for some shut eye.

 

Goodnight, Maynard

More Improvement

Just returned from the hospital, Andrea was not asleep when we left, she had a busy day today.  this morning's x-ray showed Andrea had developed a small pneumo thorax at her right lung so a small drain tube was installed below her right arm, half way down,between her ribs.  This condition happens when a small pocket of air is trapped around the lungs and inhibits lung expansion.  The air might have entered around one of her chest drain tubes which were put in at surgery time.  She had 3 installed then and the last one was removed only yesterday, so together with being ventilated she may have siphoned a tiny bit of air into her chest cavity and it settled at one spot at her right lung.  She showed signs of improvement very soon and her ventilator has been gradually turned down today and hopefully she can be extubated tomorrow.  That will make her feel a lot better, as it is not a nice thing to have pushed down your throat and sticking out of your mouth 24 hours a day.  Her blood pressure has come up to a healthier level with a little help from medication, which they are weaning her from.  She has responded well to antibiotics, her white cell count has come down, her color has improved, the whites of her eyes are also not as yellow as they were.  Heart Mate II is working well, seems to be providing fairly good circulation all around.  She is still very weak, and it takes only small things to become real setbacks for her, so she is not out of the woods yet.  They also have very strict rules about how long lines can be left in arteries and veins, if left too long they seem to be good places for bacteria to gather, so today her lines were all removed and new ones replaced in their locations.  Nevertheless the last days have seemed to be very very long, imagine how long time must seem for Andrea lying in bed for days, watching the clock inexorably going around.  Our prayer is for strength for Andrea to patiently endure her suffering and not to become too depressed.

 

Thanks, Maynard

Treating The CMV

Don't know what to add to this afternoon's email, things are much the same as I reported then.  They are juggling her meds to arrive at the right mix, she will likely be intubated for a few days yet as she is likely not strong enough to be able to cough properly to clear her lungs.  It is a relief that they discovered the CMV in her stomach, they are able to treat it without her needing surgery on her stomach.  The Gancyclovir will likely have a good effect in a couple days for her colon.  Now she has fluid loss and transfer through the affected spots in her right colon and so it is difficult to maintain her blood volume.  They have been giving her some blood products these days to increase blood volume and pressure.  Sure hope we will soon see a marked improvement.  This afternoon there was a choir in the 4th floor atrium, all from a Chinese Church in town here, about 30 of them, very very beautiful Christmas carrolling, was much appreciated by a crowd gathered there.

 

Good night, Maynard

More Stable

It is midafternoon and had a few minutes so here goes.  Andrea is more stable again, she is still intubated and is receiving a medication through the ventilator, depending on how she does she might be extubated tomorrow.  She was under a mild sedation from Thursday noon until this morning.  This was so she would get the rest she desperately needed, as her previous nights were poor.  When she had her colonoscopy, they went in fearing something very serious, turned out it was not as serious as they first thought, though they discovered 2 small patches that were bleeding.  They sent away tissuesamples and today they came back and she is CMV positive.  This is something a lot of people have too, they just don't know it, and in most people it is not serious, can be part of flu like symptoms.  She has been tested for it many times with blood tests and was always negative, now they have started her on an antiviral called Gancyclovir, a powerful antiviral, and hopefully her gut will now heal.  She is quite wide awake when she is awake usually not than more than a few minutes at a time.  Her blood pressure is better again although in the night it was a problem for awhile, they don't really know why.  So it is still a tight rope she is on, we never know when things will worsen or improve, the trend is toward slow improvement over time.  I guess it is all we can hope for right now.

Thanks, Maynard

Recovering

Hello Everyone

 

Just returned from Andrea's room.  She has been under very light sedation since last night and has been caching up on much needed rest.  Sedation is light enough that she wakes up occasionally and is awake for a few minutes and fairly alert.  Tonight I couldn't understand what she wanted, she is still intubated and can't speak, so I offered her my notebook and pen and she tried to write out her request, so she was awake enough for that.  Hopefully tomorrow they can take out her breathing tube again.  Her blood pressure has improved and they have started weaning off some meds.  Her oxy sats are good again, her pump is working well too.  Doctors are not sure what happened yesterday, except that she is so weak that she had some stomach  contents go down her bronchial tubes, which was just enough to push her over the edge.  They don't think her gut issue is too serious, because if it was, she should have some serious infections etc.  Hoping tomorrow's progess will be in the right direction and that she will slowly regain some strength.  We stayed at the hospital last night, so we are very tired, hope we can get a good night's rest.  Thanks for all the fervent prayers on her and our behalf.

 

Regards, Maynard

More info from Maynards on yesterday

Hello

Sorry that Wednesday's email did not go through, hope this one will.  I hardly know what to report, Andrea has stabilized somewhat overnight, she is lightly sedated now and asleep.  Yesterday noon she was feeling nauseated and she threw up and must have aspirated a little.  For awhile in the afternoon it looked like we could lose her.  She has so very little reserve left at this point that anything averse is enough to push her over the edge.  Her blood gas test showed her oxy sats had dropped to 69%, her blood pressure  went very low, her blood gas exchange was very poor and the unwanted acids in the blood were rising.  Three doctors came to us and said it could go either way and the evening would tell.  They immediately sedated and intubated her, did a colonoscopy and found that she was bleeding in her right colon, a sphigmoidoscopy was done from her throat and was okay, a bronchoscopy was done and did not show significant amounts of stuff in her lungs.  They suctioned her airways, restarted dialysis, pumped fluids to raise her blood pressure, started her on some very powerful heart stimulants to increase heart function etc.  Were it not for Heart Mate II going well, who knows what the outcome would have been.  Jeff and Twila came right away and we spent the night in the quiet room just outside the ward.  This morning her blood pressure has returned to nearly normal,  her blood studies show an improvement, her chest x-ray was good also.  Will try to keep you posted.  I know lots of you prayed very hard for her, but please don't stop.

Thanks, Maynard

Crisis

So sorry for neglecting all you! Yesterday was really bad as some of you might have heard. It looked for a while like Andrea would die... She's still in critical condition but a little more stable. Pray hard for Maynard's, they need all the strength and wisdom they can get. Andrea's on a lot of blood thinners which means if anything goes wrong, she could very quickly bleed to death. As well, they are worried about pneumonia AND she has diarrhea which is terribly dehydrating. So yeah, its all kinda scary and we all need your prayers as I said earlier.

Natalie

On Antibiotics

Good Evening

 

Since I sent out an email this morning, this one might be shorter.  Andrea was sleeping before 9 tonight, hopefully for the night as she had a busy day.  Her white cell count was going up so she was started on 2 different broad spectrum antibiotics.  When this happens as it often does, first thing is to identify the posible sources, one of the first culprits is the IV lines, so this afternoon they changed out the line in the right side of her neck and the arterial line in the groin.  When lines are in a long time they tend to get bacteria at the end of the line, so they like to change them out for new sterile ones.  They have been checking stool samples regularly for C Diff and so far they are all negative.  Hopefully the antibiotic takes care of the problem.  The surgeon said yesterday that baby steps were all that could be hoped for, as long as they were in the right direction.  Kidney dialysis is still going, don't know for how much longer.  Have a good night.

 

Thanks, Maynard

sitting up!

Hi Everyone

Had a minute so came down to the main floor entrance of the Mazankowski Heart Institute a.k.a. The Maz, to check our emails and do a quick update.  There is a family/information booth down here with 3 computers that is open during the day, so that is quite nice  Got back here this morning and Andrea looks a little better.  Two physiotherapists were in the room and got her out of bed, stood her on her feet a bit and sat her down in a high backed chair, total of half an hour.  She was just exhausted after that, but definitely was stronger than yesterday, when she wobbled around and had to be supported at her shoulders, otherwise she would have fallen over.  Today she could sit unaided on the edge of her bed.  Now we are just waiting to see what her kidneys decide to do, hopefully get in gear and do their job.  I will try to send another update tonight.

Thanks, Maynard

Stronger Today

Good Evening

 

Just left the hospital so I'll make it shorter tonight than usual.  Andrea had a fairly goood day.  She slept a lot this morning, but it seemed as the day wore on she became more alert.  Last night I  reported that they had removed her breathing tube and she was somewhat anxious about it, mostly because of how painful her throat was.  They also put her on oxygen via nose prongs, but this morning they removed them so now she is on room air only.  At 1 oclock physio therapy came by and they sat her up on the edge of the bed for 8 minutes.  This was more so that she would cough up some phlegm that was quite low down.  She was very weak and wobbly, couldn't sit without support.  Now tonight she wanted to sit up straight in bed so we helped her do it for maybe 3 minutes.  She moves around in bed quite a lot, doesn't complain too much of pain.  Her feeds were started again about 30 hours ago, and this morning they were increased again, and she seems to be tolerating them without complaining and her stomach is starting to move again so there is definitely progress.  The big question is what will her kidneys do when they stop the dialysis, will they start producing urine again and how much?  Finally now she has a little tinge of pink in her cheeks again and I don't think it is from being too hot or running a fever.  Tonight Faye asked her if she was sick of being sick and she nodded yes.  She also said that she wanted to get better soon.  Thanks for all your emails, they are a real source of inspiration to us.  Also keep up your prayers, she has a long way to go yet.

 

Thanks, Maynard

Breathing on her own

Hello

Andrea just fell asleep so we were able to leave @ 10. A milestone was reached today, her breathing tube came out and she is able to breathe on her own again. It was a little panicky for her, she has so little strength and was quite anxious, she cannot cough up the phlegm from the back of her throat as she would like to, and it seemed like a lot of effort to breathe on her own. They are reducing the amount of pain medication and also switched her to something that should not make her so drowsy. She is not able to speak yet, the tube was in her throat so long it is quite sore. She can very feebly whisper, so we lip read and try to understand what she is trying to say. Otherwise she is more alert now than she has been since surgery. Tomorrow they will possibly have her situp on the edge of the bed. O yes last night they switched her to a cadillac of beds, they were worried about her getting bed sores. This bed is fully computerized with an air mattress that has many different cells in it that inflate seperately and at different times, it's almost the same as repositioning her, although they still manually need to help her turn from one side to the other. She is not supposed to lie flat on her back for too long in one position, she could develop pneumonia. Her dialysis is still going and we expect it to for a few more days yet, her creatinine and urea levels are getting closer to normal. We will have to spend a lot more intense time with her the next while in her recovery. Thanks for all your support and prayers.

Goodnight, Maynard

Still on Dialysis

Hi Everyone

 

Just returned from the hospital after another long day.  It was mostly unchanged, Andrea slept a lot after a poor night, her stomach was not ready for the nutrition they tried to give via an NJ tube, so her night was interrupted quite often.  They discontinued her feeds directly to her stomach via tube, she is still getting nutrition IV, so she is not starving, they might start her on feeds again tomorrow.  They removed her nose packing which she had for 2 days because of her nose bleed and also removed one chest drainage tube, she still has 2 more to go.  She is still intubated as she is not ready to breathe again completely on her own, still too drowsy.  Dialysis has been going now for 24 hours and they have removed around 2 litres of fluid.  Her creatinine level dropped from 303 to 200 in 12 hours, her Urea dropped from 40 to 31 overnight also.  Both changes are in the right direction, they plan to continue dialysis for awhile yet.  Hopefully tomorrow they will be able to extubate her.

 

Thanks, Maynard

1 step forward, 2 steps back...

Hello

Today was one of those days where it feels like for every step forward, you must take two steps back. Andrea was started on kidney dialysis tonight, hopefully it is only temporary, likely at least for 72 hours. Her kidney output was steady at 30 to 50 mls per hour, but with all the fluid she is getting her fluid balance was at least 8 litres positive, her creatinine was going up a bit and urea was quite high. When kidneys don't work the person feels very poorly, stomach troubles etc, tissues builld up with fluid, feet and legs swell, stomach distends, no appetite and the list goes on. She is still intubated because of this, fluid pushes on the lungs and they don't inflate like they should. This is delaying having the tube removed, she is probably alert enough to have the tube out, but she would not be able to maintain adequate oxygen levels now. Hopefully tomorrow there is a sufficient improvement in her fluid balance so that they can extubate her. Cardiac wise they are very happy for the functions and improvement they see. That is one very intelligent little pump she has, loaded with sensing equipment I don't understand. right now it is turning at 9800 rpms and the flow meter shows a good increase from earlier. This means that the right side of the heart pressures are coming down and she is getting better blood flow out to her organs and body, her feet and hands are very nice and warm and pink, her nail beds are pink, she has good capillary refill in her toes, meaning that when her toes are pinched they turn white momentarily, but immediately refill and become pink again. Now if only her liver and kidneys would pick up the pace we would be on a roll. Needless Faye and I are exhausted physically and emotionally, It feels like I could hardly keep my eyes open today. Time to sign off and wishing you all a good night. Please keep on praying, first of all for Andrea and for her parents.

Thanks, Maynard

still sleeping

Hello Everyone

 

Just left Andrea's bedside, so here goes.  I worry some that i might be repititious, boring, and incoherent.  Maybe it has something to do with a lack of sleep, so please bear with me.  Andrea is still intubated, for those who are blissfully unaware, that means a garden hose size (just about) pipe down the throat past the voicebox hooked up to a ventilation machine which is set to do all breathing for her while under sedation.  After the anesthetic effects  wear off they start reducing the amount the breathing machine does until she is able to breathe on her own.  However, when the kidney and liver functions are impaired, they do not filter the sedation drugs out very fast.  Bear in mind that Andrea also had nearly 12 hours of surgery and a whole night of a fairly high level of sedation.  This morning when we got there she was able to squeeze my hand on command, nod her head yes and no, indicate that her nose itched etc.  She is fairly aware of her surroundings, but drifts in and out of sleep.  Her ventilator is turned down to the point of being nearly able to extubate her, but she is still too weak and drowsy to manage on her own with her breathing.  Around noon she developed a nose bleed, so they packed her one nostril, it did not stop it, so tonight an ear nose and throat specialist was coming to see her.  They started an IV blood transfusion just before we left.  This morning though, we could see an improvement in her skin color and the whites of her eyes were not as yellow as they had been.  Hopefully tomorrow she will feel better and she can be extubated, it was one thing she dreaded very much.  So long for now.

 

Regards, Maynard and Faye 

Guestbook

Hi to all, just wondering if some of you would be willing to leave a comment under this message with who you are or why your visiting, just for interest sake. I'm getting a very diverse group of people and I'd like to tell Maynards who you are and what your story is! If you yourself have a heartmate or LVAD or know someone who does, it would be great to hear from you as this is all rather new for us.
Just adding an overview on December 7 of the varied visitors
Canada-330 page views
USA- 206 page views
Germany- 50 page views
Russia- 3 page views
Croatia- 2 page views
Israel- 2 page views
India, Japan, and Singapore- 1 each
So that is why I would like you to leave comments, just wondering how you found the blog, why it interests you, and all that! Thanks!

More Waking Up

Hi Everyone

Just a quick note, Andrea is still trying to shake off the anesthetic effects and is still intubated.  This morning we got here at 8 and she was awake enough that she squeezed my hand on command.  She is relatively comfortable, she cannot speak with the breathing tube in her throat but we can guess what she wants.  We try to frame our questions so that she can answer with a nod or shake of her head.  This morning she was able to tell us her forehead was itchy.  They reduced the amount the ventilation machine was doing and later they did a breathing test to see if she could manage without the breathing tube. She did okay but was too weak to raise her head so they will try again tomorrow.  She communicated that she was thirsty, but of course she cannot drink.  The biggest issue now is that her kidneys and liver have not flushed out the anesthetic effect and so she needs some help to breathe.

Until later, Maynard

Waking up

Just heard from Maynard-Andrea is waking up, but very slowly because her kidneys are functioning so slowly they aren't getting the anaesthetic out of her system at a normal speed. This is the third day she has been asleep!

More of the Same

Hello Everybody

 

Today has been a long day, just got back from Andrea's bedside.  This morning we were there at 8 because they were going to wake her up, they shut off the anesthetic and tried waking her but not successful.  Something told me that this was not working well, she was quite anxious and not too responsive to commands.  She started jerking and twitching and about 2 she had a seizure.  they quickly responded and increased sedation and gave her anti seizure meds and moved her down for an emergency CT scan, they were concerned that she might be bleeding in her head, but the scan results were good.  She likely seizured because of too much medication on board of various kinds.  Around 8 they turned off the sedation and started waking her up again, this time it seemed to work.  She responded to commands, like"squeeze my hand", etc.  She was a lot more peaceful and natural looking when we left.  I think she will have a good night of sleep, they were going to give her pain medication and something to relax her and make her sleep.  Tomorrow if all goes well and if she can breathe completely on her own, they will extubate her and have her completely awake.  Time to get some sleep. Until tomorrow night, adios.

 

Thanks, Maynard

Andreas Day

Maynard just called, Andrea is still "sleeping". They took her off the drugs, hoping to wake her up earlier in the day but she began seizuring so they put the meds back up and took her for a CT scan. Nothing seemed to be wrong with her brain; they figure the seizure was from a microscopic air bubble from the surgery yesterday. So they are taking her off the meds more slowly this time and Maynard thought she looked a lot more peaceful this time. Please pray that she won't be in pain, there's no way of telling whether she is or not... It is possible that pain caused the seizure.
Nebs

Surgery Successful.

Hello Everyone

 

It has been a very long day,Andrea returned from the OR 11.5 hrs after going into it.  Dr Holger, the mechanical pump specialist, said it went better than he had expected, and the pump is running like he wanted it to, 8800 revolutions per minute.  The surgery took so long because first of all they had to deal with all the scar tissue, and after the pump was going they had to wait while the bleeding stopped from the needle punctures, although she did not bleed excessively.  It sounded like they were quite surprised at how very little left ventricular function there was, so very little flow going out, meaning she had very little perfusion to the body.  She is the youngest patient and the first one in Edmonton to have this pump put into a transplanted heart.  If all goes well they want to reduce sedation early in the morning and wean her off the ventilator if she can manage on her own, her lungs seem okay.  Kidney function did not stop during surgery, although it still might drop or stop.  They have means to deal with that too.  thanks so much for all the support, we certainly could feel it, and do appreciate it.  Many prayers were offered today and God has been gracious in answering them, but please don't stop, she is not out of the woods yet.  Now it's time for some shut eye, Goodnight.

 

Maynard and Faye

Surgery update

Last we heard, the Heart Mate was installed and running great. However, she is not out of surgery or "out of the woods" yet. This is turning into a really long day, dreading each phone call, wondering whats happening, I can't imagine how drained Maynard and Faye are feeling... Keep praying.

Nebs

Surgery

Maynards were in contact with the hospital at 12:30 and things were going good. She has a lot of scar tissue though, which makes things harder.

Surgery Started

Hi Everyone

Andrea had a good sleep from 9 pm till 5:30 this morning. She went into surgery at 7:30. We are at RMH till noon at least and after lunch sometime we will go back to wait at the hospital. There is a nice waiting room outside of CVICU UNIT 3A7/3A8 in the new Mazankowski heart Institute. If you want to drop in for a bit we will be around this afternoon. If you want call our cels (deleted numbers, leave a comment if you need them,)

Thanks Maynard and Faye

PS Just heard that the surgery will be ten to fifteen hours long. Nebs

Bad Day

Hi Everyone

Just returned from Andrea's bedside after she was asleep. Today was not a good day for her, she was not able to hold anything down, but when they gave her Maxeran it settled her stomach so it didn't bother too much. She has an adult sized nose tube in and it bothers her a lot in the back of her throat so she hardly talked at all, just discomfort. When asked if she had any pain she said no, so that was a blessing. We had a good discussion with her and she was at peace about tomorrow and resigned for whatever the future holds. We don't know what the future holds, but we know who holds the future. Many different doctors and specialists came in to see and examine her today. They all say that if the device works as well for her as they have seen it work in the past for others, she should show a dramatic improvement shortly. Need to sign off, back to the hospital for 6 am tomorrow. Thanks for all the love and prayers and support, please remember her especially tomorrow.

Thanks, Maynard

Surgery Tomorrow?

Hello everybody

We got word this morning after the surgeon came to see Andrea, and she had just barfed up her medications, that they are planning for her surgery to begin at 7:15 tomorrow. She did not have a very good weekend, her stomach works less and less and she cannot tolerate anything in her stomach anymore, all classical signs of heart failure. She is somewhat afraid but realizes this is the only option left. It is quite a risky surgery, but the surgeon told us that if it was too risky her would not attempt it, so we need to have confidence that God will work it out according to His plan. A heart mate II was implanted in a man on Friday and today he was moved out of CVICU and up to the close observations ward. They say that recovery can be very dramatic when the other organs and the rest of the body are getting proper circulation, so please remember Andrea and her family tomorrow in your prayers.

Thanks, Maynard

Prayer Request

Tomorrow morning Andrea is probably going into surgery and they all need our prayers. Remember them...

Heart Mate II

I'm attaching some info on the Heart Mate II that Andrea is supposed to be getting soon...
http://www.thoratec.com/medical-professionals/vad-product-information/heartmate-ll-lvad.aspx
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1995046/
Basically its a pump that assists the heart, two tubes connected to the heart at two different spots. The pump is internal but the controller is external, worn around the waist. A tube comes out near the belly button to this controller. There are two batteries that can be worn over the shoulders or put in a purse etc. The idea is that this will help her become healthy enough to handle a transplant. It will be 3-6 months before they will even put her on the list and then its a matter of time, and no one knows how long, until she gets a heart.

Moved to ICU

Hi

Just got back, Andrea was moved into the adult CVICU (cardiovascular intensive care unit) this afternoon. Last night she threw up without warning and her nose feeding tube came out. They have had a hard time managing her fluid balance the last few days as it is a very fine line for her, also very nauseous at times, so she needed more care than the paeds unit could provide. We met with her surgeon this afternoon and had a private visit with him. They put her nose tube and another tube in which was incredibly painful for her. They do not allow parents to stay with patients for the night, so Faye and I are here at RMH for night. Please pray harder for Andrea especially, and also for us, sometimes our faith is so weak. We need to be strong for her sake, but it is so hard to see her suffer.

goodnight, Maynard

PS She is now in the new Mazankowski heart centre, 3A7 room 15. If you park in the east parkade and take the first elevator inside the building after crossing the pedway, turn right before info, go up to the 3rd floor, turn right and right again. ON your left is a waiting area with tables and chairs for visitors. There will be a set of double doors that are closed and on your right is an intercom you must use and ask for us. We will come out to see you. We are not allowed to have our cell phones on in the ICU so we might be very difficult to reach the next while.

Good Day

Hello to all

Today was a fairly good day for Andrea, she has improved from the low of Thursday morning when we expected her to be taken to adult ICU. We know that many prayers have been offered on her and our behalf, and we are sure they are heard by the One above. She also lost a lot of weight very dramatically there a few mornings ( almost 3 kgs in 24 hrs, and almost 2 kgs the next) which would affect most of us quite much also. In her condition that is very tough and most of that was fluids. Tomorrow the adult heart surgeon who will assist the paeds surgeon is coming to have a visit with us. He stopped in very briefly the other day and he seems to be a very nice man, very friendly and down to earth. They say he is a very capable surgeon which is good to know. Thanks for all the notes and songs etc., they sure brighten our days, also all the ones that are close enough to come visit. Sorry where I have not sent personal emails back, we are usually quite busy throughout the day. If you want to stop in it is nice when you call ahead so we can know you are coming.

Good night, Maynard
cel# 789-608-6257

Short Update

Good Evening to all

It is very late and I am very tired so this will be short. You may remember that yesterday morning Andrea's feeds were stopped except for the Tpn IV. This morning they were restarted again at half rate and she seemed to tolerate it well. She is still on some diuretics and in 24 hrs she lost another1.9 kgs. So today she felt fairly well, but toward evening she was quite light headed and weak. We feel they are trying to dry her out too quickly and they might overshoot the target weight and become too dry. She still has not moved to adult CVICU, although that could happen quickly. They were too full down there and felt she could still be managed safely on the ward. She will have to go there before surgery to be prepped for it, that will also give her and us a chance to get used to the new surroundings there.

Love you all, Maynard

Whats New

Hi everyone

Just returned from hospital, Andrea was settling down for the night. Last evening and night were not good and when I arrived she was very unwell. At night she had oxygen on for awhile because she felt she could not breathe, a sign of acute heart failure. This morning She had visibly more fluid on board, and the VAD doc Holger Buchholz, a young man from Germany who is very good at his specialty, heart support devices, was there. He was very worried and wanted her transferred to the adult cardio vascular intensive care unit right away and a Prisma machine put on, this is first a double line into the jugular vein in the neck, then to a machine that ran the blood through it and removed the extra fluid and returned her blood. Then the chief adult intensivist was called in and after reviewing her chart and assessing her he thought she was not up the point of the Prisma treatment yet. He rather wanted her started on continuous infusion of Lasix IV, but they are not allowed to do that in the ward she is in now, so they withheld her feeds and soon she was feeling a little better. they were trying to increase the volume of formula through her nose tube but her stomach could not tolerate the very low amount of 45 mls/hour. They wanted at the same time to decrease TPN, her Iv nutrition package, it is a lot of volume quite diluted by water because too strong it is hard on the veinous system. So after they had shut off her feeds pump she began feeling better, now the concern is that she is not really getting enough calories to rebuild her. She will likely be moved to CVICU for the IV Lasix therapy tomorrow so she will be confined to her room there until they can install the Heart Mate II, tentatively planned for a week from tomorrow. If she deteriorates too quickly, they will do it sooner. They apparently are very strict there about visiting hours and no more than 2 visitors at a time. She seems quite resigned to the future, she just wants to get well. Please continue to remember her and us in your prayers.

Thanks, Maynard

Last Nights Update

Hi everyone

Today was a rather long day, Andrea was not feeling very well and hardly slept at all. It was very busy with a lot of doctors and specialists coming and going. This is partly because she is being transitioned over to the adult transplant cardiology program. We met an adult surgeon who will be assisting a paeds surgeon with installing the heart mate II, a very nice personable and caring man. He said that they feel that the support medications have done as much as they will, medications will not fix what is wrong. Andrea will be the youngest person to have this device put in here although not the smallest one. There is a girl from Nfld. who had one put in about a month ago who is about 35 lbs lighter than she is and about 3 months older. The surgery could take about 10 hours, putting in the device is fairly easy and takes from 1 to 1.5 hours. Andrea is the first one in Edmonton to have a VAD installed in a transplanted heart, although that should make no difference, other transplant centres have done it. It is surprising how many places have VAD programs going, Wpg has one and the Newfie girl is the first one there. We don't want to minimize the risk, it definitely has risks involved. The paeds heart surgeon had said this morning, "Let's put in the Vad and then wait for the perfect match". If she does well on the Vad she will be delisted for 3 to 6 months while her body recovers, her strength and muscle tone return. If this can happen like we all hope it to, then the transplantation will go much easier, but it could mean 2 to 3 years on the Vad, although that is entirely unknown. We sure appreciate all the emails you are sending. There is a computer just outside her room with internet access so we check several times a day. O yes, the surgery is likely early next week.

Goodnight to you all, Maynard

Last Night

Hi Everyone

Once more night is upon us and before I retire here is a report of the day. Andrea had the Ng tube installed yesterday, she was not very happy about it, but they are using it to feed her and it works but not very well as her stomach is not tolerating it very well because of her poor cardiac function. This morning paeds and adult transplant doctors had a conference to formulate a plan for Andrea, so this afternoon we had a meeting with three of them. Their findings and also past experience indicates that her heart function will not improve on it's own and in fact will likely deteriorate further quite quickly. They all agreed that she is eligible to be retransplanted and so tomorrow they will relist her and begin the workup for it like blood studies etc. Really they have most of the info needed to proceed but need to doublecheck some things. In the meantime they are highly recommending a VAD implant for her ASAP. Could be this week yet or early next week. They say that would be a 10 hour surgery, not because it is so complicated, the actual installation is only 1 to 1.5 hours, but they have to proceed slowly and be sure all bleeding is under control as they encounter it. It is a fairly simple plumbing job, sew a cannula into the left ventricle and insert another one into the aorta. They say that they routinely do heart surgeries far more complicated and risky than this, like rebuilding babies with hypoplastic heart syndrome where the ventricles are not fully developed. Still, this VAD implantation carries a fair exposure to risk and should not be approached lightly. They are finding that it is alot more successful to be somewhat aggressive and do these implantations early rather than late while the patient is not in end stages of heart disease. This is a very scary proposition first of all for Andrea and for us as parents. They view this implantation as a bridge to retransplantation, if she does well with it she would be delisted for 3 to 6 months for her to recover well, if not they would actively look at retransplantation. These devices are also used as destination therapy, older people have them and improve to the point that they have recovered to the enough that they are very comfortable with the device and do not desire a transplant. There is an older gentleman in Edmonton who asked them to take him off the transplant list, he was able to do many things he could not do for a long while before, now he plays a lot of golf. So please pray for us that we will make the right decisions on Andrea's behalf, also she will very much need the love and support especially of her close friends.

Goodnite, Maynard

Yesterday evening (sorry I'm late)

Good evening to all

How are you all? Hope all is well, here it is very cold, -23C. Andrea had a so so day, the Maxeran anti nausea seems to help, although she cannot handle the smell of food. Yesterday the doctors told her she might need an NG, or naso gastric tube put in to be able to get nutrition into her stomach as she is not eating at all. Since last Wednesday she has been getting all her nutrition by IV, but they don't like to do that long term because it is hard on the liver. So today they told her that today sometime they would like to put one in. She plead and begged them to wait till tomorrow as she was really dreading it, but the tube went in. It is quite uncomfortable and unsightly, it bothers her talking and swallowing some too. I told her that she had endured much bigger and scarier things before and that she would get used to it eventually. After they got it in she slept for 3 hours and was asleep again at 9;00pm. Now it is time to shut down here so good night to all.

thanks, Maynard

Sickness

Hi everyone

Just got back from the Stollery, Andrea was asleep early tonite. Her day was a little better, her pain from the cath procedure on Friday was less, her diahreaha is less but she has been very nauseous, wishing she could throw up but unable to, makes her feel very miserable. About noon they switched her from Zofran, an anti nausea marijuana derivative, to Maxeran which seems to have worked a little better. Otherwise it was a quiet day, no visitors appeared. Andrea is very weak, she still walks from her bed to the bathroom, but that is about it. Today was the first day in awhile that she wanted to get out of her room. We got her in a wheelchair all bundled up, took her IV pole and various pumps and bags and actually went down to first floor for a bit. tuesday or Wednesday the paeds and adult doctors will sit down to discuss their various cases of which hers will be included, and an action plan will hopefully come together for her. Yes we are back in 4C3-14, the same room that she had for nigh on to a year 10 years ago. Sometimes it feels like we never left that room. It is very hard to know how to feel as we have been through this process not only once, but twice. Feels like decisions that need to be made are going to be harder to make than ever. Andrea is so much more aware now than she was 10 years ago, emotionally it is taking a toll on her too. We need to be objective and optimistic for her sake first, but also for ours too. Remember her in your prayers first of all, and us too that we may make the right decisions.

Thanks, Maynard

Nausea

Hi everyone

Just returned from the Stollery @ 10:45, Andrea was asleep. Her day was okay except for being very nauseated, she threw up a few times. Usually she finds relief when she is able to do this but today it seems it did not really work that way. She gets up to use the bathroom but not much more than that. We are back in the same room that she spent about ten months in ten years ago, so together with her vomitting and stomach problems, it feels like we hardly left at all. These problems are exactly like we remember her having, waiting for her first transplant. Tuesday the pediatric and adult transplant cardiologists will sit down and discuss their cases and hers too, so hopefully they come up with a plan of action. Whether that means she is relisted for another transplant right away we don't know. Likely she will have to have a number of tests first to determine her eligibility. If she deteriorates too fast they will likely want to put in a left ventricular assist device, an implanted pump to assist heart function. We hope and pray that she does not have to go through that, the surgery is as least as risky and invasive as a transplant and has a very high emotional and psychological impact for young people that go through with this. For mor info on this device just google "heart mate II". Will try to post an update every evening if possible. Feel free to return your comments. Remember us in your prayers.

Thanks, Maynard

Not such good news

Hi everyone

It is nearly midnight and I just arrived back from the hospital a few minutes ago. I was there at 7 am expecting that Andrea would go down for her cath soon but it took till around 2:30 till she went down. they told us they expected it to take 1 to 1.5 hours in the lab but it was 3 hours. It is the first time for her to have it done without general anesthetic, they used fentenel to make her sleep while they inserted the cath in her wrist and jugular in the neck. They needed her to be somewhat awake for some of the tests. This investigation confirmed what the doctors and us had been suspicious of for awhile, and that is that her heart is very sick. There are not many options left, a possible transplant, or first a ventricular assist device as a bridge to transplant in the future. If a VAD is put in it is at least as big a surgery as a transplant. Google "heart mate 2" for more info. The problem she has is called diastolic dysfunction. They are not sure what comes first, the heart muscle getting stiff, or the very smallest cappillary veins in the heart muscle closing up depriving the tissue of sufficient flow. The top number of a blood pressure test indicates how well the heart squeezes, the bottom number indicates how well the heart muscle relaxes to allow the chambers to refill for the next beat. In hers the heart does not relax enough for the chambers to refill properly, therefore insufficient flow is circulated to the rest of the body. There is a lot more detail I could put in, but this will have to do. Andrea was in a lot of pain and discomfort tonight , throwing up etc. Her arm was very sore from the clamp used to put pressure on her wrist after the catheter sheath was removed. Hopefully she will be able to sleep good. Please remember us in your prayers.

Thanks, Maynard

Need Prayers Today...

Hi everyone

Hope you all had a good day. Andrea's day was mostly uneventful. Her gastro issue is settling down somewhat, she is on TPN continuous infusion and is mostly rehydrated again. Tomorrow she is having a cardiac cath procedure done by Dr Kym from adult cardiology. He is one of only two here that can use a relatively new ultrasound probe to go into the coronary arteries to measure flows and pressure. That is not the most pressing matter right now, they are very worried what this procedure will do to her kidneys, but they feel there is no other option right now. The far larger concern right now is her diastolic dysfunction. When your blood pressure is checked the top or larger number is the systolic number, the indicator of how your heart is squeezing. The bottom number is the diastolic number, that is of how your heart is relaxing. If it does not relax properly, it can not refill properly. This is what they are the most concerned about, and tomorrow should provide that information. For the first time she will not be put under with general anesthetic, they feel it is too risky for her kidneys, so they will be using a sedative only, she might be able to mostly sleep through it. So say an extra prayer for her and us tomorrow, please.

Thanks, Maynard and Faye

Readmitted

Hi Everyone

Not sure if we mentioned yesterday or not, Andrea was readmitted to the Stollery again yesterday. She has had gastroenteritis now, today is the twelfth day. She has eaten very little for so long that now she has lost more than 15 kgs from the highest level of approx a month ago. Most of that has been fluid except the last 5 kgs or so, As you can imagine she has lost a lot of strength, muscle tone etc. She just got back from Radiology about 1/2 hour ago from having a PIC line installed. That is a double lumen line in her right arm, so now she can have intravenous going into one line and still be able to draw blood from the other. It is one line inside of another line and goes in the artery in the arm to just above her heart, the perfect place to administer medicines etc. They plan to start TPN continuous infusion, which is a nutrition solution that is a complete package for her nutritional needs. She should soon feel better hopefully. They will monitor her carefully and they still might do the catheter procedure on Friday if she does okay till then. That should finally give an indication of how her heart health really is. Thanks for all your support and prayers, please keep on praying.

Thanks, Maynard and Faye

Two Updates-Bad News...

Last Night
Good evening!
Just a short update tonight since there is not much different. Andrea is still fighting the bug or whatever it is that is causing all the diarreah. Yesterday the transplant doctor stopped the one anti-rejection med for 2 days. Tomorrow morning we see him again and will decide about putting her back on the one she was on earlier which is Sirolimus. She is on Cellcept but they have upped it from 500mg to 750mg twice daily and we think it could be she is getting too much. Bloodwork today showed her creatine was at 220 which had gone up to 257 again and came down abit. Tomorrow the doctors are going to decide if she is well enough to proceed with the cath on Friday. Right now it looks doubtful. Please continue to pray for her and us. We know you are so thanks too! Love, Maynards
Today

Hi to all

It is 12;45 tuesday noon, just got back from hospital and are waiting for a room for Andrea to be readmitted. She just is not getting over her vomitting and diahreahea, she has lost 30.5 lbs from her peak and is now well below where she was before she started gaining fluid weight. they are going to put her on either fluid TPN intravenously or a replacement fluid orally, or a combination of both. She will not be having that procedure on Friday as she is too run down and it would be too risky at this point. First she has to get over this gastro issue and gain strength before she can proceed with it.

Thanks, Maynard and Faye

Slowly Improving

Good evening! Not much to say about the last couple of days except that things are improving again slowly. Andrea is feeling better again and today she had 2 of her friends from Edberg come and visit her. Maynard went home for the day to work and came back for night. I did the laundry and cleaned our room etc. The unit girls were here at RMH and baked a bunch of goodies and rolls again. Andrea spent time close by making cards so she could visit with them while they worked. The weather is still very nice here for Nov. Have heard that some of you have not been quite so lucky!! We hope it will continue yet for awhile. Tomorrow morning is bloodwork before 9 so we will be up abit earlier. We were all excited last night when the news was spread that Oksanah got a heart! She is 13months old and has been waiting since Feb. after her second heart surgery was not succesfull. I think they mostly lived here at the house and was on oxygen continually. Her surgery was successful and she is doing well acording to her grandma. Maybe some of you heart families have met them? Okay, goodnight for now. Maynards
A little note from Natalie
Trish and I went to see her last night and it is true-she seems to be doing better! Her appetite is pitifully small but she has more strength and she looks good without all that extra fluid. Her stomache is still bloated but, yeah, its a big improvement over how bloated she used to be! And the Ronald McDonald house is really nice, they seem a lot more at home there than at the hospital!

Update from Faye

Hi everyone!
It is a beautiful November day here. No snow, sun is shining and temperature is nice, not sure but yesterday it was 7c. There wasn't much to write about over the weekend except that Andrea must have picked up a bug and was feeling under the weather. She had very much diarreah and is still battling with it so is very tired and doesn't want to eat. We took her to the transplant clinic at 9:00 this morn. and got back at 1:30. Seems it always takes so long. Bloodwork showed her creatine is coming down some more, was 175 today so the kidney doctor was very pleased. Her weight showed she had lost 7 lbs. since Thursday! Now they are reducing her Lasix so she slows down since now she is lighter than before she got sick. Her tummy is still somewhat swollen but her legs and feet are almost to normal. She had echo and EKG and also saw the GI doctor because her liver numbers are up but they are not too worried about that yet.could be the medications. She will have bloodwork Friday again and clinic next Tuesday. They say the flu bug is all over, just too bad she had to get it. Her iron was really low today so have started her on 600mg of iron a day now. Hope her tummy will handle that. Maybe that's why she is so tired then hopefully it will help her feel better. Right now she is having a good nap which she needed! The physiotherapist Andrea had in hosp. wanted to see her today but she just wasn't up to it so we cancelled that appointment. We'll try again on Friday. Love to all, Maynards

Update from Saturday

Good evening!
We have had another fairly good day. Everything is about the same so no news really. Andrea's cousins, Sharla, Tyler and Marshall were here for dinner and afternoon to visit. They were planning to be at our house this weekend with the wedding at Edberg but came here for abit instead. Andrea was very glad to see them. Jeff and Twila also were here and they stayed for supper and left early since they were getting Arlin & Carla &Morgan for night. We are hoping to listen to Matt and Brooke's wedding tomorrow but will see if the PA men can figure something out since we can't phone to church from our phone in the room. We plan to go to chapel at 2:00. Probably no company with the wedding and all. Have a good night. Love, Maynard & Faye & Andrea

Another Update

Good evening everyone!
How are you all? We have enjoyed a good day. We went back to the hospital this morning after having our second pass out with Andrea overnight. All went well so the doctors in charge discharged her and now we are living at the Ronald Macdonald House our home away from home. It is so nice here, I can make meals and today the unit girls were here baking up a storm. They made cinnamon rolls, 3 kinds of squares and 1 batch of cookies! So we have lots of goodies to eat. This eve. there was a craft for the kids to do so Andrea joined in and made a few cookies with marshmallow creme and then decorated them with leftover Halloween candy. Brad & Joyce & girls visited this pm and they got the joy of making and eating them! Tomorrow we go in for a bloodtest and then next Tuesday she has her clinic appoint. otherwise the weeknd is free. Andrea continues to slowly lose her extra fluid, seems like the belly flluid is the last to leave. Still using the wheelchair but is walking better too. You all have a good night and thanks for your prayers again. Maynard & Faye & Andrea

Update from Maynards

Good evening everyone,
We are having a good day. This morning in rounds the doctors decided Andrea could go out on a day pass plus overnight at Ronald McDonald House so here we are! We need to go back in the morning to get weighed etc. and if all is fine we can do it again. Hopefully by the end of the week we'll be able to be discharged and stay here at the house until Andrea's cath procedure on Nov. 19. I went and bought groceries and made supper here and I don't think Andrea ever ate as much in the last 6 weeks as she did today! She is very happy to be here. Her creatine was 212 today and they also checked the pacemaker before we left so hopefully it will continue to do its job. So if you want to come visit call ahead and maybe we can see you in our new home away from home! It's really nice here!Love, Maynard, Faye & Andrea

Good Now

Andrea's doing better today actually! Her creatinine levels are way down and her pacemaker was reset yesterday morning. Maynards are doing email updates if you send them your email address. I'll just copy the emails onto the blog as well.

Not so good

Hey many of you probably heard that Andrea had surgery on Saturday? Her pacemaker had a dislodged wire and her heart beat was all over the place again... Thing is, I haven't heard how she's doing now, haven't heard anything since Saturday morning... Being under anaesthesia is never good for the body, though, and can set the kidneys and all that back again. (So sorry for not posting this sooner, I was without internet for the weekend)
So we need to keep praying for her and for her parents. They're under a lot of stress right now.

Even Better

Today Andrea spent a while on the bike at physiotherapy. Which, of course, is a good thing because activity regulates your body and yada yada yada. It also meant she had a bit of energy which she's been lacking in. Just a short update, but that's a big step up from where she was a few days ago!
Andrea just texted, they're talking weekend pass and being released end-ish of next week!

Better Today

I went to see Andrea today and she's doing some better. Her creatinine levels were down a little, to 393, and her pacemaker is set to let her heart go no lower than 90 bpm (beats per minute) which means that they can treat her too-fast heart rate (it changes a lot) without fear of it dipping too low. She's lost 8 or 9 pounds of fluid and is moving around a lot more but still is weak and finds it hard to eat. But her courage was great :) and her eyes still sparkle! Over-all, it was a definitely encouraging, she's back in her old room with the sunny window.

Creatinine Levels Up

Andrea's creatinine level, the level of waste in the kidneys, is 4 or 5 times what it should be, over 400 instead of 80-100.

Good Morning!

Yesterday evening I heard that Andrea's pacemaker was up and running just like it's supposed to. However, she was in a lot of pain because they wrench your shoulder open to insert the pacemaker... Also her... um I think the word is creatinine?... levels are extremely high. This means her kidneys aren't flushing out as well as they should again. However, one possible cause for this is that she was under anaesthetic and given morphine for the pain so of course that all has to be flushed out by the kidneys and we all know too many drugs mess up the kidneys :)
But its still good news that her heart is beating well because that regulates and improves the whole body!

Succesful Surgery

Last I heard yesterday the pace-maker surgery was successful and Andrea was sleeping. Hooray!

Pacemaker

Hey any of you Edberg people got the quick alert this morning that Andrea was going into surgery. This morning at 7 AM she had an MRI and was likely getting a pacemaker put in at 9 AM. I don't know how any of it went, and I don't want to bug Maynards to find out...
But for those of you who want to know more about such, here's Wikipedias link to pacemakers- http://en.wikipedia.org/wiki/Artificial_pacemaker
Basically, its a little electronic device below the skin that keeps the heart beating regularly. And people can have long healthy lives with them, they do not limit life expectancy.

No News

I haven't heard anything new today so I suppose that's good?
Last I heard (the other day) her kidneys were functioning better, but she still has a ways to go... The doctors had wanted to do an MRI but for that you have to lie perfectly still, on your back, for quite a while and she's unable to lie on her back because the fluid in her body makes it hard to breathe. Then they tried placing a special camera on her chest but the weight was hard for her to handle... But still no word on whether she got or is getting a pacemaker.

Moved to PICU

Just time for a quick update before work... Maynard just called and said Andrea's heart is all over again so their planning on putting in a pace-maker. As well, she's being moved into PICU (Pediatric Intensive Care Unit)

Saturday, October 16, 10

I just got a text from Andrea. She said she was feeling better (hooray!!!!!!!!) and that she had lost 8 pounds! And yes, that is a good thing, because that's extra fluids that make her sluggish and too full to eat and overwork her heart and make it hard to breathe...
That's all the info I have for now but I'm pumped enough that's good that I thought it was worth sharing :)

Just to start

A lot of people have been wondering how Andrea's doing so I'm starting a blog to keep us all updated. If any of you know something I don't, email me or leave me a comment to let me know.
Here's the scoop. We all know Andrea had two heart transplants, the last one was something like seven years ago. And typically heart transplants require a lot of anti-rejection drugs, which damages kidneys. About a year ago, she started having an increased heart rate, which the doctors thought was from scar tissue, so this spring, i think, she had a procedure to help that. It didn't last, so it was rescheduled for the end of September. About two weeks before the date, she got very nauseated and Maynards brought her to emerge. She was transfered to Edmonton where she's been since, except for two days Thanksgiving weekend. Now, this is where the kidneys come in, they've failed or are failing or whatever, which basically means fluids aren't leaving her body so she's terribly bloated and weak. What's more, her heart has been really slow, except yesterday it started jumping all over the place, which makes her terribly nauseated.
So to sum it all up, her future is at stake and we all need to pray that, if God will, He'll heal her heart and kidneys and give her another 80 years!!!