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
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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