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.