Christmas

We haven't put an update up in a while, but thought we should put one further post up.   Since our last update, we have been trying to get back to normal as much as possible.  Unfortunately, Brea got conjunctivitis last weekend.  She seems to have taken it in her stride and doesn't mind having to take even more medicine each day (although she didn't appreciate the eye drops).  Her father and mother have also come down with something (colds).  My (Matthew) version of the sickness also seems to come with man flu.  Fleur appears to have escaped sickness.

We are all enjoying our Christmas.  Brea has been asking for the Christmas tree lights to be turned on almost as soon as she gets up every morning.  She has enjoyed ripping open everyone's presents this morning.  We wish everyone a merry Christmas.  

It is hard to know what to do with this blog from here.  It will most likely just sit here and not get updated.  Now that we are back home and we are getting closer and closer to being "back to normal" there is little left to write about. 

Here are some pictures of Brea and Fleur that you may enjoy:

Follow Up

After arriving home on Friday evening, we got the weekend off.  Today (Monday) we had our first follow up appointment at Cincinnati (actually the outpatient centre in Northern Kentucky).  The good news is that everything went well.  Brea had an ekg and echo and they were happy with both.  We also had to get blood drawn as her Warfarin levels are still not settled (we are still waiting for the results). 

The policy at Cincinnati regarding warfarin is the same as at Columbia.  That means that we will be on Warfarin for six months before switching over to aspirin, which she will be on for the rest of her life.  Apparently it is quite controversial in the medical community as to what is the best drug/course of action in this situation.  Some doctors are pro-warfarin and some doctors are anti-warfarin.   The course of action following the Fontan differs across institutions. [For those who have no experience with warfarin/coumadin -- it is not a pleasant drug: (i) it doesn't taste nice, (ii) it requires much care to ensure the dosing is correct, (iii) the dose needs to change if the patient is sick/on antibiotics, etc, etc, and (iv) it thins the blood so that care needs to be taken to ensure there are no falls, etc, to prevent internal bleeding.]

We are scheduled for another follow up appointment in the week between Christmas and New Year.

Home

We arrived back in Lexington tonight.  It is good to get home (and even better to have friends collect some groceries and dinner for us).  The next couple of days will consist of trying to get everything back to normal before heading to Cincinnati on Monday for a follow-up with her cardiologist there.

Travels

This morning we said goodbye to New York once again and started our trip back to Lexington.  Despite wanting to get home, both of us are a bit sad to leave.   We have some great friends there and love our church (trinity grace).  We are spending the night in Cumberland, MD.

We are very lucky that both Brea and Fleur are good travelers.   Fleur slept the whole trip.  We stopped at Cabela's on the way.  Brea enjoyed looking at all of the animals.  Our trip tomorrow is a little longer, but it should be a little quicker to pack up and get on our way.

Follow up #2 (more pie?)

This morning we had another follow up appointment with the cardiologist.  Once again, she was happy with how Brea has been progressing.  She has further lowered the amount of diuretic, which continues to make things a little easier.  The big news is that she has given us the all clear to head back home!  Brea's parents celebrated the news with a pie each for lunch.  I was quite offended when the (Australian) lady working in the pie shop called me "a true Aussie". 

While we are obviously very happy that Brea has recovered to the point where they are satisfied to send us home, it is a somewhat strange feeling.  All of a sudden there is nothing ahead of us except the unknown.  We have no more surgeries to plan for (in many ways safety nets for if things don't quite look right in between surgeries).  While this is (mostly) a good thing, it is also a little scary.  If "things" develop from now on, there are very few avenues left open to the doctors to help fix Brea.  The cardiologist mention one such "thing" this morning.  For reasons that are not well understood, children after a Fontan operation at are risk of losing protein from their systems.  This appears to be a fairly serious problem based on the reading I have been doing this afternoon.  It occurs in approx 10% of Fontan patients anywhere from a few weeks to a few years after the surgery.  While there are some options for treating this problem, in many cases the only effective treatment is a transplant.

All in all, we are very pleased to get the all clear.   We are most likely going to start the trip on Thursday and hope to arrive back home on Friday.   We are looking forward to getting back to some resemblance of a routine, trusting that God knows best and has a plan for little Brea.

Slow and steady progress

It has been a few days since we have written anything.  The biggest reason for that is that there has been very little to write.  Brea does not have another appointment at the hospital until tomorrow morning.  She has slowly been improving over the last week, getting more and more herself.  Unfortunately the low-fat diet has been a struggle.  She has almost constantly been wanting to eat.  It gets quite difficult to find enough variety to keep her going.  Luckily I found some low-fat mac and cheese which she has enjoyed the last couple of nights for dinner which has broken the constant grilled chicken and fish diet.  She has also eaten her fair share of crackers with marmite over the last few days.

During the past week we have been trying to get back to a somewhat normal life.  This has included a couple of trips to the playground.  Today we visited the 9/11 memorial in the morning (as well as showing Brea the statue of liberty in the distance from Battery park) and then went to the Christmas tree at the Rockefeller plaza after dark.  We have also managed to catch up with a few people over the last week.  For those who saw Brea in the hospital, they have been surprised in her improvement now that she is out of hospital.


Fortunately Brea's parents have been able to avoid the low-fat diet.  Shake shack (burgers) has been well frequented, and we have also enjoyed an Australian mince (meat) pie for lunch (we also shared a sausage roll too because the pie was so good.  Bronwyn was adamant that I shouldn't have a pie and a sausage roll.  She apparently felt quite strongly about it as she provided a reasonable amount of help in eating it).  We are both wanting another pie (or maybe a dozen) before we head back to Lexington.  On a related topic, I signed up to run a half marathon in late march.  As you can see my training has started splendidly.  I left my running shoes in Lexington.  In their place: burgers and pies.

Follow Up Appointment

This morning we had Brea's first follow up appointment after being discharged on Saturday.  The day consisted of (i) an ekg, (ii) an echo, (iii) blood draw (for all three of us), (iv) an x-ray, and (v) a chat with the doctor.  The good news is that the doctor was really happy with (i)-(iv).  She thinks her Fontan "looks great" on the echo.  Her oxygen saturation was sitting at 96-97% and her x-ray looked ok.  As a result, they have slightly lowered the dose of diuretics that Brea is on (these are making the transition back to using the potty particularly difficult), although she expects Brea to still be on the diuretics for another 3-6 months.   We have another appointment next Tuesday.

The only unfortunate thing is that they have yet to stabilize her warfarin dose.  That means another trip to the hospital on Thursday morning for another blood draw.  Hopefully they can stabilize that soon so that Brea doesn't have to get poked every second day. 

Big difference

Wow.  What a huge difference it makes to be out of a hospital.  Brea has been eating better, drinking better, walking better, interacting better.  It has made a big difference.  Unfortunately we are back at the hospital the next two days (Monday for blood letting and Tuesday for echo, ekg, x-ray follow up).  We are hoping to get a better idea of how the follow up in NYC will look at the Tuesday appointment.  At this stage we are unsure exactly how long they want us to stay around the city.

Just a short update tonight.  We will try and keep you informed as we learn more at the coming appointments.

Battered, bruised, broken and FREE!

As with every other day over the last couple of weeks, today has been an emotional roller coaster.  It started with the wake up call from the blood lady (the lady who draws blood from Brea).  Over the last couple of days this task has become progressively harder as Brea's little arms are an assortment of bruises and IV lines, making it hard to find a suitable vein to draw blood from.  I found it very difficult today encouraging Brea and felt like I had nothing left to give.  I had no words, all I could do was hold her hand, stroke her hair and place my face next to hers as they drew her blood (while she repeated over and over "it's not going to hurt").

When the nurse visited us a short while later, she had mixed news.  The good news was that it was likely that Brea would be discharged today.  The bad news was that they didn't get enough blood to test her INR (a measure of the thickness of the blood).  This means they would have to draw more blood to know how to dose her warfarin in order to send us home.  The repeat visit drained me of my already low reserves of encouragement.   The nurses had to continually adjust the needle to make sure they collected enough blood.

More mixed news came later.  The x-ray taken this morning looked great, but the INR level was below the range they want it in.  The nurse told us that this meant we would be staying in another night.  It would be an understatement to say that this news left us a little deflated.   An hour later, the doctors came to tell us that we could actually go home (fortunately doctors overrule nurses), provided we come in on Monday to get more blood drawn to re-dose her warfarin.  

Brea ended up getting discharged sometime between 3pm and 4pm (the time is a little hazy as we had accumulated so much stuff in the hospital room that we had to make a couple of trips).   It was a strange feeling walking outside with all four of us at the same time.  Since Brea went in for her surgery, there have only been a couple of times Bronwyn and I have left the hospital at the same time. 

It was remarkable to see the difference in Brea solely from leaving the hospital.  Before we left, she did not want to walk and was not talking near as much as she does at home.  Within moments of getting back in the door here, she said "out of the stroller" and she walked over the sofa and climbed up on it. 

Eleven days after the surgery it is amazing to see how battered and bruised Brea's body is.  Her incision has healed remarkably in such a short time (as have her drainage holes).  However, her thighs are completely wasted from the tape they used to hold the central and arterial lines in.  As mentioned above, her arms are very bruised from numerous needles and IV lines.  Her torso (aside from her incision) is covered in red marks and sticky residue from all of the monitoring equipment that they use in the hospital.  She is definitely the bravest little girl I know. 

It is probably no surprise that Bronwyn and I are both emotionally (and physically) exhausted.  The clearest example of this was with visitors who would come to see Brea (we loved having you all and appreciate very much all of your kindness).  I was so emotionally spent, I felt removed from reality and most of the time didn't know how to make conversation.  In many ways, I think that Brea will recover from this surgery faster than her parents.

Once more, we just want to thank everyone who made this experience much easier than it could of been.  This includes all of you who have been thinking and praying for us, as well as the many of you who have supplied us with meals, looked after Fleur, let us borrow toys/baby gear, or let us stay in your apartment.  We will always be thankful for what you have given us.

Here are another couple of photos.  One was taken last night of Brea and Fleur in Brea's bed.  The second was taken tonight and is of Fleur helping Mum write emails on the ipad to let people know that we were out of hospital.

One day closer

It appears as if Brea will be discharged tomorrow.  Almost everything seems to be improving at this point.  She has had two x-rays this morning, both of which the doctors were very happy with.  She is also walking better.  She still doesn't like it or want to do it, but at least she is complaining less and has even walked on her own a couple of times (we don't generally get any further than 10m in a go at the moment). 

The big remaining challenge is her eating and drinking.  We both thought she has been eating and drinking much better, but the nurse has just came in and told us that she is starting IV fluids as her chemistry appears a little dehydrated.  So this is something that we will have to keep a pretty close eye on if we are discharged tomorrow.

Other than that there is not much in the way of news.  Below are a few photos of Brea and Fleur.  Most of them are happy photos except one which shows a fairly familiar face whenever someone wants to do anything to Brea.

Thanksgiving Day

We're another day closer to discharge and things are looking pretty good this morning.  Brea got some good sleep last night - which is sometimes hard to come by in a hospital!

She had an x-ray this morning and it was clear :)  So the fluid that gushed out last night was obviously a quick way to rid her lungs of the remaining fluid there.

They have also been cutting back Brea's oxygen and have just stopped it entirely this morning.  So no more nasal canula and no more yucky tape on Brea's face.

We have been up and about this morning.  Brea seems a bit fearful of getting out of bed so we took her for a walk around the unit in her stroller.  Then we got her out to walk on her own but she was not happy about that.  We encouraged her to walk a few metres from her stoller to a chair and then back again.  This must have been quite tiring as she is back in bed and asleep now.

The Dr's have mentioned Saturday as a possible release date.  Before then we have to make sure her warfarin dose is sorted out and we have her blood the right thickness.  And we also have to get her eating and drinking.  The Dr's are not too happy with her appetite or fluid intake.  We've told them she's never been a big eater or drinker at home, but they're still not happy.  She seems pretty bored of the hospital food, but we brought her in some Marmite this morning and she's eaten a big cracker covered with Marmite :)

A few of you have asked after Fleur.  She is with us in NY.  We have had amazing help babysitting her and bringing her back and forth so that Bronwyn can feed her (thanks to the Tyson family and the Ryness family)  We are also very lucky as Fleur is a very relaxed baby and does not fuss much.  Since Fleur cannot stay at the hospital overnight, her and Bronwyn head back to the apartment where we are staying a couple of blocks from the hospital.  Bronwyn is also extremely thankful that Fleur has just figured out how to sleep for a looooong time :)  The last three nights she has sleep for about 8-9 hours each night!!!

This thanksgiving we have much to be thankful for.  If Brea had of been born in our generation she wouldn't have made it out of her first week.  We are so thankful that the surgery was successful and that Brea appears to be making a good recovery.  Yes, there have been a few bumps along the road, and will no doubt be plenty more, but it is good to see our little girl become more and more herself every day.  We are also very thankful for our friends and family.  You have helped to carry us through the last couple of weeks, some of you with your practical support, and many of you in prayer.  Having to hand your child over to have open heart surgery is a lesson in how our children are not really our own.  Instead they are precious gifts that we have the chance to raise (and hopefully teach them something).  This thanksgiving we are most thankful that we have both of our precious gifts for another day. 

Leaky

About 5 minutes after the previous blog post, we sat Brea up to have a drink of apple juice.  As she was drinking, Bronwyn exclaimed "you are peeing out of your diaper" (after our stint in hospital it looks like we are going to have a battle to re potty train Brea, but that is another topic entirely).  After a few moments contemplation we realised that the fluid was actually gushing (no choice this time) from the spot where the drainage tube was coming out of the left lung.  This drainage tube was removed a couple of days ago (the dressing was downgraded to a band-aid this morning) so it was a bit of a surprise.  A cardiologist came and dressed it again and want us to keep Brea as still as possible (which is currently easy as she is sleeping).  Someone from the surgery team will come and check on it in the morning.  We are not really sure what the implications of this are, but thought some of you might appreciate knowing this.

Another day

In a relative sense, today was quite an uneventful day.  Unfortunately, we are in a shared room and our neighbours provide an equal dose of entertainment and headaches.  Between the snoring and the them all waking at 5am, there was not as much sleep to be had as we would have liked.  There was also a good barney when the wife woke the father to help her with junior.....

Brea also woke at about 230am crying incessantly.  She wouldn't talk to me or communicate in any way.  Eventually the nurse came in and she ended up giving her some morphine that helped her sleep through the rest of the night.

Her last remaining drainage tube had not really drained anything so they removed that late in the morning.  Unfortunately, the reason it stopped draining is because it was blocked.  Once they took it out, a lot of fluid came oozing/gushing (you choose) out.  A couple of hours later they took an x-ray to see if there was any fluid left in there.  They were quite pleased that all of the fluid appeared to have come out.   The removal of the final tube marks the point from which Brea has to remain on the fat-free diet for another two weeks.

This morning Brea also had her "discharge" echo.  I think they were pretty happy with the pictures and her heart appears to be doing everything it should be doing.

There are a few things they want to clear up before they will let us break out.  One of those is that there is still some fluid in the left lung.  They want Brea up and moving around as much as possible to get her lungs opened up to get rid of this fluid.  Unfortunately, Brea doesn't seem thrilled about the prospect.  Every time we suggest a walk there is a period of "No, no NO!".  We have managed to get her up 2-3 times and while not enjoying it, she seems to be doing quite well.  If we could get to the point where she wants to get up and walk, I think we would make good progress on this front.

Another thing is the oxygen she is receiving.  Fortunately, she is down to quite a low amount, so hopefully we can ween that off tomorrow.

The final thing is her fluid intake.  They are wanting her to drink more, as they are a bit concerned she is not drinking enough.  They had to give her IV fluids last night and I think they are going to give her more tonight.  Brea has never really drunk a lot, so I am not sure how well we are going to do on that front.

All in all, it is quite positive.  Hopefully, provided progress continues, we should be able to leave in the next day or three.  They have warned us that they will be following up with us pretty closely, particularly with x-rays to make sure the fluid is draining.

We are out of the ICU

They ended up taking the two lines out of her groin at around 2:30pm.  Brea did not like it.  However, as we hoped, she has been much happier since they have come out.  It wasn't long before she had a big cuddle with Mum before heading back to bed (Dad had a cuddle a couple of days ago which caused some problems with her lines).  They are wanting to get Brea sitting up as much as possible as this opens up her lungs.  The problem is that it tires Brea out, so it is a bit of a balancing act at the moment -- trying to get her moving without exhausting her.

It wasn't long after we got the lines out that we had confirmation we were getting the boot from the ICU.  Initially our nurse thought we might stay there tonight because "we like you, and you never know what the next one coming in will be like", but obviously someone higher up didn't share his opinion.  We ended up moving at about 5pm.

Just to show that we will complain about everything, we are a little worried about our move.  While it is a major step in Brea's progress to move out of the ICU, we have found the care on the 6th floor somewhat lacking in the past.  On one occasion after ringing the call button we had to wait 45 minutes for the nurse to arrive.  On another occasion they forget to deliver us dinner.  When we asked, it took them around 2 hours to ferret for some cheerios. 

One bonus is that tonight they had an early thanksgiving meal (in both the ICU and down here on the 6th floor).  We have a lot to be thankful for, even if we will (probably) spend thanksgiving day in the hospital.

Take three

It turns out they stopped the heart medication at around 10-11pm last night.  Overnight her lactate values were good, so they are going to take all of her lines out.  They are planning on taking them out as soon as she wakes up.  

Patience, patience

It looks like we will need some patience.  After giving Brea some fluids her lactate readings stayed the same.  They decided to give her more fluids to see what happened.  After the second round of fluids the lactate values came down substantially.  Despite this, the doctors decided to also put her back on the heart medication.  She will likely stay on the medication for another couple of days and we will repeat the "lets try and get her off the medication and out of the ICU" process all over again in a couple of days.

We are in two minds about this.  On one hand, it is a conservative approach that should ensure that once she comes off the medication and the lines are removed, she will not need lines to be put back in and medication restarted.  On the other hand, it is disappointing that we are going to have another couple of days where Brea will have to stay in bed and will not get the chance to get back on her feet.  It basically continues to delay her recovery.

Latest lactate reading

Unfortunately Brea's lactate readings have been increasing since going off the drug.  This is continuing to puzzle the doctors as everything else is suggesting good blood flow.  The current plan (currently in progress) is to hit her with fluids to try and determine whether Brea is just dehydrated, or whether her heart isn't pumping as well and she needs to go back on heart medication.  They will take the reading at 5pm.  I think everyone is hoping that the fluids will reduce the lactate levels.

Either way it looks like (i) the lines in Brea's groin will still be in for a while, and (ii) we will be in the ICU for at least another night.

Take two

This morning at the rounds they decided to take her off the heart medication that is helping her heart pump.  How her lactate levels react to coming off this will potentially play a big role as to where we head next.  She went off the med at 11am.  Unfortunately, the latest lactate value (at 2pmish) was quite a bit higher than the lactate value at 11am.  At the moment we are playing a wait and see game.  They will draw more blood at 3pm and hopefully her lactate levels will be heading in the right direction.

A brighter afternoon/evening

We have been getting used to Brea getting scratchier and scratchier as the day progresses.  Fortunately, she didn't follow this pattern tonight.  Instead she actually starting smiling and laughing and being much more like herself.  She started singing and reciting nursery rhymes  and books, etc.  She has also started eating a lot more.

The lactate levels are still causing us some bother.   I never did find out what the lab reported the lactate value to be, but her levels were all over the place all day.  They would decrease as they wanted and then suddenly jump back to the level where we all started.  The cardiologists came and did an echo to look at her heart function and concluded it looks "pretty good".  So the current theory is that the high lactate values are caused by dehydration.  So they have given her some IV fluids.  The plan (which of course is likely to change) it to keep a track of the lactate values through the night and try and take her off the heart medication in the morning again and see what happens.  As far as I can tell, we will remain in the ICU until they are happy with her lactate values.

Lactate levels

I have no idea what these things are, but they are causing us problems.  Everything else seems to be going well: (i) she had the left drainage tube removed this morning, leaving on the right tube in (the one that was inserted a couple of days post-op), (ii) she is eating better, she had cheerios and yogurt this morning, much like a usual breakfast for her, (iii) she is down to minimal oxygen, and (iv) she is seeming more herself.  She was telling me this morning that she can see the water out her window (the Hudson river) and can also see birds flying around.

The lactate levels, however, are a little perplexing.  They were the reason she was not moved yesterday, as her values were too high (and increasing) and so they put her on a drug to improve heart function.  At the rounds this morning, they said her lactate was down to 0.9 (it was 2.7 and they like it under 1).  However, at the next blood draw her lactate was reading 2.9.  They run it on three different machines and found values between 2.2 and 2.9.  They also sent a sample to the lab and the lab results came back without a lactate value...

Still in the ICU

It appears that we will not be moving from the ICU today.  She was booked to move.  The nurse was busy preparing everything and the head lady from the sixth floor came and gave us information.  They just wanted to monitor her lactate levels (apparently a measure of heart function) before she moved down.  Unfortunately, these values were too high and kept getting higher  throughout the day.  This means that Brea has just had to go on a drug to help her heart pump (she was on it earlier).  This means that she will not be moving off the ICU tonight.  It also means that her central and arterial lines will stay in which means that Brea is unable to move for the time being.

More progress

With a bit of effort, Brea did seem to sleep last night (with a few interruptions).  With that, she seems much more positive this morning.  She is still far from herself, but at least appears to be moving in the right direction.  She has been doing some eating (mostly yogurt) and drinking a bit of milk.   She is also interested in reading books again.

More good news is that it appears that we may be moving off the ICU and to the general pediatric cardiac ward.  It is supposed to happen today once they are happy with a couple more things.  They also took one of her drains out today (the central drain) so that is another positive sign.  The next steps are to try and get her moving once her arterial and central lines are removed.  She is quite congested and they hope that moving will help her to cough/clear a lot of that.

Morphine aids sleep

They ended up giving Brea another dose of morphine at around lunch time.  It didn't take long before Brea was asleep.  She slept most of the afternoon.  Unfortunately, this meant that we spent a lot of time sitting beside her bed while she was asleep, and then she was probably awake when we had some dinner tonight and were not here.

The morphine appears to have now worn off.  She is clearly not enjoying her hospital visit.  For the last 30 minutes of so, she just whimpers/cries out every couple of seconds or so and will not say a word.   This makes it very difficult to know what to do.  Is she in pain? (the nurse doesn't think so).  Is she just sick of being stuck in a bed not moving with things stuck in her body?  She has just fallen asleep again, hopefully for the night.

A positive start to the day

At about 1am last night they decided to give Brea some morphine (she had no pain medication most of the day).  This seemed to help Brea sleep through the night.  This morning she seems to be doing much better (although in saying that they have just given her some more morphine).  They have reduced most of her medications and oxygen and she is now allowed food (but still on the fat free diet).  She has had some fat free milk to celebrate.  We are about to head out for a walk as we expect she may sleep for a while and it is a beautiful day here in the city.

Little change

Just a quick note before I attempt to grab some sleep for the night.  There has been little change from the last post.  Brea continued to be quite unsettled for the rest of the afternoon/evening.  We are all hoping that she can get a good nights sleep and we can all wake up ready to face another day.

An unsettled little girl

Today has been another difficult day.  Fortunately, most of the news we have had has been positive, but Brea has been very unsettled and requiring almost constant attention.  They think it is because a lot of fluid had built up in her right lung making it difficult to breathe, etc.   With all of her blue blood bypassing her heart and going directly to the lungs, they become even more important than normal. 

At lunch time they lightly sedated Brea and inserted another drainage tube into the right lung.  They hope this will help with how she feels.  While she was sedated, they also helped remove some gas from her stomach.  Unfortunately, she is still currently quite unsettled.  We are both struggling as Brea has been almost constantly whimpering or complaining since early this morning and it is very hard to figure out what the problem is.  Is it now the after effects of sedation that are unsettling?  Or is there something else.   It is especially hard when all Brea wants it to be "up with Daddy/Mummy" (i.e. have us pick her up and hold her) which we are unable to do.

One cute story from the sedation was when she woke up (again we were not there).  She looked around and said "Hello.  Goodbye." and then shut her eyes again.  Other than the fluid in the lungs, they appear quite happy with progress.  As always, it is a waiting game requiring a great deal of patience.

Waiting

Today was a pretty good day for Brea.  After her tube was removed at lunch time, things were pretty quiet.  She didn't seem to progress much, but had no major setbacks (always a good thing).  The afternoon consisted of Brea being quite uncomfortable (the gas in her stomach playing a big role).  She was also asking for water, which we were not allowed to give.  The doctors gave her the all clear for having a drink of water at 11pm, which she enjoyed very much. 

Brea doesn't seem to have got much quality rest today.  She was too uncomfortable all afternoon and even now is whimpering as she lies in her bed.  A couple of times I feel like she has finally fallen asleep, only to be woken up by the doctors checking various things.   

They were unable to make any progress with the fever using tylenol, so they started a course of antibiotics about 6 hours ago.  Her temperature is now back to the normal range.

A couple of you have asked us whether they were able to connect the inferior vena cava to the pulmonary artery outside the heart.  The answer is yes.  Dr. Q was able to place a conduit outside of the heart as he wanted to do.

We are so grateful for all of your prayers.

Some ups

We have mostly good news from last time.  There was some divided opinion between doctors as to whether to extubate her or not.  During rounds, the head doctor wanted to extubate her after using a needle to drain some fluid in her lungs and then looking at a new chest xray.  Everything went well and at around noon they extubated her.  Bronwyn and I had to leave the room.  The nurse told us that after they took the tube out they asked her name.  She replied with "Brea" before adding "get this thing out of here!". 

She now has a nasal cannula.  She is much happier without the breathing tube.  Despite being quite croaky (and no doubt sore) she is able to communicate with us.  Her last request was to wear her silver shoes. 

Unfortunately she still has a fever.  It is not unusual that she would get a fever, but it is worrying that the tylenol has not been able to reduce the fever.   The doctors also think she will be quite uncomfortable as she has a lot of gas in her stomach that she needs to get rid of.

Ups and downs

It is easy to forget how quickly things change while in the ICU.  As I briefly described last night, they were concerned about her blood pressure being too low.  That seemed to improve and it looked like they were going to take the tube out, only for concern over her oxygen saturations being too low.  During the night and continuing on into the morning, they are worried about a fever she has (that hasn't reduced with tylenol) and are still concerned about her oxygen saturations as well as her heart rhythm and how this is associated with her blood pressure.   They are reluctant to pace her heart as it seems they are also pacing her diaphram which leads to her little chest beating quite dramatically whenever they pace her.  It seems to us as everytime they intervene, something else goes out of whack.

Each different doctor we have in here seems to have a different view on extubating her.  Some want to get it out (we got told this is a big step in her recovery), while others are wanting to keep it in for longer.  It is difficult for us to watch and wait as every time Brea awakens it is not a pleasant experience.

Update #4

Brea has now woken up from the anesthetic.  This seemed to help her blood pressure and they were able to stop the pacemaker.  They were also trying to remove the breathing tube tonight.  For the fontan procedure they try and remove the tube as quickly as possible as this helps recovery.  Brea does not like the breathing tube and is spending most of her awake time gagging on it, clearly wanting to get rid of it.  At the last minute, one of the doctors decided that her oxygen saturation levels were too low (~93% with some oxygen support) to remove the tube.  They have decided to try and keep her comfortable and try and improve her oxygen saturation levels and remove it in the morning.  We would appreciate your prayers that her oxygen sats would improve and that we will all get some sleep.

Update #3

We were able to see Brea at around 645pm.  She is still sleeping.  She still has breathing tubes and is on medication to help her heart function.  They are concerned about her heart rhythm and associated low blood pressure.  They are hoping that she will wake up soon as they hope this will help her breathe more on her own and help increase her blood pressure.  At the meantime they are "pacing" her heart using a pace maker which is helping to increase her blood pressure.

Update #2

I just talked to Dr. Q.  He said that everything went well, that it looks good and he is happy.  It will still be a little while before she is brought up to ICU and we are able to see her.  There is still a long way to go, but we have much to be thankful for.  We thank you for your ongoing prayers.

Update

Brea went into surgery at around 1145am.  We have heard no news since then

Surgery Time

We found out this morning that Brea will be the second surgery of the day.  This means that we are to go into the hospital at 730am tomorrow morning (130am Wed morning NZ time).  They expect the surgery will begin at around 11am (5am NZ time).  Nothing is for certain, however, as everything will depend on how the first surgery of the day goes.  The surgery should take around 4 hours, so we expect that we will get to see her again at some point in the late afternoon.

Upcoming surgery

The second and third surgeries are really two stages of the same operation.  Most of us have two functioning ventricles: the left ventricle pumps (oxygenated) blood to the body and the right ventricle pumps blue blood back the lungs to collect more oxygen.  Since Brea has only one functioning ventricle, the goal of these two surgeries is to overcome the need for one of the pumps (the function of the right ventricle).  To do this, they take the two veins that bring blue blood back to the heart: (i) the superior vena cava from the upper body and (ii) the inferior vena cava from the lower body; and connect these to the pulmonary artery.  This means the blue blood bypasses the heart and goes directly into the lungs for more oxygen.

The two different veins provide the breaking point for the two surgeries.  In the Glenn, they connected the superior vena cava to the pulmonary artery and in the Fontan, they hope to connect the inferior vena cava to the pulmonary artery.  This means that at present, Brea is still relatively blue (her oxygen saturation levels are around 80%), but after the surgery they should run much closer to 100%.

Surgery #2

After Brea came home we had a pretty quiet few months.  Other than fairly regular trips to the pediatrician and pediatric cardiologist we didn't spend a lot of time out of the apartment.  The first surgery Brea had was temporary, simply keeping her alive long enough so that she could grow and gain enough strength for the Glenn (and ultimately Fontan) procedure.  This meant she was at fairly high risk if she got sick.   We were very lucky in that there were no major scares and things rolled on pretty much as normal.

The original aim was for Brea to have the Glenn procedure somewhere between 6mnths to a year.  However, the doctors decided that they wanted to perform it as early as possible (4mnths) because they were scared that her pda (ductus) would suddenly decide to close.  As we mentioned in a previous post, this could severely narrow her left pulmonary artery. 

The timing of the surgery wasn't ideal.  I (Matt) had a conference in Italy three weeks after the operation.  However, we also knew it was best for Brea to have it done then.  As with Brea's first surgery, we were very fortunate with having family visit.  Daniel and Rachel came across from Pittsburgh, cooking for us and generally helping us get by.  We also had Bronwyn's Mum come over from NZ a few days after the surgery.  She was a tremendous blessing when I (Matt) left for Italy the week after Brea was discharged.  Knowing that she was around made it much easier to leave.

Before Brea was born, I assumed that each surgery would get a little bit easier.  I thought that knowing that we had done this before and that this surgery was one step closer toward the goal would help.  We found the opposite to be true.  I can remember holding a little (starved) 4mnth old girl while we waited for a delay in the surgery before us.  She fell asleep on my shoulder not knowing what lay ahead.  She woke up as I gave her to Bronwyn to have a cuddle just before we passed her over to a nurse.  I will never forget the look on her little face as we passed her over.

They told us to expect the surgery to last four hours.  They suggested that we head home and call them after 2-3 hours to check on progress.  We did this to find that they had only just started the surgery.  They had spent the previous two hours having great difficulty inserting IV lines, having to call in the surgeon to help them.  After an appropriate period of time, we headed back to the hospital to continue to pray and wait for Brea to come out of the theatre.

I think you have to harden your heart to a certain degree in order to not completely break down.  Despite crying as I write much of this post, I can remember not crying when seeing her again in the PICU (pediatric ICU). 

Despite a little concern in her first night with dropping saturation levels, Brea was progressing well.  Unfortunately, the day after she had been extubated she aspirated on some of the milk she was drinking.  This lead to her being re-intubated and considerably lengthened our stay.  Part of the reason for this was concern over how Brea was drinking.

After the aspiration, they run a (fancy) test with dyed formula (of various thicknesses) and an xray machine to see how she was drinking.  They didn't like what they saw and decided she needed thickened milk and an NG tube to assist with feeding.  They said she would need the NG tube for at least 6 mnths so we were instructed how to put the tube into her nose and down to her stomach in preparation for going home.  Neither Bronwyn nor I thought the test was particularly well done.  Up until that point Brea was predominantly breastfed and the test itself was delayed which made Brea excessively thirsty and she had to take the test sitting up in an uncomfortable chair (at 4 mnths old!).  This meant the test was done in far from normal conditions.  Labor weekend further complicated matters, but after much partitioning they agreed to check her drinking while breastfeeding (unfortunately the fancy tests do not extend to breastfeeding for the obvious reasons).  We were very happy that she was given the green light to feed normally again.  Shortly after, Brea was discharged and we were able to return home.

Many of the photos of Brea that we took in the hospital, I am still reluctant to share.  I can't really even give you a good reason for why I feel that way.   The two photos below do not give a graphic view of what she went through.  Instead they focus on the positive aspects of the post-op process.  In the first she is in a (drug induced) state of rest a couple of days after surgery.  The second shows one of her first smiles after the surgery (it took nearly two weeks).

Support

We have been blown away from the support that we have received and continue to receive.  There is no way that we can acknowledge all of the support that we have had, but want to let everyone know that we appreciate everything.

In one of the most expensive cities in the world, we have had numerous people open their homes (apartments) to us.   They have been willing to share their lives and space with us for extended periods of time.

In particular, trinity grace church and the MoHa (Morningside/Harlem) missional community have been incredible.  The community we have experienced with these people is as close to what we read about in acts 2 as is possible in the present day.  Despite not being in Manhattan for 16 months, as well as their prayers, they have supplied meals, toys, strollers, etc, to make it easier for us to live.  It is truly a blessing to belong to such a community and church.

We have also received support from people in Lexington.  We had many offers from those who said they would help us in any way they could.   In line with this, we also know that there are many people at home in New Zealand supporting us through prayer, as well as some family sending us parcels to help us over the next few weeks.

I am also very thankful that I was able to get away from work for the duration of Brea's surgery.  It would have become exponentially difficult if I was having to travel between New York and Lexington several times a week.

Once again, we just want to thank each and every one of you.  We really do appreciate it all.

Pre-op testing

Our Thursday was spent with making sure everything is ready to go for the surgery next Tuesday.  It was a long day: we arrived at the hospital at 830 in the morning and left at around 330 in the afternoon.

Brea is an excellent patient.  She is very good at sitting still for her ekg and echo which she routinely has every three months or so.   On top of that today, she also had blood taken (there was not one tear) and had a chest xray.  She also had three exams and we talked to a lot of doctors, answering and asking a lot of questions.

There are three particular areas where we would really appreciate prayer:

The first is that everything is ready to go for the surgery on Tuesday provided that no one gets sick between now and then.  We would appreciate your prayers that all of us (especially Brea) would stay in good health to not jeopardize the surgery.

The second is related to there being two possible approaches for the Fontan surgery.  In version one they use a gore-tex tube to attach the inferior vena cava to the pulmonary artery outside of the heart.  In version two they run the inferior vena cava through the atrium and into the pulmonary artery.   In recent times, Dr Q. has been preferring version one.  He would like to use version one on Brea, but because of her dextrocardia, he will not know until he opens her up whether there will be enough room to run the gore-tex tube outside of her heart.  We would appreciate your prayers that despite her dextrocardia there will be enough room to run the gore-tex tube outside of her heart.

The third is due to them imposing a low fat diet on Brea from Sunday.  One of the big challenges in the recovery of these kids in having excess fluids drain from their lungs.  I didn't understand the reasoning behind it, but one of the biggest culprits are fats building up in her lungs.  One way to help drain the fats is to have very little fat moving around her system in the first place.  From Sunday, Brea and by extension the rest of us, are moving to a low-fat diet where she cannot exceed 10g of fat a day.  A few of her favourite foods, like peanut butter and full fat milk/yogurt/cheese are included on the no-eat list.  It will also make it very difficult to eat any meals that we do not prepare ourselves.  We would appreciates prayers that Brea will enjoy her new diet, and that it will not be too difficult finding and preparing the meals. 

On a lighter note: at one point during the day while we were in the heart centre waiting room, Brea walked over and picked up one of the sheets of paper they have out for kids to draw on.  She then proceeded to sit at the table, and use the crayons to colour it in.  Bronwyn and I didn't think much of it, because she likes to colour in.  However, after she finished she walked up to the receptionists desk which had around 50 similar pieces of paper attached to it (coloured in by older kids).  She found an empty spot and tried to stick the piece of paper beside the other ones.  The receptionist came to her aid with some sellotape to officially add her artwork to the collection.

To go along with the previous photo, here is (i) a photo of Fleur at a similar age to the one of Brea, and (ii) a recent photo of Brea in Montreal:

Surgery #1

The first surgery Brea needed was "scheduled" to take place within the first couple of weeks after she was born. To best prepare her for the surgery, she was immediately taken to the NICU nursery as soon as she was born (Bronwyn got a very quick kiss as she was taken from the room).  In the nursery, they checked her out, and also started the hormones required to keep her alive until the surgery.

At first, she wasn't allowed any milk until they officially scheduled the surgery.  After a couple of days, this was scheduled to take place exactly a week after she was born.  During that week we watched as her numbers slowly deteriorated.

Due to some of the complexities of Brea's anatomy, the first surgery was able to be performed from the side of her body ('normal' HLHS babies require open heart surgery).  This was both good and bad news: good because it is always good avoiding open heart surgery, and bad because her unusual anatomy means the surgeon is less familiar with the specifics of the surgery.

The surgeon performing the surgery was Dr. Q (see http://nymag.com/nymetro/health/features/n_9493/).  While a man of few words, we appreciated having a surgeon of such skill performing the surgery.  He is the reason that we are heading back to NY for the third stage of surgery (the same surgery as Dorothy has in the story above).

The surgery ended up being delayed for quite some time, which didn't make it easy on us.  When they were finally ready for her, we pushed her crib down to the operating theatre and had a long walk back.  During the surgery, we waited in the NICU communal area with my (Matthew) parents.  I can't remember a lot about waiting for the surgery to be over, but I am sure most of the time was spent praying.  I can recall the relief at having a nurse come through to say that everything went well and she was on her way back to the NICU.

Unfortunately, it took two weeks before we left the NICU.  While Brea recovered from the surgery quickly, her ductus arteriosus (initially kept open with hormones) was slow in closing.  The reason this was a concern was due to narrowing of her pulmonary arteries as it closed.  They were concerned that as her ductus closed, it may stop the blood flow through the pulmonary arteries.  In the end, it never did close, but we had to stay around until they were happy that this was the case.

All of those parents who have had children in the NICU will remember the small things that many other parents take for granted.  It was several hours before we got our first hold of Brea.  It was over a week before we put her in clothes.  It was over two weeks before I was allowed to disconnect her from the monitor for an hour to walk to the windows and show her outside.  Despite this, we both know that our NICU experience was fairly smooth sailing.  There are many others out there much less fortunate than us.

I am pretty sure both of us were a little stunned when they actually let us leave the NICU and go home.  All of a sudden your child goes from constant 24 hour surveillance attached to several monitors to being left in your care.  Somehow all of us have survived to tell the tale.

Here is a picture from the NICU visit.  For those of you who have seen photos of Fleur, you may notice some similarities: