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.