Happy Liver

Just a quick post to update on Alexa's labs and clinic yesterday.

Turns out, Alexa's liver is quite happy right now!  Her LFT's have remained quite stable over the last two check-ups.  They are sitting happily at 48(AST) and 60(ALT).  They are the best they have been in months and SO very close to being in the normal range.  And she has a runny nose! So I am quite pleased with those numbers.  Who am I kidding?  I was ecstatic yesterday at that piece of news.

She finally gained some weight--No surprise there though, as she has a new found appetite that I am just loving!  She plans all her meals way in advance.  Tells me exactly what she is having for snacks and lunch. 
She is not a big fan of meat.  She will eat certain meats, like chicken nuggets, hot dogs, ground meat in pasta or meat loaf. But I don't think she will ever love a big, thick steak.  And I don't really care. 
She finally has a good relationship with food.  She ENJOYS meal and snack times.  Her protein is perfect right now.  She is happy and healthy and gaining the appropriate amount of weight.  So if she decides she never wants a steak, I really don't mind.  She eats plenty of food and quite a variety.  That is more than good enough for me!  My days of fighting with her at meal times are gone. 

She also grew some, which was pretty evident by the lack of pants she owned that covered her ankles.

There is one thing that we will be watching closely--her EBV and CMV levels.  Both of those are common viruses that most of us have.  They remain dormant in most of us, but wreak havoc on an weakend immune system.  Since Alexa's new liver was EBV positive, she was given the gancyclovir and cytogam infusions after transplant to ensure that the viruses remained dormant while her immunosuppression was at it's strongest. 
Since she has finished both medications and her immune system is still being suppressed quite a bit, both viruses have now appeared to become present in her blood.  This is not a huge surprise to us.  The viruses have so far not been replicating themselves.  In fact, the viruses were present in such low numbers that the lab could not measure them.  

It is quite common in transplant kids, but needs to be watched carefully to ensure that they do not get out of control.  Once yesterdays levels are reported back, the hope is that we are able lower her immunosuppression just a tad to see if her body is able to fight off the viruses on it's own.  It is quite a sensitive balancing act. They cannot lower her immunosuppresson too much as that could remind her body that she has a new liver and send her into rejection. 

They have to find the perfect balance between keeping her strong enough to fight the EBV/CMV but not so strong that she will fight her new liver.

It's hard work keeping this liver happy!

But we have a great team and they are doing a good job of monitoring all her levels!

And to show how appreciative we were of their never ending devotion to us, Alexa and I got busy over the weekend baking cupcakes for our great team.
 

We also decided to take some over to 6A, the transplant ward, where we took up residence in July.

Alexa carried those trays to the nurses and doctors proud as a peacock!  And was super excited at how thankful they were.
 

Alexa's doctors and nurses work so hard; they are so incredibly busy, making sure that our kiddos get the best treatment possible.  If felt great to show, even in this very small way, how appreciative we are of all they do.  

Labs and Metabolic Clinic

Today we had another set of labs scheduled.  We were just there on Monday-- prior to that we thought that we could try going to labs every 2 weeks.  Clearly the fact that we were back today is an indication that we are not ready for every 2 weeks.
I had mentioned in my last post that Alexa's Liver Function Tests (AST and ALT) had been on the rise. They were inching their way up slowly to a place that would require many more investigative tests should they not go down.  So Monday, I was really hoping that they were on the down trend.  Things were looking hopeful...
Her doctor came in and was so excited to see that her ascites is gone! Completely normal!  He was kind of surprised, and still bothered by the fact that he could not give me a reason for the ascites in the first place. He is a scientist after all, and they NEED reasons for everything!  And the fact that it mysteriously came and went on its own, even after every test under the sun reported no abnormalities, will just never sit well with him.  But it does with us....we gave her time to do her thing and she did.  We are and have been weaning down her lasik (the medication that helps relieve fluid from her body) and as of Monday, coincidentally, Thanksgiving for us Canadians, she will be completely off of it if we do not see signs of ascites returning.

But back to those LFT's.  Dr. A came in and told me that they had increased again.  And for my own sanity, I think he decided to not tell me how high they had gotten.  Alexa has had a cough since about Saturday, and the rise could very well be explained by the virus, however the continued rise could also mean a host of other things, one of the worst being rejection.  So although, I had not been panicking, these numbers have definitely been weighing on my mind.  If I had KNOWN that Mondays AST was 84 and ALT was 83, I think, who am I kidding, I KNOW panic mode would have set in.  And I think they know this too.

Since I already had a metabolic appointment today, they asked that I come in a bit early to have our labs done again.
I got our metabolic nurse to give me a print out of today's lab results as I could not wait for transplant to call me in the afternoon/evening. The good news is that they are better.  Not perfect yet.  They could be lower. It would be nice if they were even lower.  They still are slightly high.  But they are better than they have been in the last 3 weeks.  We are about as good as we were at our September 17th appointment.  And as I was typing this, I got the call from the liver team with the rest of our numbers.  FK is perfect so no dosing changes necessary!  Phew!!! Again, I breathe a sigh of relief!

Meanwhile our metabolic team was super happy with her progress.  It was nice to be sitting in the metabolic offices, and to not be anxiously waiting for our nurse and dietician to walk in with the dreaded ammonia results.  For once, I did not care and did not even ask (not even for old time's sake!) It was nice not to have to document what she has, or more frequently what she had NOT eaten, as was more often than not the case with Alexa pre-transplant. We didn't care about how MANY calories she consumed and we didn't even plot her on the growth curve!
Instead we met and talked about all the wonderful things she has been doing and eating!  We chatted about how school is going and different life is from just a couple of months ago.
They looked at her amino acids and were generally happy!  The only one that was off is her arginine.  It is low, as is typically amongst citrullinemia patients post-transplant, so they have started her back up on a low dose of L-Arginine.  (one of the meds she was on pre-transplant).  It's not the end of the world and I knew this day might come eventually.  Chances are she will be on it for a long, long time.

As I mentioned earlier, we are celebrating Thanksgiving this weekend.  And boy do we have a LOT to be thankful for.  I am thankful for the wonderful doctors and nurses at HSC.  I am thankful that we live close enough to be able to enjoy the luxuries that HSC has to offer.  I am thankful that I married such a loving and devoted father who knew that the only chance his daughter had of living a life free of brain damage, was to give her a part of his liver.  He did not waiver, he did not second guess himself.  He just KNEW what had to be done. I am thankful that right now I have a healthy happy 5 year old girl who was given such strength and bravery. I am thankful that for the first thanksgiving ever, Alexa will be able to really enjoy a thanksgiving dinner and at least try turkey. I am thankful for our family and friends who have supported us along this route we have embarked on.  The list could go on and on!

I asked Alexa what she was thankful for.

Her response:

I am thankful for cheese strings and cheese slices and wild wings mac and cheese bites! 

And with that I would like to wish all of you a wonderful, happy and healthy Thanksgiving from our family to yours!!!!  

 

The results are in!

And if the length of time it took to report back to us didn't give it away (I've learned, the worse the scenario the faster the call), this face will surely tell.

Loving her "reward" shades!

The CT reported absolutely no narrowing at the connections in the vessels and no blood flow issues!  Happy faces and thumbs up all around at this piece of news as it means that no surgical intervention is necessary! Phew!!!!

Of course, the harder you look, the more you will find. The CT reported "a noticeable prominence of her small bowel"  Huh?  It was explained that a portion of her small bowel is slightly enlarged or swollen....
What exactly does that mean? Maybe nothing--probably swollen from the trauma of the surgery; maybe it was like that all along, maybe it wasn't.  Maybe it will be like that from now on....Who knows?  But the doctors do not seem so concerned and to be honest, I am not that much either.....It will continue to be monitored at our regular ultrasound appointments.

We did have a slight scare at yesterday's appointment which resulted in repeat blood work.  Of course the specific blood test they were monitoring (PT-INR) could not be taken from the PICC, so she had to have 2 separate peripheral draws making her a not so happy camper momentarily. Not sure how we are going to go back to draws once our PICC is removed (which I hear might be in the not so distant future!). Alexa got through the second draw, and I got through the waiting for the results and her level came back at a perfect 1.1.  I took a huge sigh of relief as the first level reported was super high--immediate intervention kind of high! Glad we did not have to go down that route! I am sure the lab just wanted to see how quick I could grow some extra grey strands! Turns out--pretty damn quick!

We have her prograf level exactly where we want it right now! And in 1 week, we eliminate 3 medications!!! Her daily IV infusion of gancyclovir will be done in about 3 weeks time and we only have 2 more of those 4 hour cytogam infusions that we get done at the hospital! I can see our 3 month post-transplant up upon the horizon!

And if it were not for those pesky LFT's, I would be doing a happy dance right now! Her LFT's are being closely monitored (more so than usual), they are not concerned YET, however they are (and I quote) being "mindful" of them.  They have been increasing slightly over the last 3 weeks.  Not huge, only about 5 - 10 points, but increasing 5 points at each visit for 3 weeks in a row is definitely not the trend they want to be going in.  She has had a runny nose and that could very well explain the increase but still not happy.  We definitely want to start heading in the other direction.

And this seems like a great time to remind everyone of The Great Camp Adventure Walk that we are doing on Saturday to give back a little to the hospital that has given us so much!  I am soooo close to my personal goal.  Thank you from the bottom of my heart to all those who helped make this happen!

If you would like to donate please click on the link below:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?px=1255435&pg=personal&fr_id=1040

No News Is Good News...

Or at least in our house, that seems to be the case.

In the week that we have been home, we have had two sets of blood work done(Friday and today) to closely monitor all her liver function numbers.  They look great.  On Friday, the AST was 38 (completely normal) and her ALT was 81, almost down in the normal range--I am told this one takes a bit longer to come down.
Both sets resulted in no dosing changes for her medicine.  That is good--that means that they have figured out the exact dosing required for her Tacrolimus(FK/Prograf) which prevents rejection.
And we do not have to go back for blood work until next Tuesday!  Must mean that they think she is pretty stable.
I must say,  I love the ease of blood work when having a PICC Line--Seriously--no tears, no stressing about whether they will find the vein on the first try.  It is so fast and pain free.  If it weren't for the fact that we cannot get it wet at all, I think I would keep it forever!

Alexa is slowly being weaned off of some of the other medications that she gets.  Her Prednisolone dose which is another steroid to prevent rejection is being tapered down every 2 weeks until we have reached 3 months post-transplant.
Ganciclovir, which is the intravenous medication that is administered by our home care nurse has gone from 2 times per day to once per day, again for about 3 months post-transplant.  This medicine helps prevent some viruses that are pretty bad for immunosuppressed people.
I will be so very happy when she no longer needs these medications.  They are harsh on the body and have some pretty serious side effects with higher doses.  I hate that she needs them, but what can I do, she absolutely needs them to remain infection free and prevent rejection all at the same time.
One of the side effects that I knew about but didn't really envision was hair loss.  The medication can temporarily cause small patches of hair loss.  I know it is just cosmetic and I know that it is only temporary and maybe I am being silly about it, but I still feel like crying when I see it. There are just some things, that no matter how much you know in advance, you just can't be prepared to see--This for me is one of them.   In the meantime, there is a lot of ponytails going on in this house to cover it up.

As for food, we are slowly making some progress.  Chocolate milk, although she is not interested in drinking it on her own, she will drink it at breakfast and dinner.  She may not be happy about it but she drinks it.
She loves cheese and everything that cheese is on!

Eating some good old Kraft Dinner--This meal never disappoints

Tim Horton's is quite happy and will sure to make a nice profit off of Alexa's favourite breakfast item--Bagels with cream cheese!  Don't mess with her when she is eating one of those!

She also had a burger for the first time--I wouldn't say she loved it, but she did eat the portion that we set for her--small victories!

Today is Chris' Birthday.  Alexa and I prepared a very rich meat and cheesy lasagna.  She has helped me before, but this time was different.  She was so happy to sneak the shredded cheese and finally I did not have to tell her that she couldn't.  She loved every minute of it!  And I in turn, loved watching how happy she was!

Before I sign off, I would like to wish Christian the very happiest of Birthdays!  This man has shown again and again how much he loves his family and that he would do ANYTHING for his children!  Chris, you are a wonderful father and husband and deserve only the very best to come your way.  Your children lucked out in getting a true hero for a father and no one is more proud of you than I am.

HAPPY BIRTHDAY CHRISTIAN!!!