Home and Unpacked

What? Come again?!?

Yes, you read that right!  12 days after receiving a liver transplant, we were discharged and are home and unpacked. 

Okay, let's rewind because it has been a busy couple of days,...

It seems that the central line in her neck was probably the biggest reason behind Alexa's inability to sleep through the night. Since it was removed and the PICC put in, her sleep has consistently improved...this makes for one very happy mama!  

Saturday everything was looking great (lab wise) so we were given a day pass.  We were let free at11am and had a curfew of 8pm for her medicine and IV hookup.  A whole day to go off, and be hospital free.  And it seems that was just what miss alexa required to change her grumpies....she was in some pain but oh so happy to get out of the confines of her room.

As soon as we got into the car, her entire mood changed.  She was laughing and talkative.  We decided to take her to the movies.  Along with her some of her closest cousins, she watched Turbo in 3D while enjoying some poutine--WITH cheese and I might add that she LOVED it!  

Turbo was a hit!

After the movie, we all went to have dinner at the Rainforest Cafe.  Where else can you sit four preschoolers under 5, three teen/pre-teen, and six adults without getting arrested for excessive noise disturbance?  We had a great time.

Maybe too good of a day...on Sunday Alexa seemed more tired and was a lot more cranky than she had been the previous day.  We were granted another day pass but decided to just go home and rest in our own beds.  In the afternoon, I got a call from our home care coordinator who was arranging for our home care nurse for when we were discharged...she seemed to think that we would be discharged the next day....that was news to me....

It was confirmed when we got back to the hospital that night.  If all was well with Monday mornings bloodwork, we would be going home....

Well Monday came and I knew from the beginning it would not be our day.  She was too tired, sleeping most of the day, when she was not sleeping she was so very upset with her stomach pain.  Morning labs showed glucose at 2.8... That is extremely low...almost requiring IV intervention but we gave her lots of juice and breakfast and that seemed to do the trick to bring it back up into the normal range.  Then the rest of her labs came back...Her white blood count came back elevated, add in that her temperature was trending upwards.  Well all that was enough to put discharge on hold for observation and re-evaluation in the morning.

Throughout the night her temperature went back down into her normal range and labs this morning were great.  WBC was back in the normal range and glucose back up in the normal range....they were quite happy to give us our discharge papers.  And that was enough to bring a smile out of miss cranky pants!

We are now unpacked, settled and getting used to this new routine.  

For a couple more days Alexa has a nurse visit 2 times per day to administer and IV medication.  As of Friday that goes down to once per day.  For the next little while, we also have lab work scheduled at the hospital every 3 days. And every two weeks for the next 3 months we will have a 4 hour IV infusion at the hospital.  Not to mention the approx. 10 oral medications that Alexa will be on for the next 3-6 months before they start tapering off....

As for food, I would love to report that Alexa is trying all sorts of new foods.  But that is just not the case YET.  She just does not have a great appetite with being in pain.  The morphine either causes nausea or constipation, so she is not interested in food.  She has tried a couple new things, but most of them have been forced or hidden into a liked item....we will continue to work on her slowly and give her time....this is all very new to her, and because she looks so good, we forget that she was just transplanted a mere 12 days ago.  

Alexa has proven again just how strong she is.  When we initially started the transplant journey, we were told she would be in hospital for about 3-4 weeks.  That was average.  We would be in the PICU for 2-3 days.  That was average.  Well Alexa proved them wrong on both counts, cutting their estimations in half.  Why or how she seemed to do this?  That I am not quite sure of.  Was it luck? Prayers? The medical team we had?  

Maybe it was all of it combined...the perfect timing, the perfect liver, the perfect team?

Things I will never get used to

There are just some things that I will never get used to, no matter how long I have been in the medical world and no matter how many times I have been through this before.

Alexa has been admitted to this very hospital so many times, far too many for me to keep count.  And although, I know the routine, I will never get used to feeling like a stranger in someone else's house when I am here.

Alexa has had to be out under anesthesia 3 times now.  Today she had to be put under to have her PICC line inserted and her central line removed.  Unfortunatly for us, the IGT ward where PICC lines are inserted is on the 2nd floor. To the right of it is the operating room where she was transplanted just 8 days ago.  In fact the waiting room where we waited today was the exact same waiting room where I was exactly 8 days ago waiting for that doctor to give us a report on how things went.  To the left of the IGT is the PICU where we spent the first 36 hours after transplant.  I was unsure of the unresloved emotions I had with those two areas until I was literally stuck back right in the middle of them.  Walking down that same corrider to go see my angel in recovery is just something that I will never get used to.

Trying to calm down my 5 year old in a pre-operating room because she KNOWS that something worriesome is on the horizon, is something else I will never get used to. 

Watching Alexa come down off of the effects of the sedation medications, watching her pain, her doscomfort, her agitation, is something I will never get used to.

Just because we all went through this last week with a major surgery does not make it anyeasier to go through today with a more commom procedure.  

All of this. I can just never get used to--its just not our normal....

Alexa's night have not been any easier.  Sleeping here is plain and simple hard.  She falls asleep without issue, but in betwen the IV alarms, the nightly infusions, the different medicines thw need to be administered, the vital sign checks.  Add in the discomfort she has from her incision and the disofort of the central line in the neck.  Well, would you be able to remain asleep?  She is up a lot throughout the night.  Everytime she is finally sleeping, someone walks in to check on something and wakes here up....it is FRUSTRATING!!!!  Add to that a SUPER cranky child and you have one unhappy mama!  Yesterday was not the best of days.  She was a little happier in the afternoon and evening, but I was quite happy to put yesterday to an end.  Two things did brighten my day however.  Taking Alexa out for her exercises:

How could this face not put a smile on my face?

Secondly, Dr. G came by and mentioned that Alexa was doing so well that we needed to have day pass this weekend.  We will have to be examined tomorrow morning to make sure there are no glitches due to the PICC line going in, but plan is to get out of here for some hours.  

We have started with me administering her daily meds.  They have left a "home medication kit", filled with all her meds. I fill the syringes and check off that she has taken the medication.  The nurses check the dosing and sign off that I have gotten things right.  

Dr. G also said it was time to leave our comfort zone of this hospital and look at discharge for next week---WHAT?  Now, I know I said that I did not want to get my hopes up. But when the GI staff is telling you that you need to get home, well how do you not get your hopes up?  

Today Alexa was in a great mood (at least until the PICC line procedure). She worked on her bravery necklace amd played with her cousins.

Daddy visited with Alexa for a very long time.  He is feeling much better and looking fantastic.  But pushing a little too hard, too soon and draining himself by end of the night. I know he wants to get better to be here with us and I would love nothing more.  Watching him leave us today was just painful--we have never been apart this long.  But his health needs to come first right now...I will need to put my needs for support aside until he is healthy enough to be with us. 

Considering Alexa was unable to eat or drink anything because of the PICC line which was for 3:30pm, she was in a fantastic mood.  The insertion went well, but she was not happy when she got out of the procedure. Coming down off the sedation meds are difficult.  The cycle of sleep and screaming is difficult to watch.  She gets so agitate that it took TWO doses of morphone and one dose of gravol go calm her down.  And that led straight into the evening--when all the pains come back, it is when all the discomforts arise. It is when the frustrations of not being able to sleep come around again.  I just want to know that once we get home, things will get back to normal--that she will be able to sleep again without waking in pain?  It WILL get back to normal, right?

Good news all around

The last two days have brought on pretty good news...

Christian was discharged yesterday....a mere 5 days after getting half of his liver chopped off!  He really is a super hero.  And as great as it is to get himon the road to recovery, he is farther away now and although we did not get to see him an awful lot at TGH, somehow knowing that he was just across the street was comforting to us all.  We are just not complete with him so far.  

Alexa has been up more and more during the day and less and less at night...YES!!!! Oh how I have missed you sleep!  She has been having good and bad moments with the pain.  We have been working on walking and sitting up for longer periods of time.  

We are also working on introducing food so that the TPN (IV nutrition) can be weaned down.  Our diet plan is simple--so simple itis scary....no restrictions, let her have what she wants.....For someone who has had to control every morsel fo food that entered her body, this is tough for me...big gulps....we can do this.

Her appetite has not been great...yesterday for lunch she ate a bit--yogurt (which had way more protein than she would ever been allowed before) and raspberries and 1/4 slice of toast with peanut butter.  Funny story for dinner(I can laugh about it now). We thought we would be creative and she was all for it!  She asked for penne pasta with alfredo sauce (and parmesian cheese to boot!)  and some milk for the first time.  I got a great picture:

And was all excited to share it with the FaceBook world.....and then I saw that look...you know which one...the one that tells me, get a bucket quick!  Yep!  She threw it ALL up!  

My mind went straight to "oh my god, is it the ammonia?"  You can just imagine what was going through my mind. Trying to retrain a brain after 5 years is hard stuff!  And so the doctors came to give me a pep talk this morning...They told me that they realize I am scared but that her ammonia is fine. So fine they do not even bother reporting a number to me anymore!  Her citrullin is amazing (285 at last report--down from 3400 on Thursday!). We have to offer her lots of variety throughout the day.  In all likelihood, her stomach was just a bit too sensitive with the combination of medication and food, and with it being the first big meal, it was probably just too much for her.  They have asked me not to restrict her meals at all--Get this!  She now NEEDS protein to help her liver and incisions recover! Her protein is way too low and we need it to get up so that we can wean her off the TPN.  And all that from the metabolic doctor!  I am to throw out everything I ever knew.  So I am letting go, well trying to, okay, okay!-At least I have made an attempt!  This morning, for breakfast she ate a hashbrown (of course--and well within my comfort zone) but with scrambled eggs including the white! And that was definitely a first!  And it stayed down!  Whoo hooo! 

Lunch brought on more firsts as she ate a chicken nugget and a couple of french fries.  We are working on smaller but more frequent meals, so as to not upset her stomach.  And as an FYI, she did not really care for the nugget, but then again her appetite is still not very good, she didn't care for the french fries much either.  

Alexa was not super happy this morning, but then she got a super special visitor.  One of her teachers came all the way downtown to visit with Alexa.  As soon as she saw Ms. D, a smile came out and she spoke her actual first words of the day!  They had a lovely visit, reading and playing together.  It completley turned Alexa's mood around. Thank you so much for the visit!

And I have started my sessions with the pharmacist to get training on her medication routine for when we are at home.  A whole new world of medicines here. The pharmacist might have even mentioned discharge in a week, but I have been through enough admissions to know not to get too excited about that. Things can change in an instant, and even the tiniest of things can delay discharge, so I am definitely not counting my eggs so to speak.  I planned for one month, anything earlier would be considered a blessing!

Her doctors, all of them, metabolic and liver, are very happy with her progress!  I started this post at 10am and it is now 3:30pm.  I continue getting updates and so the latest is that Alexa's TPN is going to weaned back to just running from 8pm to 8am.  During the day it is all oral intake.  Her labs look great, and they are just figuring out the sensitive balance of the medications.  All IV's with the exception of the central line have been removed, and we are looking at getting the PICC line inserted at the first available opportunity.  And even the central line is being weaned back so that during the day, when she is not getting any medicine infusions, she will be line free and then hooked up again at 8pm.  

And I'd say that is pretty good news for one day!

Motoring Around....

Funny how things can change in a matter of hours.  Although liver wise, everything looked fine, yesterday brought on some other concerns.

Alexa spent most of the day sleeping, the time awake was spent in crying in pain and frustration.  The only moment we saw a smile on her face, was when daddy came to visit her:

Her blood pressure had slowly started to creep up; the theory was that it was due to all the water that she was retaining, and her temperature was also slowly on the rise.

Her night was not great--not PICU horrible (like that second night) but not so good.  She was up every couple of hours and was being very uncooperative with her vital signs checks, trying to pull at her lines and generally unhappy.

Her dad had a similar night---I think we were all just frustrated this morning!

To wake up and hear that a fever is looming was not what I wanted to hear.  The GI nurse practioner came in and set up some plans:

--an albumin transfusion with laseks (not sure of the spelling!)to help her dispell all that extra fluid--and it has worked in just a couple of hours.  

--continued monitoring of her blood pressure--it seems that too was helped out by the releasing of the extra fluid as it has come back down into acceptable range without extra medication

--continued monitoring of her temperature.  We are happy under 37C(98.6F).  If she got up to 38C (100.4F) we were going to start a round of antibiodics and grow cultures, etc.  I did NOT want to go there, so I am quite happy that all subsequent temperatures have been consistently between 36.6 and 36.9C.

--attempting some solids--we are not doing great here. Although she has eaten some jello and raspberries, it is not out of wanting it but more at my insistence!

Alexa has been up for more awake time, and more importantly her time awake is not spent crying...I would not go as far as to say she is happy, but there is definite marked improvement from yesterday.  She is falling asleep easier, without the extra bolus of morphine, so that is improvement and her time in between that extra bolus is getting longer and longer.  She doesn't have much interest in playing with her toys or watching her iPad, but she did muster up enough energy to play with her baggy of tourniquettes, alchohol wipes and gloves.  That was the one smile we got this morning!

You can see that she was still quite swollen at this point.

And then the transfusion finished, and she got another visit from daddy (who is looking and feeling better with life this afternoon!) and things started turning around.

She got a visit from the physiotherapist who suggested that we get Alexa up and sitting in a chair and even a couple of steps in the hall.  

Well Alexa jumped off the bed and took to the races...seriously this girl was motoring, surprising everyone including the PT.  I think she actually surprised herself as she got to the nurses station, turned aournd looked at me with tears in her eyes and asked me to pick her up.  But the PT knew she could make it back, so we encouraged a bit more and she made it all the way back to her room!  Seriously this girl is just amazing!

And then she did her sitting exercises:

When she was done, she was in some pain and quite tired. It was clear daddy and daughter needed a nap.

Have you ever seen anything sweeter?

Long Long Days

It has been a long couple of days.  Sleep is at a minimum for everyone!  

All is great with our troopers but both are in incredible pain.  The morning after sugery, Alexa had a chest x-ray and an ultrasound done.  Neither raised any significant concerns and so her breathing tube was removed, and her sedation medications were reduced.  She slowly started to come out of sedation and ithings got tough for her. From about 12 noon to 7 am the next morning she was in cycles of deep sleep for 3 minutes at a time, followed by 30 seconds to 1 minute of being awake where she would literally fight us to pull out any and all tubes that were witin arms reach. She was incredibly thirsty and only allowed to suck water off a sponge, angering her a lot. They were trying to find a balance between enough morphine to mask her pain but not too much so that she would be a bit more coherent.  Finding that balance was difficult and no amount of research can prepare a parent for watching her child suffer like that.  

In the PICU, from 7-8am, nurses areon switchiver and patients cannot have visitors.  I knew that after the day and night we had, she was going to give the nurses a run for their money with out me there--and that she did.  When i was allowed back in, there were 3-4 nurses trying to hold her and bloood everywhere--she had ripped out one of her IV's. Luckily it was an extension one so although looked bad, it did not have to be reinserted, just cleaned up and re-secured. But I was not too thrilled with them.    By some sort of devine fate, the PICU had a shortage of nurses, and so they sent nurses from the tranplant ward to come and take care of her.  And that they did...they rearranged her lines, got her settled with medication and arranged discharge and transport to 6A (transplant ward). We made it out of intensive care in less than 36 hours after surgery!  Pretty darn good for my princess!

We settled into our room and Alexa was able to sleep better and for longer periods.  Her awake periods in which she is screaming in pain, are slowly becoming less frequent.  Last night she got some good sleep periods of 3-4 hours each.  The hard part is anticipating her pain and getting her meds early enough to ensure she does not experience much pain.  She no longer has a nose tube as she pulled it out in the middle of the nght while mommy dozed off.  Doctors decided to see how she does without it before placing it back in.

This morning she seems a bit better pain wise--she did some facetime vwith daddy and that brought some good smiles.  Although, it might have worn her out as she is now in some more pain and trying to sleep.

As far as her new liver goes, so far so good, it is working wonderfully.  All her liver functions are coming down, some a bit slower than others, but all decreasing which is good.  They were doing a lot of ultrasounds because one of the initial ones was not showing very good blood flow, but since, it has improved a lot.  They are still monitoring it, but Dr. G is quite happy with her.  Metabolic wise, 1 day after tranplant and that pesky citruline which was always in the 3200 to 3800 range was down to 1000. They have not run amino acids since, so Monday will be interesting to see.  Ammonia continues to be under 40 with TPN (nutrition) of 1g protein per kilo and no metabolic meds! Amazing!

Managing her pain and controlling her sneaky attacks to pull out a line has become our biggest and hardest battle.  Hard but not too shabby considering she just finished a major surgery.

And across the street, everyone is so surprise by how great Christian looks.  He is eating--although not as much as he wants. He is walking--maybe a little too much as he is in a lot of pain too.  I do not have as many details as i have literally seen him 3 times, once per day since being out of surgery.  Alexa wants me by her side, A LOT, and daddy would not have it any other way.  I just spoke to him, and the plan is to have him brought here to see his girl this afternoon!  AND there is talk of possible discharge tomorrow!!!  4 days post surgery!  

Seriously--my two are such champs!  Love them to pieces!  

We will all be reunited again soon!

July 18-19, 2013

Days I will not forget!  EVER!!!

Yesterday was a LONG, LONG day.....longer than I imagined and the 2 final hours seemed like torture to all of us.

I apologize in advance if this post is not in the exact order, but I feel a little out of it still, my mind is not focused yet.  Running between 2 hospitals has got me lost.  Half the time, I am not sure what floor I am on...heck I may not even know which hospital I am in at any given point.  In 2 days, we have been on 5 different floors of 2 hospitals and although the hospitals are right across the street from eachother, getting to the room or ward that Chris or Alexa is on is a bit complicated for even the clear-minded. Needless to say, I have gotten lost a lot..(maybe not lost, but I have gotten off on the wrong floor of BOTH hospitals MANY times)

We got word from Christian's doctors that nis surgery had finished at about 2:45pm.  Everything had gone really well, no colications and the liver was perfectly pink.  Over at HSC. Alexa's nurse and social worker for the liver transplant team were updating us on Alexa.  Both of them are great.  Alexa's nurse was actually the one who went to retrieve Christian's liver and transported it to Alexa's OR.  We had been joking(ok not really) with her to be very careful and do make sure she did not trip.  She joked back that the kidney team always pokes fun at her for taking the longer underground path versus just walking across the street.  She told them" are you kidding me--the one time I cross the street, is when I get hit by a car, and can you imagine the liver flying?  No thanks! Long route it is!"  I appreeciate her taking that longer route!  So at about 3pm Christians's liver had already been transported over to Alexa and she was stable and doing well.

We were finally able to see Christian at about 5:30pm, and i have to say, he looked great.  His breathing tube had already been removed and he was semi-alert, in some pain but managing with his morphine drops.  We saw his surgeon at 6:30pm who informed us that everything went very well with Christian and that he had been communicating with Alexa's team and that they were working on the bile ducts and should be done in a couple of hours.  

Hoping that she might finish early, I went back to her waiting room at 7:00pm....and waited...and waited....I got a call from an OR nur at 8:18pm telling me that the surgeon was coming to speak to me so to got to the waiting room.  I told her that I was there already waiting.  She said great and hung up...that wad the extent of our conversation....and then i waited and I waited, and as each minute passed, I started to get nervous and more nervous.  Your mind can be your own worst enemy as it starts to wander and think the unimaginable.  And thats just what my mind started doing...questioning and analyzing everything.  By the time 9:03 hit, I could barely breath, I thought I might throw up.  I turned to my wonderful friend for some cross/country support becau the tension in our waiting room was at an all time high.  I needed to speak to someone who understands me, who KNOWS exactly what i was feeling....At the same time, my sister in law and mother went to speak to a family friend who coinceidentally is the PICU receptionist.  She called the OR direectly to find out what was going on....Alexa was still in surgery but that everything was fine--they had just underestimated their timing!  I thought i might puke from relief upon hearing that!  

Her surgeon finally came to spoke to us at bout 9:30--maybe a bit later and informed us that everything went very well.  She remained stable through the whole procedure and know we just had to wait to see how she takes to the new liver.  They were just preparing her for transport.  Someone should have warned me how long that takes---actually i think someone did but after 12 hours of not seeing your baby my pateince had started windling....

We spoke to her anesthesiologist who also told us that she did great....she had gone into the OR playing and smiling until she was put to sleep.  I am not sure what sedative they gave her in the pre-op but mama needed some of that, cause instantly she went from nervous and anxious to high as a kite....(Alexa:  note to self-- This is the only time I will laugh at you being high!!). Alexa was laughing at the curtains and was searching my hands, and hugging me!  She was actuallu quite amusing!  Mama could seriously have used some of whatevr she got!

When we finally got to see her, it was tough.  She still had her breathing tube in(normal) and was very swollen from all the fluids she received.  It was very tough to see her like that and not everyone was able to do it and keep their composure.  But she was doing well, metabolic labs were trending lower (good news) and liver labs although high are going down in the right direction.

This morning Alexa looked much better.  The swelling has gone down.  Her metabolic labs were consistently returning great numbers overnight so they have stopped all metabolic medications.  She is still sedated as they are repeating her ultrasound to take a look at the bloodflow.  If the results come back positive, they will remove her breathing tube and cut back on the sedation medication.  Will update as soon as I know...

Meanwhile back at TGH, Superhero dad was already sitting up this morning, asking for juice and even food from the doctors!  Slow down cowboy--one step at a time.  He is going to make his nurses earn thier wages this week--he is not going to be an easy patient...lol. He is in pain, obviously, but working through it to recoup quickly...he wants to see his girl. He is doing an ultrasound now, waitng for those results too.

(Many of you are following my facebook posts(thank you for caring so much!!)  so this may be all repetitive but I know there are people who do not have facebook who are waiting for these updates.  )

So that is where we are at--waiting to see how she responds, running back and forth between my brave heroes.  Waitng for the day we can all sleep under the same roof again!

I will leave you with a couple of pics that we took throughout the last couple of days....there will be none of either Christian or Alexa in ICU.  Daddy asked for this specifically and we are respecting their privacy....

Still in our room waitng for transport to take us to pre-op

This was in the pre-op before the sedative was given.

Alexa's new pal:

In a couple of hours....

...our worlds will change completely...

....the love of my life and my love will go into operating rooms...

...my baby's father will give her life for a second time

I thought about blogging late last night to update everyone, but then I thought that it was late and I would be better to try and rest up.  However, that was a pointless attempt--through the middle of the night IV start and final oral meds, through the very frequent vital sign checks, through the IV clicks, drips and alarms, and through the nightmares of high ammonia and impending infections, WELL...after all of that, there was VERY little sleep had last night.....so again, I thought I would update those who do not have facebook, but then i thought that everything I was trying so hard to contain would all come gushing out!  So again, I decided against blogging.

Yesterday was a pretty good day, all things considered.  We met with a TON, and I seriously mean a TON of doctors, nurses, anesthesiologists, etc.  Alexa had some blood draws, her IV started and we spent the in between time statting her bravery bead necklace....A very cool initiative started by the women's auxillary. A different bead is assigned to every single procedure imaginable, and the children add to their necklace as they undergo procedures.  I imagine after all is said and done, Alexa's necklace will get quite long.  

What's the plan for today?  Well, Christian is already at Toronto General Hospital getting registered and checked-in.  Alexa already had her morning blood draw.

Christian will go into the operating room at around 8am.  His surgery should start around 9am.  After they get a look at his liver and give it the all clear(about 9:30 or 10am) Alexa will be brought down to the OR here at Hospital for Sick Children and they will start preping her for the surgery.  Christian's surgery will take about 6 hours.  I imagine he will be done around 2-3pm.  If all is a go, they will start on Alexa anywhere between 11-12.  She should be finishing up between 6-8pm.  

And that is it.....one paragraph to sum up the most frightening moments of our lives.  

If you wouldn't mind, we would appreciate all prayers, positive thought and well wishes....please keep my family in your thoughts today so that we are united once again happier and healthier than ever.  

Packing Up....

After yesterdays all clear, I came home and had to finish packing Alexa's stuff.  I had started but thought that I might be jinxing myself so I only packed the easy stuff like pajamas until we got the go ahead.   

I got stuck on the "other stuff"--

What do I take to comfort a little girl whose world is about to be completely turned upside down--For a second time?  

What do I take to remind her off all her family and friends who love her so much?  

What do I take to remind her of her home, room, bed, all her stuffed animals, and toys that are waiting for her prompt return?

And what do I take to entertain her on those days when she has just about had enough of the medical world?  After all, there is only so much iPad and Disney DVD's a girl can stand.

And have it all fit in one suitcase--I know we are getting a private room and all, but it is not exactly a penthouse suite--Space is at a minimum!

This seemed like an almost daunting task--perhaps that is also why I held off on it for so long(that and my superstitions!). So, I consulted with the Transplant Child Life Specialist, who thought that I should ask Alexa what she would like and have her help in the packing process.....

This is what we came up with....

Alexa's B-Strong Bear was gifted to her by one of her teachers, Ms. G. It has a very special meaning to us and I am sure will give her strength when she is feeling down and courage when she is scared. 

Our "perfect liver" given to Alexa and Chris by one of our dear friends. 

An assortment of sticker and activity books given by Alexa's teachers and her aunt. They know her well and managed to find all her favourites.

Alexa's Ariel dress--cause there hasn't been even one day since she got it that she has not put it on. I am hoping that once she is feeling well enough to start moving, she will put this dress on and it will give her the motivation she needs to take that one extra step. She is the happiest when she is strutting her stuff in this princess dress.  

Her favourite bed time pals--Minnie Mouse, pink teddy, and her new favourite blanket. She sleeps with these every night and always brings them on every trip we go on.

Our Organ Awareness and Rare Disease Awareness collages that I sent to be made into posters. They are pictures of all her friends and family near and far who always support her. My hope is have these up in her room to remind her how loved she is. Seeing all those familiar faces is sure to bring lots of smiles. 

This beautiful rosary is so very special to us. It was given to Alexa by yet another one of her teachers. It was blessed a couple of years ago back him where Mrs. D grew up. We could not go to the hospital without it. I am so happy that I can have it in my hands while I pray for my little girl, my husband and all her doctors. 

So this is it.....all packed to go to our home away from home.  

Anything you can think of that I have missed?  I have one more day, let me know quick....

Cleared for Transplant

I was a bit nervous about today's final pre-transplant check-up--who am I kidding, I was a lot nervous judging by the nightmares I was having last night in which I take her in to be seen and she has a high fever and won't stop throwing up.....

I am super thrilled to say that our appointment went nothing like the dream.  Alexa's ammonia was 23! And physical examination showed a clear and clean system!

 We were given the clearance and told to report Wednesday morning for admittance.  It is a bit earlier than normal, but due to her complicated metabolic condition, they do not want any hiccups on Thursday. 

I met some new to us doctors and was reminded again about how great and caring our transplant team is. 

We were approached about many different clinical trials and research going on. Because I know that transplant is only possible for us right now because of all the others previous to us who said yes to trials, I said yes too. It is the only way to advance the knowledge so that those after us stand a chance too. 

Please know that i firmly believe in participating in studies for the advancement of medicine BUT I would never blindly subject Alexa to any research if there was any chance of it causing her care to be lowered or if I though for a second she might experience any amount of discomfort as a result of it. 

That being said, these are the trials that Alexa will be a part of:

1) A transplant centre biobank registry which will collect and store biological samples in an attempt to identify the genes that influence the outcomes after transplantation. It is the hope that it will help in finding ways to improve treatment, develop new medicines, diminish side effects, and combat rejection. 

2)A trial of tacrolimus dosing after transplantation. Tacrolimus is a commonly used medication after transplant to lower the activity of the immune system. This study aims to find out if they can reach the desired levels of the drug sooner by adjusting the dose based on the kind of gene one has, versus dosing based on weight of the patient. 

3) They have asked and I have given permission for them to video record Alexa's surgery to teach medical students at University of Toronto.  

I can even watch it they said---uhhhhh not sure if I am ready for that. Maybe in a couple of years. 

These are quite brief descriptions but if anyone has any questions about them or interested in more details, please feel free to email me. I am more than happy to discuss them. 

Once again my sweet little girl will help others. With each day that passes she amazes me more and more. 

As an aside, both my computers went kaput at the same time. I had many pictures of our 3 weeks of summer that I would like to share. If can get access to a computer or my iPad memory card adaptor comes in soon, I will post them.  And I discovered that I really hate blogging from my phone!