Alicia's story

NG to G

OK, what a weird title, but what does it mean? Well it means that today Alicia will have her first mini surgery, no, not on the heart mind you.  Today the doctors will be removing her nasal-gastric tube and will insert a Gastric Tube, surgically, directly to her stomach.  You might think it sounds serious but it actually is a good thing.  Lately Alicia is vomiting a lot and if she does that three to four times a day she will not have enough energy to keep her parents “busy” nor will she grow or get enough nutrients.  Having her feeds go directly to her stomach will help her to absorb the food faster and cause less vomiting.  Another good think is that we can connect this tube to a machine that will automatically feed her at night and we no longer have to watch a gravity pump drip for 40 minutes.  On a lighter side, the best thing about the G Tube is that it wont be in her nose anymore and she can avoid such questions as “Is that a breathing tube”, or “Is it some sort of an antenna” and my favorite,  “Is it a cable that you plug in to charge the battery in her pace maker” J   We and other parents on the unit, with similar conditions have heard it all.  And “no” she does not have a pace maker.  Alicia is doing fine, she still has good times and bad times, but she is OK. 

Emily on the other hand is being thrown from one relative to another and honestly she misses mommy and daddy.  I must tell you that as a 2 and a half year old she puts up with a lot and understands a lot as well.  She knows that mommy is in the hospital with Alicia, she also knows that Alicia has a sick heart and can’t be alone.  I really want to thank those of you who took care of Emily in the past two weeks (and fed her chocolates and cookies L) while her babysitter was on vacation.  Also thanks to all of you who offered to help out with Emily and don’t be surprised if one day Kathy and I will want to get away from it all and go to the movies and your phone will ring with one of us asking you to come over and be with the kids.  That’s enough for today.  To be honest, it feels good to throw your thoughts out on paper (well in this case on the screen)

Take care, and remember an NG Tube is a feeding tube not a cable that recharges anything.  LOL J

Mirek and Kathy.

The List

It is official, as of 3:00pm Yesterday (July 25 2005) Alicia is listed with an organization called "Trillium Gift of Life".  This organization searches for a donor heart on the hospitals behalf, the heart can come anywhere from Canada or the US.  Wherever the heart comes from, Alicias surgeon will go there himself to examine it and he is the one that will bring it here to Toronto. The heart can be outside the body for a max of 10-11 hours.  We have received a pager from the hospital, so as soon as a heart becomes available they call or page us immediately. 

Will we ever know where the heart came from?  No, we will not, we will not know who it belonged to eather, and that is all do to privacy.  But if you watch the news and you hear of an accident that is being reported and it happens to be a baby, than you can kind put two and two together. 

Till next time --  Mirek

Test Results

Dear Friends and Family

It's been a while since we have updated you with Alicia’s Condition and lots has changed since my last email. 

It's been now approx. 2 and a half months that we are in and out of the hospital, I must tell you, we had some good days and some bad ones (that goes for Alicia as well)  To start of I want to tell you what Alicia’s condition is called.  It is called

"Cardiomyopathy", which basically means that the heart and some of the hearts muscles are larger than normal (usually to large and to weak for the heart to function properly.  Alicia has been receiving 4 types of oral medications 1 to help her heart beat harder, 1 med (a diuretic) to help drain all the extra fluids, 1 med to dilate the vessels around the heart for better nutrition, finally, a blood thinner medication to help the blood not to clot and allow it to flow easier through the vessels.  The doses of this medication are being increased weekly in order for her to get used to them (In order to see big results of these medication the wait is approx 3 - 6 months) 

Last week was a tough week for us, Alicia had many and I mean many tests, these tests were to determine how the medications are working and what will be the next step in her treatment.  I think it was Thursday of last week that we were told the news that the only thing the medications are doing is keeping Alicia alive but not helping her to get better.  The doctors told us that after looking at the test results and looking at X-rays and Ultrasounds they can see that Alicia’s heart has even worsen.  It actually got a bit bigger and thinner.  And at this moment we were told the news (news that we were dreading to hear) that Alicia’s only hope at this time is to be listed for a Heart Transplant.  We were devastated and confused, everything was just happening so fast and we were asked to make a decision if we want to do this or not.  On that Thursday Alicia had her last tests and now the doctors started to work on us meaning me and Kasia.  We went through a ton of meetings and counseling sessions with Doctors, Surgeons, Social Workers etc... Although we already knew that we wanted to go with the transplant and give Alicia a life, these talks, with the medical staff, helped us understand a bit more of what to expect, and I got to tell you that the days before a transplant and months after it will not be easy.  One of the best meetings we had was this past Friday where the hospital arranged for us to meet a family that went through a transplant.  It was the best meeting we ever had, our eyes opened and we started to believe that there is life after Transplant.  This family’s son had a transplant when he was only 14 months old, he is now 7 years old and is doing great, he is full of energy and life. 

So what’s next…..???.....  Well, now we wait.  We wait for a donor heart and that wait could be approx. 1 day to 1 year.  Thanks to lots of research at the Hospital for Sick Children, Alicia does not have to wait for a heart that is from a candidate with the same blood type.  Approx 9 years ago a doctor from Sick Kids discovered that babies do not develop their immune system until approx 1 year of age and this allows them to put in a heart with a different blood type, this makes Alicia lucky because it shortens her wait and the only criteria she has to match is to wait for a heart that will fit her little body. 

Once again we thank all of you for your prayers and ask that you continue to pray for Alicia that she will be well enough to wait for this heart and strong enough to accept it when it comes.  So far she has been a champ and a fighter but I must be honest with you that she is getting weaker and nothing hurts more than seeing your little princess in pain.  Please drop in to this website again next week or late this week for another update.  If you want to send us an email (even just to say Hi) click the email link on the left side and that will go directly to me.   Also take a look at some of the pictures I’ve posted (click on the Picture link) 

Take Care --- Mirek and Kasia

Alicias Story Post 1

Hello Everyone !!!!

As of today we have started a weblog (an online journal) titled "Alicias story".  Everyone is asking us for constant updates on Alicias condition and we are not always available to answer our phone or read our email, we thought that an online weblog would be a great idea.