Alicia's story

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http://aliciasstory.blogspot.com/

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New Entry & update comming this week

Moving forward slowwwelllly

It's me, I am back, the computer is finally fixed, I am happy about that (Kathy is not though she thinks I am spending too much time in front of it).  Remember how a week ago I said we are going away for the long weekend?, well that did not happen, Alicia developed a cough and the doctors thought that we want to get away from it all a bit too soon.  Well maybe it was better that we stayed at home because apparently it was really cold up in Algonquin.  That’s OK maybe some other time.  Alicia is doing great we and the doctors are very happy with her progress, her wounds are healing nicely as well.  She is still seen be a physiotherapist weekly and she still goes for her weekly visits to the hospital.  Apparently as of next week the weekly visits will now be every two weeks (what a relief). This Friday she had her first Biopsy done.  They took 6 microscopic pieces of her new heart and will check for rejection.  We will not know the results for about three days.  Emily is doing amazingly good as well, I think she is finally back to her own self, she is still very protective of her sister and she helps us out with taking care of Alicia.  We still have sleepless nights, Kathy more than I, as meds and feeds have to be given during the middle of the night.  We are starting to get nervous now as the time has come to think about the future (not so distant future actually).  Kathy has to return back to work in the middle of January and we don’t know what we are going to do about babysitting (with Emily it's not a problem) but Alicia needs full time care and she needs to take her meds, meds that cannot be missed.  I am sure we will figure something out.

Thanks everyone for your emails (and help) in the past two weeks, also a special thanks to St Mike's nurses for making Kathy laugh, (your unit update emails).  And sorry to anyone who got a piece of my computer virus. 

Have a great week.

Click on New Photos "Home after Transplant" (on the left side)

Mirek and the girls.

Sorry for no update

Hello my friends, I apologies that I have not been updating for a long time.  My computer has caught a virus and is being repaired. Also the adjustment to Alicia being at home is taking a bit longer than we have anticipated (still trying to work out the perfect schedule for pills, feeds and sleeping for both Mom and Alicia)  I am planning to write an update next week.  This long weekend the girls and I are planning to get away from it all and spend some time up north breathing some fresh air.  Alicia is doing fantastic! She is loving her big sister and vice-versa. 

Once again, I will do my best to update the site next week and post some pictures of the girls.

Mirek

Our first week at home

Well it feels as though we just brought a new born home from the hospital.  There is a lot to do around Alicia.  The most difficult, I think, is staying on top with giving the meds, there is approx 15 meds but some have to be given 2 to 4 times per day and are supposed to be given by mouth (and that is difficult). Unlike Emily, Alicia does not like meds, it is a challenge to give them to her because as soon as she sees us coming with a syringe she closes her mouth and sometimes there is just no way that she will open it.  If it wasn’t for the feeding tube I don’t know what we would do.  Alongside the meds she also needs to be fed every four hours (day and night) and each feed takes one hour through the feeding pump.  I am doing OK but Kathy is sleep deprived majorly. Don’t get me wrong I help as much as I can also.

Emily is doing fantastic! she is really playing the role of a big sister well, she is overprotective of Alicia and does not allow anyone to pick her up. She constantly brings to Alicia her favorite toys and recently even started reading (in her own way) stories to Alicia.  Now that we are at home Emily feels very secure she is more happy, calm and relaxed. She sleeps better at night and mostly in her own room.  Alicia also sleeps through out the night which is great.

Alicia’s first biopsy is scheduled for October 14th, on that day the doctors will insert a small tube through her neck and lead it to the heart where they will cut out a microscopic piece so that tests can be done to see if her body is not rejecting the heart. Doing a biopsy is the only way to see if her body is accepting her heart.

Take care for now

Mirek

We're going home!!!

Today we are getting discharged from the hospital!!!!!!! this means that Alicia can finally come home and live with us. It’s been a long 5 and a half months at Sick Kids, all that’s left now is weekly visits to the clinic.  Now the hard work begins, as at home there is no monitors, machines, IV’s, doctors and nurses its just Kathy, Emily me and a whole bunch of meds that have to be given every hour of the day.

As soon as we get settled I will update the site with more info.

This Weekend

Thanks everyone for your comments, voice mails and emails (after that last post).  I will take more picures of Alicia this weekend and post them next week.  I am writing this short post because I want to inform you that as of Friday 3pm till Sunday 12 noon, Kathy and I will not be in the hospital.  Alicia will be alone with Grandma and her nurses.  We have been invited to attend a wedding.  To tell you the truth we are very excited of going and just getting away from it all for a few hours. So if you are interested in visiting we will be back on Sunday at noon and than probably half of next week.

Grandma Halinka, thank you for being there for us and Emily this whole week, we couldnt have done it without you. :) thanks for you time and mostly your patients.

Mirek and Kasia

A Picture of my GIRLS..........Click on the picture to see it bigger

Sisters Reunite

This weekend was my turn to stay with Alicia as Kathy had other things to do, you know, the fun stuff in life such as cleaning, vacuming, laundry & shopping.  I had fun with Alicia this weekend.  She was finally moved to her own room and we got lots of time to catch up on father daughter bonding.  We watched some cartoons, listened to some music and bother the nurses as much as we could (in a fun way of course).  It wasn’t all fun and games though, I did my Daddy Duty too, I changed 21 diapers prepared 14 feeds, cleaned up three vomits gave approx. 30 medications and slept only three hours. The highlight of this weekend happened this evening when Emily came to visit Alicia for the first time in two months.  Emily was so happy (I think she was a bit nervous too) she jumped for joy for approx 5 minutes.  Emily started to remember all the songs she learned in the past few months and started to sing them to Alicia and dance at the same time.  Alicia watched her closely she too got excited she started to smile and move her hands up and down as if she was dancing, they really had a sister moment, Kathy and I did not interrupt we sat back and with tears in our eyes thanked God that this moment has finally arrived.  My parents also came in this weekend to see their granddaughter they didn't show it as much but I know they were very emotional.  Talking about visiting, I think we might be in the hospital for another week or a week and a half and if anyone would like to see Alicia you are more than welcome.  One of the doctors said that the biggest gifts our visitors can give Alicia at this time is their honesty about their own health during their visit.  What he was trying to say is that Alicia is taking many immunosuppressant drugs and this makes her vulnerable to catch many infections which could be dangerous to her at this time.  This precaution should be followed for the next three to six months.  So if you do plan on visiting her, whether it be at the hospital or at home, please let us know if you have any infections or fevers.  We know that some of you will want to bring a gift for Alicia and in this matter we ask that the only thing you bring is your well wishes and a warm smile, but if you do insist on bringing something please let it NOT be any stuffed animals, teddy bears or dolls.  Alicia and Emily have many of these types of toys and our small house can't hold any more.  The girls love to read, listen to music and dress up so if you really plan on getting them something please choose from one of these categories.  For those who don’t know, we are at the Hospital for Sick Children on the fourth floor in section “D”. 

I know I have been lacking in updating Alicia’s site lately but please understand that between work and the hospital any free time that I do have I try to spend with Kathy and Emily.  I will do my best to keep you updated on a regular basis (not everyday basis).  Now I will end my long post here and (thaks to my good friend) go to the fridge and take out that delicious cold STELLA that is calling my name for the past few hours.

CHEERS !!!!

MIREK

The past few days

After the transplant Alicia was in the ICU for only three days, to us that was definitely too short.  Her meds were to be stopped very fast and she was to be moved to her own room after only three days in the step down unit and then sent home after approx a week of being in her own room.  We panicked, we kept on saying that Alicia is not ready for such quick and sudden changes but they decided that she is.  No one was agreeing with us but Alicia (who still does not have her voice back) in her own way told the doctors that things are happening way to fast.  They seemed to listen to her.  She was weaned off Morphine so fast that she started to have big withdraws, she would cry a lot and within 48 hours only slept 2 hours.  She developed a fever I believe it was from all that sudden changes and stress.  Her breathing went up to 90-100 resp. a minute (just as it was before a transplant) her lungs were still very wet and she needed to be suctioned often.  So as you could see if Alicia was in her own room and no one looked at her things might get ugly.  Alicia’s nurses and doctors discussed her condition in more detail and decided that she will stay in the Step down unit for a few more days and the Morphine will be weaned off through out a month not a week (which means we will stay at the hospital a little bit longer).  One day after that decision Alicias meds were changed and rearranged and she started to feel and look better.  This long weekend was great! she felt good and looked good as well.  A few nurses came to visit Alicia while Kathy was holding her and they started to talk to her and play peek a boo and believe it or not Alicia made the biggest smile, we all cheered and of course mommy and a few nurses shed tears of joy.  This wasn’t the first and last smile there was more through out the weekend.

We will probably move to our own room today or tomorrow.  Today we will be talking with the doctors about the move and her aftercare.  We know many of you would like to come and visit, we will find out today of what the procedures are for allowing visitors at this time and I will update the site in a day or two with these details.

We've Moved

Alicia is finally out of the ICU, we are now in step down (a unit between ICU and a regular room). She is doing better from day to day.  More about this later on today.

Today Alicia finally got her breathing tube out.  She can breathe on her own but her lungs are still wet.  She is working really hard to breathe, it’s almost as if she has to learn to use her lungs again.  Even though she is ex-tubated we can only hear short quiet noises made by her when she tries to cry.  The RT told us that she might take as long as 48-72 hours to get her voice back. In the afternoon our nurse asked Kathy if she would like to hold Alicia, Kathy was so happy and excited that she started to cry.  Kathy says the feeling was as wonderful today as it was when Alicia was first born and put on her chest.  After 5 minutes they (Kathy and Alicia) both started to cry.  They both bonded so strongly. I felt the love beaming from both of them, tomorrow will be my turn to hold Alicia, I have a feeling that I will be as emotional as Kathy was (except the crying part).  Emily will probably be allowed in on Saturday, she is already working on an art project for Alicia, she is so excited, she actually thinks Alicia is coming home on Saturday, its kind of funny to watch Emily get so excited.  I have posted two new pictures of Alicia I took them today during mother daughter bonding time and the other one taken by our nurse of the three of us.  Take a look. (album called. After Transplant)

K & M

48 Hours Post OP

WOW, What a difference, 48 hours post OP after the Berlin Heart Alicia looked very puffy, had a high temperature and was on muscle relaxant for approx 4 days.  Today, 48 hours after a heart transplant she is not puffy, her temperature is normal and she if off muscle relaxant meds and now they are even thinking of taking her off the ventilator in a day or two J.  Alicia is getting better quickly, her blood work is starting to look good as well. If her condition continues to imporve at this rate we might move out of the ICU in a week.  As I mentioned in an earlier post, Alicia showed rhythm changes (for all of Kathys nurse friends we are referring to ST elevation) these changes are still there and still we don’t know the reason for them, but at this moment the doctors are not overly concerned.

Today marks a full month that she is in the ICU and two months since many of you (our friends and family) have seen her.  As soon as she is of the ventilator we will be able to hold her and finally hear the “Silent Cry”, this will be such an emotional time for us.

Thank you all for your prayers during Alicia’s operation and wait to find a heart, as you can see God did hear us all.

Mirek and Kathy

12 Hours after transplant

The Transplant went smoothly, it lasted 2 hours shorter than we thought.  The doctors were having a rough time to take the Berlin Heart out but they managed.  When Alicia came back to the ICU she once again had many tubes hooked up to her, mainly IV lines and chest tubes (draining tubes).  The doctors were happy with the way Alicia accepted the new heart.  We were told that the heart which she received was from an older child as it is bigger than her original heart.  12 hours after transplant things began to change in regards to the heart.  The hearts rhythm waves began to change.  An X-Ray of the chest and an ECHO (A form of ultrasound) was done.  The results showed that either there is some tissue irritation around the heart or a very small sign of rejection (which we hope it's not).  At the moment she is also receiving 3 different types of Immunosuppressant Medications. Other than the above problem everything else seems to be fine, she gets blood work and other tests done every hour, really keeping her nurses busy.  Even though she is receiving muscle relaxant and sedation medications she seems to be very sensitive, she reacts to even the smallest touches and loud voices.  I just think she just wants to get up and come home to play with Emily.  I will end here and write another update tomorrow explaining how she feels 24 hours after the transplant.

Mirek

WE HAVE A HEART

We Have a Heart !!!

We received the call this morning at 5:00am that a heart became available for Alicia. It is now 12:00noon the heart has arrived and the operation has began.  We ask that out of the Goodnes of your heart you say a little prayer for Alicia.  Please pray that the operation will go as planned and that her little body accepts this new heart.  Just a quick FYI, the heart is the same blood type as Alicias own heart :)  I will write a quick update this evening from home.  The operation is estimated to last till 8pm.

Mirek and Kasia

Not the best of days

Yesterday, Wednesday, Alicia had a small procedure done, she had a PICC line inserted (a long thin line, I call it a tube, put in through a vain in the arm and ending just above the heart).  The purpose of this line is to be able to give her more medications through an IV.  She currently has 12 IV’s hooked up to her in different places.  I think this procedure caused so much stress on her that unfortunately she had 2 extremely long seizures one lasting for 3 minutes and the other for 5.  The doctors immediately did an ultrasound on her head to see if there is any bleeding and thank God that there was no bleeding They will repeat the ultrasound again today to make sure that everything is OK.  These were unexplained seizures, nothing before the procedure indicated that she might have one.

Hopefully they will never come again.  This week she also started to tolerate her feeds better, but that too had to be stopped yesterday as she developed a bleeding in her stomach.  I hope the bleeding goes away quickly, she needs her food and nutrition as she needs to grow.  She hasn’t gained any weight or grown anything for the past two months.

Boy!!! It wasn’t a good day at all yesterday.  Why?

We aren’t having an easy time with Emily either.  Our constant visits to the hospital are taking a toll on her as well.  Unfortunately we can’t take her to the hospital as she is too young and during our visits she has to stay at different people’s houses.  She misses us a lot and even though she doesn’t show it during the day her stress and frustration comes out at night.  She doesn’t sleep well, she goes to the bathroom often at night and constantly scratches her hands as she says they are itching her.  As never before, she also asks us if we love her.  We have decided to spend more time with her and coordinate our hospital visits to very early mornings or late evenings.  Emily is extremely smart though she surprises us with some of the comments she makes and even though she doesn’t like us leaving her alone with others, she seems to understand that we need to visit Alicia often.  Many times when we leave for the hospital she finds any toy that’s lying around the house and tells us that we must take this for Alicia as she is all alone.

I will end my post on that note today and will update you tomorrow as to the results of Alicia’s second head ultrasound and CT Scan

Mirek and Kasia

The Silent Cry

It was kind of an emotional day today.  Some of Alicia's medication dosages are being decreased (which is a good thing).  One of them is Morphine (pain and sedation medication)  By decreasing Morphine Alicia is able to be more alert.  She is moving her arms, kicking her legs, opening her eyes and trying to pull all sorts of tubes and lines out (this isn't making the nurses happy so from time to time they still have to sedate her but only a little bit).  It is fun to watch her being so active. She still probably doesn't recognize us by looking at us but I am sure she recognizes our voices.  Today, for the first time in three weeks, we saw Alicia cry.  We couldn't hear her and she wasn't making any sounds because she still has a breathing tube inserted which blocks her vocal chords.  It was so sad to see Alicia make crying faces and not being able to hear her voice or not being able to hold her and comfort her.  Believe it or not Ala is still fighting a fever, her temperature jumps from 36.6C to 39C, I think it is starting to puzzle the doctors of why this is happening.  Some say that Alicia's body is fighting with the artificial heart, her body knows that it is a foreign object and it's fighting with it. We were assured today that she is still on the waiting list and if the right heart comes along the transplant will happen.

Today Alicia had visitors from the McGuinty government.  The hospital coordinated this visit to show the government how a device like the Berlin Heart can prolong a patients life.  The purpose of this visit was to ask the government to support the Berlin Heart and to allow for some funding for it.  At the present moment there is no funding for this type of treatment and the hospital paid for everything from its foundation.

I have posted a few pictures of the Pilgrimage.  Most of them are of Emily and Monika as Kathy was the one taking the pictures.  I still don't know how they managed to make it all week in the 35C weather.  I think that is one of the Miracles of the pilgrimage, it makes you stronger not only mentally but physically. 

Kathy made a few comments on the pictures.

Till next post.......   Mirek and the girls.

They MADE IT!!!

My pilgrims are back!!! and they are feeling and looking great.  It was a very spiritual week.  Just like others, Kasia was able to share her story with the whole group (approx 150 people).  Everyday the group said the rosary and dedicated their prayers for different causes.  On Wednesday (the day that Alicia had a chance to receive a new heart) Kasia along with the group prayed for three intentions. One, to thank God for showing us that a heart can come, two, they prayed for the soul of the child that lost it’s life and the child’s family that made the decision to donate the heart and three, they prayed for the well being of the child that received the heart which Alicia could not get.  Kasia said that in the morning of that day she was very upset and felt week but after the prayers she felt as though she got a huge dose of energy and hope.  It was their longest walking day (29km) but when they reached the finish line Kasia said that she felt very relaxed and not tired at all. Emily prayed for her little sister as well, she did it in her own way by singing and dancing.  With her dancing and singing she kept everyone well entertained.  She was the youngest most popular and most spoiled pilgrim there.  This was Kasias second pilgrimage she said that everyone should try it at least once.  Maybe next year I will go.

Yesterday (Monday) Alicia’s temperature finally went down to normal it seems that the antibiotics are working.  It also seems that the infection she got was from one of her draining tubes (maybe it was dirty). Her blood work is starting to look good as well.  Today they will be doing a few ultrasounds to see if there is still lots of fluids around her lungs.  She is still receiving muscle relaxant and sedation medication.  When she is awake she seems to be fighting with the breathing machine so they had to sedate her in order for her lungs to work easier.

Tomorrow when I get a chance I will upload some photos from the pilgrimage.

Take care,

Mirek and Kasia

Visitors

Hello everyone.  One of the most popular questions I get is "Can we come and visit Alicia?"  I am very happy that so many want to come to visit her and us.  Alicia loves visitors as she likes to look at new faces.  Unfortunately while in the ICU she can't have visitors do to the fact that there are other sick kids in the same room and the spread of infection is very easy.  Most of the kids in that particular room have open wounds and the staff there is very cautions of who comes and goes. 

Today Alicia was very awake, she was moving her hands up and down and trying to pull out the tubes that she's connected to.  The nurses though that she is a bit to awake and had to give her some medications to calm her down.  That's Alicia for you, she just wants to get out of bed.  She still has a fever of 38.5C and she is getting antibiotics to control that.   

My three pilgrims (Emily, Kasia and Monika) are doing great, I am surprised that Emily is taking this so well, I thought that we will have to go and pick her up on the second day but no, she is as tough as her mother and cousin.  Friday they will walk 24km and Saturday only 9km.  I think after this long week of walking they will be ready to go on any expedition with Krzysiu and Asia P. :) 

Close but not close enough

WOW! What a day we had.  At 6:15am the phone rang and it was Alicia’s Doctor giving me the good news that a donor heart has become available.  I was told not to rush as the heart is far (probably in the US) and our surgeon has to go and get it.  I didn’t know what to do at this time whether to get up and shower or go back to sleep as this might be just a dream so I just stood there looking out the window.  After a few minutes I started to call the family to inform them of the good news.  After about 45 minutes I went to my computer to update Alicia’s website with the good news and the phone rang again.  Again it was Alicia’s doctor but this time he told me that Alicia has had a fever of 38.9C since 4am and he does not think that a heart transplant will be the best thing for her at this time and that they will inform Trillium Health to make this heart available for someone else.  I informed Kasia right away and as you can predict we were both very devastated.  The reason the doctors did not want to do the transplant was the fact that she had a fever and they did not know what caused the fever, whether it was an infection or something else.  If they would have transplanted, her body would not be able to fight with a new heart and an infection.  Alicia must be in perfect condition in order to receive a heart and the doctors want only the best for her.  I think it was Alicia’s way of saying that she is not ready for a heart yet and that’s fine as we will just keep on waiting.  It’s a never ending roller coaster of emotions though.  I came to the hospital to see her and there she was laying next to her two teddy bears with a bag of ice on her head to lover the fever.  I told her what had happened, but she didn’t seem too worried so I told her "since you're not worried than I want worry as much eather" and I went to work.  We’ll just keep on waiting, God knows what he is doing, right?

Mirek

The Strength of a Pilgrim

Today, Kathy Emily and Monica (My cousin) started a walking pilgrimage to Midland Ontario (You can also call it a retreat).  It will be a week filled with prayers singing and of course walking.  They will walk approx. 25km every day and should arrive in Midland at Martyrs Shrine on friday evening.  Those who have been on a walking pilgrimage will agree with me that they are very powerful and in a way they change you and your way of thinking.  The girls main intention will be to pray for the well being of Alicia but they will also thank God for the wonderful supportive friends and family members who are constantly by our side.  Kasia Ema and Monika I wish you girls lots of strength during the next week and don't worry about me as I got some good cabbage rolls and pierogies in the fridge.  :) 

Alicia ... Our dear Alicia, Alicia's condition is stable, she is still sedated and is receiving muscle relaxants and other medication to relieve her of any pain.  Her artificial heart is working fine, the doctors are still fine-tuning it.  She is receiving many blood transfusions still.  I now understand why people have to donate blood and one day when the needle will not be as painful I will donate too.  Today she needed another chest tube to be inserted into her little body as the fluids were not draining the way the doctors wanted them through the original chest tube.  Poor thing, she has so many holes in her body.  Yesterday (when she was off muscle relaxant meds) she opened her eyes and started to squeeze our hand.  That was a good feeling, although she probably did not recognize us (do to heavy meds) it was still a wonderful feeling for us.

Take Care -----  Mirek