Alicia's story

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.