2011-05-25

It was very bad yesterday. Since morning  I had a lot of falls and very weak saturation, about 50%. Later, when my parents went for a dinner, they had to do a massage of my heart because it slowed and didn’t want to accelerate. But only massage didn’t help – I was given adrenaline and other medicines. My doctor repeated my parents few times that one day they may not be able to rescue me. Unfortunately, doctors like to pass bad information about me. At least then they think they know something about me… Luckily today it was much better. Without falls, saturation about 90%. In gasometry I had the lowest level of carbon dioxide in my history – 39 mmHg. The nurse was very nice today too and content with me. Yesterday because of my poor health I wasn’t given milk, but today I eat almost normally. Tomorrow I will have ophthalmologic examination and echocardiography. Because nobody knows how to help me soon I am going back to Gdansk. Ward head from Gdansk is looking for a place for me… I hope there will be doctors, that will not be prejudiced of me and will be trying to help me to breath without respirator… Yesterday also rehabilitation therapist visited me. She said she sees no physical changes or deformations and showed my parents how to work carefully with me at this stage. She also said that she knows a neurosurgeon who thinks that corpus callosum (which I don’t have) is an out of date part which has no use for us. Let’s hope that it will be true in my case…

2011-05-23

I weigh 2500g. I am very active today, but I don’t have big falls of saturation. For the first time since we came to Lodz my daddy was hugging me. At times I slept and at times tossed and turned a little bit. State of my health is still without changes…

2011-05-22 – A few words from parents

Our site is visited by almost 1000 people a day. It is known not only in Poland but also in Germany, England, Spain, USA, Austria, Ireland, Belgium, Norway and many other. We thank all of you for making our website popular, for your prayer, good word  and financial support. We are very grateful for all happenings that were done for Mary. We thank you for beautiful paintings and for searching for a place for us in Lodz.

Your faith in Mary gives us strength. At the moment we are looking for a way and people that will be able to help Mary’s lungs. More often we hear the term “Home Hospice” Our daughter’s doctor say that problem with lungs may last for a very long time and she should go home with respirator. They don’t give her any chances. We spoke to a nice nurse today that unfortunately we didn’t find a child with similar problems as our little Mary has. The doctors either. Children with heart defects is 1% of all births, prematurely born is 10%, CNS defects is also a small percentage. Mary has a rare luck. The nurse said that we didn’t found a similar child because they simply die.

In 25 week of pregnancy, when we were informed that Mary is very ill, the doctors said that such a child must be born in term in order to survive. But some also said that we came to late (abortion in Poland is legal up to 24 week)… We started to look for an information about heart defect not knowing that we will have a premature child also. But Mary lives despite of medical diagnosis, she has a great will of life and strength to fight…

2011-05-22

Today passed peacefully. I didn’t have great falls of saturation. Parameters of respirator were a bit lower. Mammy was hugging me. Every time I couldn’t calm down my parents turned on a playing heart from aunt Margarita, to which melody I love to listen ;)

2011-05-21

After two weeks of my stay in Lodz state of my health didn’t improve… Today it’s a bit better, but respirator parameters are still terrifying. I had a lot of examinations. The worst was inserting of a needle into the spine in order to check the cerebrospinal fluid. Luckily, the result is correct. I am still not feeling myself due to sedatives. In the afternoon I had blood transfusion, because I had poor results. Let’s hope that after that I will feel better, my saturation and gasometry will improve and that they will be decreasing parameters of respirator… My parents asked about the sedatives which cause problems with breathing. Unfortunately, my doctor said that all these medicines cause such problems, but in my state they are indispensable. They try not to give me the worst of them unless in such situations as yesterday. For one thing they help, for another they are harmful…

2011-05-20

What an horrible day… Since morning I had falls of saturation. Doctors had to do a heart massage because my little heart slowed, what is very dangerous. I couldn’t recover at very high respirator parameters. I was given a lot of medicines for heart and lungs. My doctor said that a day may come when they won’t be able to rescue me. All day I wasn’t fine. I was given a lot of sedatives. I looked very bad. My mum read has that some of my medicines causes difficulties in breathing and apneas, so why I receive it??? In the evening I had better saturation but the numbers on respirator were still high (100% of Oxygen, 70 breaths, pressure – 30). I wonder if they will make them lower soon? Will they give me a chance to breathe. Here, in Lodz, they don’t know how to help my lungs, so I could breathe on my own. I think we must look for a specialist who treats lungs of  children mechanically ventilated for a long time.

Will I ever breathe on my own? Will I be able to wear dresses and play like other children? Eat normally, not by a catheter? Now I cannot even move because as I do that saturation decreases. This is why they give me this stupid sedating drugs all the time.

2011-05-19

We are together again. Mammy and daddy came about noon. I am very happy. I weigh 2400 g. Unfortunately I have been weak for last two day. I’ve got low saturation and a lot of falls. Nobody knows how to help my lungs. Every day they repeat the chances are low that I will start to breathe without respirator. We are very worried…