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…

2011-05-17

A day without parents. Dad twice phoned today to the hospital in order to ask how I am doing. I have falls of saturation, but in general I feel similarly as during last few days. Doctor said that I have less falls than yesterday. I wait for my parents, only tomorrow left…

2011-05-16

Today my parents had a lot of serious conversations with cardiologists and cardiac surgeons. All of them agree that at this stage of my life surgery intervention is not needed. These are good news. It occurred that my heart defect developed in a specific way, instead of pulmonary artery I have 7 or 8 little vessels coming out from aorta which supply lungs with enough blood. However, I must be under observation whether with my growth the vessels will grow proportionately. If not, my skin will get a blue or purple coloration (Cyanosis). Maybe in 2 or 3 months I will have another angiography in order to check it. It has also been confirmed that I don’t breath on my own only because my lungs are in a very bad condition. But the lungs won’t improve if respirator parameters will be still so high. And they cannot be decreased because I am not able to breathe efficiently. A vicious circle… But my parents don’t lose their hope. Professor said that the chances are low but still are.

My parents had to go to Gdansk in the evening. I am very sad. Before they went mammy was hugging me for a long while. I look forward to their coming back.

2011-05-15

I must say I grow very quickly, because I already weigh 2300 g. I behaved very well today. I slept all day. When I was starting to wake up and moving my parents laid hand on me and I slept again. Falls of saturation I had only when a nappy had to be changed or cleaning of the endotracheal tube had to be done. Sunday went very peacefully.