Luukas' story

Winter 2007/2008 and spring 2008

2008-05-29T00:54:00.000-07:00

Luukas will turn two tomorrow (30 May), so it's time to update his blog :)

We have been fighting against epilepsy, but without real success. Although it seemed in winter that things were getting better, in the end the change in medication that had been taking place from November to April did not lead to improvement. Actually Luukas' seizures happen now more often (up to 10 times per day). We are now changing the medications again. This time it is possible that a side effect will be for Luukas to lose his appetite. This is a bit worrying. So far we've been so happy that, unlike many handicapped children, Luukas has had no problems with eating.

Luukas sits better, finds his balance better and in some extent uses his hands –mostly in the front line - to protect himself from falling down, holds his head better, chews and bites food better, more or less drinks from a cup, holds his bottle while drinking from it. Turns to his back from the sides and from the sides to the back. There is still much problem with turning from the belly, but we are still working on it. When we make and help him do it, he is able to hold himself on his hands for a moment, as well as to stand by himself without support for a moment. In some extent, and with our help, he is able to bend and straighten his knees.

Luukas is a happy little man, who likes to shout and scream and laugh at his own voice, as well as when we say "funny" things to him. He is starting to communicate with his shouting with us, and it is a fun game :)

In the middle of our problems there are many blessings. God willing, at the beginning of autumn Luukas will have a baby sister :) A huge blessing is Ania who is now living with us and exercises with Luukas every morning. She is such a help! God bless you, Ania :) The fact that Luukas' epilepsy is being taken care of by the greatest Finnish specialist in infantile spasms, and that Luukas' ophtamologist is also a very educated and skilled lady, are also our blessings. Or the fact that we have such nice and helpful people as Luukas' neurologist, physical therapist, and now also a speech therapist. And of course our friends, both IRL and on-line, who've been praying for Luukas and helping. Thank you very much!

Update

2007-12-17T01:02:00.001-08:00

The movementa are indeed epilepsy. It happens several times per day, after Luukas has woken up.

Summer 2007

2007-10-10T12:34:00.000-07:00

Another EEG, taken in July, showed no epileptic attacks, although we can't be sure whether attacks do occur. Especially that, upon waking up, Luukas' head and eyes make some involuntary movements. A Polish doctor warned us against Lukas' shutting from the world, so we've been helping Lukas to pay attention to people. Luukas has been the happiest ever in recent months, he laughs more, shouts happily and is lively. He turns from his sides to his back (it seems that he prefers to lie on his back) and is able to grab his feet without us helping him. He takes a look at people's faces sometimes and grabs toys. He sits better (still needs help) but his physiotherapist is certain that he will sit by himself. Luukas has started to chew and bite food, and he claps his hands and claps them a lot :) He loves water, he enjoys our Saturday morning swimming and sauna very much. Luukas walks in shallow water when we are holding him, but due to his CP he walks on his toes.

Someone has written a comment that only science will help Luukas. Well, science, yes, but not only. See the posts below :) Oh, and we ARE using scientific methods to help Luukas.

To all those who pray. Please continue. Thank you!

Spring 2007

2007-04-02T04:02:00.000-07:00

Luukas went to Lourdes at the end of February. A few hours after we came back they called us from the hospital to tell us that there is a place for a video EEG for him, as someone had resigned. They found out that Luukas' uncontrolled movements is indeed epilepsy. It could slow down his development even more. Well, it wasn't good news, but we started treatment a couple months before Luukas' planned video-EEG. Luukas got livelier now and his attacks got smaller, but we could still see what looked like attacks.

Our novena to the 14 Helpers, including St Vitus, the patron of epilepsy, ended on the day preceding his feast. Luukas' another EEG was planned on a June day, but because Luukas had a flu, it was postponed to June 15. We didn't realise first that it was St Vitus' day. The EEG showed epileptic activity, but no attacks. This doesn't necessarily mean that there are no attacks. If they are, they didn't occur at the test. It was a nice surprise! It looks like it is better now than in the previous EEG. :)

Luukas' eyesight has improved. He still sees quite badly but better than before. Luukas is now wearing glasses to help his significant myopia, but his main visual problem are the damaged visual nerves.

Luukas has got special shoes to stand and sit in, a chair and a standing board. This all is meant to help him learn use his muscles and keep his position properly. It doesn't guarantee that his muscles stiffness will go away. Let's see.

Luukas' achievements: he "speaks" more sounds, uses his hands better, holds his back better (sits and stands better when we help him), sometimes he is able to more or less sit by himself for a moment. Luukas feels better and is more flexible while on his tummy, can hold himself on his hands a bit, enjoys our talking to him, concentrates when we play with him, likes to touch his head and toes. Luukas seems to understand his name, mom and dad in Polish and Finnish, and to understand the rules of a couple of games. He starts crying when an interesting activity is suddenly stopped. He reaches out to things more often. He started to turn to his left side again (which he had forgot some time ago).

Winter 2007

2007-02-07T03:01:00.000-08:00

Luukas' EEG is still highly abnormal, with epileptic spikes so he is still getting medicine. We are now changing his baby-medicine to adult-medicine because he is so "big" already. He has never had an attack but he has some little uncontrolled movements.

Luukas has brain damage, but there are also good cells, even in the cortex. So perhaps I should forget the words of an ICU neurologist in June: "terrible, terrible damage". The lower parts of the brain, the better. Luukas' cerebellum is almost completely untouched, while in June they told us it was squeezed by the swelling in his brain.

Funny thing is that Luukas has much damage in the hearing area of his brain, but his hearing is normal. His eyesight is progressing, although it is still far from perfect, and the vision part of Luukas' brain is not very bad, so in time he might see better and better.

Luukas' current neurologist says she can't say how he will develop, but he will be developing. :)

Thank you and please continue to pray for Luukas.

Summer and autumn 2006

2006-12-14T12:35:00.000-08:00

Luukas had breathing problems after his GBS disease. At the beginning of August he was in hospital for a week due to bronchiolitis. After that his breathing changed for better. We have a machine for inhalation that we use when Luukas has some breathing difficulties caused by viruses. We and our friends have been praying for Luukas' breathing and health, especially that doctors have been warning us about his higher risks for infections. The machine has not been used since mid-October, thank God.

Luukas' new EEG, run in September, was highly abnormal, but it was so much better than the June "nothing at all". The doctor cannot say what it will be like in the future.

In October Luukas had his brain tested for hearing and seeing. The former was fine while the latter showed no reaction. We had noticed he must have a problem with his vision but we did not expect the test turning out that bad. From 4 to 12 December we and our friends (thank you!) prayed a novena to St Lucy, the patroness of people with seeing difficulties, that Luukas can see. On 13 December, i.e. on St Lucy's day, Luukas had an appointment in the Helsinki eye clinic where he reacted to visual stimuli better than ever before. It is obvious now that Luukas sees, although his vision is far from perfect. 13 December is also the day of St Odile who was born blind and recovered her vision at the moment of her baptism.

Luukas' achievements: he "speaks", "sings", enjoys music, enjoys bright objects and black-and-white stripes, smiles, laughes, explores surfaces with his hands, is starting to reach out his hands to things, is beginning to turn, as well as sits and stands for a while holding our fingers.

And don't tell us there is no God or that He does not care.

2006-09-13T05:35:00.000-07:00

THE STORY OF LUUKAS' SICKNESS AND WONDERFUL RECOVERY

Luukas was born a healthy boy on 30 May, 2006, and his test for GBS showed negative. A week later, on 6 June, he fell sick and it turned out his GBS test was wrong: he did have the awful bacteria. From the ER he was transfered directly to the intensive care unit in the Helsinki Children's Hospital.

Before I noticed Luukas' sickness, I read a little fragment from the New Testament, just for me to read, and by a random choice I opened the story of a man coming to Jesus to ask Him to heal his son: "Please come before my son dies". Several hours later that very story comforted Juho and I started to use the same words to pray for Luukas' recovery.

In the ICU

Luukas was baptised by our friend, Father Manuel, on the mornibg of 7 June, with only myself, my mother-in-law, and a couple nurses present at the moment of the sacrament. Juho was on his way back from his business trip and came to the hospital a couple of hours later. They told us that the first 24 hours of the sickness were the most risky, so we were a bit relaxed when Luukas had survived through them.

In the meantime, our friends, internet friends, several convents and family were praying for Luukas and asking others to pray. Friends-priests celebrated Holy Masses for Luukas, and other people ordered Masses, too. In the time of Luukas' illness there had been hundreds or more people involved in the prayer. (Thank you!) Two our friends, Sister Marianna of the Missionairies of Charity and Slavo, independantly from each other, opened the New Testament for Luukas and saw the story about the woman begging Jesus to heal her daughter. The woman insisted and the daughter was healed. It was interesting also that Luukas' great-grandmother who has the Alzheimer's disease, talks little and in an unclear way and no one knows how much she understands, suddenly became more talkative and said "fight, fight".

On the couple days after June 6, the doctors told us Luukas had very high inflammation ratios, but he seemed to have more and more chances to survive. His brain condition was not known, as the bacteria were active there, making Luukas shake. He was put to morphine sleep to limit the possible brain damage.

June 10 was a bad day. Luukas' kidneys were said to perhaps stop working and his heart condition worsened. The doctor said he would probably die. Juho put a picture of Jesus the Merciful on Luukas' pillow and our friend Sister Marianna from the Missionairies of Charity started a novena to John Paul II. When we came on the next day, Luukas' kidneys worked.

Luukas had been put to sleep and put on a ventilator and when the bacteria were slowly beaten by antibiotics, the question appeared whether Luukas will wake up and whether he will be able to breathe by himself. From then on we were happy to see any sign of Luukas' activity (like little movements of eyelids, of hands and feet) and were watching the monitor of his breathing machine for whether and how much it was showing Luukas' own breathing. One day, when the machine was showing mostly its own work and hardly any breathing of Luukas, Juho put the picture of Jesus the Merciful on Luukas' forehead and more or less at that moment Luukas breathed by himself.

Luukas' first EEG showed reaction to pain and touch, and his magnetic brain scan showed huge changes. On 14 June they told us he would be disabled both as regards movements and mind, and the plan was that on June 15 Luukas was to be taken off the respirator, after another EEG had been run. He breathed more and more by himself and the June 14 forecast was that he would survive. The next day we came to see Luukas still on the respirator, a nurse explaining to us that the doctors were waiting for us to put him off the machine "just in case". Luukas' hand- and footprints, as well as some of his hair cut were waiting for us and someone was taking a couple of pictures of him, pretending(?) not to hear my question why. The doctors came to check Luukas (Juho saw he reacted to a sound) and told us to come with them to another room.

There were four of them standing in front of us. A pediatrician, an anesthetist, a neurologist, and a doctor on evening duty. The neurologist says, You know Luukas' first eeg was bad. Well, the latest one is even worse. A flat line. He will never learn anything, he will never communicate. And the pediatrician says, his lungs are full of phlegm and he will not get rid of it because he is too weak and doesn't cough. He will not survive.

Luukas was supposed to be taken off the respirator and we were asked to come back to the ICU when we are ready for that. We were warned that it was probable that Luukas would die within hours and we were given a chance to be then with him. We went out and called Father Manuel. He came and we chose a prayer that he said right befor the nurses turned the breathing machine off. The prayer was also for Luukas' healing, which at that time seemed close to impossible (completely impossible to the doctors, "close to impossible" in the eyes of faith).

The machine was shut off, Luukas was given to us so we could hold him and watch him pass away. He struggled while breathing and sometimes stopped breathing but it was never the end of his earthly life. He had a tube with oxygen run to his nose. All of a sudden Slavo came. We told the nurses to let him in. He brought oil of a certain saint from the Orthodox church and put some on Luukas' forehead. Luukas coughed.

The night passed, Luukas being alive, and they did not want to keep us in the ICU any more. They needed the room for other patients, so they sent us to another ward in the same hospital. It was the infection ward and the doctors told the nurses there that our son would not make it until the next day or two days ahead.

Infection Ward

We got a room only for ourselves, as we were such a unique case. They measured Luukas' heartbeat and oxygen with a machine. I still had milk so I pumped it in the hospital's pumping room where I would send SMSes to our believing friends searching for hope. Sister Marianna and Slavo were the most optimistic. Slavo was telling us the doctors are not gods, and that seemed a bit too optimistic at that time. Slavo sent me a message that he contemplated Luukas' story at his prayer and read the story about Lazarus. They had to wait four days for Jesus to come and make a miracle. We were waiting (or rather hoping) for a miracle for our son. Otherwise the time spent in the pumping room was awful, with magazines on the table showing pictures of babies and stories like "how happy I was when I could hold my baby after his operation".

Looking into Luukas' eyes, one could say he was clearly unconscious, as the doctors had said. Some things about him made me question that opinion a bit, especially his first bath in the ward, when his eyes looked lively and the baby clearly enjoyed his time in the water.

We had several guests while we were in the Infection Ward. I would like to particularly mention the Sisters of Charity. When Sister Marianna hugged me when I was crying, it felt like I was receiving a hug from Jesus. There was also a wonderful Lady from the Lutheran Church, Pirkko, with a gift of healing, whom we had never met before, but who had heard about Luukas and came to pray at his bed. All other children at hospitals had toys on their beds. Luukas had a picture of Jesus the Merciful and, as the time passed, other religious pictures and subjects.

One day the nurse called us when we were out for lunch to tell us Luukas' heartbeat had got very low and he could be dying. We went back to him and when we came he was better. Once or twice Luukas seemed to have signs of pneumonia, too, but always his temperature returned back to normal. Unlike the doctors predicted, Luukas lived through another week and again they did not know what to do with us, as they needed room for children with infections in the infection ward. We were to be transferred to another hospital.

On 22 June another group of doctors came to check Luukas and at that time they were of the opinion that Luukas could live longer than they had thought, perhaps even years, but they kept the rest of their predictions regarding his physical and mental health. Luukas was given a DNR decision, according to which he was not to be treated if he got severe infections and would not be sent to the ICU any more. Having said all that, they transferred us to the hospital where Luukas had been born (Kätilöopisto). By then my parents and my brother had come from Poland to join us.

Kätilöopisto

Juho and my family went shopping for food and to our home, while I stayed at the hospital with Luukas. The doctor there greeted me with more or less the same words about Luukas' health as written above. Meanwhile, our friends were still praying, and one specific prayer was for Luukas to learn to suck again. Everyday we went home for lunch and I asked our friends from a Catholic discussion board for contact to priests with a gift of healing. I managed to contact a couple of such priests and a nun who prayed for Luukas.

Luukas was still tubefed but one day we tried to give him milk from the bottle. He did suck! Not much, we had to finish feeding through his tube, but yet he did eat by himself. From then on, we first fed the boy with a bottle and finished through the tube. Luukas was also moving more and more. In the mornings he cried, perhaps from hunger, so the doctor allowed the nurses to give him more milk, although at first she reduced his feeding schedule due to his heart condition. I had doubts on Luukas being unconscious after he changed his behaviour as in response to what was going on with him: He cried from hunger, so I tried to breastfeed him but he couldn't do that so he cried even more, and still more after he coughed.

After a week in Kätilöopisto the doctor checked Luukas and, to my positive surprise, said that his heart and liver were better. Not completely well, but better. She seemed surprised when we told her that Luukas moved more. On that day we took Luukas home for a week holiday from the hospital. He got stronger every day and started to eat enough by himself, so the tube was not needed any more. They took it off when we came to the hospital after Luukas' holiday. By then his liver and heart were fine and the doctor wrote quite a positive statement about Luukas' health. Everyone was very happy to see Luukas change so much. The three of us went home.

God knows better

Another prayer answered. Although the doctors have warned us that Luukas might have strong epilepsy, he has never had a single attack (data as of end-November 2006).

Doctors cannot know for sure if someone will die or will be unconscious until the end of his life. I am against DNR in cases like Luukas was. Thank you, ICU doctors, for saving the life of our son. Luukas survived his disease. Luukas is conscious. (We had doubts about him being unconscious until we saw his clear reaction to sounds. Then we knew he was aware). Luukas does not have DNR decision any more. He should not have had it at all.