News
1st of January 2020
Happy New Year Everyone!
Here are a few recent pictures and donation details if you wish to support Alicja:
To make a donation click one of the below "Donate" or GoFundMe button:
20th of April 2019
Alicja will turn 10 years old on the 28th of April :-)
Offer a BIRTHDAY GIFT to her by clicking one of the below "Donate" or GoFundMe button:
Dear Friends,
Alicja will turn 10 years old in just a few days and she will become a teenager :-) In fact, even if she isn’t independent, emotionally she isn’t a child anymore. She is slowly becoming a beautiful young girl ;)
It’s hard to believe that she has been with us for so long already. It’s been 10 years since our world fell apart as our longed-for first baby was born very sick and doctors suspected that she would be totally incapacitated with very limited contact with the world…
Thankfully, not all these dark scenarios became facts. Once the first difficult months have passed, we have realized that, with lots of hard work and therapy, Alicja can reach her milestones even if that would take much longer than for any other child. We kept fighting for her and have managed to achieve goals that, according to most doctors were impossible. We have taken her for a year-long leg treatment to the USA to save it from amputation and to allow her to stand on her own feet and walk. Alicja was also treated in Italy and then Turkey as that was the only way to enable her to hear and understand speech. Those of you who have been following our story know how difficult our journey was, how much fundraising, strength and determination it required.
Even if most of our little girl’s life has been spent on treatment, we have eventually managed to introduce some normal to our family life: Alicja has the best in the world, 3-years old sister Nadia and, around her 10th Birthday, she will become a big sister for the second time :-)
Unfortunately, even though we have won many battles, the fight for our daughter’s health and wellbeing is not over. In fact, we are aware that is will never end, that Alicja’s life and our lives will always be very difficult and full of challenges… For example, this year, we have learned that Alicja’s vision, always extremely poor, was drastically deteriorating. We don’t know yet, whether there is any treatment for that problem but we are once again extremely worried for our daughter’s future as she may face total blindness… Additionally, there is unfortunately a possibility that Alicja’s reconstructed leg will require more surgeries that we will need to pay out of our own pocket… On top of all that, our girl still did not fully recover after the difficult experiences of last year: two surgeries as well as severe issues with gastrostomy and feeding. Alicja became sad, tearful and deprived of energy. We really hope that two therapy camps that we have planned for Alicja this summer will help her to finally regain her physical and emotional strength.
As Alicja’s 10th birthday approaches, we don’t have bigger dream but for her to be the healthiest and the happiest possible! This, apart from a lot of work and determination, also requires a lot of money. Please donate to offer Alicja a present for her 10th birthday.
You can donate towards Alicja's treatment via PayPal (by clicking "Donate" button below) or via our still open fundraiser at GoFundMe (by clicking the picture below):
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31st of December 2015
Happy New Year Everyone!:)
7th of November 2015
Alicja became a big sister. Here is a picture of her meeting her sister Nadia for the first time :)
The 26th of July - 8th of August 2015 - The Eating School in Holland
From the 26th of July - 8th of August, we participated in the Eating School in Holland which was organized as part of the No Tube program by doctors from the University Hospital in Graz (Austria). It was a very emotional time; from happiness and hopes, to huge stress, disappointment and fear about the future.
Today, a few days after our return home, Alicja is slowly recovering from an acute bacterial infection that she got while we were at the Eating School. We keep asking ourselves questions that we are unable to answer: was it worth it to go to Holland? Did Alicja get sick because of oral feeding? Did we just throw money down the drain (almost 10 thousand Euros!) and the most important question that we have been asking ourselves for the last 6 years: Is she ever going to learn to eat orally?!
Why did we decide to participate in the Eating School?
Alicja has been tube fed since birth. There were many reasons for that: she wasn’t able to drink from either a bottle or the breast when she was born, she had a huge amount of secretions in her mouth so she had to be suctioned all the time, she had a heart condition (that was fixed when she was 3 weeks old), our neonatologist suggested that she may aspirate food to her lungs and finally she had CHARGE syndrome, a condition where doctors routinely advise feeding tubes for babies. Even if there are many children with this syndrome who eventually learn how to eat, specialists never gave us much hope that this will happen in Alicja’s case.
As we didn’t want to believe this prognosis without giving our baby a chance, we started to try to feed her orally when she was one year old (with pureed soups and baby food). It wasn’t easy. Alicja cried, coughed, spat out and, on top of that, food was coming out of her nose. Why out of her nose? She didn’t have any cleft palate diagnosed! There was no specialist who could explain it. However, in spite of all these problems, Alicja improved her eating and she was able to eat orally one meal a day. She started loving food!
Unfortunately, we finally took Alicja for a video fluoroscopy test that dashed our hopes: it showed that some food went down into her lungs. Our speech & language therapist advised us that oral feeding may eventually destroy Alicja’s lungs. She judged that oral feeding is never going to be safe for our little girl…
Even though we didn’t agree with her opinion and never gave up hope, we had to take a break from oral feeding. We had too many crucial surgeries on the way so we couldn’t take a risk. Only when Alicja turned 5 and we came back from her leg reconstruction in the USA, we decided to try once again.
We believe learning how to eat is very important for Alicja. It is not only about pleasure and hunger. It exercises all facial muscles and has crucial influence on manual ability and speech development. Alicja doesn’t eat and she doesn’t speak so her facial muscles are not trained at all. We also have the impression that not eating is the main reason why she has a huge amount of secretions coming out of her mouth and nose. It is possible that she just forgets to swallow her saliva as she doesn’t have to swallow any food. Our hope would be that the amount of secretion considerably decreases when she starts eating.
We started offering Alicja pureed food once again. Unfortunately, she didn’t really want to take anything into her mouth. She accepted only a maximum of a few baby spoons per day. This wasn’t very surprising to us though: we always knew that most children who never ate had food phobia. Some of these children never learned how to eat even though they were physically able to do so.
However, Alicja was able to take these few baby spoons a day. We realized that she stopped coughing during feeding and almost nothing was coming out of her nose. On top of that, we thought that she swallowed her saliva better for a couple of hours after each feed. Did something change and Alicja stopped aspirating food to her lungs? Would she be able to learn how to eat now as her overall condition has improved? And, if she can eat, will she want to do so?
We contacted Prof. Dunitz-Sheer from University Hospital in Graz (Austria) who, together with her husband, established the No-Tube program many years ago. She is well known in the world as a specialist who teaches tube fed children how to eat orally. BBC even produced a documentary about her work.
We made a few video shots showing Alicja during oral feeding and sent them to her. She replied saying that she is convinced Alicja can eat!!! There was only one condition: we had to check whether she stopped aspirating food to her lungs. We decide to go to Graz to have all the required tests done.
We spent one week in the hospital in Graz last February (you can read more about it here). Unfortunately, we were a little bit disappointed as we didn’t get any clear and convincing answers to our questions. Alicja didn’t want to cooperate during the video fluoroscopy test so Prof. Dunitz decided to take a chest X-ray after she took a few spoons of food with contrast. Because there was no evidence of food in her lungs, she told us that Alicja hadn’t aspirated any food. Can we confirm this after just 3-4 baby spoons of food? It didn’t really convince us… However, the doctor was sure: “I have experience and I know that Alicja can eat!” Well, she is the best specialist in this field, isn’t she? Shouldn’t we just trust her opinion?
We also had many other concerns. First of all, Alicja’s saliva and sometimes food was coming out of her nose. Is this not going to cause infections when she eats? In the doctor’s opinion, it was not an issue: “Alicja will just sneeze the food out after every meal, no problem…”
We were also concerned because we knew that most children participating in the No-Tube program only had severe food phobia but no neurological issues. Alicja is different. She has facial palsy on the right side and a floppy larynx and palate. She never ate solids nor drank any liquids. Thanks to us, she doesn’t have a lot of food phobia though. She loves playing with food, tasting soups, gravies and ice cream. Is the Eating School going to be a good place for her? “You shouldn’t worry about it”, said Prof. Dunitz. “We have the best specialists and we treat each child individually. I am certain that you should go to this school”.
We learned that the Eating School took place a few times a year and every time in a different place in Europe. The next one was going to be in Holland in July. It was expensive – 8 thousand Euros for two weeks plus travel and accommodation. However, a one year online after care program was included in the price.
When we came back from Austria, Alicja was still only taking a few spoons per day and we realized that we will probably not be able to make her eat more without help. We thought that, since Prof. Dunitz is well known in the world and she says that our daughter can learn how to eat, we should probably trust her. We decided that we had to take Alicja to the Eating School despite our doubts and the cost. After all we had funds left on her treatment account from previous charity events. Of course, this money may be needed for other treatments in the future but if Alicja can learn to eat orally… Wow! We have to give her a chance!
First week: first success and big hope
The 25th of July
After a long journey we arrived at De Rijp in Holland. Alicja loves travelling and feels extremely happy. She is our very brave little girl :)
Even though the school takes place in a hotel, we decided to rent a cottage in the same town. This will be more comfortable and cheaper. It has two bedrooms (there are 4 of us including Alicja’s grandma) and a kitchen where we can prepare her favorite soups.
We met other families at an opening dinner. There are 20 families from 14 different countries including Estonia, Greece, Sweden, Germany, Holland, France, Costa Rica and USA. It is not the first time we meet people from so many different countries during treatment. It was the same when we went to Italy and then to Florida. We see that there are many children with syndromes who suffer from other medical conditions and not just food phobia. There are even two children with tracheotomy and on oxygen. We feel relieved that we are not the only “difficult case”!
We have an information meeting after dinner. We are informed that we will have three “play picnics” per day, one during everyday meals. On top of that, we will have medical rounds every day, parents groups and workshops as well as individual sessions with a physical therapist or with a psychologist if needed. However, we will not have musical therapy as had been promised as the therapist got sick… We also learned that there is no Speech & Language Therapist on the camp because cooperation with the previous one didn’t work for other team members. All advice on eating and swallowing we will be given by Eva – the physical therapist who has been working for No-tube for many years. It seems quite strange to us: a PT teaches eating?! Well, it is not important who is going to teach Alicja eating as long as she learns it…
The 26th of July
The idea of “play picnics” is to desensitize children and to reduce food phobia. Seeing other children as well as parents and siblings eating is supposed to inspire tube fed children to taste some food as well. The whole family is sitting on the floor on a white sheet full of different snacks and everyone starts eating. The rules are to allow children to do whatever they like with the food; they cannot be punished or criticized for “misbehaving”. A child can pour soup on his/her head, grab a steak from the plate of another child, grab a cup of coffee from his/her mum and spill it around or spread tomato sauce all over himself/herself. Everything is allowed.
We explained to Alicja using sign language that we are at an Eating School. She is very happy to know this as she loves school and loves “eating” (or, rather, playing with food). We don’t have to wait for her to take her turn. She grabs her dad’s fork and gets a cucumber on it; she also puts her fingers to her mum’s soup and licks them. In a second we are all “dipped in soup”. Finally, she catches one of her new friends and takes a lollipop from her hand. Our brave little girl! She loves it! We also could play with food at home but we had limits. There are no limits here.
We are happy that she likes it but it doesn’t change anything. She has played with food for many years but, except for a few drops, the food never went in her mouth. And even if it does, she spits it straight away. Will we finally find a way that food goes to her mouth and then to her stomach? We hope that all these specialists will help us...
The 27th of July
During our first medical round, Prof. Dunitz advises us to reduce Alicja’s tube feeds by half. She has to be hungry; otherwise she won’t take anything to her mouth. We are afraid that she is going to get weak but we know that reducing tube feeds is the most important No-tubes method to encourage children to eat orally. We will try and see if it works…
We also have an appointment that day with the Physical Therapist – Eva. She advises us that we should try feeding Alicja in half-lying position like a new born baby. She is trying to find a solution for her constant spitting of food. She says that Alicja has weak muscle tone and it may be too difficult for her to swallow in an upright position. It sounds very strange to us as all previous SLTs advised an upright position for eating. However, maybe this is a solution for her spitting. We also tell her that Alicja can eat better using a dummy (pacifier) rather than using a spoon. We just dip the dummy in soup and she sucks it and swallows when she is in a good mood. Eva says that this is a good idea and we should continue dummy dips. The most important thing is that Alicja starts eating and we will improve the method later on.
Taking this advice, we start to hold Alicja like a baby during meal times. This is not a comfortable position: she is already 6 years old and weighs almost 17 kilograms (37 pounds). She doesn’t like this position at first. She starts crying, she is hungry and upset. She would like to get some food “normally” via tube. However, after a while she starts taking dummy dipped in pureed food. She doesn’t take much of it but it is not too bad for the beginning.
Grandma is preparing a mixed soup for the next day.
The 28th of July
Alicja is very irritable and she cries a lot in the morning. We need to give her some food via tube as she is getting weaker.
The weather is very rainy and sleepy so we have a little nap after lunch. When we wake up grandma shares great news with us: Alicja ate 100mls of soup from the dummy! It is a miracle!
During mothers’ support group, we all talk about our feelings after the first two days of the school. Most mothers are very stressed and tired because their children are hungry and cry all the time. When it is my turn I tell them that I am very proud of my little girl who took so much food orally today. Some of them seem to be a little jealous as their children didn’t take anything yet. Although other children learn to eat solid foods straight away and also drink fluids from cups, I am very happy that Alicja progresses so quickly compared to other children. Usually, she was always the slowest to learn new things. She is such a brave and amazing little girl! Let’s hope that the food is not going to her lungs…
The 29th of July – 1st of August
Alicja is getting better and better with eating every day! Her tube feed keeps being reduced and the amount of food taken orally increases.
Not everything is perfect though. Eating from the dummy takes a long time, it last nearly the whole day. On top of that she still eats in a half-lying position and doesn’t accept the spoon (we don’t really know why as she used to accept it when she was younger). From time to time she sneezes and spits so all our cloths get dirty after each meal. It is great that we have grandma who warms up the soup and feeds her every 2-3 hours. We would be exhausted. Another problem is that Alicja is only able to eat up to 200mls a day which is barely 25% of her nutritional needs. We cannot really imagine how our everyday life would be if she eats like that. The specialists reassure us. This is only her first week of oral eating in her life; it should be getting better every week.
Prof. Dunitz checks Alicja’s lungs every day: “The lungs are perfect – she says happily – As a matter of fact, they are much better than before. She used to always have this kind of wheezing in her lungs and now these sounds are gone. Tube feeding definitely wasn’t great for her”. We feel relieved and happy every time we hear this.
In fact, it looks like oral feeding fits Alicja better than tube feeding because she started walking long distances, longer than ever before. Additionally, we regularly take her to the swimming pool to reward her for her work. We cannot believe how much energy she has at the moment.
Eva says that Alicja is one of a few children who made such big progress in oral eating and that all the No-tube team is very proud of her. We are delighted to hear this. It looks like our girl is a step ahead of other children for the first time. Our family in Poland is also proud of her. The other grandma who stayed in Poland already starts preparing soups for her. We will have a competition to see which Grandma cooks better, according to Alicja ;)
We have only one problem. Alicja has lost over one kilogram (two pounds). She is also unusually calm and a little bit apathetic. Prof. Dunitz says that her weight loss is not a problem. She was fed too much before and now she has very good weight. Also, she is not apathetic but only more settled as she seemed to be too agitated before…
Second week: it was supposed to get better; it is getting worse and worse…
The 2nd of August
The second week of the Eating School started. During parents’ group, we talk about children’s achievement and about our expectations for the coming week.
Most of the kids started eating; some of them fully stopped tube feeding. Well, it seems that some of them have made much better progress than Alicja…
However, there are also children who got sick and it seems that there is a nasty virus at the school. Staff appeals to use disinfectants at all times. But is it really a virus? Those two little girls who have a tracheotomy got a chest infection and one of them ended up in an intensive care unit in a hospital in Amsterdam. We have always been warned by different specialists that Alicja may aspirate food to her lungs which may cause a chest infection… Even if it’s really none of our business, we ask Prof. Dunitz whether these chest infections could be caused by aspiration. “Food in the lungs? – She answers – not possible! All children were properly tested before they came to the school. None of them aspirate food to their lungs.” I say to myself that if they were as “properly” tested as Alicja was in Graz then maybe they aspirated the food. But, on the other hand, I am extremely happy that my daughter is still healthy. We can be almost certain now that food is not going to her lungs!
Our goals for next week would be to teach Alicja to eat faster and more efficiently before we go back home. We cannot imagine having to feed her every 2-3 hours as we do now. We could do that for the first 3 weeks when we still have summer holiday and our family is able to help us. But Alicja is going to school in September. Who is going to feed her there using a dummy in a half-lying position? How are we going to feed her orally in the morning before she goes to school if she still eats that slowly? How can we manage that in our everyday life?
We would also wish that Alicja starts to eat in an upright position, like a “normal” child, sitting with us at the table and eating from a spoon. However, she won’t accept a spoon for now (that is strange because she used to eat from a spoon when she was one year old and even could take food from the plate using a spoon on her own).
When we ask Eva when does she think that Alicja will be able to eat in an upright position, she says that she is not sure whether it is ever going to happen since she cannot even sit up on her own. “It’s not true– we protest -Of course she can sit up whenever she wants”. “But I never saw that; and I don’t always believe what parents say, sometimes they only have an impression that their child is able to do something…”
I watch Alicja carefully during the play picnic and in fact she is lying for the whole hour. She used to sit up at home all the time. Only now do I realize how weak she has become after this week of starvation…
3rd – 6th of August
Alicja wakes up with orange mucus coming out of her nose. As orange as grandma’s tomato soup. Even worse, the soup starts coming out of her nose during each oral feed. This mucus becomes orange and then green three days later… We don’t understand why this is happening, she had that problem when she was younger but we thought it was over! Ok, the saliva was still coming out of her nose every day but food? Why didn’t we see signs of it in the first week? Maybe she has been keeping all this food somewhere in her mouth for the last week and it only came out now?
Prof. Dunitz says that we shouldn’t worry about it. Alicja will sneeze it and cough it out when necessary. Maybe it is her new bad habit and she will stop doing that soon... We don’t really believe that this is just a bad habit. We also don’t believe that food coming out of her nose can be natural for her body. We can see that she loses energy everyday now. She eats less and less.
We ask Prof. Dunitz what about drinking fluids in Alicja’s case. We try to give her some water but she spits all of it. She says that it is not certain that she will ever learn how to drink because children with her neurological issues are sometimes not able to. “Well, if she cannot learn to drink then we will never wean her off the tube” – we tell her. “Not necessarily – doctor answers – you can thicken the water with a special powder and it becomes like a jelly. You can also start to give her more and more soups, so she has enough fluids and she doesn’t have to drink water anymore.” “Why cannot she drink water?” – I am thinking – “Will she only drink soup her whole life!?”
Alicja still doesn’t accept a spoon during the therapy with Eva; she only wants to eat from the dummy. We ask whether we should start doing facial massage again (we did it a lot when she was young but we didn’t find it very beneficial). Eva says that it may be worth trying it but we have to find a good SLT… What? They don’t have any SLT here at the school because they say it is not needed and we have to look for one afterwards? So, is an SLT needed or not? And what did we pay this amount of money for? We explain to Eva that we came here expecting proper help from their side because other SLTs couldn’t help Alicja. Eva offers us a contact to a good SLT in… London. She says that going there only twice a year will be sufficient; she will show us techniques and we will do them at home… Well great! We already have our ENT doctor in Italy, orthopaedic surgeon in the USA and audiologist in Warsaw. We don’t want to travel to another country on top of that, especially when we expected to get help here at the school.
All this is more and more disappointing and worrying. We have an issue with the length of eating, the position, and spoon feeding, drinking and biting. And the program is already finishing in two days. Of course, we will have one year net coaching afterwards but if they cannot help us right now, will they tell us something new later on via email?
How is it going to look like for the rest of our life? Should we prepare the special soups and take them everywhere we go? Alicja would have to suck them from a dummy in a half-lying position for hours each day? She would never drink anything? She would never eat solids? Of course, this is the most pessimistic perspective but we know that in Alicja’s case the most pessimistic scenarios usually happened… I just wonder whether this kind of eating will be more comfortable for Alicja and will improve her quality of life. And if not, maybe it is better for her to feed via the tube and be happy.
When I tell Prof. Dunitz about these concerns, she tells me that I am a very pessimistic mother. Alicja didn’t eat before and now she eats. And maybe she will eat faster and more efficiently in time. So why do I have concerns? However, she also starts looking at our daughter’s case in a less positive way. She says that Alicja has neurological issues and we shouldn’t expect too much. And if we want to find out why food is coming out of her nose during eating we can do additional neurological tests… Why didn’t she advise us of this before we paid so much money?
A couple of hours later I heard her saying to another mother that her son will eat for sure. This hurts as only a few days ago all staff members kept saying that Alicja made such great progress…
Maybe it’s true that I am a pessimistic mother. I’m losing strength, energy and trust in these specialists. I start thinking that Alicja will never be able to learn to eat…
7th August
We are informed that the school is finishing tonight instead of tomorrow at noon. A few families decided to leave tomorrow in the morning so they can avoid traffic on the roads. Therefore we have the closing celebration this afternoon instead of having everyday school activities.
Alicja eats much less again today; she is very apathetic and sleepy. Her weight is checked during our final medical round and it shows that she weighs only 15.1 kilograms (she was 16.8 when the school started two weeks ago). The Doctor tells us that she mustn’t lose anymore weight. We have to make sure it doesn’t drop below 15 kilograms. They give us a plan for home; we have to feed her orally as much as she wants and count the amount of food she eats. We should avoid giving her food via the tube during the day because she will not be hungry. However, we should top up her daily dose of food via tube in the evenings. We are concerned that this late feed via tube may be too big for her and her body may not tolerate it. Doctors shrug their shoulders: “you have to find you own way…”. When we ask doctors whether they still think that Alicja made good progress in oral eating, Dr. Sheer says: “All children were wonderful”.
All children were certainly wonderful but they didn’t progress equally. Half of the children completely stopped eating via tube, most of the others had good prognosis. All of them lost weight but doctors say it is only a matter of time before they regain their weight again. Nevertheless, many of the children got sick, some of them left the school earlier or ended up in hospital. According to No-tube staff it was just a nasty virus. Maybe it is true but there were children who got a bacterial chest infection. Are they sure it is not from eating? We are so lucky that Alicja didn’t get sick!
This afternoon, we dress Alicja nicely (we have been wearing only old clothes for the last two weeks so we could freely play with the food). The closing celebration is lovely. The “students” get School leaving certificates. Also all siblings are not forgotten; they received certificates for “best therapists”. No-tube staff is singing a nice song about children having no tubes anymore (“The No Tube Song”) especially prepared for this occasion. No tube; for us it’s still just a dream. Is it going to come true one day? We are still not sure... Anyway, it is a nice party. We take pictures and exchange our contact details. Who knows maybe everything is going to be fine with Alicja’s eating…
Together with Prof. Dunitz and Prof. Scheer
Tonight Radek and I are going for a parents leaving party. Two hours later we receive a phone call from grandma who says: “Alicja didn’t eat anything, she was very upset and irritable. She just fell asleep. I need to feed her via tube now”.
The 8th of August
Alicja wakes up with very high fever: 39.8˚C! (Almost 104F F). Can that be a chest infection??? We run to see Prof. Dunitz straight away; hopefully, she hasn’t left yet. It takes us 30 minutes to find her in the hotel. She doesn’t seem to be surprised to hear that Alicja has fever. “It’s a virus – she says – she got it from other sick children”. We ask her whether she is sure it is a virus and ask her to check Alicja’s lungs. She says that the stethoscope has already been packed in her suitcase. I am losing my patience: “I don’t care – I say rudely – the school was supposed to finish today at noon and it’s only 9AM!” Surprisingly, it does work and the doctor comes back 10 minutes later with the stethoscope.
Thankfully, Alicja’s lungs are clear, what a relief!!! “You see, I said it was a virus. When are you leaving? Tomorrow? That’s good; it should be much better by tomorrow”. We are not confident that this is a virus. After all, the food has been coming out of Alicja’s nose for the whole week. Doctor says that it doesn’t matter. In our opinion it does... We ask her to look into Alicja’s ears and throat. Doctor becomes impatient; “my spatulas are already in my car and I have to leave soon”. Besides, she says that she cannot give us a prescription in Holland. She thinks that we shouldn’t worry because it is a virus for sure. Just in case, she gives us an address for a local health center. “And what about Alicja’s oral feeding? – we ask.- If she wants to eat then yes, she can but if not, then give her food via tube for now. Should we give her an antibiotic that we always have with us in case of emergency? “Of course you can if you think it is a bacterial infection. I am sorry but I have to go now. It is going to be a long journey for me. Good luck! And we will stay in touch!”…
Alicja cries or sleeps for the rest of the day. When her fever drops we try to feed her. She eats less than 40mls during the whole day…
The 9th of August
We leave De Rijp and head back to Poland.
In spite of Prof. Dunitz optimistic declaration, Alicja is getting worse not better. We are giving her an antibiotic. Thanks to pain and fever relief medication, she “survives” our 12 hour journey. She is sleeping all this time. When she is awake we offer her dummy dips but she refuses it straight away. We return to tube feeding as before the Eating school…
The 10th-16th of August
We were supposed to come back home and demonstrate to our families how Alicja can eat orally so beautifully. We were supposed to proudly hang her No-tube certificate on the wall. Alicja was supposed to eat her first meal with the whole family and to show it to a greater “audience” at a family weeding at the end of August. Unfortunately, instead of this, we are back on full tube feeds again. We are back at the beginning…
Our paediatrician confirms that Alicja’s lungs are clear (great!) but she finds her ears and throat are infected. It’s a bacterial not a viral infection! She says that obviously if the food is coming out of her nose, there is a chance that this can infect the ears and throat, especially during hot weather like now.
Alicja’s infection is very severe. She has a high fever for many days and lies in her bed all that time. Hot weather in Poland doesn’t help her to recover. She doesn’t even want to look at the dummy all that time: she associates it with sore throat and illness…
We start to worry that Alicja will end up in a hospital instead attending the wedding. Thankfully, the change of antibiotic helps her to finally recover.
It’s great that she is back to her own self, but what next? What about our plans, hopes and dreams…
After the Eating School; what next?
As Alicja recovers from this nasty infection, we start thinking about what we are going to do about her oral eating?
We have spent so much money for the No-Tube Eating School expecting experienced specialists who are able to tell us how to teach Alicja how to eat… Unfortunately, we have lost trust in them. A viral infection diagnosed by Prof. Dunitz turned out to be a nasty bacterial infection. The “minor” issue with food coming out of Alicja’s nose became harmful and the tube feed reduction that was supposed to make her willing to eat made her weak and, by consequence, probably led to this quite serious sickness.
The No-Tube team seems to be a group of specialists who can only help children with food phobia! Even then, we think that most of these kids could have learned how to eat without participation in the program, with help of a local SLT or psychologist. We are now almost sure that parents of children with serious medical issues, especially with neurological problems, will not get any advice at the School for their individual needs.
We don’t know whether it is worth using this one year aftercare online service that was included in the price of the Eating School. Will we not just be wasting our time? What else could they advise us if they even don’t have an SLT in their team and Prof. Dunitz doesn’t believe that food coming of the nose caused Alicja’s illness? And even if she does, she will not be able to do anything about it. She will offer us additional neurological tests or will tell us to find a good SLT…
There is nobody who could explain to us why the food is coming out of Alicja’s nose and how to make her swallowing more efficient. Nobody knows where exactly her issues come from.
The only real benefit from the School was to find out that Alicja’s lungs have stayed clear all the time, even when she ate. We took this as a confirmation that she doesn’t aspirate anymore! It is wonderful news :) However, other issues may disqualify her from oral eating…
When Alicja is fully recovered, we will try to feed her orally again. We will do that slowly as we cannot let her get sick again. Besides, our everyday busy life will not allow us to feed her every 2-3 hours. The big problem though is that we have already been trying to feed Alicja little by little for a few months before we went to the Eating School. It didn’t work, she wasn’t interested. Probably she wasn’t hungry. But if we start starving her again she will lose weight and get weak; this cannot happen! How to break this vicious cycle?
We are disappointed not only by the No Tube specialists. Alicja turned out to be an extremely difficult medical case once again. Most of the other children had success at the School. Also, many children with CHARGE syndrome can learn how to eat in their own time; without any special therapy. Their muscles get stronger and they can better manage their saliva and swallow food. We sought help from apparently the best specialists in this field to help Alicja. Unfortunately, it failed. It is quite heartbreaking…
There are so many questions that we and specialists cannot answer. For example: why did the food not come out from Alicja’s nose in the first week? Will she always get sick when she eats? Why can’t she always swallow efficiently or drink water? Why doesn’t she always want to eat? And what can we do to improve the quality of her feeding?
We are disappointed, heartbroken and exhausted. And we still don’t know whether Alicja will ever be able to learn how to eat orally…
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23th of July 2015
Summer is here and Alicja enjoys daily walks in the park. However, this routine that she loves will soon be disturbed by a new challenge: on Monday, she starts two weeks' eating school in Holland, a therapy that we had planned for a long time. And even if there is no guarantee that this therapy will work, we just have to try. Please keep your fingers crossed!
28th of April 2015 - Alicja's 6th birthday
Alicja had a wonderful 6th birthday party. Many friends came to celebrate with her and she received many beautiful presents! She was very happy :)
22nd of April 2015
It is a year today since Alicja’s third leg reconstructive surgery in the USA. Exactly a year ago, Dr. Paley removed Alicja’s fixator, lengthened the muscles in her hip and put her in a hip spica cast which meant she was unable to sit for at least a month.
It was a difficult time but a month later the cast was removed and our little girl was finally free. For the first time in 9 months, she didn’t have to wear a heavy fixator or a very uncomfortable spica cast. Her leg was free, new and beautiful :) A week later she received her first brace and started to learn how to walk.
Today, a year after this last surgery, we realize how much this „new leg” has improved Alicja’s life. Even though she is still unable to walk totally independently (due to her balance problems she needs support of a walker or of someone holding her hands), beginning to walk gave her the motivation to discover the world. She loves to walk whenever she can and she always leads us to places that she wants to discover J Walking also gave Alicja courage to independently move around the house (she was afraid to do that before due to poor vision). Now our apartment has become her kingdom. When she doesn’t have her brace on, she just shuffles on her bum everywhere all the time :)
At the end of March, we met Dr. Paley in Birmingham (when he came to a conference) for a follow up appointment. We were a little bit anxious about it as we knew how many children had to return to the clinic in Florida for additional surgery due to complications. We also knew that Alicja had dysplastic hips. Dr. Paley was supposed to tell us on this follow up visit whether they will need to be operated on…
We were very surprised and relieved when Dr. Paley said that he was happy with Alicja’s progress! He was impressed when he saw her walking so well, straight and fast with her walker, with a big smile on her face. But he was even more surprised about the condition of her knee joint. He said it is more stable than in most cases of the leg malformations similar to Alicja’s. Also the fibula (the smaller lower leg bone which is the only bone Alicja has on her right side) is stronger and thicker and it’s almost as thick now as the tibia in Alicja’s healthy leg. Additionally, the distance between the length of the legs seems to have decreased even though we had been previously told that it was very likely to increase. We loved all this good news :)
The only thing the doctor said wasn’t great was the angle of the knee bending. Probably we don’t do enough of the knee bending exercises: they are unfortunately painful and very stressful for Alicja. However, on the plus side, the fact that we don’t progress too fast with the bending has also its positive aspects; it gives the knee time to become stronger and more stable.
As for the hips, the news was also good: the doctor said that their condition hadn’t gotten any worse and, even though we will still have to observe them, they didn’t need surgery in the near future. What a relief!
Finally, Dr Paley decided to change Alicja’s brace to a new one that will not have a belt anymore (it will go from the upper thigh to the toes). Even if the belt was giving her more stability, she has made enough progress with walking to be able to move towards more independence.
You can see Alicja’s new brace on the pictures below. It looks much nicer and it’s much more practical than the previous one. Alicja was initially a little bit afraid of walking without the belt support but she got used to her new brace within a couple of days :)
This brace came just in time to be one of Alicja’s 6th birthday presents. It is so hard to believe that our little girl will be 6 in just a couple of days!
If any of you would like to contribute to her birthday present, you can donate here:
Thank you all for all your help!
7th of April 2015
Easter time souvenir :)
February 2015 - Our trip to Austria for Alicja's feeding assessment
Alicja has been tube fed since birth. A swallow test carried out when she was 3 years old has shown that some of her feed goes into her lungs. For this reason, we have been advised that she will probably never eat as it would not be safe for her to do so. Nevertheless, we’ve always hoped that one day the situation would change and she will be able to swallow normally. Since our doctors and therapists at home were reluctant to retest Alicja’s ability to swallow, we decided to take her to a specialist clinic in Graz (Austria) where doctors are well known for tube-weaning children who, like our daughter, were never expected to eat orally.
The purpose of this trip was to find out whether Alicja aspirates food into her lungs and to determine whether she can learn to eat orally. We were a little bit afraid that, if she wouldn’t eat anything during the tests, we would come back home with no new information about her swallow ability.
However, we could never have imagined how important this stay in the hospital in Graz would be from a different aspect of Alicja’s health… Well, our little girl is always full of surprises…
The 16th of February
Our journey started very early today. After an eight hour drive from Wroclaw (our city in Poland) we finally arrived in Graz in southern Austria. Alicja did great in the car. She didn’t complain at all during this long journey. We checked in to Ronald McDonald House, situated just 4 minutes walking distance from the clinic. Ronald McDonald houses exist in many places all over the world, offering accommodation to parents whose children are treated in hospitals, for a symbolic price. This house was only recently built, well designed and very colorfully furnished; it looked very much like a nice, modern hotel. Alicja fell in love with its big spaces, colors, lights and big floor to ceiling windows. At first, she visited the whole house by shuffling on her bum and then she took a nice long walk with her walker. Also the nice play room full of different toys was like paradise to her. She was really happy and she looked at us as if she wanted to say: “Mummy, Daddy, I really like our family holiday this time” ;)
To us, it almost seemed like a holiday too. There would be no hospital stay or surgery this time. All tests would be performed as an outpatient and with no anesthesia.
Well, what we didn’t know yet was that a “little surprise” would interfere with these plans…
The 17th of February
We went to the clinic this morning to meet Prof. Marguerite Dunitz-Sheer and to discuss the plan for Alicja’s feeding assessment.
We discussed Alicja’s medical history as well as the history of her feeding. Our daughter has been fed by tube since birth. When she was 8 months old we started to spoon feed her a little bit as we didn’t want her to miss the chance to learn how to eat. Unfortunately, a videofluoroscopy test performed when she was 3 years old showed that Alicja is aspirating (during the test a big portion of food went to her lungs instead of going to her stomach). This is when we were told to stop feeding her as it was not safe to do so.
But Alicja wants to eat: she always sits with us at the dinner table and wants to taste what we eat. We know that, as the child grows, aspiration may become less severe or even disappear completely.
We also know that eating is not only about pleasure of different tastes and textures. It helps every child to develop different skills. A child who is fed by tube is usually speech delayed. (Alicja is almost totally deaf but, if she ate, she would probably produce more sounds). Children artificially fed are also oversensitive to touch (our daughter didn’t want to touch toys until she was one and she only started to take them into her mouth when she was three.) She still hates brushing her teeth and washing her face. There are also things, like crayons for example, that she will never take in her hands so she doesn’t develop fine motor skills.
Prof. Dunitz told us that, from the videos we had sent to her, she thinks that Alicja can learn to eat. However, we need to check whether she is still aspirating. To find this out, she was planning to perform three tests:
Videolaryngoscopy test – a little camera will be introduced into Alicja’s throat through her nose to look at how she swallows and how her airways look during oral feeding.
Videofluoroscopy test – swallowing act. Alicja will be fed orally with her favorite food with a contrast added to it and a few X-rays will be taken to see how she swallows and where the food goes.
Reflux test (that will be performed at the same time as the videofluoroscopy). Doctors will see the shape of Alicja’s stomach to predict the severity of her reflux as this can have significant influence on the aspiration.
We had serious concerns that our little one would not want to cooperate during these tests. Would she want to take anything into her mouth when she has a tube with a camera in her nose? Would she want to eat in the strange environment of the x-ray room during video fluoroscopy? And would this trip just be a waste of time and money if she does not cooperate?
A swing at Ronald McDonald's House
A library at Ronald McDonald's House
The 18th of February
Alicja had her first test (the videolaryngoscopy) performed this morning. She obviously didn’t even want to think about taking anything into her mouth after a doctor put a long tube into her nose and throat. She was extremely upset so we could barely even hold her on our lap.
The only thing we learned from performing this test was that Alicja’s airway looked normal even though it was a little bit floppy (this is why she is often “snoring” especially at night time). The doctor performing the test could also see that the upper part of Alicja’s vocal cords were closing properly which is reassuring as, in case food enters the airway, closing vocal cords can prevent it from going to the lungs. However, since she has a very weak voice, the lower part of her vocal cords may not be fully closing (it was impossible for the doctor to introduce the camera into this part of the vocal cords).
After videolaryngoscopy, we had a speech and language therapy session, where we discussed some methods of facial massage which, in fact, wasn’t new to us since we used to massage Alicja’s face regularly when she was a baby. However, this reminded us how important massaging the face is. It awakens mouth muscles that are not used when a child doesn’t eat and doesn’t speak. But Alicja has a problem in that she is ok with having her face massaged on the outside but she won’t let anyone put anything inside her mouth: another psychological side effect of tube feeding.
Finally, at lunch time, we participated at the “play picnic” where tube-fed children learn how to eat orally. A big white tablecloth was spread out on the floor and different kinds of foods were offered to children who were on the picnic. The idea of the play is that children who have food aversion as a result of being tube fed can explore food tastes and textures without being forced to eat. This, paradoxally, gives them the desire to taste food and to eat. The presence of other children is an additional incentive for these kids. This is how the two-week feeding course would be if Alicja didn’t have aspiration and if she qualified for the tube weaning program.
Alicja didn’t seem particularly interested in the picnic or in the presence of other children and she didn’t really want to taste anything in this environment which was so different from home. We know that it takes time for any tube-fed child to start being interested in tasting and eating but Alicja’s lack of interest in the picnic made us a bit worried: would the two-week tube weaning course be of any benefit to her? Well, until she passes her swallowing act test it’s probably too early to worry about it anyway…
The 19th of February
We came to the X-ray department early this morning. Prof. Dunitz, who was waiting for us there, reassured us again that they have experience with different children so we shouldn’t worry that Alicja won’t cooperate. They will find a way.
We then took our little one to the room where she was put sitting in a special wooden chair connected to the X-ray machine. It was very far from being a natural and relaxed situation for feeding. The angle of the chair was set in such a way that Alicja was hanging forward strapped in with harnesses. The radiologist added the contrast to her favorite food which changed the taste and consistency very much (we tried, it just tested horrible!). Obviously, our efforts to convince Alicja to eat didn’t bring any result. The more we tried, the more she resisted taking anything into her mouth. Finally Prof. Dunitz presented her “plan B” to us: we were going to feed Alicja (with the food containing the contrast) in a different room in a calm and cozy environment. After she has eaten some, we would bring her back to the X-ray room, take an X-ray of her chest and see if there was any contrast in her lungs (if there is, it means that she aspirated). The plan sounded reasonable.
But there was one more thing that the doctors wanted to check before we went to the room. They filled Alicja’s stomach with contrast to see the shape of it on X-ray. After taking this x-ray, we were told that Alicja’s reflux is significant but not very severe. Therefore, it can probably be controlled by medication and doesn’t require surgery.
We took Alicja to this quiet, cozy room where she relaxed and took a couple of spoons of the soup with contrast. We then took her back to the x-ray room to do an x-ray of her chest and impatiently waited for results. Did food go to Alicja’s chest? Will our hopes be dashed once again?
“Good news, said Prof. Dunitz, when she called us to her room, Alicja didn’t aspirate the food to her lungs!” Great, we thought, but did she swallow anything? She spat a big portion of it and we were not 100% sure how much she swallowed. If the food with contrast was discovered in her stomach, that would be a proof of swallowing. But her stomach was already filled with contrast for the reflux testL Not very clever! But Prof. Dunitz didn’t have any doubts that Alicja swallowed some food and that she didn’t aspirate any of it to her lungs.
Suddenly, our discussion was disturbed by something strange that the doctor found on the chest X-ray. There was a foreign body there in the middle of Alicja’s chest. A round object was situated either in her lungs or in her esophagus. “What is it?” was our question. “I don’t know, said Prof. Dunitz, but I will find out”. She started calling different specialists to have a look at this. First impression was that it was something from Alicja’s heart surgery. But this was quickly ruled out by a cardiologist. Another doctor suggested taking an additional X-ray from the side to see the exact location of the item and so this was done. This showed clearly that the strange foreign body was located in her esophagus. Wow! Alicja swallowed a piece of toy??? But she doesn’t swallow! In fact, she had fun in the play room last night so maybe she took something in her mouth and it got stuck in her esophagus? We started blaming ourselves that we didn’t take enough precautions. Whatever it was it had to be removed as quickly as possible.
While we were still very shocked by the news, a nurse came to take Alicja to a hospital ward. It seemed like we had no choice: she was going to have a surgery! A doctor came to present us with a plan to remove the object from Alicja's esophagus. He said: “It's nothing new to us. It happens very often to kids that they put strange things in their mouths and swallow them”. Well, maybe other kids do, but not Alicja… We tried to think what it could be. Then we remembered the problem with Alicja's PEG tube two months ago: it got blocked and, when we went to the hospital, doctors cut it and pushed it into her stomach … It was supposed to be passed but we actually never found it in the stool… BINGO! That was probably the end of the PEG sitting in Alicja's esophagus. But how did it move up to her esophagus from the stomach?
Later that day another surgeon came and said that he had seen cases with PEG ends sitting in esophagus and he was almost sure that the foreign body in Alicja’s esophagus was actually the end of the PEG. It probably moved up with Alicja's reflux.
The surgeon started frightening us by saying that it was very serious that this foreign body had been sitting there for almost 2 months. He said it may be very difficult to remove it as it may be lodged in the esophagus by now. He said that the easiest option would be to pull it out with a gastroscopy but this may not be possible. The other option would be to push it down to Alicja’s stomach and then open her stomach surgically and remove it. The third option, the worst scenario, would be to open her chest and esophagus which meant a very difficult procedure with many possible complications afterwards.
That really stressed us out! What will happen if Alicja’s esophagus has to be opened? Will she have to spend weeks in hospital here in Graz, so far from home once again in her life?! What if she has post-surgical complications? Who will we blame for putting Alicja at risk like this? (Doctors in Graz said they would never remove a PEG by just cutting it and leaving the disc in the stomach!)? Finally, we know that so many kids had their PEGs cut and didn’t have any complications whatsoever. Why do all these difficult situations always have to happen to our daughter??!!
On top of all this, it became very late and the anesthetic doctor still hadn’t come due to many emergencies. Once she came she looked very frightened when we told her about Alicja’s medical condition and we could see that she didn’t feel very confident to put her under anesthesia tonight. She said that, due to the late hour, the recovery room wouldn’t be available and that there would be less staff than during day time. That worried us even more. We decided that we wouldn’t put Alicja at additional risk and so the surgery was postponed until the following morning.
The 20th of February
Alicja was taken to the operating room next day around 9am. Obviously, she knew what was going on and that she was going to have surgery. She hates it and we have enough of it as well… We all had to go through this stress so many times already and it seems like it will always be a part of our lives with Alicja. She has so many birth defects and there will always be something that will cause problems... How strong will we have to be to continue facing them?
The operation took over 2 hours and it’s difficult to describe how relieved we felt when the nurse came to us to say that everything went well and we could go to see Alicja in the post-op. When we went there, she was comfortably sleeping in a deep, natural sleep.
The surgeon seemed to be happy when we met him in the recovery room. He said that he was able to remove the object by pulling it up with gastroscopy. He showed us this “foreign body” which in fact was, as we had predicted, the end of the PEG tube. It looked (and smelled) horrible! What a relief that both the surgery and the anesthesia went well! Doctor said that if Alicja felt well and didn’t have fever within the next 24 hours, we could leave the hospital and go home tomorrow.
However, the doctor also said that he saw a scar on the esophagus that was caused by the disk. This scar may cause problems with swallowing in the future, especially if Alicja starts to swallow solids. It also should be reviewed in a few weeks to make sure it was healing properly. Well, we really hope it will heal as we cannot imagine another surgery on the esophagus…
The 21st of February
When the patient starts to feel well and healthy even being in hospital can be good fun ;) Alicja had a good night’s sleep, she had a nice bath in the little hospital’s bathtub and she had a good time in the playroom on the ward.
At noon, we were discharged. We went to the Ronald McDonald house to pack and then started our journey back home.
Certificate for a brave patient
Conclusion
Our trip to Austria turned out to be extremely important and lucky for Alicja. We cannot imagine what would happen if the end of her PEG was still sitting in her esophagus and we were not aware of it. It would continue damaging her esophagus and Alicja could finally end up with a very severe medical condition, she could even die…
With relation to the feeding assessment, it was unfortunately interrupted by this emergency surgery that took all our attention and we had little time to properly discuss future feeding plans for Alicja with Prof. Dunitz.
Even if the tests performed in Graz showed that Alicja did not aspirate to her lungs, we are still unsure whether all the food that she swallows goes to her stomach. We are also a little bit concerned that a portion of food that she takes stays in her nose as it may cause constant infections.
We will now have to discuss Alicja’s tube-weaning plan and all our concerns with Prof. Dunitz and trust her experience. If she thinks that an intensive feeding training will be beneficial to our daughter, we will probably go for a 2 weeks’ feeding therapy camp organized by her in Germany at the end of May.
The cost of this camp is around €10,000. We would really appreciate your support and donations to help us to raise this amount of money.
Thank you very much for all your help!
Parents of Alicja
14th of February 2015
Happy Valentine's from Alicja:) It has been exactly three years since she was implanted with an Auditory Brainstem Implant that gave her hearing. A year ago, she was in the USA where she was undergoing treatment to be able to walk on her own legs. Today, she is preparing to go to Austria for swallow tests that will determine, whether she will be able to eat (we are leaving tomorrow). Please keep your fingers crossed!
12th of January 2015
2015 started for us with problems with Alicja’s feeding tube and a hospital stay.
On the last Sunday of 2014, right after Christmas, while we were still in Poland for the Christmas break, Alicja’s tube blocked with the antibiotic that she was taking for an infection (we later learned that Klacid is quite known for being very harsh on feeding tubes). We tried unsuccessfully for two hours to unblock the tube (with warm water, coke and warm bath) and finally the tube burst. That was the end: the PEG tube we had relied on for nearly 5 years was gone and Alicja was left with no way to eat or drink. We had to immediately take her to hospital.
There are two possible ways of removing an old PEG tube. The easiest way is to cut it near the skin as you would cut the umbilical cord in a newborn baby. This is straight forward and painless but there is a risk involved as a part of the tube (including a silicone disk) stays in the stomach and it may damage the intestine while it goes through the excretory system. The second way of removing the tube is to do it under general anesthesia, which is totally safe from the PEG point of view but anesthesia is always dangerous for Alicja. We knew for a long time that her tube would eventually have to be replaced and we were wondering which procedure would be more dangerous for our daughter. Now, it was an emergency and we had no choice but to trust the doctors in our family’s local hospital.
While in hospital, we learned that the procedure in Poland was to cut the tube and “hope that it will be passed with no problems”. We were worried but happy at the same time: no anesthesia! We had an emergency tube with us so our hospital stay only lasted about half an hour. Doctor cut the tube, pushed what was left into the stomach and replaced it with our emergency tube. Alicja didn’t seem to feel any pain and she even giggled when the tube was being replaced (she must have tickles there) :)
For the first couple of days after this incident, Alicja was happier than before. She didn’t cry during her feeds anymore (she must have had pain from the old tube). Unfortunately, the problems started right after the New Year. She started crying and touching her stomach during her feeds. She was also “not exactly herself” and she occasionally had a little fever. We didn’t know whether it was caused by a virus or by the tube. And, if it was the tube, was it the old one that she couldn’t pass or was it the new one (it was an emergency one so it might not have been the exact size that she needed). We were closely watching her stools but we couldn’t see any disk there. About a week later a doctor told us that a tiny piece of orange jelly that we found could be the disk (sorry for all these details) ;)
Since we had an appointment with the Paediatrician to check the tube, we held off taking Alicja to hospital. But suddenly, one morning, she vomited a significant amount of thick, dark red blood and couldn't stop crying… We then rushed her straight to the children’s ward at the CUH.
Doctors there spent an hour trying to put her on a drip (Alicja, to make things even more difficult, has very thin veins, so putting an IV or taking bloods is always a nightmare for her). Thankfully, her bleeding was quickly controlled. She then had 24 hours of bed rest with no feeds; she was just receiving medications and fluids intravenously.
The following morning, Alicja underwent a small procedure without anesthesia. Doctors removed the emergency tube and put a Mic-Key button in her stomach. Unfortunately, it wasn't painless this time as the PEG site was infected and she jumped with pain when the doctor removed the emergency tube. Thankfully the procedure wasn't long.
During this hospital stay, we realized how wise Alicja is becoming. She now knows which hospital procedures are painful (like blood taking or putting an IV) and when she doesn't need to be afraid: she had two x-rays with this stay and she remained still and quiet on both occasions (taking into consideration her poor vision, we were very surprised that she recognizes an x-ray machine). Also, when we put a hospital gown on her just before going for the procedure she got really frightened, started crying and cuddled to her dad. She calmed down and started smiling when we explained to her (with words and gesture) that this will only be a little procedure and that we will replace her tube. Although she does not communicate, she really understands a lot :)
We left the hospital about 10 hours after the PEG change. Even though Alicja had pain during feeds for the first two days, she is much better now and she is back to her own happy self. We will now use the Mic-Key button instead of a PEG and we will hopefully be able to change them ourselves at home whenever needed.
When we saw Alicja with no tube for about a minute in the procedure room, we started dreaming that maybe one day she will not need that anymore and that we will just be left with a scar as a souvenir. Will this ever happen? We don’t know… We are looking forward to the swallow tests in Austria in February, even though we know that their results may not be good which will again dash our hopes…
More posts here.
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