This morning we had to get up very early. We had our consultation with Dr. Reding. We arrived a little over eight at the office because Quint decided to make a dirty diaper just before we left. So we had to change him. In the waiting room the Fam. Offermans and Sem with his mother so we were able to have a nice chat.

Afterwards Quint had to give some blood. It was already too late for ‘emla’ and for Quint giving blood was a disaster. Now we received some emla for the next time to alleviate taking the blood. After the blood giving and weighing Quint was allowed a break. When he was calm again we gave his medication and after a while a cookie. In the mean time we talked with the mother of Camilla and also the psychologist came by for a chat. When Quint was calm again we were called in the office of Dr. Reding. The consultation went well. When all was done we went to the pediatric ward to have Quint’s feeding tube changed. This also went quickly en then it was time to load our stuff in the car.

Granddad arrived Wednesday with the big car of my brother. It took us 2.5 hours to put all our stuff in the car, luckily all fitted. Around three thirty we arrived in The Hague. Finally back with granddad and grand mom and Melissa. Grand mom and granddad decorated the house and bought a ‘Maison Kelder’ hazelnut cake. (maison Kelder is a well known bakery with the best hazelnut cake).

Linda and Luna came instantly to greet us and Steef helped Oscar to clear out the car. It was again a big undertaking, and now we have to sort things out again.

When we were eating the cake, suddenly the tiredness came up. It was a though day. Melissa was very happy that we were back and asked all the attention from her father. We went to bed early. At night one of us had to get up to change the bottle again.but that’s no problemit is good to be with grand mom, dad and Melissa again.

 

Today is the day. This weekend we used the new milk schedule and so far it works. Now we have to see if it is enough. So far Quint weight is the same again as Friday. Hopefully he will gain weight from now on.

In the morning they took blood from Quint, which was not pleasant. Luckily he forgets his pain quickly. But during the blood taking you are busy with 3 people. Two to hold Quint down and one to take the needle and the blood.

For the rest of the day we take it easy. We are a lot in the room, so we are there should someone need us. The mouth specialist came by right on time because we were just starting to give Quint something to eat. Quint ate well..after some protesting at first. The specialist was impressed and told us to keep doing what we are doing. Quint has to learn that eating is fun, and we are on the right track.

We expect to be dismissed from the hospital late in the afternoon. We still need to get some reports and prescriptions. We let Quint nap normally in the afternoon. After this the doctors will come by during their rounds. After they are done we expect to be able to leave. At first we were planning to leave for The Hague tomorrow but Magda informed us that the 1st consultation would be on Thursday. So we decided to stay until Thursday in Roseau and the drive to The Hague.

We are going home with a lot of medication mainly for the intestines and some for the liver. Quint also gets special milk to assist the intestines with the digestion. Nutrilon Pepti without lactose (in Holland: Nutrilon Pepti Junior) When the intestines start working properly again it will gradually change to normal ‘milk’ feeding. All in all it will remain a huge care. But if everything goes well it will become easier.

Around five we received all the prescriptions and reports, so we ordered the medication in the pharmacy of the hospital and tomorrow we can pick them up

Our apartment is a lot smaller now that we have Quint with us. Especially with the buggy. We have to do for a few days. We did not do that much for the rest of the day. We only gave Quint some food and started to sort our stuff. Around nine we put Quint to bed and he slept very quickly. Shortly afterwards we also went to bed. During the night we had to get up one more time to change the bottle. In the hospital this was done for us, so that is again something to get used to.

 

Today Quint lost a little weight and he still has diarrhea, especially in the morning. The milk is well tolerated and the day passed by quietly.

The way it looks now we most probably can go to The Hague tomorrow

Friday evening we started with the new milk schedule so we could see over the weekend how that works out. Quint still has a lot of diarrhea. The day went by quietly and we took Quint outside in his buggy.

In the afternoon Heleen came by to visit and brought again delicious Indonesian food with her for us. We enjoyed it very much.

Heleen, thank you for dinner.

                                                                

Shirley spoke to the doctor this morning and told her about the night. Although the milk was kept in, Quint was a bit restless. The pump was also turned off for 1 hour.

It has been decided that we will see and probably change the feeding schedule. Maybe the we can give less volume but make the milk richer in calories.

For now we stay until at least Monday in the hospital

The milk speed has been increased and some breaks are introduced. There is still a lot of experimenting going on. The big Question is how much milk can Quint take. The entire night the pump stood at 80 ml per hour. This went well. In the morning after he had received his anti rejection medication prograft the speed was increased to 100 ml per hour. The intent is to finish this bottle at noon. Then take a 2 hour break. That went well also. After the break the pump was put at 125 ml per hour.

Around 11 I went to Roseau to take a shower and check the mail. When I arrived back at Shirley and Quint, Shirley told me that dr. Reding came by who told her that tomorrow we could go home. We want nothing more than to leave the hospital but the right way. Medication we know, but the feeding we know nothing about except that the speed is increased every day. We don’t know how much milk he needs per day, how it is made, at what times we have to give it etc. Not even a dietician came by to discuss this. Shirley told this to the doctor. Apparently the dismissal was discussed on Tuesday but nobody told us anything clearly. And now in a day everything should be arranged. So we will see if we will leave tomorrow indeed.

Quint was almost asleep when Magda came by with a Dutch family who got a tour of the ward. After this short visit Quint fell asleep and we went to get some needed groceries. We brought them in our room in Roseau and Shirley went to get our clothes out of the dryer and I went back to Quint.

When I arrived at the ward, I met Quint in the Nurses station where he was observing everything. He was checking to see if everyone was doing their job. Together we went back to his room. Later the nurse told us that he woke up and with putting him in his seat he vomited a little. Maybe the speed was too high.

Around five we went to see Magda with some Questions we had. She called the ward to ask if a dietician could come and explain everything about the milk. Later she was called again to say that the dietician was in the ward. We went back to the ward.

The dietician answered our questions, en tomorrow we will get a print out how we have to make the milk. Quint gets special milk Nutrilon Pepti without lactose. Lactose free milk has to be give because Quint received his nutrition only by IV for a long time and because of this certain enzymes are not present in his intestines. Also because his intestines were not working for a long time. At a later date lactose will slowly be introduced again. We are allowed to offer Quint some normal food in between but they have to be lactose and gluten free. Quint still does not like normal food but we keep trying. He does like to give us his food and when we come with his food he saysmmmmmmmmmmm. But eating the food no way. Only the sounds!!

The biggest obstacle for us is how do we get 1.5 liter milk in his tiny body in 20 hours without him vomiting everything out. The dietician did not have a clear plan for this and we have to solve that ourselves.

The nurses helped us also and tried to solve this puzzle as well. Later they came with a schedule on how we could spilt the volume over the day. At this time they will try this schedule. We have to see if that works out for Quint and for us. Shirley has a lot of problems with the tube feeding and she was hoping that Quint would not need it anymore after the transplant. Unfortunately because of all the complications everything changed and for the time being Quint will be dependent on the tube feeding. This will remain a huge care. We have to find a way to deal with this and put all our energy into it so Quint will get strong and gain weight. He is not yet on his old weight but is on the right track.

Sunday and Monday passed by very relaxed. Both were official days off, so the hospital was very quiet. We went a couple of times outside for a walk with Quint. Also on the ward it was quiet, only 4 other patients.

Today it is a normal workday. So the ward is busy. Early in the morning Quint got a neighbor again in the room. He is here for some tests and will leave again later in the day. He is about the same age as Quint.

When he arrived he was standing in his bed and Quint was sitting in his. When they saw each other the staring began as only children can do. They had fun together.

When the interest died down, I started washing Quint and continue to give the medication which is a little less than before. The milk feeding went well, he now gets 60 ml per hour. That is enough. Today the volume will be increased a little more and tomorrow it will be thickened for more calories. They will also start to give breaks with the feeding. For example 4 hours feeding 1 hour break (no food) etc. The hope is that he will get a little hungry and starts to eat normally. We will have to wait and see. In the mean time we are still waiting for the mouth physiotherapist. He is off today so hopefully tomorrow.

In the morning Quint also got his physiotherapy. This is playtime with the therapist and her toys. The therapy consists of walking, crawling, standing and balancing. For this the therapist has some toys, one is a ball for balancing and to keep his attention a teletubbie puzzle and some other toys.

After this we went for a walk with Quint. When we returned we stopped in the playroom where there was music. Quint joined in for a bit. After he was done we continued to the room where he took again some medication and played a little. Around one thirty he went to sleep and we went for a bite to eat.

In the afternoon the IV was removed from his chest. Now he gets all feedings through the feeding tube. Part of the medicines he takes through the feeding tube and some he take by mouth.

Quint’s neighbor had to stay the night. He had a biopsy of his liver, because there is something wrong. By accident this was discovered. He fell out of his bed and at the emergency room the checked his blood and found the liver values too high. The child is not bothered by anything. In the early evening it was again a staring party between the two. Quint kept pointing to his feeding pump and the other boy to something near him. 

Today Karin and Anton came to visit. When they arrived around noon we took Quint with us to greet them. When then went out to get something to drink on one of the terraces. It was a very nice day.

Quint was enjoying the time outside but at one point he had it in the buggy and wanted to get out. Every day he gets more energy. He tolerates the milk well and the amount is increased every day. The nutrition over the IV is reduced. Quint still does not like to eat but luckily he does take his medication well and swallows. And the most important thing he gains weight again. He still needs some days to get rid of the nutrition by IV and to get back to his original weight. (before transplant)

Quint was brought back to his room around 13:30 and fell quickly asleep. His nap time is back to normal. We then went for Pizza with Anton and Karin.

After lunch we went back to Quint to wake him and took him down in the buggy again. To end the day we had something to drink in the hospital cafeteria after which Karin and Anton went on their way again.

Anton & Karin thank you for your visit.

After breakfast grand mom and Melissa drove back to The Hague. We again had some nice days.

Since last Tuesday Quint has again a neighbor in the room. His name is Alexandre and was here for an intestine check. Wednesday he had his check, Thursday a rest day and later today he can go home.

He was very sweet and quiet and played nicely with Quint the past few days. It was very nice having him in the room. We are also happy that he can go home today.

Often we put Quint on a mat on the ground so he can play with all the gifts he received. He also wants to crawl but is unable to do so. With our help he does walk.

Later in the afternoon one of the nurses helped him to walk and together they walked towards the hallway, but because of the IV line he could not go any further. So the nurse thought let me turn around and go back. But Quint did not want this. He screamed and pointed to the hallway. That is where he wanted to go and not back. We took out all the power cords so he could walk in the hallway. Quint was having a ball. At the nurses’ station all the nurses and a doctor stood there and watched how Quint was walking and talking and pointing to everyone.

                                        

 

Quint had a good night rest with his grand mom. Oscar went early to Quint to relieve grand mom, she then had breakfast with Melissa and me. When we were done we went back to Oscar and Quint. Quint was very happy and very energetic. The milk intake goes well. Meanwhile we are also trying to give him baby food by mouth but he still does not like this. We are also waiting (already for 6 days) for a mouth kine (mouth physiotherapist), who we hope can give us tips on how to stimulate Quint so he will start eating. He is very busy and hopefully today. We keep trying but it remains very hard.

Because my mom and Melissa will return to The Hague tomorrow and we will not see them for mother’s day we went out for lunch when Quint was a sleep. During this we gave her her present. Grand mom returned to Quint and we took Melissa to the playground and afterwards we had to stop at the Carrefour.

In the evening Heleen came to visit and we talked in Roseau until late in the evening. Oscar stayed with Quint.

The last few months Quint received a lot of presents, drawings and cards. We put all the cards up and Quint is very happy with his gifts. We want to thank everyone for their support, cards and gifts.

 

Grandma spent the night with Quint. It went well, but she had to change him often. Shirley went to her early and I got Melissa ready. Today we will go to a subtropical swimming pool. She got a new pink swimsuit with skirt. She already wanted to wear this.

Grandma came to us and we had breakfast with eggs and bacon. After this I checked the opening times of the swimming pool. Grandma collected some items, she will spend the day with Quint. Then we went to Quint.

Here everything was ok. In the hall I saw the physiotherapist who told me that today all exercise went well with Quint. Only at the end he was crying, because he had enough.

We installed grandma and asked the nurses to give the medication today. Since last weekend we give all medications ourselves (except IV). But because we are going out the nurses will do it.

The pool is located in Bruparc. This is an entertainment area. We already wrote about this in the past. The Atomium and mini Europe is located here also. It is mainly an indoor pool, but also a small portion is outside. The pool itself is heated. The weather is great 27 degrees. A small portion of the pool has a rapid, Melissa loved this. She also enjoyed the big waves which are created in the main pool every 30 minutes.

After a few hours we changed and had dinner in the area before we went back to Quint in the hospital. We greeted Quint. While we were there Melissa was eating a cookie and Quint was looking at her with big eyes, so we gave him also a piece. After a while he also put his cookie in his mouth. He did not swallow but got a taste. A bit later we went with Melissa back to Roseau. She slept quickly. Tired but happy.

It was a very nice day.

 

The night went well. I did not have to change Quint that often. In the morning I did the morning ritual with medication, cleaning etc. At the moment Quint gets between 8 and 10, 7 different medications and in the weekend 8. That’s a lot. Plus also some over the IV, but we don’t pay attention to this because we cannot do anything with that.

The most important medicine is FK (prograft). Quint will need to take this for the rest of his life, it is against rejection. Everyday blood is taken to see what the values are. With these results the dose is determined for the day. Luckily he takes this by mouth.

These are the morning medications. In the afternoon and in the evening he also gets them. At this time he gets 19 medications per day (21 in the weekend). Luckily we don’t have to take all of these home with us when the time arrives.

The family arrived later in the morning, Quint was ready and waiting. He already had his physiotherapy. The lung massages aren’t necessary anymore, so it is only exercise. The first time was a disaster because Quint was crying all the time. He thought that there would be a lung massage again. Hopefully he will regain the thrust again later.

De family stayed a little while with Quint and left again. Melissa stayed with Quint and me. Melissa later went to the playroom. This is a special room where the children can sit and do crafts, read or play. She painted a nice little pot. Something for mother’s day. Around noon she played a little in the hallway. During this time I stayed with Quint so he would fall asleep. With Quint sleeping, I took Melissa for some ice-cream. And a little later we had lunch with grandma and Shirley.

After the lunch grand mom went to Quint. Shirley and I took Melissa to a playground. Here she enjoyed herself tremendously. On the way back to the hospital we walked through the woods, and so the day passed by.

Quint slept well this night with Shirley and around 9.30 the physiotherapist came with toys. Today no lung massage is needed and he can play as exercise for his motor skills. The therapists came with their normal clothing in the hope that Quint would not be scared. It went very well and Quint was quite happy and relaxed with them. About the same time family Offermans came to visit Quint. They had a checkup with their son Steven and came to say hello. They also brought a gift for Quint. A very beautiful cart with blocks. The therapy was shortly interrupted and we were able to talk and take a picture. Steven was transplanted last December and looks very well. A happy energetic boy. Desiree, Jurgen and Steven thank you for visiting and the gift.

Around noon Shirley went to the city. Last week together with her mom she saw a handbag. Her mom gets this for mother’s day. So she went to get it.

Today Tiba and Sem arrived in the hospital. Tiba is 5 years old and was transplanted last October and she does very well. She came for the biopsy. Sem is 11 years and still has her own liver and is here for a screening. We met Tiba’s dad last October and today her mother Olga and also Susan the mother of Sem. Olga created the website www.galgangatresie.nl which we used a lot to gather information when we found out that Quint had billiary atresia. We are very thankful that she did this, and we are sure with us many others.

With Quint it goes well today. The doctors are satisfied as well. Very slowly every day a little better. Every day the milk volume is increase a little. The antibiotics through the IV have stopped. This week the nutrition through the IV will be reduced also.

Grandma and Melissa are arriving this afternoon. Usually around 1 we close the curtain for Quint’s nap. For him to fall asleep it has to be dark and we have to pretend to be asleep also. If not he does not close his eyes. Sometimes he sleeps quicker than other times.

Our two visitors arrived later than planned. They were stuck in slow going traffic. But they are here now. Melissa was happy to be here again. One because she was with us again. And two because she could play with the NintendoDS again. Because of their late arrival we could not do that much anymore. I will sleep with Quint in the hospital and the rest in Roseau.

Quint sleeps well through the night. He only sleeps very late.

 

The past few days went by quietly. The visitors left on Tuesday so Wednesday was very quiet. On the TV we saw a little bit of the Queens day celebration but here in Belgium you did not notice anything.

Friday morning the IV had to be changed. On Wednesday already it showed some problems but according to the anesthetist it worked well enough but on Friday morning it had to be changed. This IV is placed in a deep vein between shoulder and chest. Quint still needs this because many medications and nutrition is given through this. To place the IV Quint is given a light anesthesia, so he does not feel anything.

In the mean time the feeding goes well. He gets now 10 ml per hour through the feeding tube and takes it well. He also gets some medications through the mouth and other through the tube. Despite this he still does not eat. He does swallow with a little protesting his FK medication and his zovirax also goes well. He also gets some medications which eventually will stop, these we give through the feeding tube. Quint still has diarrhea and also for this he gets medication.

For the rest Quint is very happy. He also started talking again. Mama, Papa, Opa and his new word oh ja?? The whole day he says oh ja?? Grandma stayed over a couple of nights and she says this a lot so he listened very well. today we took Quint outside for a while. It is nice weather.

Today we also heard that grand mom is again coming tomorrow with Melissa. Melissa still has vacation until next week Monday. First they wanted to come next weekend but changed their minds.