In the morning we had breakfast and went to Quint. My mom has already slept at Quint’s side for 4 nights. She wanted this so we had a chance to have some normal nights for once. Later today Granddad will come to pick up the grannies and Melissa. They will go back to The Hague.

The grannies went sightseeing in Brussels. My mom had not seen ‘manneke pis’ and ‘miss pis’ yet. So they went to have a look. On the way back it they were waiting for the metro at the busy platform. And when the train arrived ‘warme oma’ was a little late getting into the train and was left behind. The other grandma did make it onto the train. So they lost each other. Luckily they both knew where the hospital was and they both arrived again later in the afternoon.

In the afternoon Monique, Rick and Jacky came to visit. Quint just started his nap, so we were able to go out for lunch with them. After this we went back to Quint who was just waking up. A little later Dr. Sokal came by with a short explanation about the intestines of Quint. He is not too worried about the diarrhea. After that Dr. Reding and Magda came with all the other doctors. First they had a long talk with the Greek boy and his parents. Yesterday he had his biopsy and for years it was going well. Now it was discovered that he has a little fat in his liver. He has to watch what he eats and has to exercise more. His mother was shocked with this news and explained that her son is very stubborn and loves food. Now they have to come back next year again i.s.o. two years for the next biopsy in order to keep a close eye on the condition of the liver.

After this Dr. Reding came by Quint and explained about his intestines. Quint has a lot of diarrhea, it is actually only water. As a precaution they are starting the antibiotics tomorrow to get rid of the bacteria which are in the small intestines. This will be given through the feeding tube for 5 days. Furthermore the milk will be adjusted. First the consistency will be increased after this the volume will be increased. Each time they will see how Quint will tolerate the change. And if it goes well they will continue this way. Mentally Quint is very happy and is laughing more and more even at the doctors and nurses except for the kine (physiotherapist). When he or she enters he starts crying immediately.

After the doctors visit, I went for some ice-cream with family Hozee and Melissa. Oscar stayed with Quint. When we got back the ‘lost’ grannies were back as well and a little later granddad entered also. So it was very busy in the room. To clear the room we went with the hozee’s and Melissa to a playground. The weather was not good but we had a nice walk. Before the Hozee’s went back home we ate something. Monique, Rick and Jacky thanks for visiting.

Later in the evening the others left for The Hague also. Grandparents thank you for you visit and the good care you gave Quint and are giving Melissa. We really enjoyed it.

 

Shirley’s mom slept again at Quint’s side, so once more we had a relaxing night in Roseau with ‘warme Oma’ and Melissa. In the morning I had an early breakfast, after which I released my mom at Quint. Quint slept well but still has the diarrhea.

Today Quint got a neighbor. A boy of 9 years from Greece. His parents were very fluent in English and had already talked to my mom before I arrived. His name is Georges and was transplanted at 5 months of age. My mom asked if he had a reasonably normal life. His mom answered that he does not have a reasonably normal life.He HAS a Normal life! He does everything just like healthy kids. He always takes his medication and all goes well. The boy himself does not know anything from the transplantation.

He came for a biopsy of the liver. Until his 5th year he came for this every year and thereafter every two years.

You get good hope with stories like this. Of course there are children who need to come back with some problems, but we hope that Quint can lead a normal life.

My mom went back to Roseau to fry some eggs for Oscar, Melissa and ‘warme oma’. Because she is so good at this.

Around noon I went with my mum to the city for some shopping. Oscar, Melissa and ‘warme oma’ stayed with Quint.

Dr. Reding came by when Quint was asleep. We told him about the diarrhea. He told us that they had increase the salt intake and that they will start a new antibiotic. He suspects that there may be certain microbes in the intestines that can cause the diarrhea. Also the milk quantity will be increased. Quint tolerates the milk so far.

In the morning we had breakfast with Melissa after which we went to Quint and grand mom. Grandma slept reasonably well. A few times Quint woke up and still has the watery stools. So she had to change him often during the night. Even some times the bed linen. The nights are always broken.

Today the other Grandmother comes as well. For days Melissa has been asking for her already. When is ‘warme Oma’ (the nickname for grand mom from Curacao) coming. Ronald called that she was arriving at 1441 at the central station. Shirley’s mom stayed with Quint and Shirley, Melissa and I went to fetch ‘warme oma’ with the metro. We were a little early so we had time to eat something.

Melissa was very happy to see her grand mom from Curacao after 1 year. And of course she knew that she would get presents. A little later we all went back to Quint. And at then it was present time.

Later in the afternoon I went for a walk with the two grannies’ and Melissa. Melissa wanted to show them the blowing flowers. After the walk we ate the bami which grand mom brought with her last Thursday.

Grandmom, Maud, Grace, Rob and Marsha thank you for the nice gifts for Quint.

In the morning we had breakfast with granddad and Melissa after which we went to Quint and Grandmom. Quint had a restless night and has diarrhea. Today they will start with a little milk 2 ml per hour.

Today we will go out with Melissa. Grand dad and Grand mom will stay with Quint. We went to Walibi that is a 30 minute drive from the hospital by car. The weather was very nice and we had a very good time.

In the afternoon we were called that Quint had to change rooms. Quint now lies 2 rooms further room nr. 929. Luckily we do not have to share the room with someone else. The past week we had the room to ourselves, this is nice because the rooms are not so big.

In the evening we the three of us had some dinner. Grand mom is sleeping again at Quint’s and Grand dad will go back to The Hague and will return on Tuesday to pick up our visitors again. Tomorrow the other grandma(oscar’s mum) will come as well.

The milk has started and for now goes well. Because of his diarrhea, Quint still needs to be changed often.

Yesterday evening the grandparents came with Melissa and slept with us in Roseau. Melissa stayed with us and the grandparents left again. Grandpa has a doctor’s check for his leg. Later today they are coming back.

Shirley slept at Quint, and after Melissa and I said goodbye we went to Quint. They slept well this night and all went well. Medically there is no news to report.

I took Melissa to a playground. On the way over there Melissa was looking for ‘blowing flowers’. These are flowers when you blow at them all leaves fall off. Melissa likes that. Even more, throwing the stem on my head.

After about 1 hour we walked back, again looking for the flowers.

When Grandpa and Grandmom were back again they stayed with Quint. Shirley, Melissa and I walked to a different playground.

Grandma brought pancake mix with her which was cooked in the evening and we had Dutch pancakes.

Grandma slept at Quint that evening and the others in Roseau. This was very nice for us, a normal night rest.

The last few days nothing much happened. Quint’s intestines have to recover so that we can try the normal feeding again. We don’t know yet when this will begin.

After a few restless days Quint finally slept well. He even took a nap yesterday afternoon. Only this morning he slided down on his bed and his feeding tube got stuck and was pulled out of his nose. So later in the morning it had to be reinserted.

Today a new x-ray has been made and probably in the afternoon we will know the result.

Quint is not so much afraid of the nurses anymore. He even helps out. Every 4 hours they come and check blood pressure, oxygen saturation, and temperature. When he sees them coming with the armband he willingly extends his arm out so the nurses can put it on. With the saturation he sticks his finger out and a small clamp with a red light is put over this. This measures the amount of oxygen in the blood. And when all is finished he sends them away again by waiving his hand. Nowadays he sometimes even laughs with them.

When it is not busy in the hallway we can take Quint out of the room into the hallway. Quint points then everywhere he wants to go.

 Today we again received getting well cards, one was from the collegues at my brothers work. Guys thank you for the card and support.

case Quint still had some pain. Luckily this was not the case. Later in the morning all drains and the epidural were removed. Only the feeding tube and IV are still left.

Quint’s stomach is again swollen. This still is as a result of the operation. But the doctors are monitoring it.

In the afternoon Quint got a visit from nurse Martine who cared for him on the Intensive Care. That was nice. Oscar had left for a while and Martine helped me transport Quint to the Radiology. Quint was expected there for an echo. On the echo there was a little fluid visible but de radiologist was not concerned about that. For the rest all looked ok.

Magda came by in the afternoon and at that time Quint had to cough and vomited a lot of slime. His stomach was emptied at that time and a lot of fluid came out. Between six and eight in the evening it happened again. Again a lot of fluid came out of the feeding tube. Luckily he did not vomit this time, but he did cough a lot. We asked a doctor to check him and she send him for an x-ray.

For this we had to go to the ER at nine. Nurse Sandrine came with us, and we did not have to wait. The x-rays were good. When we got back in the room we drank some tea after which Shirley left. Quint and I went to sleep.

Quint was very restless. His bed is angle upward on one side because this is better for the recovery. Also all the fluid will go down this way, so they say. To keep Quint in place a support is placed under his bum. But because he was so restless he starts turning and moves over the support down. Each time this happened he woke up, and I had to put him right again.

The night was very difficult. Quint had a lot of pain and therefore was very restless. Shirley had the feeling that the epidural did not work well. The dose was increased but Quint stayed restless.

With all previous operations, Quint did not get an epidural but morphine and dormicum and all those times we did not see Quint having so much pain. Plus this operation compared to the others was not as difficult. But for Quint (and for us) it is more difficult, because we see him in pain now.

In the morning I took over from Shirley who went to sleep after a difficult night. With me Quint took short naps and woke up in pain. After some comforting he fell asleep again. The anesthetist came by to check upon Quint and I told him that we think Quint has pain. He increased the dose given and if needed would give and extra painkiller. Quint also gets paracetamol. He also told us that dormicum is only given in the intensive care, because it requires constant monitoring. Morphine is not used because the doctors want to start the feeding quickly again and morphine affects the working of the intestines also.

After the increased dose painkiller Quint rested well. He also was awake for awhile without complaining. Does the painkiller work after all?...The extra painkiller has not been given yet.

Shirley came back around three. Quint was still sleeping. Later in the afternoon Quint was awake for some time. Sometimes he complained. The kine also came, but we, in consultation with the nurse, suggested to skip this for one day. Let Quint rest today.

Around 8 in the evening we got a visitor. Andre Joubert came to visit. What a surprise. I have not seen him for at least 12 years. Both of us have changed since, so I did not realize that it was him at first. Oscar was not in the room at that time, but came later and was also pleasantly surprised. We had a nice talk and Quint got more presents. A very beautiful bear and a big book.

Today Quint will be operated on. At what time exactly is not known yet. Somewhere between 10 and 1400. Quint slept well this night and is very happy. He does not know what will happen, and that is better for him. While we were waiting, I washed him and made his bed like every morning. When that was done we watched Teletubbies together. Later Shirley came with grandma and Thea.

Around twelve thirty we got the call that Quint could go to the operation room. Shirley and I went to the waiting room downstairs with Quint. I brought Quint further to the operation room. The anesthetist put Quint to sleep while he was in my arms. For Quint this was very nice, because he did not notice anything. When he was sleeping I put him on the operating table and went back to Shirley. Now we have to wait. We expect that it will take at least two hours if they don’t find any unexpected things.

To kill the time we went to eat something. After this my mother and Thea went to Woluwe. Shirley and I went back to the room. Once there we asked if the nurses had heard something already. But she did not. A little later she came back and told us that all went well and that they were closing Quint up. It was three o’clock.

It took more than 1 hour before we got the call that we were allowed to see Quint again. All in all it was another operation of three hours. At that time Shirley went to Quint in the sleep room. Around six they came back upstairs in the Ped. Ward.

Dr. Reding arrived a little later and told us that he first check the narrowing. He injected fluid directly in the intestine and that passed through normally. For this he did have to make two incisions. One is new and for the other he used part of the existing scar. Afterwards he reattached the two intestine parts. Now it is waiting for the recovery. And then the milk feeding can start again. Hopefully all nutrition will be absorbed now. And let us hope this was the last operation!

During the operation an epidural was placed through which Quint gets his painkillers. In the evening the nurses had to change the plasters which became covered with blood. There are two soft drains placed under the skin and these caused the blood on the band aid. For Quint this was very painful, because his skin is sensitive. After a lot of effort they finally succeeded.

Today it is research day. Yesterday it was too busy. We made sure Quint was ready early. After this it was waiting time. During the wait Shirley talked with the parents of Jan and Wendy for a while. These children are here for the annual checkup. Also the parents of Steven came by, they were on consultation. The call came around noon.

Then I took Quint downstairs. Quint had to lie on a table below a special x-ray machine. With this machine they can make x-ray video. You can view the video on a monitor. For Quint this check was very annoying. A fluid had to be injected into the intestine and Quint had to lie very still. On the monitor you could see where the fluid was flowing immediately. In total it took 30 minutes. For Quint this was 30 minutes crying.

Back in the room we had to put a new stoma pouch, because the old one had to be taken off for the check. All made Quint so tired that he fell asleep around one.

A little later Grandma and Thea came. They are sleeping over tonight. Because Quint was sleeping we all went out for lunch. After this we went back to Quint but he was still vast asleep. Grandma and Thea then went to the city center. We had to wake Quint around 4, otherwise he won’t sleep tonight.

Later during the day Magda came by and a little later the surgeon, Dr. Reding. He told us that the opacification was good, but there is a narrowing in the transition from the small bowel to the large bowel. Tomorrow the two intestine parts will be reconnected and he will check the narrowing. To check this, an incision will be made around the current stoma. And if needed also another incision will be made. This may be a new one or he may use the scar of left by the previous operations. Again a big operation. For now the operation will begin between 10 and 14.00.

Quint finally is active and happy again and it is then difficult to accept the fact that he has to undergo another operation and anesthesia. We hope that this will be the final one and that he will recover quickly. And hopefully we can leave the hospital for once now.

The liver is doing well and that is good to know.

Quint had a good night and the nurses did not bother him too much. So together we slept very well. Later in the morning Oscar and his mother came. Grandma is leaving this afternoon. Around 1330 they left for the central station. The entire morning Quint had a very good mood. The ward doctor came and told us that this afternoon they will again decide when to restart the milk feeding again.

Around 1430 Quint fell asleep. He nap began so curtains closed and quiet time. At 1615 the nurse came by followed by another patient who will be our roommate for the time being. The 3 year old will be operated on tomorrow afternoon, so the nights will not be quiet anymore. When they were installing our neighbor I did have a feeling that our stay here has been long enough. It is now time to go home. At least leave the hospital.

A little later dr. Reding came by. Tomorrow they hope to do a ‘opacification’ test of the large intestines. With this test they will inject a fluid into the intestines to make them visible on x-ray photos. With this they can see if they are good. If so the two intestines parts will be reconnected and thus the stoma will be removed on Friday. Quint is losing a lot of liquid through the stoma. And hopefully with the intestines attached again he can gain weight again. We have to be once again patient.pffff.

The milk amount was increased during the weekend from 6 to 8 and this morning to 12 ml per hour. Quint endures the milk good. But he did loose 1.5 kilo’s in 1 week. The doctors tell us that this is liquid. Results from taken samples showed that Quint was losing a lot of salt from the stoma. So today they increased the salt intake for Quint.

During the doctors round this afternoon de gastroentologist told us that Quint was given 200 ml Milk, but lost 900 ml through the stoma. That is too much. The intestines do not take in the nutrition. With the last operation a large piece of small intestine was removed and the functioning part that remained is too short to take in all the nutrition for the body. The doctor told us that they want to give some rest to the intestine and therefore the feeding has been stopped again. The hope is that in a few days they can start again and that they will work well then. Back to square 1.

Luckily none of this is affecting Quint’s mood. He is very happy and wants to do a lot. He likes to sit up and talks in his own way. From the physiotherapist we got a fitness ball on Saturday. Quint has to sit on this and then we have to move the ball around. This is good for Quint’s muscle development. I did this together with the therapist but Quint did not like it at all. The next day Shirley and I did the exercise together and Quint loved it. Today a walking seat was brought. Now Quint can sit and walk around. Backwards he goes very fast but forward is more difficult.

The past week Quint was in isolation, so we had the room for ourselves. Normally you share the room with two, for us it was very nice to have the space for yourself, and you can sleep a bit better in the room. Today we heard that Quint does not need to be in isolation anymore. So the chance is big that we get a neighbor. Today they will leave him alone, maybe tomorrow.

In the afternoon we got a surprise visit (for Shirley at least) from Heidi. The two of them went to Woluwe for lunch a little later. I stayed with my mom and watched photos, while Quint again took a long nap.

The ladies had dinner in the evening in the hospital restaurant, after which Heidi left again.

Heidi thank you for your visit and for the presents for Quint and Melissa.

 

Today Ronald, Gerda came with Grandma from Curacao for a visit. Grandma saw Quint again for the first time since about a year. For her Quint did not look too good. He did lose a lot of weight. Luckily nobody saw him at his worst. Quint got a nice and soft stuffed dog. After visiting Quint for a while, I went with them to Brussels for lunch. Quint got a chance to nap a little. Shirley stayed with him. After lunch we went back to Quint who just woke up.

In the evening grandma stayed with Quint and the 4 of us went for dinner. After this Ronald & Gerda left again for Amersfoort.

Ronald & Gerda thank you for you visit.

The morning went by quietly. In the afternoon a thorax and echo was made. Quint was pleased to get out of the room. He is still in isolation due to a microbe he is carrying. He always points to the door..that is the way out but he is still tied to the IV pumps so he cannot go there. But the thorax and echo is on a different floor so Quint can go out.

Magda also came by. It is now 3.5 weeks since the last operation and Quint’s scar has healed well. Today we can start taping the scar with micropore tape and that has to stay in place for a month. After this for two weeks we have to massage the scar with Widmer cream. This method apparently helps the scar look better with time.

During the night Tuesday on Wednesday the IV became blocked. All medication and IV nutrition run through this IV. During the night a temp IV was put in his arm so at least the medication could continue. So on Wednesday it had to be replaced. Because so many medications are running through it, the doctors have to put in a deep IV which has to be put in under anesthesia. This is put in one of the main arteries in the chest area. He also lost a lot of fluid through the stoma so his weight was a lot less than the day before. You immediately notice that by looking at his thin arms and legs and his face. In the afternoon they started with the milk feeding through the stomach. Let us hope this time it will work. then we are on the right track.

During the day I went with Merel to Woluwe shopper center. Oscar stayed with Quint and went out for a walk later in the afternoon. I made Chili and salad for dinner which I ate with Merel. Oscar and Teun ate later. It is nice that Teun & Merel are here as well. As it looks now they may be released from the hospital on Friday.

Grandma slept at Quint this night and we in Rosseau with Melissa. In the morning we had breakfast together after which Oscar & Melissa went to a playground. I stayed with Quint and my mother. Quint slept well and the day went by uneventful. Quint gets 2 times a day kine (lungmassage)

In the afternoon Grandma and Melissa went back to The Hague. It was a very nice weekend. With the daily doctors visit in the afternoon. Dr. Reding came by and he want to cautiously start the milk feeding with 2 ml per hour. Quint will also get a medication to stimulate the intestines.

Teun came by in the afternoon. He had a school concert in Sittard and met Desiree Offermans, the mother of Stephen who has the same as Quint and Mees. She gave a card and present for Quint with Teun. We do not know them personally but through Teun & Merel they heard about Quint.

Teun also received  a big bowl of pasta and fruit salad, which all four of us enjoyed. Family Offermans thank you for your gifts and dinner.

Melissa, Grandma & Shirley slept in Roseau. I stayed the night with Quint and he slept fine. His temperature is higher again, and stomach swollen again. But he is in a good mood and does not look sick.

In the morning I did the ritual with Quint, while the ladies had their delicious Roseau Breakfast. Around 11 they entered Quint’s room. We stayed there for a while and then we went out with Melissa. Granny stayed with Quint.

We took the Metro and bus to the children museum. The theme was the color red. This museum is special for children and there are all interactive showcases. It is a 3 storey building and was very entertaining. Melissa, together with other children baked cookies here.

Heleen also came to visit Quint and Granny. On our way back we bought pizza’s which we all ate together with Merel & Teun. Grandma slept with Quint.

 

 

Sunday the three of us first had breakfast. After this we went to Quint, so grandma could take a shower. When she was back we went to the Atomium with Melissa. This is a monument built for the world expo of 1958. From the outside it looks very interesting, and we were very curious how the inside would be. This was a big disappointment. The only nice thing was the view from the top ball. Afterwards we ate something and went back to Quint.

While we were out with Melissa, Quint received a visitor. Stephan Roes a good friend of ours was in Brussels and came by for a visit. Quint got a nice stuffed dog, with a real big head and a shirt. Melissa also got a nice shirt. Stephan, sorry that we were not there ourselves but thank you for your visit and gifts.

In the evening Teun came by to ask if we wanted to join them for some pasta. Lucky us. Now grandma did not have to bake herself an egg. To be polite I also joined and ate some delicious pasta. Afterwards Melissa and I went back to Roseau to put her to bed. Shirley stayed a little longer and came a little later. Grandma is again sleeping with Quint.

Just before Melissa and I left, Quint found it really necessary to pull out his feeding tube. It took awhile before the new one was put back. The good thing with Quint’s is that he takes a few medications by mouth. Unfortunately this is the only thing he takes. Only his dummy he puts in his mouth.

On Wednesday & Thursday nothing special happened. During the day Quint wants to sit. He has had it with lying around. If he had his way he would stand up and walk away. One thing is certain, he knows what he wants. Pointing at things, sitting on your lap, or on the edge of the seat swinging with the legs he likes as well.

During the day he sleeps little. And also in the evening he still sleeps late. We cannot get him in a normal routine yet.

Wednesday Quint was given a little milk, but this does not digest very well. After a couple of hours his stomach is emptied again with a lot of liquid still in it. On Thursday the milk was stopped again.

On Thursday the surgeon explained that the overflow from the stomach to the intestine may be too narrow. Normally some fat attributes to a good flow from stomach to intestine. But due to the IV feeding for the past few weeks that may not be there anymore, which causes the narrowing of this duct. To see if this is the case an echo will be made tomorrow. Today in the afternoon a x-ray was made and the lungs are doing a little better than before.

This afternoon the echo was made. Now we have to wait for the results. If the narrowing is there, a special tube will be placed where the feeding will go through directly to the intestines. This is a temporarily solution and it is expected that when Quint gets stronger the fat will grow back and the tube can be removed again.

                                                            

We just arrived at Quint when we were told that he will be going to the 9th Floor, back to the Pediatric ward. Luckily we were prepared for this over the last few days and most of Quint’s stuff was already put in bags. We only had to remove the get well cards from the wall.

45 Minutes later, the nurses from upstairs came to get Quint. We have the same room as before US 927. Because Quint carries bacteria with him he needs to be in isolation, so we have the room to ourselves.

Quint was awake the entire day. He wants to move around, either walking or crawling but this is not allowed. So we let him sit. We were hoping that by doing this he will get tired and go to sleep at a decent time. But he had a different idea. He stayed up until 2345.

At the end of the afternoon Heleen came by, she cooked Indonesian food for us. We had a very nice dinner together with Teun & Merel. They are here for the initial screening for a possible liver transplant for their son Mees. Shirley and I took turns in eating because Quint did not want to sleep. The food was very good and the company pleasant. Heleen thank you. Too bad you are going to Spain again. You can cook more often for us!