Today we expected that Quint would go to the Ped. Ward. But Dr. Clement told us that yesterday a new medication had been started to reduce the amount of liquid in Quint’s intestines. He wants to wait until this shows results.

Tomorrow the milk feeding will begin cautiously and it is expected that Quint will then move either tomorrow or the day after to the Ped. Ward.

He has so much energy and fell asleep at 11 at night. He knows that when he is sleeping that we will leave. For Quint it is better to go back to the Ped. Ward, then one of us sleeps over with him so he doesn’t have to be afraid anymore.

The grandparents had a nice time with Quint. They entertained him very well. For us it was very nice to be with Melissa again.

We celebrated our anniversary late at night with a piece of ‘maison Kelder’ cake. For the first time in 4 years we are together on this day.

In the afternoon Janny van Kuijen and her friend Marieke came by. Quint got a very nice phone. Thanks for you visit.

Today it goes very well with Quint. The breathing tube has been removed and he breathes himself without supplemental oxygen. This is again a nice sight. He can move his head around again. Now he can totally check out the nurses.

He found his hands again and claps his hands often. Also his interests in his toys are coming back. Making sounds is still not possible, having a tube in your throat irritates the voice and this has to recover now.

His abdomen still is big, but soft. Through the stoma Quint is still losing lot of liquid, this has to reduce more and then the solid stools have to start. And the normal feeding

Yesterday was a quiet day with Quint. He still has the breathing machine but it is set to a mode where Quint has to breathe himself. Yesterday afternoon he vomited a lot. The feeding still goes over the IV and this will remain for some time. His abdomen is still big. The surgeon came by and told us that Quint’s recovery will go very slowly and we have to be patient.

Today in the morning we moved to another room in our guesthouse. We are now in an apartment with two rooms. Now the grandparents and Melissa (or others) can stay over. No need for day visits anymore.

De head doctor, Dr. Clement together with Magda came by. Tomorrow the will remove the breathing tube. It is expected that Quint will continue breathing himself. We were worried that he had to try the breathing mask again, but that is not the intention.

Past few days it was Quiet. Quint is doing relatively well. For a few days now his temperature appears to be under control. The doctors tell us that blood tests show that the infections are better under control. Mentally Quint is doing very good and we see the old Quint re-appearing. He watches TV, reads his books and plays with his other toys. When he is done, he throws everything out of his bed.

Behind his right lung there still some fluid, so it is better for Quint to lie on his left side, but he does not want this. So we try our best to put him back on his left side each time he rolls back.

Sunday afternoon Heleen came to visit. She called the IC to see if she could come to Quint’s room. The nurse who answered misunderstood her and came to our room in a light panic..YOU HAVE TELEPHONE DUBAIQue? We asked. Nobody knows the nr. For the IC in Dubai. When I answered the phone it was Heleen. She had asked the nurse if she could come to visit Quint, the boy from Dubai. I then went to get her to see Quint.

She brought presents for Shirley and Quint, but none for metsssss!

Later in the evening Shirley and Heleen went out for a drink. I stayed with Quint until he fell asleep. After this we all went for diner. We wanted to order desert, when it started to snow and Heleen had to leave. Maybe next time

Monday was a quiet day.

Quint was doing just like yesterday. He was happy that we were there again. For the nurses he still is very afraid.

Janice is coming to visit today. Some time ago we already mailed about this. A visitor from Dubai, nice! We did not know the time when she would arrive so we waited. We were at Quint for only one hour when we got a callthey were in the lobby. Janice with the entire family. What a surprise. We had something to drink first. After this Kees, Janice and Donny took turns in seeing Quint. Calvin stayed in the lobby with the grandparents.

Donny found everything very interesting. Quint found Donny also very nice and was not afraid of him. For adults Quint is a little afraid at first because he does not know if they will do something with him. Later Kees went to the shopping mall in Woluwe with the kids and his parents. Janice stayed behind to chat. When Kees and Donny left, Quint started crying. Donny comforted him and then it was ok.

Later Janice and Shirley also went out for lunch and I stayed behind with Quint. He took a short nap. Hopefully he goes to sleep at a normal time tonight.

Family de Wijs returned to Holland around 1600. Thanks for your visit, we enjoyed it very much.

Shirley went to the hairdresser today. After 2.5 months it was time again. As usual with women this may take some time.

All nurses at the intensive care are very nice, but with two we have build a closer relationship. These two speak Dutch very well and therefore the communication goes much better and they are very caring for Quint. These are Martine and Sabine. Martine brought some Easter decorations for Quint’s room and this looks festive. Quint is already 5 weeks in the IC and you get to know the ward and the nurses.

Quint was doing ok. He was awake and happy to see me. The drain that was attached near his liver did not survive the night. Drains are kept in place by a stitch to the body. This wire broke and the drain had to be removed. This is not ideal, but it will be monitored.

I read a few books with Quint and for some time he played with his Misty TV. After this it was again Teletubbies time.

In the evening Quint did not want to sleep, so we finally had to leave around 2300.

This morning Quint was happy to see us. He moved a lot but did want to play. He was watching Teletubbies, read some books, and watched his misty TV. Later he turned into the Quint of yesterday angry and restless. And all the toys were thrown out of his bed again.

The grandparents together with Jan & Jannie visited in the afternoon. They took turns to come visit Quint. Later I took them to Woluwe shopping Mall for some coffee. Shirley stayed with Quint and he sat on her lap.

We returned around six thirty and again took turns at Quint. Since he did not sleep the entire day, for the first time he fell asleep early.

Around nine thirty we all went out for some diner. It was a very nice day and evening. Jan, Jan, Bert & Elly thanks for diner and your company.

Two of the three drains have been removed today. So only the one near the liver remains. So he looks a little better.

In the afternoon Karin & Monique are visiting. A very nice change. After they visited Quint, Shirley went to the city with them for lunch. They also visited the church for good hope and put a few candles there. One for Quint and another for all the sick children we know. Hopefully they will get better quickly now.

Shirley returned around six thirty after a great girl’s afternoon out. Quint slept around 10 in the evening and afterwards we left.

According to the doctors and nurses Quint is doing a little better. We do not see that. He still has a high fever and a big stomach. We will believe this when his stomach is becoming smaller. Then we know he is doing better.

Moving a lot and the mood Quint is in are good signs according to the nurses. Also his intestines are slowly starting to work. This is also good.

Quint sleeps a lot today. When he is awake he is very rebellious. He doesn’t want anything. He throws everything out of his bed. His temperature was steady at 38 the last days. But during the evening this crept up to 39.2. He has again high fever.

Also a different bacteria was found, so the antibiotics have changed again.

Quint still sleeps a lot today. The Fever still goes up and down. The doctors changed the antibiotics again. Because of the big operation it is possible that bacteria get into the blood more easily. For the moment it is not yet seen in the blood and we have to wait for the results of the cultures.

One of the Surgeons came by, and explained once again what was done with Quint. She also answered a few questions we had.

This morning we called the IC to see how the night went with Quint. He slept well, but they did give him some painkillers during the night.

Later in the morning, we arrived at Quint and he was still awake. He was very calm and was looking around. The nurse told us that while she was washing him he played. He slept a lot during the day.

This morning on our way to Quint we met one of the surgeons in the hall.  While walking to Quint she told us they had decided to operate Quint again. His intestines are still swollen and the current test did not give a clear picture of the problem. So Quint will be opened again to see what is wrong with the intestines. This is Quint’s 4th operation in 6 weeks time. We know that the doctors don’t have another choice. But we feel so much for this young child and as a parent it is very hard to remain positive and to be there for him.

They told us that around two they would come and fetch Quint. This became 4 o’clock. The anesthetists  came in Quint’s room and wanted to put him to sleep here. Quint however refused to go to sleep, even after a double dose was injected into him. He held on to his misty TV and each time we wanted to take it away he pulled it back. He was drowsy and we all walked to the OR.

When we arrived on the IC this morning, Quint just arrived back from the scan. The nurse told us that the scan could be done this morning and so they did. The ultrasound was also made. Both results did not show an abscess in the intestines.

Medication like morphine can also affect the working of the intestines. But the dose Quint was receiving was reduced over the last few days and today it was stopped. So this is also excluded as a cause.

Still there is a little fluid behind the lungs. To be sure that this does not cause the infection the doctor tapped some fluid for investigation. For this Quint again received some sleeping aid. As a result he sleeps a lot again.

Magda also came by. She told us that she dreamt about Quint this night and because of this she woke up constantly. the first thing she did this morning was to see how Quint was. That was at seven this morning. She also told us that it had been a long time since there were so many complications with a liver transplant. Last year none and now there are 2 at once.

Later in the afternoon the doctor came by and he told us that they found traces of the CMV virus in Quint’s blood. For this he gets now Ganciclovir as medication. This is ‘possibly’ a cause of Quint’s recent problems.

Today it is about the same story as yesterday. Quint slept a lot during the afternoon to wake up in the evening. Again we left late.

The fever still is not under control and the doctors are still searching for the possible cause. They are focusing on the intestines because they do not function properly. Quint has a lot of fluid in his stomach which does not flow to the intestines. This night he vomited and the nurse use the feeding tube to drain the excess fluid from his stomach. After this he slept well.

Today there are no changes and not much happened. Quint is very tired and sleeps a lot. In the afternoon the doctor came by and explained some items. Quint’s pain relievers are being reduced but he still is getting the medication to calm down. The doctor said he does not have the impression that Quint has pain, but he is so much more afraid of the nursing staff that is the reason for giving the medication also the reason why Quint is so sleepy.

The doctor explained that Quint will recover but will take time and we have to be patient. It will be some time before we can see his recovery. Quint still has his big stomach and the problems with the intestines. Because of this he still gets all of his nutrition by IV. Only when the intestines have recovered they can start the normal feeding. Also because of his stomach he is still on the breathing machine.

Quint was awake in the evening and we stayed until late.

The days are long in the hospital but we are glad that together we can be here for him.

Quint started to cry when he lost the nurse from his sight. She had to change some medication at the infusion pump and therefore Quint could not see her. For Ronald this was a difficult moment. After this Gerda visited Quint. When Quint slept, we went to get a drink and to talk.

In the evening, Quint was very awake. Shirley stayed with Quint and I went to get something to eat with Ronald & Gerda. At around eight, they drove back home.

The nurse told us the Quint became very restless after five in the morning. He is very afraid of the nurses. So bad that it affects his breathing this of course is not good. When the washed him they gave him something to calm down. When we were with him he was very sleepy. The fever was fluctuating between 37 and 38 degrees.

In the afternoon the grandparents came. They saw Quint awake, but for the rest of the afternoon he slept. Grandpa and I stayed with Quint. Shirley and her mother went out.

This time our feeling was correct and Quint could indeed not breathe himself yet. You could see this by looking at the monitor for the oxygen distribution in the blood. So it was decided again to put Quint on the breathing machine.

When the breathing tube had to be placed back we had to leave the room. We went to a small waiting area in the hallway. A little later the father and mother of Camilla, another girl from Russia who received a transplant mid February, joined us. She also has complications. We were talking in broken English when I saw a nurse rush into Dr. Clement’s office. I immediately had a feeling something was wrong with Quint. Luckily our conversation with our Russian friends was interesting so we did not notice that everything took longer than told.

When a doctor came to get us she apologized for the delay, there were some complications with inserting the tube.

Quint was given extra medication to help him sleep better. For the time being,he stays on the breathing machine.

Dr. Reding also came by to see how he was doing. He told us to be patient until the results are in from the cultures. When they have positively identified which microbes are causing the fever they can better combat them.

The operation went well yesterday. It only took longer than expected. 5 hours i.s.o. 3. The waiting was terrible. At seven we called to see if he already had returned but then they said another 2 hours. Again we had to wait. At nine we were allowed to see Quint. He is again on a breathing machine but that is normal after an operation near the lungs. That will be taken away tomorrow perhaps.

The abscess was location behind the liver. Between the liver and diaphrame (breathing muscle, separating chest and stomach area). The doctors had difficulty getting to it that is why it took so long. They removed and cleaned everything.

Quint was still very sleepy but was resting comfortably. The doctor told us what they did. They took cultures of the abscess and blood and in 5 days they know which bacteria was growing here, and if this indeed is the cause of all the complications.

We woke up early today, had a quick breakfast in order to be at the supermarket when it opened. That has to happen as well. Since we can only go to Quint at 11 we wanted to see if we could make it. We had to take the metro and at 2 stops there is a supermarket.

When we arrived on the IC, Quint was sitting on Magda’s lap. He was relaxed but kept a close eye on Magda. A little later he changed laps from Magda to Shirley. Here he eventually fell asleep and slept for about an hour.

Magda told us that during the doctors meeting it was decided to operate again on Quint to cleanup his stomach area. On the echo they saw an abcess. This can be caused by an infection. It does not show in the blood because it is covered by surrounding tissue.

Once again they assured us that the liver is functioning very well and there are no signs of rejection. And because of the good functioning Quint can take so much.

We worried a lot yesterday and today. Because Quint’s Fever does not subside and the doctors do not know what the cause is, they started to think about a possible rejection of the new liver. Yesterday one Doctor already pointed to that direction and this morning a biopsy was taken of the liver to know for sure. So for us it was waiting the whole day for the result.

Quint is in a very bad condition today. He complains a lot and has a high fever. Also his breathing and heart rate are very bad. We do our best to calm him but it is very difficult.

In the afternoon Merel, Teun and Mees came by. Mees is a boy with the same disease as Quint. We met them in the AMC where they both had their Kasai procedure. Today they had their first consultation with Dr. Sokal. It was very nice to meet again and talk about things.

In the afternoon Quint’s breathing became heavier, so a thorax was made. The result was the same as in the afternoon. Around six the doctor came back with the result of the biopsy. There is no rejection. This is good news although the cause of the fever is now still unknown. Hopefully it will be discovered soon.

Quint was sitting in a baby seat this morning. A nurse told us that the nose tube for the bipap machine will be replaced later. The fever is still there and the milk feeding has been stopped because the digestion is not good. Upon asking how they know the doctor told us that every time before the Kine (lung massage), the stomach is emptied through the feeding tube and when this is done a lot of milk still comes out. He told us also that the intestines are almost back to normal. He did not have an explanation for the fever. Today Quint looks sick again.

After the nose tube was remove, Quint sat on Shirley’s lap. He even slept for a little while. After this they wanted to put a nose mask instead of the tube because this was easier. We tried but it did not fit quite right and since it had to stay on for most of the day plus that we did not like it we had it changed back to the tube. The nurse was very understanding with our concern. The nose tube is much better for Quint because he can look around, watch TV, read books. This is impossible with a cap.

This morning we had to wait a short while because Quint had to be aspirated (slime is then sucked out). We found it a bit strange because we see this daily. During the day, Quint was playing nicely and we read some books with him.

Mentally Quint does very well, he is active. Now that the ascites slowly gets under control he looks again very skinny. Before the operation he had thick legs and arms.