This morning when we went to Quint he was lying comfortably watching TV. The cleaners were busy in his room so he had to keep an eye on them. He did not cry when we arrived but were not allowed to leave anymore, if we tried he would start crying.

His temperature is high again today, the doctor said that they found fungi in his airway and that was the only logical explanation for the fever. Quint now gets medication for this also.

Quint was very quiet and played at times. He still refuses to take his afternoon nap. Also his head was constantly to one side. At the end we ended up putting a rolled up towel to the sides of his head to keep it straight. It is difficult for him to keep his head straight with the nose tube.

Finally we left around nine thirty even then Quint had his eyes open. It is difficult for Quint to fall asleep. Normally for this to happen it has to be completely dark. In the IC this is not possible, outside the room the light always shines very bright until nine fifteen when they are dimmed a little. We think this also keeps Quint awake more.

Melissa was happy to see us after two and a half weeks. Luna ran a little too enthusiastic towards Oscar and fell on the ground. She shed a few tears but Oscar got her to laugh again shortly after this. Because we are only allowed at Quint’s after 11 we first drank something and talked.

When we arrived at Quint, Magda was also there. Quint was looking good without his nose tube. His stomach is still big but the fluid in his scrotum has reduced a lot, slowly we see some improvement. Because Quint was looking good we asked if he could get some visitors and that was not a problem so we let Robin & Melissa come and a little later Linda, Luna and Melissa again. They also said that Quint was looking good and Quint liked the visit as well. Today Oscar is going for a nice day out with Melissa and them. For a moment something else than the hospital. Yesterday it did me good also.

When they left Quint’s room he started crying. He did not like that his visitors were leaving. I could not leave the room for the whole day when he even had the tiniest impression that I was leaving he started to cry. Yesterday Oscar had the same thing. In the afternoon he got his lung massage again and the physiotherapist took Quint on her lap. He did not like this but it loosens the slime and afterwards he can breathe better. At 1700 he got his nose tube for the bipap again. Quint was awake the whole day and although he was very tired he still was wide awake at 2100. The Night nurse began her shift and Sabine, a very nice nurse who also speaks Dutch very well put Quint in a comfortable position. At that time we could leave without him starting to cry.

Oscar had a nice day in Brussels. Melissa and Luna cycled and went on the swing. They saw ‘manneke pis’ and took turns sitting on Oscar’s shoulders. They ate Belgium fries and saw the chocolate fountains in some shops.

Robin and Linda thanks for coming by with the kids. We really enjoyed your visit.

After comforting him he calmed down. The nurse also came to have a look why he cried. She told us also they he played nicely. He had already received this morning’s lung massage and every day the nose tube has to be changed and that time will be used to get him breathing normally again. Every day a little longer. At the moment it is better for the lungs to be assisted by the ‘bipap’ machine, so they put the tube back in the afternoon.

Monique and Karin will visit today. They saw Quint for a little while and then left with Shirley for lunch in a close by shopping center. Hopefully Shirley can relax a little and put her mind on something else.

The whole afternoon Quint was very relaxed. He played, watched TV. He only refused to take his nap. At times you saw him faint away only to open his eyes very quick again to see if I was still there. I did not want to leave as long as he was awake. The two times Shirley left earlier he started crying. He does not want us to leave today.

Shirley had a nice shopping afternoon with Karin & Monique. They talked and relaxed.

Karin & Monique thanks for visiting and for your company.

Afterwards Quint was very sad. He is very afraid for doctors and nurses especially when many of them are in his room. He know then that something is about to happen and he starts crying.

Around two we had to leave again because the oxygen tube would be removed. The breathing machine will be stopped, but Quint has to go on the bipap machine again. In the beginning he had this as well with the cap. Now instead of a cap the specialist chose another tube through his nose. But the machine does the same. It is still not nice to look at but for Quint it is better this way because he is still recovering from the wounds on his face the mask causes.

When we got back Quint was again angry with us and again very sad. And because the breathing tube had been removed he could make sounds again. He let us know he was not happy with a lot of crying and peeping sounds. It took a long time before he got used to the new machine. Around six he finally settled down enough that he started to play with his toys and started reading his books. He also talked a bit to mom.

He fell asleep very early this night.

We were allowed to go to Quint at noon. Every time when we want to go to Quint we need to call to see if it is possible. And every time when they say we have to wait, we think that something is the matter.

This time it was not like that. They put in a thermometer wire through his nose. Now his temperature is monitored constantly. Quint did not have a fever the entire day, you can easily see this now on the monitor. With the reading of the monitor we are becoming very proficient.

Quint’s stomach is the same, there is also a lot of fluid now in his scrotum which is very swollen now. This is very painful for him each time we change his diaper. This is very sad.

Later during the day he was relaxed and enjoyed the music played on the TV. He even clapped his hands and clipped his fingers while looking at us. For a moment we saw the old Quint again.

The day progressed quietly and Quint fell asleep early.

No changes today in the general condition of Quint. He still has his swollen stomach, still angry with us and he still pushes us away. The nurse told us that in the morning he played very nicely and that all other nurses were looking through the window how nice he was playing.

In the afternoon grandma came by because she wanted to see Quint. After the transplant she only saw him once. After this she was sick and it took a while before she was better and able to come again. We preferred not to receive visitors on the intensive because Quint doesn’t look good, but we couldn’t hold grandmother away anymore. On the intensive care only direct relatives are allowed to visit and then only for 10 minutes. Luckily nobody really bothered and she was able to stay a little longer in the afternoon as well as in the evening.

Grandma was brave but we know that she must have been shocked by the sight of Quint. We also see it, but deal with it on a daily basis. She brought some nice cards from Melissa’s class. All parents and children wrote something nice for Quint. The class made a green poster with all ladybirds on it. Each ladybird represented one of Melissa’s classmates. We put all cards (also the ones from before) up on the walls of Quint’s room and all looks very cheerful.

It is very nice that so many people are thinking of us and would like to thank everyone for the comments, well wishes in the guestbook and for the cards and gifts sent to us here.

Today Quint has a bad temper. He does not want anything in or near his bed, he even pushes us away. He is done with everything. He wants to move but can’t, because he has so many lines and mainly the oxygen line.

The drain is not working since yesterday afternoon. So again an echo is made and this did not show that much fluid in the stomach, but the intestines are still swollen. A little later they removed the drain. 1 line less.

Quint has a rash on his arms, chest and face. The doctor thinks this may be as a result of a new antibiotic given today and will monitor it. Furthermore the doctor said that all cultures are negative so far and they do not know what the cause is of the swollen intestines which are causing the bloated stomach. Before we left this evening Quint’s stomach was even more swollen. The nurses will closely monitor this during the night. Tomorrow another echo will be made.

Today Quint sat on Shirley’s lap. This was not really comfortable for him because of the oxygen line and because of this it wasn’t for us either. It took a long time before he settled down a bit.

Another echo was made of his stomach but all is still the same. His stomach stays the same and does not want to get smaller.

He looked ok today, he was alert, played and was awake.

This morning the doctor removed the drain from behind his lungs because there was nothing coming out anymore. Later he told us that the x-ray did not show that much fluid anymore plus the drain was blocked. Because of this Quint was very sleepy. Around 1 he was awake. In the morning his stomach appeared less but in the afternoon it was again bigger. Sometimes it seems that Quint is gasping for air this is because there is too much slime in the lungs. This is loosened by the lung massage and then the loose stuff is vacuumed away. This is very unsettling for Quint but only last a little while. After this his breathing improves.

In the afternoon the doctor came by and told us that Quint’s condition is a little better. This is based on the blood tests and x-ray taken this morning. Unfortunately not every aspect is under control yet and they are monitoring Quint constantly.

Later Magda, the psychologist and a doctor from the pediatric ward came to visit. Suddenly it was very busy around Quint and he did not like this, all those white coats around him. We appreciated the visit.

After this Quint settled down and he even read a few of his books and watched his Teletubbies.

When we arrived at Quint the doctor was doing his paper work. After he was finished he gave us the latest on Quint. His intestines are now the main concern they are still very swollen. They do work because Quint has normal stools. Because he again had fever and the infection values rose a little this night they added another antibiotic.

They also discovered some fungi in Quint’s stool and they are now also checking for possible viral infections. We have to keep waiting.

Quint was awake a lot but is very restricted in his movement and that makes him sad. You notice this because his eyes turn red and look sad. The only thing you can try to do is comfort him but this is also difficult with all the lines attached to him.

In the afternoon we called Melissa to see how she was doing, and she is doing great. She was going swimming with her friend Luna and her parents. It is a big relief that she is doing so well and are very thankful to the grandparents, Robin and Linda for taking such good care of her.

In the evening Heleen and Hans came by and we went out for diner this was a nice distraction for us. Hans and Heleen thank you.

This morning Magda came by. She told us that the doctors had a meeting earlier this morning. Quint’s antibiotics appear to be working, but the help with breathing is still required. The fluid behind his lungs is being drained properly. The infection in the intestines is still the worse. The intestines and intestine walls are still swollen. This causes the bloated stomach which in turn causes the breathing problems because the lungs are pushed up.

The doctors suspect that the intestines were very sensitive for infections because the old liver attached itself to the intestines and the doctors had to cut that away. This could have resulted in inflammation of the intestine wall and thus the sensitivity for infections. They were also concerned of possible holes in the intestines possibly caused by cutting away the old liver. At this time they refrained from another operation to see if these holes are actually there.

Quint was quite awake during the day although he did dose off occasionally. He wants to complain but is unable to make sounds because of the oxygen line. Also he wants to turn on his side but is limited in doing this.

He developed a fever again in the evening, but luckily he responded quickly to the paracetamol given.

 

Yesterday evening we spoke with a doctor and he told us that the infection is still not under control and that they can not do anything for the time being untill they know for sure that the antibiotics work. All is connected to each other. It is expected that when the infection is under control that the rest will follow, like the ascites etc. We have to wait and see!

This morning we were called in Rousseau by the doctor who told us that Quint had been very unsettled this night and that they had to put him on the oxygen machine. He is being helped with his breathing now. They began with 70% oxygen but now that was back at 35%. Also the had to move the drain behind his lungs. He assured us that Quint’s condition is stable. It appears that the antibiotics are doing their work because the whole night Quint did not have a fever.

In the afternoon the doctor came by and told us that the x-rays of his chest showed that Quint had again fluid behind his lungs and that the moved drain is getting rid of this again. He showed us the x-rays and explained on them what everything was. The fever is under control and the infection parameters in the blood are coming down. Also an echo was made of his intestines and this showed that the intestine walls are thicker which are also signs of infections. Quint is battling 2 infections. His blown up stomach is not caused by ascites, but by gas in the intestines. Because of this the milk feeding has again stopped and all nutriants are given by the IV. He also explained that because of the fluids behind the lungs and the blown up stomach the lungs have less room to expand. With the help of the oxygen machine the lungs will eventually go back to their normal size but this takes time.

In the evening we want to stay with Quint untill he has fallen asleep. But every time when we wanted to leave he opened his eyes. He feels it. And we find it very sad to leave him when he is awake. Finally he fell asleep and we could leave. Hopefully everything remains stable this night.

Quint looked a little better today. When we visited his mask was off and he was breathing with his ‘normal’ oxygen line. His eyes were less swollen. Only his breathing was very bad. Because of the mask he has skin irritation on his nose and chin. Today they put plasters on that so it will not get worse.

It was really sad to see his difficulty in breathing, he was awake and eyes were open. Together we watched Teletubbies and he was again focused on this. Unfortunately the oxygen/blood levels were not good and he had to put on the mask again. This was better. Quint does not like this. His continued breathing heavily but oxygen/blood levels were good.

The rest of the afternoon he was very restless and wanted to turn on his side but that is not possible now. This is very frustrating for him and at those time you hear him complain. Luckily he calms down quickly and lies still again.

Today when we wanted to visit Quint, they were just cleaning him, so we were told to wait one hour. After more than 1 hour we returned only to be told another hour. After insisting on an explanation, I got a doctor on the line who told me they are changing the drain line from behind the lungs to a wider tube because a new thorax showed still some fluid behind the lungs. We again went away and came back later and finally were allowed to see Quint.

When we arrived at his side we were shocked. He was totally bloated. The nurse was putting on his breathing mask but that did not go well. The bottom was squeezing his lip, and I told the nurse this but she did not notice that and was irritated by my comment. So I insisted on speaking with a doctor.

The Doctor placed the mask properly and explained what happened to Quint. Quint has bacteria in his lungs which are treated with very strong antibiotics (3 different kinds) it is expected that these will start doing their work as of later today. Unfortunately the side effects of these antibiotics are such that Quint is holding a lot of fluid and thus is very bloated. In his mouth he also has wounds this is caused by a combination of the mask and antibiotics explained the doctor. Because of the bacteria het is breathing irregular and therefore needs the help of the machine longer during the day as to give the lungs more volume. Because there is again fluid behind the lungs, each time the lungs expand the heart gets squeezed and needs to work harder to circulate the blood, this results in a very high heart rate. Luckily the new liver is doing well.

For the first time since the transplant, we had it really difficult. And Quint has never looked this bad.

Today it would have been wise for the nursing staff on the IC to inform us and explain what was going on before we saw Quint. We may have been better prepared for what we had to face.

 
A positive thing is that from examination of the blood showed that the infection values are no longer rising. Let us therefore hope that the antibiotics work and the infections will quickly disappear.

Last night, we stayed with Quint for a long time. His breathing is still bad. Therefore the kine (physiotherapist) wanted again to try the mask. We had something like ... try it, but we have our doubts whether it will succeed. Quint is so afraid for any mask and becomes so strong that his breathing becomes even worse.

 
Fortunately, it was a very nice lady who helped Quint with the mask. First she had to remove his own oxygen line from his nose so the mask would fit. This made Quint also very angry. Before the mask was put on, the nurse gave him something to relax. At first it seemed that this did not work, when putting on the mask Quint started to scream, kick and hit we had to hold him down. Eventually, after a lot of reassurances, love and talking to him, he gave up and accepted the mask and eventually calmed down and fell asleep.

We stayed with him because we were afraid if he would wake up, immediately take off the mask in a panic attack. A few times he actually woke up trying to get his hands on the mask but went back to sleep after what sweet words. We were told that the mask should stay on for 1 hour, but they changed their minds and left it on the entire night. So we went out to go eat something and later we came back to see if everything was good. Fortunately this was so, he slept with delightful music of Enya in the background.

 
The machine which Quint has now ensures extra pressure to the lungs with every breath Quint takes, this causes the lungs to expand more in order to get more oxygen. This will result in increase lung volume. (It is no breathing machine, Quint himself has to breathe)

When we arrived this morning, they were just cleaning him so we had to wait. He was lying in half donut and that looked very nice. Unfortunately still with the mask on, and that's not a nice view. He still has a high fever.

 
We are still waiting on the results of the cultures taken. So far no results yet. They did find an infection in the lungs. Now we must wait and see what the cultures will show which were taken yesterday and the day before. It takes at least 48 hours before they will show results. As a precaution they are giving Quint 2 extra antibiotics. This also will start giving results by tomorrow at the earliest because it also lasts 24 hours.

 

For the time being he must remain in the intensive care until everything is stabilized. For Quint it is nice to be placed there because it is quiet and the nurses monitor him constantly. He sleeps a lot and that is what he now needs. Today he also got a blood transfusion again. The hemoglobin levels were again too low.

This night it did not go well with Quint. He was very unsettled and was gasping for air. The oxygen intake was good. Shirley remained with Quint for the night and eventually called for a doctor, who examined Quint and discussed with a colleague and ultimately there a thorax had to be made. The giraffe, the mobile x-ray machine was wheeled in, (this is a giraffe painted on it), and a photo was made.

It turned out that the ascites behind the lungs was back at double the volume of yesterday. That had to be taken away again. It was decided to send Quint to the intensive care where a drain will be placed to get rid of the abundant fluid and keep it away.
 
Shirley is Quint remained until he was put to sleep just before the anesthesia. The procedure worked fine, only Quint has lost a lot of blood, for which he now again needs a blood transfusion.

So it was a heavy night for Quint and Shirley. In the morning I stayed with Quint in the IC, he was breathing heavily. Now and then it was normal when he was in a deep sleep departed.

It is very nice that everything was so fast, that's really great here in the hospital. If it is really necessary everything can and will be done immediately.

Now we have to find out what caused the latest fever attacks. And if it appears that it is caused by a different bacteria, again the antibiotics cure changed will be changed. This means that Quint will have to stay in the hospital even longer. Hopefully after all this he will not get sick anymore.

Today Quint remains on the IC, and perhaps tomorrow back to the room.

The liver itself does very well indeed according to the doctors. That is not the problem. 

 

== Oscar ==

In the morning he still had 38.8. So again blood was taken, something they would not do today. Also urine samples were taken to check for infections. He also had a thorax, which showed that he again had ascites behind the lungs.

 

This afternoon that will be removed again. A thoracentesis under anesthesia.
He was allowed to eat some cereal today but that must now be postponed. Quint must remain sober.

 
This is not nice for him. Teletubbies remain his best friends, he continues to watch them on the TV. That makes him settle down a bit.

His roommate of the past 2 weeks has now moved to another room. This was a nine-year old boy, Marco, who also had undergone a liver transplant, 1 day after Quint. His father was the donor.

 

Now we get this afternoon a girl the same age as Quint from Russia. It is the day before yesterday transplanted.

 

The sharing the room with Marco went very well despite the fact that they only spoke French, now wait and see how it goes with the Russians.

 

Quint woke up a couple of times very restless during the night. Probable cramps and he then also had a dirty diaper, after cleaning he went back to sleep. The fever has subsided considerably and stayed stable throughout the night. He also is of the oxygen and his breathing was good throughout the night.

In the morning the ritual began again of medication, washing and lung massage. During the massage he was very upset and his oxygen level was again a little low so he was put back on the oxygen. The therapist brought some toys but Quint was not impressed with these. Today we will see how the drinking will go. A dietician will come by. We tried some sugar water but Quint does not want the bottle. Today again an echo was made and during this Quint was very calm.

At times Quint has cramps and for a moment he is very sad and in pain. Luckily this doesn’t last long, and the pain goes away.

The night went well. Quint woke up a couple of time, but went back to sleep shortly after again. The day also went by quite well. No echo today. The fever is better under control. Only in the late afternoon the temperature rose to 38.6 C. The rest of the day it was ok. Quint slept in the afternoon, we had to wake him around 1800, we were afraid he would not sleep then at night.

He played a bit with his toys. The doctors know which bacteria Quint has and the antibiotics are the right one. It was caused by the old IV. Now we have to wait 10 days. Today Quint is allowed to drink something. Tomorrow he will start with milk. First we have to offer it to him and if he does not take it we will have to put the rest through the tube.

Also a therapist will come for some excersizes to stimulate to drink by himself. It most probable will be a very slow process and we have to be patient. For already 10 months is not eating himself. Last week he drank a little, but today he did not want to know anything of a bottle. We still have a long road ahead with this.

Shirley slept in Quint’s room this night. He was very restless. Also his temperature increased again. In the morning when I arrived the fever subsided and Quint was lying in his bed playing nicely. Later they will take out the IV and put in a new one. Because this is a ‘deep’ IV this is done under general anesthesia. Fortunately this went very smoothly in the morning. Afterwards Shirley went back to the recovery room, and when she arrived there Quint was already awake again. Quint was the only patient, and after 20 minutes he was allowed back up to his room.

At 1300 Grandpa and Melissa arrived. Actually grandmother wanted to come but because she has a little trouble with her health, and has a fever, we have discouraged her to come so grandfather came along with Melissa. After all groceries were unloaded, we went up to greet Quintje. Oscar, grandfather and Melissa went down to eat some ice cream.

After this grandfather remained with Quint and we took Melissa to a playground which was not too far away. Today is the beautiful weather and fun for us to see Melissa enjoy herself. Quint was of good hands with grandfather and he felt pretty well. The fever still spikes. In the evening we ate pizza and after this Melissa and granddad drove back to The Hague.

Saturday passes by very relaxed. Quint still has a fever but the doctors hope that the antibiotics will do its job. The CRP (measure for infection) values in his blood are declining which is good. But the fever still exists. The strange thing is that it goes up and down. One moment he has a high fever and a couple of hours later it is gone again, only to rise a few hours later again.

The doctors suspect that it may be the IV. This is the kind that is put in the main artery, and everything is done through this one from giving medication to taking blood. Quint sleeps a lot during the day. Shirley stayed with him en I went for a walk outside. I did not want to stay in the Rousseau room or sit behind the computer.

 

Quint his blood transfusion was postponed yesterday because he still had an increased temperature. And they do not give blood transfusions if you have a high temperature.

 
Quint gets paracetamol for fever and he is cooled with cold gel packages. He sleeps early and looks really ill but he is quiet.

 

In the evening around 11 o’clock, his temperature dropped so that the blood transfusion can begin. This goes through the infusion that he already has. In 3 hours he will be given 150 ml of blood.

Quint sleeps all night and wakes up only when he is checked by the nurses, then he sleeps quietly again. His breathing is normal. No moaning nothing. His temperature fluctuates between 37.5 and 38.5.

In the morning he quietely awakens. Then everything begins again taking blood, washing, weighing, plasters changing, FK medicine, etc. A little later, we again have to make an echo, and thorax. The last one is to see if the removed moisture did not come back.

In between Quint also took a little nap, so the lung massage had to wait. Now he has fever, he needs his sleep more than ever.

 
All in all, he is in a better mood than yesterday and he even tries to clap his hands once in a while. Unfortunately one of his arms is tied, so he can not quite reach his other hand. This was done to keep the infusion flow going.

 
Everything is good today as long as you leave him alone, especially the nurses. When they come he starts to scream.

Around one he falls asleep and for the first time he takes his noon nap.

 

Shirley and I are just going to eat in the hospital canteen.

 
== Oscar ==

 

During the night Quint was very restless during his sleep. Around 3 am he developed a fever. It dropped a bit after administering paracetamol cooling him with cooling elements around his body.

In the morning again began the ritual. Taking Blood, FK medicine, washing.

 

The ward doctor came along and also told that the operation was conducted successfully yesterday. The spacer had been removed and the abdominal wall muscles and skin are stitched together again.

 
Quint his fever is again increased and he breathes heavily.

Because of this another echo and Thorax has been taken this morning. Quint has difficulty breathing and on the Thorax showed that there was too much ascites behind his lungs At 1400 Quint was brought back down to the operating room to do an emergency thoracentesis(procedure to remove liquid from area around the lungs). After this it is expected that Quint can breathe easier again.

Hopefully this will be the last surgery for Quint. He is now such a poor little guy, and he looks really sick. Hope that he can now relax and feels better soon.

The thoracentesis went well and the doctor has drained 200 ml of fluid from behind his lungs. Because of the fever they took cultures of his blood, urine and respiratory tract. Quint his hemoglobin is too low and must now also be administered some blood.

 

Fortunately he breathes a little easier than earlier in the day.

Until next time

 

== Oscar ==

The night was fairly quiet. Quint had been a number of times restlessly awake, but also went back to sleep. Twice it was because of the leaking drain one of the two drains still leaks.

Because he must be sober today, he gets less protein supplements by the infusion tonight.

 
In the morning it was again taking blood, FK medication, washing, lung massage, and doctor’s checks. Everything went nicely fast today. Only the echo still and then it is waiting for the operation.

The operation will take place between two and four this afternoon. Even if the surgery is not as large it always remains tense.

 

The morning ritual went slower than normal today, after taking blood we could do an echo. So we went there. Just as Quint was finished Shirley arrived at the echo as well so we all went back to the room. Here he got the first of his twice daily lung massage and then we washed him.

 

In addition to the long massage, Quint also gets another treatment for the lung, this is to optimize lung expansion, this is called c-pap. For this Quint needs to breathe through an oxygen cap for min. 20 minutes every day. For Quint, this terrible, because he associates it with the anesthesia cap. If he already sees the cap then he starts to scream, hit and kick. In the morning they tried without success and again in the afternoon, this went little better but still not good for the treatment. We will try again tomorrow, maybe.

 
The rest of the day went quietly. Quint took short naps, and was at times wining and other times playful.

In the afternoon an artist at the ward, Monsieur van Damme. In Belgium, he is very well known in the French classical circuit (opera etc). First they were in the hallway taking pictures with the staff. Then they also visited Quint and sang a French song for him. All nursing staff of the department, the doctors, our surgeon and liver coordinator Magda, stood around it. Even though we did not know him, it was just a nice change. And the photographers kept taking photos of Quint. Quint was really royalty. This came out of a charity foundation.

In the evening Quint sleeps around nine thirty.

The night was very bad. Quint woke at 2330, and was complaining a lot. Since he was awake the nurse took the opportunity to take his blood pressure and oxygen levels. After this he continued complaining for over an hour. Ultimately, I had a doctor called and she arrived at the ward quite fast. Unfortunately Quint just fell asleep. Together, we then decided to leave him alone. Quint were awakened again at 0140, again I was unable to calm him.

After half hour, he suddenly started to vomit. So I put Quint on his side and let everything run. Then together with the nurses we changed the bed. Hopefully he can now rest easy. Around 2.30 he fell asleep, and at 3.30 he was awake again. Again I was unable to calm him down. And again he had to vomit. This time I was quicker and able to keep Quint a little dryer than before by lifting him up and holding him on his side. The nurses there were quick and could again change the bed. Then they emptied Quint’s stomach of another 80 ml. fluid.

This time, the nurses called the doctor again, and she examined Quint and said that everything seemed to be good. The reason for being restless may be because the morphine was stopped, the stomach and intestines are now starting to function properly again, what may develop gases which can cause stomach and intestines cramps. Vomiting can happen after such a major operation.

Quint is very afraid of the nurses and doctors and breathes very heavily when they are near him. Because he is tired he now allows everything. A little after 0400 hours Quint falls asleep. Now I can sleep as well. He sleeps until around eight.

 

Now begins the morning ritual. Quint wants keep sleeping but he needs to take his Fk(prograft) Medication by the mouth so he must wake up. Then it is washing, changing of patches, weighing, bed changing, and Doctor checks. After this he was allowed to relax with me, watching Teletubbies. Then it was off to get an EEC, x-ray of lungs and abdomen, and echo done.

 

No tests are pleasant if you are tired but all in all Quint was not very upset. And then the morning was over. Quint is now having a nap.

 

Later during the day, the surgeon came and informed us that so far all looks very well. And coming Wednesday he will remove the spacer from Quint and stitch the muscle tissue back together, he will also do a liver biopsy. Also one of the three drains will be removed today. So Wednesday will be again a big day.

 

Just before the doctor came by, Quint was on Shirley’s lap and we gave him a bottle of sweetened water. At first he pushed it away, but after a little while and a small taste he started drinking! The first time since March 2007! We were very excited about this.

 

Until next report

 

== Oscar ==

Quint has slept reasonably well last night. He awakened a few times. Around 5 o’clock in the morning the nurses discovered that two of the drains in the abdominal wall were leaking. This had to be stopped and the bed needed to be cleaned. Fortunately after this Quint then went to sleep again.

In the morning there was again what we call the normal ritual. Around 11 am, he was all done. The morphine was stopped today, and every 6 hours he is allowed paracetamol for the pain.

 

Today grandma and grandpa are coming around 1300 with Melissa to visit.  Melissa is glad to see us again. Over the past week she is very concerned that we will forget her.

 

Melissa found it impressive and all her attention was focused on the blood bags hanging by the side of Quint’s bed, this is the drain fluid from the wound. We also showed her the stitches on Quint’s belly. We try to involve her as much as possible and she found the stitches also very interesting.

 

Then she took it in very well and then it was enough and it was time for ice-cream with mom, dad and granddad downstairs. Grand mom stayed behind with Quint. After the ice-cream, we went shopping at the Carrefour but when we arrived it was closed. Fortunately my mom already brought a few things from Holland so we can manage a few days.

In the evening we went ate pizza and afterwards the grandparents and Melissa drove home to The Hague. For Melissa it was good to see us and her brother and for us it was also very good to have her around us.

Quint himself that day was very restless. We were really feeling for him. At such moments, we are unable to soothe him. Eventually he fell asleep around nine.

 

** Shirley **

Today Quint is very afraid for all the nurses and doctors. As soon as he sees a white jacket, he starts to cry and then we are unable to comfort him. Unfortunately there was a lot to be done this morning. From around eight thirty to around twelve, they were again busy with him. Every day blood is taken (fortunately via the IV), Medicines, the morning session lung massage, bathing, changing of the drain band aids, an echo.
After all this was done Quint was allowed to lie in the arms of mum. He liked this and right away Quint calmed down, as long as there where no white coats in the vicinity he was fine.

 

Yesterday, the doctor told us that the FK values (medicine fto neutralize the immune system, for rejection purposes) was too high and decided that the dose for this evening and the morning would not be given.

 
This morning Dr. Smet told us that today they will check the blood values again so the correct FK dose  can be given again. Quint still is not allowed to drink. Maybe tomorrow. Reason for this is, because the old liver attached itself to the intestines, these were treated as well during the transplant. The doctors first want the intestines to be sufficiently healed before they resume their work. If they are not healed enough, there is a chance of intestine leaks, thereby causing unwanted infections.

Fortunately, she increased the volume of hydration given therefore we hope that he has less of a dry mouth.

 

The other blood values and echo results this morning looked good.

 

Until next time

 

== Oscar ==

This morning around 8 o’clock the nurses cam by to take on Quint. Medication, untangling of IV tubes, blood, and bathing the whole nine yards. Quint again got his lungmassage. They were busy with him for about 2 hours.

Quint was very relaxed and vital. He enjoyed his toys again. He still is very thirsty. But he still is not allowed to drink. Maybe tomorrow. At this time he is learning French by watching the Teletubbies in French. He is very calm today, maybe because the lack of sleep.

The pediatrician came by to check Quint and all was fine. Quint has a light fever and just to be sure they took some blood cultures to check for bacteria.

Quint was very restless in the afternoon. He still has a very dry mouth. Unfortunately he still is not allowed to drink or eat. So instead we give a small wet towel to him and he sucks the liquid out. A couple of times Quint took a short nap only to wake up crying, it was very difficult for to comfort him afterwards. Because he has so many cables attached to him, you cannot pick him up.

Quint got an echo and his afternoon lung massage as well. Around 2130 Quint finally gave up and fell asleep.