February

February 1st Melissa joined her friend Nicole for a horseback riding lesson. Before I called to see if Melissa could join. And she got her 1st lesson. It went a lot different than I was accustomed to in Europe. The pony was ready and saddled and was brought to the box by a helper. There Melissa was put on the pony and the helper stayed next to her the entire time. As an enthusiastic mother I also walked in with them in the box, but later heard that this was not allowed. The lesson took exactly 30 minutes and they did very little, they also stood still for a long time in between. After the lesson they had to dismount and the next group was ready to start. Melissa enjoyed it very much but I was disappointed because it is driven so commercially. You did not have any contact with the horse. And the brushing and saddling makes everything so more enjoyable. 2 weeks later I joined our neighbor Manon and had a look at another stable. The children have to brush the pony’s first and help with saddling. Also the children are stimulated to ride as quickly as possible without a helper next to the horse. The lesson lasts 1 hour. Melissa was ready to change immediately, we put her on the waiting list and are hoping that she can start beginning of March.

12 February we departed again for Holland where Quint will have his Biopsy. The journey went very well, the children were at their best behavior. When we arrived at the grandparents in the evening, we found that Quint had a fever. The entire night he was sad and crying. Around 5 am he finally fell asleep. Melissa however stood next to our bed at 7 am.mom can I go downstairs. Dad went downstairs with her. Quint and I slept until 8 am at which time the whole medication and feeding ritual starts again. Luckily the fever was gone but the entire day quint was tired. In the afternoon I quickly went to the city where I had lunch with my friends Monique & Karin. Melissa went to play with her friend Luna who a few days earlier had the chickenpox. Our kids were vaccinated for this and Melissa could go and play with her. Saturday evening I went to the reunion of my elementary school. It was great to see each other again after 27 years, and hear everyone’s story.

Sunday afternoon we departed to Brussels with Quint. We reserved a room in Roseau so we could take our time on Monday morning before we went to the hospital. Quint had a good sleep and enjoyed his time with mom & dad in the small room. The next morning we were at the U92 ward around 08:30. The day went by quickly with taken blood, echoes and the liver biopsy. Quint allowed everything with the exception of the IV insertion, he cries a lot but forgets everything quickly once it’s over. The ward does not scare him either and he constantly waves at the nurses. Luckily we had the hospital room all to ourselves, so we could stay with him longer watching TV. We both had a good night rest. The next day we did a few more tests of the hart and eyes. The eye test was the worse and Quint did not like it. Also the assistant was impatient and became a little angry with Quint. She told him it does not hurt’if you don’t look, I have to force you’ehm excuse me what did I hear.. some smartass who does not have any children wants to force my 2.5 year old sonmy son experienced enough, nobody will force anythingjust as I was about to say something she decided to get the doctor.pfff..... thank you. The doctor came and in less then 30 seconds she cleared the job. After this Quint was allowed to go to the playroom. So he could forget the experience. Now it was waiting for the results the rest of the afternoon. This always takes long. We also met our lovely surgeon Cathy. This is a lovely woman and it is always nice to talk with her. At 17:15 dr. Sokal came with the result. Unfortunately not 100% positive, something you always hope for. Apparently there is some fibroses of the liver and Quint will now have to take a new medicine named Cellcept. This is also an immunosuppressant. Normally this is given after the transplant but because Quints condition was so bad afterwards the doctors at the time decided against it. Now that he is doing better we will start now. And the liver condition needs to be monitored more closely so a new biopsy is scheduled in 6 months from now i.s.o. 1 year. He also wanted to see us in about 1 month but we were able to extend that to April because we will be in Holland at that time anyway. Dr. Sokal told us that this is not the best news but definitely not the worse. This happens more often and they have to monitor the liver more closely. So that’s why the next biopsy is in 6 months. We took the news with mixed feelingsbut we have to go on and enjoy the moments at which time it goes well with Quint. How does this continue? Quint was not aware what was happening and was happy that we could go home again. When we went Quint was waving at everybody and kept saying byebye We arrived in The Hague around 21:00 and Quint immediately fell asleep.

The next day Quint was not feeling well and had diarrhea and had to vomit a little. In the evening I had a cooking lesson with my friends and some other women. This was the third time we did this and is very enjoyable. The appetizer took a long time to prepare so at 21:00 we just started to enjoy what we made. I just had 1 bite when the phone rangit was Oscarcome home because Quint keeps on vomiting and continues with the diarrhea. We will go to the hospital. I quickly said goodbye and went home, what still took 30 minutes. When I arrived home Quint had just fallen asleep and we decided to leave him. Halfway through the night He woke up and continued with diarrhea every minute so every minute a new diaper. But we decided to wait. The next morning Quint appeared a little better. Now let’s hope that it will go well because tomorrow we are flying back to Dubai. In the afternoon I went for some last minute shopping with my mom and again the phone rangcome home Quint again is emptying himself and does not keep anything inside. So we quickly went home and decided to go to the nearest hospital where they know Quint which is the AMC. We were driving during the busiest time but that was ok. After 4 hours at the emergency ward, quint could finally be admitted to the pediatric ward and a feeding tube was inserted to start the hydration. In Belgium and Dubai the doctors would immediately put in a IV but here they don’t do this only in the worst situation.The worst thing was that Quint did not get better and after 3 days he lost 1,2 kg in weight. At this time I insisted that an IV be inserted. I had had it! During the weekend nobody wants to take any decisions. And on Monday our specialist Dr. Tabbers took the decision.

Quint was diagnosed with the Rotavirus and you can get very sick from that which happened. Oscar and Melissa returned to Dubai on Friday so I was with my mom in the hospital. Our routine again was that one night we slept with Quint and the other night in the Ronald McDonald home. There were a lot of mistakes made. Main cause was miscommunication between doctors and nurses and nurses and patient. There was a moment that I was about to pickup Quint and leave for Brussels. But Quint was at that time so weak that that would not have been the smartest move. Luckily I could express my concerns with the head of the ward and she was very helpful and apologetic.   

One instance which angered me the most and at that moment I really was on the point of taking Quint to Belgium..Quint had a pee-bag to collect urine so it could be checked if he passed enough urine, but this constantly came looseso they decided to put in a catheterit was very unpleasant to bring this tube in and Quint was crying the whole time, even for me it was difficult. The catheter appeared not to be inserted correctly so another one was put in. This tube appeared thinner than the previous. But taking the old one out and putting the new one in is a painful procedure. Quint constantly was in pain and as a consequence tried to hold his urine. After he let go the pain slowly resided. It was a complete disaster and the next day on several occasions I asked if this was normal because if it was sitting correctly it should not be painful??? I had a point they saidbut we will see they told me. In the evening when Quint had to pee again after I open the diaper the catheter came out by itselfso it was not inserted correctly after all. I was happy that he was relieved of this thing and luckily they did not try to put a new one in. but Quint kept the pain. His penis was damaged on the urinal track inside and whenever he had to pee it hurt this would last several days. The next day Quint was again jumping with pain when he had to pee and I asked the evening duty doctor for some medication against the pain because the paracetamol was not working against this pain. After he consulted other doctors he gave some diclovinac and that worked. Quint slept while peeing without pain.

Around midnight Quint again woke up screaming of pain so I called the night nurse, a young smartass woman. I explained about earlier in the evening and that the evening doctor gave diclovinac which worked. And asked for one more dose. She told me that I had to try paracetamol first, and I disagreed with her because that did not help. I requested her to speak to a doctor. She went away and after 5 minutes came back and told me that she thought about it and decided that she would not call a doctor because he was working on the Intensive care. You can get a paracetamol and that’s it.

Then there you are as a mother..patient..you are treated as a small child. I kept quiet but was furiousI told her this is not the last you’ll hear of this! Luckily Quint fell asleep and I did not go into a discussion with her but was very emotional about this. The next day again a heavy discussion with the head of the ward and the ward doctoryes mam this should not have happened. You are absolutely rightand that was it. Later I heard that diclovinac can only be given once every 8 hours, if only the night nurse would have told me this! Luckily I did not get this nurse for the remainder of the stay. The weekend was again upon us and then everything stops. Saturday morning they found that there was no baby formula delivered for QUint and no Prograftluckily I have everything with me. But if I hadn’t the milk formula they could have had it in the afternoon. But for the prograft that was on Monday. This is the most vital medication Quint is on. Very stupid for an academic hospital that they don’t have this in stock. And Quint cannot do without! Luckily we always carry it with us.

Oscar and Melissa are doing fine in Dubai. Oscar had a doctor’s appointment 2 days after they got back. He looked very tired and they mandated he take one week rest, so he did. When Melissa left for school he again went to sleep. Oscar always had been the rock in the stream, but all of a sudden everything was too much for him. Luckily we have a very good doctor who realized this. After a few days rest in the weekend he went swimming with Melissa and a friend of ours Sandra and her children. Our house helper is doing fine also and we are pleased that we have one. We also have very good friends who look after Oscar and Melissa, and feed them often. Oscar called us twice a day so I was aware of everything in Dubai and he about us. By now the month has passed and it went not as we had hoped. Quint still is very tired and sleeps a lot. There is a small improvement so hopefully he will get better now. And we hope we can leave the hospital this week. What a bad virus and just bad luck that Quint had to go through this again.