Andrei Fagurel - English

Thank you all for your good thoughts!

Starting from last Saturday, Andrei and I have been in the Ronald McDonald house. Andrei was released from hospital, but we preferred to remain here for 2 more check-ups with Prof Bax and to be close to the hospital if necessary.

At the check-up from today, Prof Bax said that, if everything continues to be so today and tomorrow, we could go home this week-end. He said I shouldn’t give him solid foods yet, because if “it gets stuck, we are in deep trouble”, that he doesn’t know how the transplant will evolve, but that on the other hand we cannot stay here forever, so he advises us to go home and see eachother in a month and a half, if nothing unexpected comes up.

So, we are having fun around here and wait for daddy to arrive tomorrow night.

Andrei chockes and has reflux sometimes, has lost a little weight (approx 300g since we came here), but compared to the very serious problems that could have occurred, for the moment we don’t have major concerns.

We continue to live the moment and we’ll see what the future brings.

Please excuse me for not giving You any news about Andrei until now, I was with him in the hospital at all times.

Andrei is past the post-operatory critical period, according to Prof. Bax. He had a swallowing study last Thursday, the 19th, and Prof Bax said he could see the jejunum moving, so he concluded the transplant is alive and working. There is a latency in the emptying of the “esophagus” in the stomach. Because there was such a long distance to cover, Prof Bax had to prepare a longer part of jejunum and so Andrei’s transplant is shaped like an S. He also said that if the “esophagus” strictures at some point, it will be extremely difficult to reach safely. It seems there is no leakage also. Prof Bax also made a new gastrostomy because the old one was not so good anymore, some stomach mucosa was coming out of it.

Andrei is doing ok now, he has no more tubes or catheters, except for the gastrostomy. He had a very difficult time also form a psychological point of view, but I think he is recovering.

Andrei and I have moved to the Ronald McDonald’s house since yesterday afternoon. We have an appointment with Prof Bax on Monday at 13:30, when we will discuss about the next steps and a post-operatory follow-up plan. We will see if Prof Bax thinks we should remain a little while for follow-up or if we can just go home and come for a check-up at a later time.

He will also put us in contact with one of his colleagues, the most experienced one after him, because he will retire starting from the 1st of July this year.

Andrei drank by mouth a little water, a little milk, a little Nutrini, ate a little mashed fruit and some minuscule pieces of cheese and egg. Everything was fine so far, he chocked 2 times but no serious incident occurred. Still, it was very little and no hard food. Otherwise, he is moving, playing and also trying to stand up again, although with some difficulties for the moment.

He has reflux from time to time, but so far he seems to be able to manage it. He gets some medication for it also, Motilium and Nexium (esomeprazol).

At this point we don’t know IF and HOW Andrei’s replacement will work, but at least we have the best chance at what we aimed for, the jejunum interposition.

Thank you all for thinking about Andrei and for praying for his recovery!

Andrei spent about 14 hours in the operation room (from which about 2 I think were pre and post surgery processing). He had a good behavior during the operation and for the moment is stable (sedated and under ventilation). They have managed to make the surgery with the type of tissue that we wanted (jejunum). However, the Professor is not sure that it will last, because there was a long gap to be covered and the vascularization of the tissue is not so good. So, no final result yet.
During the next 4 to 5 days we have to wait and see if any signs of infections will appear. The possibilities are:
1. if the infection signs will appear, than a new surgery will be performed to remove the dead tissue and bring Andrei to the initial state, than wait again for a while (months, years, of course nobody can tell) to recover and try another method.
2. no infection, than might be a chance for the tissue to remain there

From the other records of the day, beside the longest surgical intervention that we have ever had, we can mention:
- best coffee ever drunk (a small coffee-shop downtown Rotterdam)
- worst Chinese food ever eaten (stay away from Wokexpress downtown
Rotterdam)
- largest number of stupid serials ever seen in one day on TV (here they use subtitles, not like in Germany :-/ )

Thank you all for thinking about us!

We arrived well in Rotterdam on the evening of the 3rd of February, as we had planned. We had one day to rest a little and then yesterday Andrei had a series of investigations. Considering the fact that it was a long and difficult day for him, even if he cried a lot when examined, I would say he did pretty well.

Part of them had good results:
- he had some heart problems that now seem to have solved spontaneously and everything seems to be perfect with the heart,
part of them not so good, but nothing we were not expecting already:
- Andrei has some vertebral malformations that we already knew about, and they are causing a scoliosis that is probably progressing and that is very probable to require surgery in the future. We are supposed to check the situation again in about 3-4 months. The doctor said we can find good spine centers in Germany and he will try to recommend something. But this is not a concern at this moment.

We also had a discussion with a doctor specialized in genetics, who will try to do some investigations to see if Andrei matches some genetic syndrome. We had a long discussion about it, she examined Andrei thoroughly, she will ask for some blood to be taken for different analysis and also a skin sample and also for some of our blood. The analysis might take a very long time and we might not have an answer until we leave, but we will keep in contact with her and, if needed, she will collaborate with genetic doctors in Munich. She will also recommend that an MRI of the brain to be done, if Andrei’s condition allows it after the surgery.

On Monday morning Andrei will have 2 more ultrasounds (kidney and bladder), some blood and urine will be taken for analysis and then he will be stationed into the hospital, most probably directly on the Intensive Care Unit. The operation, as you know, is scheduled to take place on the 10th of February, starting in the morning.

We are staying in the Ronald McDonald’s house right next to the hospital and the conditions are great, we have everything we need here. Andrei is doing well, he still has some coughing but it doesn’t seem to be very serious at the moment, he has no fever or other symptoms. He is in a good mood, we have gone for long walks and sightseeing and we will continue to do so over the week-end.

Daddy will stay with us until the end of next week, which is very good for the help he gives us and also for the moral support.

And thank you all for thinking about us and giving us strength!

We now have the long awaited appointment for Andrei’s esophageal repair operation (we have been trying to make it for about a year now)! It has been scheduled for the 10th of February… It will take place in Rotterdam, The Netherlands, in the Erasmus MC Sophia Clinic and will be performed by a team led by Prof. Klaas Bax, the Head of the pediatric surgery department in the clinic.

We will have to be there a week before for investigations, so in approximately a week we will start preparing.

I cannot tell you how I feel… I know I should be glad that we finally have some definite plan, but that fear (or should I call it terror) of a new hospitalization for Andrei has returned and also of the unknown of what will be in the future. But I am also aware that we do not have a choice, and so we have to go on, we have to be faithful and strong for him.

Of course I, as a desperate mother , have already asked if it would be possible that Andrei stays with me as much as possible. I guess Prof Bax is a veeeeery patient man, considering that he still accepts us for the operation

Here is our most recent interest/occupation: going very very fast “on all 4″ through the hallway :

The diet is going well, from 17,2 kg he has now reached 15,4 kg and it is quite visible… The legs are thinner, the belly is smaller and overall he doesn’t look so… round anymore.

He continues to go to socialize, and I am trying to organize his registration into preschool starting next autumn. We have to see if it will be possible, taking into consideration his problems and the operation that he will have to go through in the near future.

Otherwise, and despite of all problems, he is a happy, joyful baby, who is always trying to interact and who does a lot of funny cute things.

The travel took a looong time (9 hours), but Andrei behaved amazing. He was great for about 7 hours, then started to be restless, but overall it was a good experience.

Meeting the professor was good also. He is experienced, honest and quite direct. He checked Andrei as thoroughly as possible, noted some more investigations he would like to perform at a later time and… told us he had planned to operate him on the 22nd of November. But now, that he sees him, he thinks it is not such a good idea, because Andrei is… too fat! And he considers this to be an additional risk for the operation, because it means more bleeding and difficulties in preparing the tissue for the interposition (apparently it is very difficult to manage the jejunum’s very fine vascularization in between the fat). So he sent us home to lose weight (he should lose about 3 kilos) and we hear eachother again in Jenuary, hoping to be able to do the operation in February.

This is about everything for now from the fatty boy. Thank you for thinking about us!

After long fights, we finally managed to receive an appointment for a check-up in The Netherlands with the surgeon specialized in jejunal replacement, Professor Klaas Bax, the director of the surgery department from the Erasmus MC Sophia children’s clinic, in Rotterdam. The check-up will be on the 20th of October 2008, so… next Monday.

We will take with us all the medical papers and the x-Rays that we have, a lot of courage and we will move forward. After this ckeck-up, the surgeon will tell us what solution he proposes for the replacement (it is possible that he will not recommend jejunal replacement, in Andrei’s particular situation, but one of the other methods, gastric pull-up or colonic interposition) and when he appreciates he could hospitalize Andrei for the beginning of the treatment.

We hope we will bring more news next week after the check-up.

After a prolongued wait, we have received the medical letter! We have sent it to the insurance and now we are waiting for their answer.

They have asked if the hospital in The Netherlands accepts the E112 form for costs reimbursements between EU member countries. The good news is that they do, so, if the insurance approves that we go there for treatment, we hope we will not have financial issues. But we will see.

Otherwise, the little guy is having fun, kisses us all the time, gets up on his feet on his own and wants to try walking.

I am worried that he has scoliosis and I don’t know just how severe it is, i would like to investigate it, at least to know the degree of deformation and rotation his spine has, and to have a refference point in checking later its evolution.

We are still trying to socialize, we go in the park and gather around all the little girls which we then watch very skeptically. But we persevere in this direction.

I am trying to get him used to the sand, but he doesn’t like the idea at all. When I try to put him with his feet in the sand he gathers his legs like a little frog. He doesn’t even want to hear about playing with his hands in it, he is very unhappy when it sticks to his hands…

These would be all the news that we have for now. We will tell you when we hear something from the insurance.