Andrei Fagurel - English

I started having logopedy today. The nice lady is trying to teach me to accept taking some things in my mouth. The aims would be for now to get to taste things a little, to accept toothbrushing and to improve my speech. I’m sure I’ll do well, she’s a very nice, young and pretty lady, so I’ll do my best to impress her. She also plays with me and does some massage of my face and head and that feels veeeryyyy niiiiiceee…

In order to continue with the following operations, Andrei must be better from a pulmonary point of view and infection free. We don’t know when this will happen, we have been waiting for half an year an improvement, but everything is very slow, and every cold sets him 5 steps back.

When, God willing, we will be able to move forward with the treatment, it is not clear at the moment what the next steps will be. Because Andrei’s esophagus was slaughtered by the Romanian surgeon, Andrei lost one of the repair methods, the best one, which is elongating his own esophagus. Now, 3 other options still remain: jejunal transposition (a part of the small bowel), gastric transposition (pulling the stomach in the thorax) or transplant of colon. I have mentioned them in an order that indicates the corresponding level for the quality of life for Andrei after the repair.

We are still trying to decide what the best repair procedure is the best for him. We are discussing this at the moment with some of the best surgeons from USA, Germany and Holland. The best option on long term for Andrei seems to be the jejunal transposition, but the operation is technically EXTREMELLY difficult and risky. There is not much experience in the world in performing this procedure on small children. Option 2, gastric transposition, is much easier to realize, form a tehnical point of view, but might mean lifetime problems for Andrei (e.g. gastric reflux) so we are not convinced that it actually is a good option for Andrei.

The jejunal transposition is performed in at least 2 steps: preparing the graft (the tissue that is to be used) and then the actual plasty. There are major risks that the graft might be lost because of damage of the very fine jejunal vascularization, or that the graft does not adapt in the place where it has been placed in the thoraxm because of pre-existing scarring due to the previous operations. In this case, the whole process must be restarted… During this whole time, Andrei needs to be intubated, on the Intensive Care Unit, possibly for a few months… If the jejunal transposition is not successful, we switch to the second option, the gastric transposition.

So, at the moment, we are investigating the option of having a jejunal transposition in USA or Holland. In USA there are the doctors who are the most experienced in performing this procedure (Dr Foker).

So, sometimes when I think what is lying ahead for Andrei and for us, I get profoundly depresses and all I wish for is that he is happy in this moment, because only God knows what will happend in a year from now. It’s possible that he will have to go through even more difficult moments than the ones he’s had so far, and I can’t say he actually got bored until now.

About the recovery after the repair, eating training will start… Which is not such an easy thing with a 2 year old child who has no idea what food is. But that’s somewhere in the future.

For now, we have to remain optimistic and joyfull so that he develops nicely and has the strength to go on, like he has managed to pass over all the problems so far, we are preparing to get over them step by step, with the help of very capable doctors, yours and God’s.

We went for a walk and he loved it. It was very nice outside, not too cold, not too warm, the wind wasn’t blowing (this is a problem here, the days when the wind isn’t blowing are veeeery rare), so we walked under the trees from our neighbourhood and we laughed at eachother.

It was actually the second time when I went outside with him alone, if I don’t count the walks we used to take through the campus of the clinic in Bremen. Otherwise, we were each time accompanied either by daddy, or by one of the grandmothers. But it was about time we got some courage, right? We took half the house with us so we have everything we might need, but it was fair enough.