quinta-feira, 8 de dezembro de 2011

Viva! Giovanni está em casa.

Hooray! Giovanni is home.

The last few days at the hospital seemed like an eternity, but finally the day arrived for our baby to be back at home with us. It’s time for us to adapt to a new routine, plan for the future, reconcile our personal and professional lives and—the biggest challenge, from my point of view—reconcile Camila’s upbringing with caring for Giovanni. It’s also time for celebration. Giovanni’s arrival at home has brought us great joy and hope, much like Christmas, when we celebrate the birth of Christ. We have a lot to be thankful for: first, to God for the gift of life; second, to the ICU team at Santa Lucia Hospital for their care and affection for our son; and to our family, friends, and all the health professionals who have accompanied Giovanni on his path thus far. 

Esses últimos dias no hospital pareciam uma eternidade, mas finalmente chegou o dia do nosso neném ficar conosco em casa. É tempo de adaptarmos a uma nova rotina, planejar o futuro, conciliar a vida pessoal e profissional de cada um e o maior desafio, sob o meu ponto de vista, será conciliar a educação da Camila aos cuidados do Giovanni. Também é tempo de celebração. A chegada do Giovanni em casa nos trouxe muita alegria e esperança, assim como o Natal, quando celebramos o nascimento de Cristo. Temos muito a agradecer: primeiramente a Deus pelo dom da vida; a toda equipe da UTIP, do Hospital Santa Lúcia pelos cuidados e carinho dispensados ao nosso filho; aos nossos familiares, amigos e também a todos os profissionais da saúde que têm acompanhado a trajetória do Giovanni.   

- Ana Cláudia

terça-feira, 6 de dezembro de 2011

Sweet Giovanni, Home at Last!




Awesome news today! After 2 months and 6 days, Nenê is finally home! We are SO glad to have him back, and he seems to be enjoying it as well. We just put him on his gym mat, and he swatted at the hanging toys and then became very calm as he listened to the music. I read recently that 1p36 kids tend to have good memories, and I don’t doubt he remembered the music and the whole experience. I just thought it was great that he could finally roll back and forth a bit on the floor, after two months of being confined to a bed.

I’m also grateful for having Camila Daya reunited with Giovanni. She doesn’t pay that much attention to him, but the first thing she did when she got home from school was yell, “My brother!” Let me tell an anecdote that touches on her relationship with him. By the way, Daya just turned 4.

When picking her up from school a couple of weeks ago, we saw a plane in the sky. She mentioned that there was a man inside driving it. I told her that it was a pilot, and that girls could be pilots, too. I told her that when she grew up she could be a pilot, or a teacher, or a doctor, and so forth. She listened intently, and then confidently declared, “I will be a doctor!” A couple of days later, of her own accord, she told her grandmother (in Portuguese), “When I grow up, I’m going to be a doctor so that I can take care of Giovanni!”

I should note that the ICU team was superb with Giovanni, and very affectionate. It helps that he is very cute and calm, and many of the nurses and nurses’ aides took fondly too him. I appreciate that so much, especially because it meant he got a lot of love and stimulation beyond the few hours a day we were able to spend with him and the attention he got from the nurse’s aide that we hired on our own to attend to him during the day. Ana Lúcia is one of the hospital staff members that really fell in love with Giovanni. She would hold him for long periods during her night shifts and even give him extra baths, just to make him feel good. She had such a positive perspective on him and his condition, from the outset. Sometimes I find people’s positive, encouraging words to be somewhat forced and I don’t really buy some of the things they say. But, for some reason, everything she said to me about him registered and made sense on some level.

Above, I’ve posted pictures of Giovanni with Ana Lúcia, with the ICU team this afternoon, and of him in the ambulance on his way home.

My main concerns now with Giovanni are what they were before he went to the hospital. First, keeping his seizures under control. He has continued to have seizures, though fortunately they are very quick and not too numerous. Today his Phenobarbital dose was upped again, and he has to see the pediatric neurologist very soon. Second, early stimulation. Despite the great care he received, I think that two months in the hospital were a big setback in terms of the progress he was making in cognitive and physical development. I hope we can now make up for the lost time. Third, he needs to continue gaining weight and growing, though I’m relatively optimistic about this now that his feeding tube seems to be working out, and reflux is no longer a big problem.

We also need to get his vision and hearing checked out soon, as these tend to be affected by 1p36. 

In any case, it’s just fantastic to have Giovanni home and to look forward to Christmas with our kids.