Unfortunately, more bad news. I'm actually not sure I can explain very well, or if I'll get the terminology right (since we are in Brazil and everything is explained to us in Portuguese).
There was an unusual leakage in Giovanni's gastric tube - not outside his stomach and into his viscera, which is more common and more dangerous, but rather into the skin/fat layers. Some of the neocate (formula) was somehow leaking out of the tube into that epidermal layer and causing inflammation, which was only going to get worse. So an emergency surgery was performed, basically a whole new gastrostomy.
As a result, his little tube, which closed nicely with a little valve, and did not protrude out of his belly, was substituted by a long tube that does protrude outside his body. Worse, of course, is the fact that he had to undergo another surgery, and that now he is going to be sedated for about 4 days to allow it to heal. During this time, he won't be fed, other than intravenously.
After these initial days, the formula will be gradually reintroduced. If it goes well, he'll be able to go home (though I highly doubt that will happen in the next 10 days), and after 30 days, the tube can be replaced with the unobtrusive one, with a simple, nonsurgical procedure.
So sad . . . yesterday morning we had heard that he was doing so well, and we were so hopeful that we'd have finally have him home soon . . . and a few hours later this awful setback.
Dear friend, so sad to hear the news. Deve ser extremamente difícil ver um filho tão pequeno passar por tantos procedimentos e sofrimento. Meu coração está com vocês. Estou pedindo a Deus, do mais profundo do meu ser, que a situação do Giovanni melhore logo. Muita força para vocês! Um grande abraço!
ResponderExcluirmuito obrigado, amiga. é difícil mesmo. a Ana Cláudia está arrasada.
ResponderExcluirI am so sorry to hear about Giovanni's gtube troubles. I know how life can seem like one setback after another and it gets hard to catch your breath and see that yes, life will be better at some point.
ResponderExcluirI read Giovanni's history and some of it sounds very similiar to things we have been through with Zoe. Zoe too had turned up feet. Hers were called "rocker bottom heels" because they were severe. But no worries because they don't slow Zoe down- she runs around the house and now school in her walker with no problem. Zoe also has seizures and I know how heartbreaking it is to see your child seize. Zoe's are sometimes under control but she has ended up in hospital with complications from the seizures.
Despite having many medical problems and developmental challenges, Zoe does enjoy her life. She has a great sense of humour and reminds me that yes, this is definitely all worth it. I can see Giovanni does the same for you. He has such beautiful bright eyes in his photo.
I hope he recovers quickly from his surgery and you are able to be home as a family. Now that we have two children I find it very hard when Zoe is in hospital and I can not always be there with her. Because I am breastfeeding the baby, my husband stays with Zoe. It is so hard to feel pulled in two directions at once. So I can imagine you will feel very happy and relived when both your children are again sleeping under one roof.
Take care,
Genevieve
Thanks so much, Genevieve. This has really been the best part of learning about other kids like Giovanni - to help us keep faith that at some point he will be home with us again and that he will learn to smile and laugh.
ResponderExcluirSo sorry to hear this! I hope he can heal quickly and feel much better. I am sure you guys are so excited to have him home soon. We will keep you in our prayers and little Giovanni.
ResponderExcluirThanks so much, Heather.
ResponderExcluirWe're waiting for Giovanni to come home so that we can see him and hold him. We've rented a studio apartment just around the corner so we can be close by. Guy and I are one side of his paternal grandparents and we came to Brazil recently in part to support Giovanni and his family. We've missed him since he went to the hospital - visiting hours are short and constrained. Get will soon, little boy!
ResponderExcluirZeke and I just caught up on your posts. What a strong little boy Giovanni is to have gone through so much. Sending so much love your way.
ResponderExcluirI'm so sorry to hear about this latest setback. Sending lots of love, hugs, and kisses.
ResponderExcluirSo sorry to hear Giovanni's had to go through another operation. My thoughts are with you. Hope he is home soon. Lots of love.
ResponderExcluirThank you Mom, Kate, Sofia, and Bete. Ana Claudia tells me he was active and well yesterday, the first time he was wide awake since the operation. Truly hoping he'll finally be able to make it home this time.
ResponderExcluirToday I saw Giovanni and what a good visit it was! He was alert and looked straight at me several times, with those huge jaboticaba eyes. He has gained weight and is plump and cute as can be. He doesn't look his age (6.5 mos) and some of the typical, though mild, 1P36 features are there, but he is definitely a handsome little boy that I'm looking forward to having at home - his parents's home - very soon. - Nana Greta
ResponderExcluirGreat to read Greta's news! Sending lots of love your way, Victor and Ana Claudia!
ResponderExcluirAll wonderfull words - wide awake, alert, and as cute as can be. We are cheering from here.
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