Since Little Jorge did so good recovering from his last surgery they allowed us to go home!!! We are staying at Jorge's cousin's (by the way, we need to thank them since they have allowed us to stay in their home for as long as we need to, or until the baby is well enough that we can go back home, we are just so blessed) so this is home for now! He is eating through his jtube, so he has to eat very slow, he is connected to his feeding pump 20 hours a day. This has been driving us crazy since he has to sit on his stroller most of the day. He refuses to carry his backpack, and our options are very limited when it comes to entertaining him!!!!
He will go back into the hospital on Wednesday to get some exams done, and then on Friday he will have his third fonduplication. You know what they say three times is the charm. Hopefully this time it will work, so he will be able to eat normally. I am hoping once his surgery is done he will remember that eating is pleasant, and that its much better to do it by your mouth than through the tube. If he has forgotten I will have to start taking him to feeding therapy again . . . .I really hope not though!!!!
Yesterday as we were in doors since the cold weather did not allow to take him out, it started to snow. Many people did not seem very happy about this, since it is only October, and winters here in Boston are really cold, but for me it was a gift to be able to show it to Jorge right before we get to be stuck in a hospital for at least two weeks!
Tomorrow is Halloween, and Jorge will be Spiderman for this event. He looks so so cute in his costume!!!! He just does not want to take it off, its really funny. He looks like a mini red and blue bodybuilder LOL!
Tuesday is Jorge's second birthday! We will be taking him to church since it is all saints day, and also singing happy birthday at home with CC and Felipe!!!! I am very happy we get to be home for this and not at the hospital, even though there were going to be more kids there.
Sunday, October 30, 2011
Tuesday, October 18, 2011
Happy tears!
So Jorge had the first of his surgeries! Everything seems to be going great! He has had no fever, no rashes, no leak and no infections! Today also they decided it was time to take the breathing tube out. He was supposed to be extubated yesterday, but doctors just thought he was not ready!
The fact that we were one day behind schedule just made us go into panic mode, all the sudden we found ourselves reliving the NICU nightmare all over again. My nerves were getting the best of me and I just could not relax.
This morning out of the blue he just started needing less and less support, they gave him some lasix to make sure he got rid of the extra fluids, and voila our little man was ready to breath on his own. The Boston hospital is very strict and they have a protocol for everything. They started by taking off the sedative medicines, then they waited for him to be very awake. It took him 2.5 hours to be really awake. Then they called the attending and fellow doctors from surgery, ICU and anesthesia, and then came respiratory. Once everyone was here, they started suctioning him and monitoring his oxygen levels. When they were positive he would not fail, after 4 hours of wait, the tube finally came out.
He struggled a bit at the beginning, he needed a little oxygen support and some suctioning. At this point it was dejavou I felt I was in the NICU seeing him fail after each extubation. I was shocked and scared, but he recovered very fast, and before we even knew it, he was doing it on his own. He started playing, smiling, laughing, showing us how strong and how full of life he is! At this point I just felt like a huge weight was lifted off my back, so I sat down asked the nurse if I could hold him, and once I had him in my arms just started to cry. Just could not stop sobbing, it was all the stress coming out. My tears were happy tears, but I just could not stop.
He is doing great, and for the first time since he was born, doctors are giving us positive feedback, and lifting our spirits. It seems like this time he is finally going to be able to be happy and to feel good.!!!!!! I think the fact that he is older and stronger helps a ton. We just thank God everyday that even though we find ourselves in trouble with Jorge all the time, we always find a solution to fix whatever problem we encounter.
Someone told me a few days ago that God would never give me anything than I cannot handle, and to that I must quote mother Theresa " I just wished he would not trust me so much" (I'm just kidding) the truth is the Lord is good and kind and he gave us the best kid ever. We do not have it easy with the constant travel to the hospitals, but we do have one thing and this is the luck of seeing how God works his miracles through our son. I really do not think many people get to see that in their lifetime!
Once again I cannot thank you all enough for the support and prayers. Our faith and your support is what keeps us going!
I really hope Jorge reads this blog one day! So if you ever read this I just want you to know we love you so very much, and we are very very proud of you little man!
The fact that we were one day behind schedule just made us go into panic mode, all the sudden we found ourselves reliving the NICU nightmare all over again. My nerves were getting the best of me and I just could not relax.
This morning out of the blue he just started needing less and less support, they gave him some lasix to make sure he got rid of the extra fluids, and voila our little man was ready to breath on his own. The Boston hospital is very strict and they have a protocol for everything. They started by taking off the sedative medicines, then they waited for him to be very awake. It took him 2.5 hours to be really awake. Then they called the attending and fellow doctors from surgery, ICU and anesthesia, and then came respiratory. Once everyone was here, they started suctioning him and monitoring his oxygen levels. When they were positive he would not fail, after 4 hours of wait, the tube finally came out.
He struggled a bit at the beginning, he needed a little oxygen support and some suctioning. At this point it was dejavou I felt I was in the NICU seeing him fail after each extubation. I was shocked and scared, but he recovered very fast, and before we even knew it, he was doing it on his own. He started playing, smiling, laughing, showing us how strong and how full of life he is! At this point I just felt like a huge weight was lifted off my back, so I sat down asked the nurse if I could hold him, and once I had him in my arms just started to cry. Just could not stop sobbing, it was all the stress coming out. My tears were happy tears, but I just could not stop.
He is doing great, and for the first time since he was born, doctors are giving us positive feedback, and lifting our spirits. It seems like this time he is finally going to be able to be happy and to feel good.!!!!!! I think the fact that he is older and stronger helps a ton. We just thank God everyday that even though we find ourselves in trouble with Jorge all the time, we always find a solution to fix whatever problem we encounter.
Someone told me a few days ago that God would never give me anything than I cannot handle, and to that I must quote mother Theresa " I just wished he would not trust me so much" (I'm just kidding) the truth is the Lord is good and kind and he gave us the best kid ever. We do not have it easy with the constant travel to the hospitals, but we do have one thing and this is the luck of seeing how God works his miracles through our son. I really do not think many people get to see that in their lifetime!
Once again I cannot thank you all enough for the support and prayers. Our faith and your support is what keeps us going!
I really hope Jorge reads this blog one day! So if you ever read this I just want you to know we love you so very much, and we are very very proud of you little man!
Tuesday, October 4, 2011
Time Flies!!!
The last few months have been crazy. We moved from Houston to Miami. We have been traveling all around, and as usual Jorge has had a few surprises to throw at us.He had been eating without the use of the tube for about 5 months and then one day he just woke up, and decided he no longer wanted to eat. We tried everything and nothing seem to work, so after two days of struggles we went back to gtube feeds. It really felt like a set back, but in the end we realized that if he had stopped eating, there just had to be a reason.
The not wanting to eat episodes were followed by vomiting, and constant reflux, so we decided it was a wise idea to find a doctor in Miami that could see him. We got very used to the hospital in Houston, and prompt replies from all the medical staff so when we tried to make an appointment, we were kind of expecting the same VIP treatment, but instead we were given an 8 week wait . . . . . not really good when your child has a history of medical issues. To make a long story short, we had to fly back to Houston to have him seen. When he was seen by his doctors we were told that for a second time Jorge had blown his fonduplication, and that we needed to find a new solution for his issues. The solution given was gastric bypass. There was no way we were going to let them do this to him. He has weight and growth issues, he hardly has an appetite, so to me this was just the craziest idea I had ever heard (doctors also suggested he would have to tube feed for an undetermined amount of time). While a solution was found he had a GJ tube placed, which I hate, but it is helping him, he has gained 5 lbs ever since!!!!
After hearing the bad news, we basically put our thinking caps on and started looking for other alternatives. We found a hospital that has a program just for kids like Jorge. They have an esophageal atresia program!!! how cool is that? We immediately started getting everything going and started planning for our trip to Boston. We are not only going to a hospital that has a program that specializes in his condition, but also the number 1 hospital in the United States. How lucky are we???? We are always finding ourselves in trouble with this little man, but at the end of the road God just works his miracles and shows us the way to a solution!!!!
On a happy note, Jorge started school . . . as always he just won everyone's heart and he is loving it to the point that when i drop him off he will just turn around say bye-bye, and walk away. We had two different weddings where he just danced the night away (this boy is going to be trouble all the way), he was the ring bearer at one of the them and did an excellent job. He has been growing and getting cuter by the day, and his hair has finally grown to where the scars from his head surgery can no longer be seen; and he no longer has to wear his helmet!! WHOOP WHOOP to that!!!! We also took him to the Miami Seaquarium, and he just loved the dolphins and Lolita the killer whale, we had a blast!!!!!!!!!!
We are flying to Boston this weekend, and seeing his new doctor on Monday. Testing will start Tuesday, and surgery will probably be the following week!!! We are very hopeful that we can finally put an end to his GI issues, so that we can move forward and give him a better quality of life.
Also we are one month away from his 2nd birthday. We were planning on celebrating this one big, but with surgery in the future we might have to postpone the big party until next year!!!
Also we are one month away from his 2nd birthday. We were planning on celebrating this one big, but with surgery in the future we might have to postpone the big party until next year!!!
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