Oh gosh after yesterday thinking maybe, just maybe we would be going home, today Jason woke up at 3am gagging and vomiting again. Don't ask me why we are all scratching our heads here trying to piece together the pieces of the puzzle and figure out what on earth is going on.
When I heard the first gag I was shattered, I just knew what was going to happen, I just knew we wouldn't be going home and I just knew he may have aspirated milk into his lungs from vomiting. I listened to his lungs first thing and yes he must have aspirated, both of them were noisy.
The gagging, vomiting and a bit of a runny tummy went on all day. We weren't able to give him ANY milk, even his medicines and vitamins he vomited up. When he is like this he doesn't move, if you touch him he will vomit.
The physio came twice today and she said that Jason's lungs were worse than the first treatment when we got admitted.
The paed wasn't happy obviously and is seriously run out of options. He said that Jason has had enough antibiotics - his 5 day course so that will stop, we must continue nebbing and physio and try and start feeding tonight again but very slowly. He doesn't know we have done every test under the sun that he can think of. We don't believe the Polygam caused this. The doctors are trying to work out where he is uncomfortable, is it coming from the stomach, is it coming from the diaphram or is it coming from the brain (a wrong message or something). He has phoned our neurologist and is going to see what he has to say - what is the next step forward, how can we help Jason?
This is very frustrating for Bruce and myself, we don't know what to do anymore. When Jason had his nissan fundoplication two years ago we were told that either we do the nissan and peg (feeding tube) and take the risks of the operation given Jasons size or we risk the fact that he may aspirate, get pnemonia and that could be fatal as well. He was also severely underweight as well so the peg was necessary. Here we sit 2 years later and we are in the same position, Jason could still get pnemonia from the vomiting. We have been seen 4 paediatricians, 1 paediatric surgeon, 1 paediatric gastroenterologist (in Austria) and we still don't have answers. We have had a CT scan, a MRI, a colonoscopy, many endoscopes and many blood tests and we still can't help our little boy. It's very frustrating for us and we feel totally helpless, we cannot help our son. All we can do it wait and pray something comes up that will tell us WHY. Who knows maybe this Polygam will kick in and help with the gagging and vomiting.
Tonight he is slightly better, I even got a smile from him but if I touch him he will still gag, his temps have gone up again and we need to clear this chest ASAP.
Gosh this is a roller coaster ride, one day he is perfectly well and the next day very ill. The hardest part is watching him suffer like this, he doesn't get many healthy days to enjoy his life. Something has to be done, somehow we will find out what is wrong and be able to help him. In the meantime we wait and pray. Through God's guidance we will find the answers.
When I heard the first gag I was shattered, I just knew what was going to happen, I just knew we wouldn't be going home and I just knew he may have aspirated milk into his lungs from vomiting. I listened to his lungs first thing and yes he must have aspirated, both of them were noisy.
The gagging, vomiting and a bit of a runny tummy went on all day. We weren't able to give him ANY milk, even his medicines and vitamins he vomited up. When he is like this he doesn't move, if you touch him he will vomit.
The physio came twice today and she said that Jason's lungs were worse than the first treatment when we got admitted.
The paed wasn't happy obviously and is seriously run out of options. He said that Jason has had enough antibiotics - his 5 day course so that will stop, we must continue nebbing and physio and try and start feeding tonight again but very slowly. He doesn't know we have done every test under the sun that he can think of. We don't believe the Polygam caused this. The doctors are trying to work out where he is uncomfortable, is it coming from the stomach, is it coming from the diaphram or is it coming from the brain (a wrong message or something). He has phoned our neurologist and is going to see what he has to say - what is the next step forward, how can we help Jason?
This is very frustrating for Bruce and myself, we don't know what to do anymore. When Jason had his nissan fundoplication two years ago we were told that either we do the nissan and peg (feeding tube) and take the risks of the operation given Jasons size or we risk the fact that he may aspirate, get pnemonia and that could be fatal as well. He was also severely underweight as well so the peg was necessary. Here we sit 2 years later and we are in the same position, Jason could still get pnemonia from the vomiting. We have been seen 4 paediatricians, 1 paediatric surgeon, 1 paediatric gastroenterologist (in Austria) and we still don't have answers. We have had a CT scan, a MRI, a colonoscopy, many endoscopes and many blood tests and we still can't help our little boy. It's very frustrating for us and we feel totally helpless, we cannot help our son. All we can do it wait and pray something comes up that will tell us WHY. Who knows maybe this Polygam will kick in and help with the gagging and vomiting.
Tonight he is slightly better, I even got a smile from him but if I touch him he will still gag, his temps have gone up again and we need to clear this chest ASAP.
Gosh this is a roller coaster ride, one day he is perfectly well and the next day very ill. The hardest part is watching him suffer like this, he doesn't get many healthy days to enjoy his life. Something has to be done, somehow we will find out what is wrong and be able to help him. In the meantime we wait and pray. Through God's guidance we will find the answers.
