Hopefully On The Mend???
Well today has been a much better day around here. I have still been sleeping out on the couch with A at night but think that tonight he may be okay to go back into his bed and me into mine! He is still very congested sounding and I have him on a half litre of oxygen, sometimes bumping it up to 1litre.
Okay, I have to say thank you to all of the moms that have watched my video and given me their opinions. I have to say that it really varies from person to person! I have four moms saying that it looks like a seizure, I had two say it looked reflux related and a few others that said no to a seizure.
Here is why I do NOT think they are seizures. He spent 227 in the NICU before coming home on oxygen, g tube feeds and an apnea monitor on Jan23’06. The day after coming home he had one of these “spells”. (He had probably five in the NICU) Within the next four days he had a total of 7. He was readmitted and ended up in the PICU on a vent. He continued with these spells even on the vent. At one point they even called a code blue because he was going so low in oxygen sats and heart rate.
***These spells that occur, he drops his sats to the 20s along with his heart rate. He goes completely off colour, there is no chest movement and he goes stiff. There is no way to get air into him…when they would bag him it would just pop off.***
They diagnosed him with ALTES-apparent life threatening events due to reflux. They then changed his g tube to a gj tube. On Feb23’06 he came home again. He went all the way until July’06 and had two spells in one day. We just happened to be doing an oxygen trend and his sats were 23 and heart rate of 42. Took him to emergency but they didn’t do anything.
He went all the way until April 4’07 when he had another one. Then June 13th’07 another one. This one was at a hospital that has a wonderful reputation. Once again, nothing was done. Now this past Wednesday he had another one. This one was just over three minutes long. I called 911 he was taken in and the doc is saying seizures. I have a VERY hard time with this b/c my gut says it isn’t a seizure. I mean I have had about ten doctors see him do these spells and when I would say “seizure” they said NO.
SO, I guess my questions are these. If it IS seizure then why have SO many doctors said no? If it is seizures then why did the spells stop after the gj placement for so long? If it is seizures how come nothing has shown on the two eegs that he has had? If it is seizures then why does his oxygen go so low? I have heard that it is not common to go off colour with seizures, let alone down to the 20s. I also had one mom tell me that her son was blue but was still satting in the 90s.
My gut tells me that it is something to do with his reflux and/or airway. His last bronchoscopy was in February of 2006. I have been asking and asking for another but never got anywhere. This was until last month when I met a new doctor. He told me that he would be arranging a bronch, a sleep study and a feeding study. Well it has been six weeks and I haven’t heard a thing.
We will also be seeing a new neurologist in the beginning of December so maybe they will have some thoughts about what could be happening. Two neurologists that I have seen have both said no to seizures as well. I am just so frustrated with all of this and I wonder WHY doctors are so nonchalant about what is happening…
Now to leave with some new great pictures…
If ANYONE has any ideas on what could be happening PLEASE send me a message. At this point I am willing to look at everything!!!!!! And also, is a bronch enough to tell if it IS airway related or is there something else I should be asking for as well? I might as well try and get all the things done at once….