Searching for answers again..

SO it seems we are heading back down this road again... more endless questioning and confusion on Sammy.. I know God has taught us much in the school of life but I thought we had gone on summer break.. I guess school is back in session.

Here is what happened.. the quickest version I can type since I need some sleep and Max is needing to eat every hour on the hour.

We noticed this week that Sammy was a bit "off" but I could not put my finger on how or what was brewing. He was more fussy than usual. His coloring has been blotchy and he seems to be sleeping in odd patterns. He had some junky sounding periods after sleeping which would resolve after being upright. He has an open ulcerated area at the stoma of his G tube which is hurting him and causing him to yank at the tube.. so I thought maybe this was further pushing his mood a bit. Anyway, last weekend there was a moniter alarm for a brady that was asymptomatic. Then on Wednesday morning I was on one side of the house getting the girls ready for school and the nurse was on the other side changing a diaper when Sam apparently had a major hypoxic episode.. brady, seizure.. whatever you want to call it.. I am so confused at this point.. I just don't know. She described him exactly as I have seen in the past.. rigid, locked up and contorted. His skin purple and blue... not breathing and then going completely limp and then greying out and unconcious... the spelling on that looks wrong but I am exhausted and it is midnight.. so forget looking it up. I wish this thing had spell check sometimes. Anyways... he was out for maybe under 2 minutes and she put him on oxygen and then he started breathing again.

I guess she screamed for me but I could not hear her. This whole thing coupled with his recent funny behavior prompted us to call his Dr. but apparently he was out for the day and noone called us back. Then he fell asleep and we hoped he would get some calming rest. It was a few hours later when he awoke that we again noticed the junky breathing and arching pain. He did not want to be held and was irritated by everything done for him. We vented his tube and there were little black things in the fluid which seemed likely to be mini pieces of blood. Within the hour he seemed better and went out to play with his sister in the family room. I was in the kitchen when the nurse decided to puch in his meds while he was trotting around beneath my feet. I offered to hold him as he has been yanking at his G tube chords whenever they could be accessed. As I reached down to hold his hands, he instantly locked into the contorted rigid posture and stopped breathing and again became hypoxic. The nurse grabbed him up like one big solid log and ran him to the oxygen and again he went limp and grey in her arms. This one lasted about a minute and a half or so. WHY WHY WHY.. 2 events in one day after such a long time without incident?

Yes, we used to experience this constantly when he was a newborn home from months of investigation in the hospital.. and no they never fully understood these episodes.. but they seemed to respond to the medicines he was put on for seizures and for brady/ autonomic vaso vago syncope events. These have always been distinct from the bradys where he just drops his heart rate all of a sudden and turns grey..but I guess we came to think this was the same except that the heart rate maybe stayed down low enough to cause a hypoxic type of seizure. Yes, they have captured on on EEG during a code blue in the hospital and it did not show as a typical seizure but I am just perplexed because the one thing that did seem to be ruled out before has now yet again surfaced as a question.. breath holding or apnea.

Let me explain why this old theory is being resurrected. SO.. after having 2 of these events, we called the Dr yet again to see if we should head over there and they said probably not since our Dr. was out and the Dr covering was so unfamiliar with Sam. So.. I called the cardiologist and neurologist and left messages. The cardio nurse returned my call with a voice mail saying check in with pulmonology?? and they neurologist did not call right back. SO I made an appt with our pediatrician for the next morning hoping it was just some ear infection or something bringing on these symptoms.

During the exam, low and behold, Sam decided to perform for the Dr and sho him a mini version of this type of episode. I was actually somewhat happy to have him witness it. Again he looked incredibly scary and rigid and seizure like and hypoxic and then limp and then unconcious. This time, however, we did not have our oxygen and it was scary seeing him lay there so blue with no resources to help him. The Dr seemed stunned and did not even really seem ready to jump in to bring him back up himself. The nurse worked to stimulate him and within a minute he was back up and looking at us again. The Dr. threw up his arms and said it was beyond his realm of expertise and that we needed to see neurology and get on an anti convulsant right away. But then I explained that we are already on one (somewhat suprised he did not remember that since I am farely certain he has few kiddos as complex as Sammy).. but he said then that we needed another one and that he needed to not be provoked or made mad etc.. and that this could be very concerning behavior for a child with his underlying condition. He then explained that he thinks this was a breath holding event that led to hypoxia. BUT THIS SEEMED SOOO ODD TO US SINCE HE NEVER SEEMED TO HOLD HIS BREATH.. He went into the seizure looking behavior too instantly and it seemed completely out of his own control. He was not "there" if you know what I mean.. so chicken or the egg is again my issue.. seizure leading to hypoxia or hypoxia leading to seizure.. what happened?

I will not go much deeper into what our nurse had to say about it but let's just say that we are left very skeptical about this Drs opinion. This may be partly because he then seemed annoyed when the neurology office asked for a seizure medication blood check to see if he was at therapeutic levels. WHY would he question this request if he just got done telling me we needed another anti convulsant? Also.. further.. with his mito condition clearly being one where the crash of symptoms is worse with illness or underlying stress, why did he not order a CBC or dive a little deeper into the question of why this kid who has been mainly episode free for months and months all of a sudden starts having a string of episodes in one 24 hr period? Seems odd but I am not the Dr.. so I will have to ask these of the next Dr of which the buck has been passed to.. (sorry if I sound sarcastic or tempermental.. I am just so so so tired of this ping pong game of which new Dr will take a hit at the ball, with everyone hoping it falls under the next specialty brought into it).

SO.. then in final summation of where we are today. Luckily.. no episodes today and happy in the morning but very moody this afternoon.. We got a call afterhours from the nurse reporting that his seizure med levels had dipped below therapeutic levels and that the report would be sent to the neurologist. Then the nurse became concerned that it should not wait to be addressed till monday's appt so she called the afterhours neuro team and they (hearing the event info) decided to up his dose. Of course they and we have noo idea if our Dr is right and this is some kind of self inflicted life threatening breath holding event or if it is some reflex issue relating to his autonomic nervous system, a lowering of Heart rate/ brady or if perhaps it is a seizure. I just don't think anyone is entirely certain..but one thing is for sure.. they all feel these are very dangerous and he needs a management plan or to figure it all out quick. Until then, his Dr instructed that we allow no stress on him.. no pushing his buttons basically. He told Sam that for now he needs to be basically spoiled rotten.
Not so easy to do with 3 other kids including a newborn to consider..so.. praying for answers, peace and less frustration. Praying that the med increase stops the episodes and that he stays pink all weekend. :)