This will be a long post. I can feel it..need to get thoughts out of my head.. it is just crammed tonight.
We had an appointment with Cardiology today in Pensacola and they did another echo and we had a chance to try to discuss completely ruling out any concerns about his heart being related to his bradys. We had left Shands with the understanding that his Tracheomalacia diagnosis (TM = soft cartilage) was causing obstructive apnea leading to bradys (dangerously low HRs) and low oxygen saturation levels. Since last posting, we had another bradycardic event on Tuesday night which was not the rigored kind..nor blue color changes. He was sleeping and it was going off and HRs then just stayed low 70s when he usually sleeps at 120 -140. He has both kinds and they are distinctly different in nature. We just have long wondered why if it is obstructive apnea would the apnea alarm never alarm before or at any time during his episodes? So we put together a list of all our questions for our cardiology followup appt. today in Pensacola.
Well.. this appt was good in some ways in that the Dr was able to clarify alot of our questions but it also reopened the door on ones we thought were already answered. He seems to have the opinion that the origen of Sam's bradys is more likely to be central in nature or a product of undiagnosed seizure activity in the center of the brain controling breathing and HR. It makes me feel more questionable about what we thought was his diagnosis for the Bradys..the TM. I so want to have all our strings tied up in little bows and have all the answers to better cope with what may or may not lie in the future and how to best protect Sam from any further trauma. The echo confirmed he still has the small hole or PFO in the heart that is apparently not of any health concern to him. It also ruled out the PDA that several physicians mentioned thinking he had. So mainly the cardiologist said we need to rule out the heart as causing the problem itself and then we can move our focus to the other areas, most likely Neuro and the TM issues. One new piece of info to me is that he said the heart has a kind of a backup battery for if the brain sends the wrong messages to the heart slowing it way down.. it should still keep beating at HRs of 40-50 on its own. That is why in heart transplants they can be disconnected from the brain for periods and it still can function..crazy! That is at least good I guess in case his brain is randomly sending out bad messages for these short periods. Boy am I searching for some light in the tunnel! I am still hoping it is the TM and that he will outgrow all of this. He also said that in reference to my concerns about circulation, newborns already have a bit more odd circulation as they are still centrally immature and it is effected by the central nervous system. And as it seems.. Sam has some additional maturity to do there so I guess I can understand why that might be one of his symptoms.
So our cardiologist wants one last test to rule out cardio..it is an event EKG recorder that he wears in addition to his heart and lung moniter that when he has an episode, we have to get to him and without moving him and messing up its ability to record.. hit the record button and then stimulate him to increase his HRs. MORE equipment.. ugh. but this is just for a month and might really help us to understand how he literally.. ticks. I hate to hope for an episode but if he is going to have them.. let it get recorded so we can focus our investigation a bit more on the cause of his brady episodes. Bless him.. he was so good during the long appt. He is such a sweet boy.
Another side note..I joined a Laryngomalacia and Tracheomalasia support forum and had this experience that left me reeling..if it is not God trying to reach me I don't know what is. There was this really low time in my time at sacred heart alone at ronald mcd house. They were throwing so many medical terms at me and I would try to find definitions online even though I knew that could be dangerous. I had fallen upon a youtube video of this family and their sweet baby struggling to figure out his blue episodes. I never in any way connected our babies conditions but just found comfort that this family appeared to have gotten through it unscathed. Well I found this LMTM forum and after joining got all these emails right away from other moms in similar situations. But as I read this one email it was eerily familiar and then I realized it was the mom of a boy Brayden from the you tube video months back. He has TM among other things. He is a beautiful sweet boy with two sisters just my girls ages. Her email was about how much she felt our situations were similar. What are the chances this is the person I meet when there are millions of videos on you tube of babies with health concerns...? It was hard though to find out that their son has recently been diagnosed from CP and has hearing loss due to neurological problems. It took me to a worrysome place that I try never to visit other than in prayer. Now I am praying for them.. they have become even nearer to my heart than when I wept watching their videos. If you want to view a story of this couragous little boy and family, it is under "Brayden's Journey" on you tube.
Lastly and most importantly I am praying for the family of little Jensen Byrd who past away this week. They are in so much pain. He was a fighter and although I did not know him personally but have followed his moms blogs..clearly he was here to touch many lives and was an inspiration to all that knew him. I hope they can find peace that now he can rest. God speed to their entire community of friends and family.