|My van full of kids at school pickup time..Bella, friend Landon, Sofie and Sam (not visible here).|
It is funny the phases you go through in life and how it all comes full circle. I was driving the brood home from school today and of course I always ask the kids how their day went and what was their favorite part. Today was one of the days we car pool with Bella's little buddy Landon (son of my friend since middle school, Robin). He is quite a sweet, percocious little boy and he explained that his mommy asks him to rank the day with a 0-10 scale. I have this other girlfriend whose son has had a great day if he comes home "on green". Well, Bella had a warning code the other day.. which to the horror of new kindergarten parents means she was warned for a behavior..in this case singing in art class. Only my child.. So after much family discussion over when singing is appropriate, I was of course ever eager to hear if today was a better day. It was, and as I drove along I thought about when I was in 2nd grade and we had the Sailing Ships scale. There was a long strip of water above the chalk board (yes chalk - it was a looog time ago) and if you were having a good day your ship would hang out in smooth waters.. but if you were having a rockier day.. it would mean turbulant seas for you..I can't tell you the range my ship would travel thru the course of a day.. chattiness landing me in the rough and overly exuberance with raising my hand to give right answers pushing me back to the smooth. Well nothing has changed in that department it seems..
After Sam's brady episode tuesday night, I feel doomed to rough waters but with the start of a new day and some good progress in his speech therapy session along with a visit from my sister Erica from Germany (here for a few months with baby daughter in tow), I began to think we were smooth sailing. I noticed some raspy breathing but figured he might be fighting a bit of teething extra saliva and headed out for a rare lunch date with a friend who had yet to meet Sam. It was a wonderful lunch and then upon heading out I offered that she might want to hold him. I barely touched him and upon rousing, he began to have a small brady episode. The alarms did not go off but I knew HR was dropping fast, he was tight and stiff with very subtle color change and then..he was back up and looking ok again. What I would call a light episode. I should have known this was the turn to stormier waters for our ship...
Afterwords, I noticed he sounded more wet in his breathing but we have had this before with the tracheomalacia. I went ahead and made a Dr appt within the next hour. Before we got there he experienced a major blue brady episode.. the kind that sends me reeling. I am on the side of the road..in a panic. No mother should ever have to see her baby in this manner. It is absolutely horrifying. By our appt time somehow his breathing had cleared but they wanted the neurology people to give feedback which of course we could not get them on the phone while I was there.. so we headed home. The pediatrician said we needed to ask the neurologist about emergency seizure meds, adjusting his current seizure med levels and possibly writing a script for an oxygen tank to have at home for emergencies. They seem to concur with the cardiologist that these episodes are seizures and not obstructive apnea from the TM that then cause the HR to drop to dangerously low levels. Upon getting home Sam was sleeping and taking a feeding in his crib when I heard him crying out. He seemed oddly arranged in his bed and would cry out and then get quiet but not respond to me. He would turn his head away and seemed distant and every now and then his hand twitched a little. He would then seem to suddenly come out of it screaming. This same behavior had been noted 2 weeks ago but Jason and I were not really sure if it could be seizure related as it appeared differently than the one instance when we were convinced of seizure activity.. I think waking up seems to be a time when this happens if I can draw any correlation. Anyways, at least there was no brady during this strange period from 4:30 - 5:30.. just alot of strange back and forth and me being completely confused. Jason came home and shortly after he must have gone into some postdictal behavior as he laid limp and moaned quietly in his arms. All the while I waited for the emergency neurology nurse to call me back. She did call and ordered an increase to his meds and an extra dose. She said sometimes the levels are too low and also said his seizure threshold may have been lowered if he is fighting off anything. It was a rather long night of no sleep and worry. Stormy waters for me for sure.
Today however has gone better. I did not do anything productive and held Sam quite a bit as he was having more of the wet breathing from time to time. I hate to run up to the Dr each time it sounds that way only to find it has subsided.. I end up videoing much of this stuff because I think if I do run up there and they listen and he is fine..maybe they won't think I am a loony toon mom. I then mainly spent the day holding him and enjoying his sweet face and so all in all.. today was far smoother waters. I hope all of your days end in smoother waters. I have a new prayer to add to my list for my choir directors wife who had all of a sudden gone into remission from treatments for her stage 4 cancer but apparently is now no longer in remission. My heart and prayers go out to their family.