This past week was not a good one for us. Now we are in the PICU at Sacred Heart and have had some pretty intense and horrible moments... I am trying to look on the bright side that we have gotten through some tough trials and maybe amidst all the specialists here we might find answers. God has a plan for us this week and I have been praying about it.. I think we are going to get a better picture on things soon.. I can't explain it but I just feel it. We have to.. this is pure hell. I never talk that way or use words like hell often..but that is how this feels. It is the lowest of low and I am so distraught that I have to believe there will be some light at the end of this tunnel or I will go crazy. I am sitting here at nearly midnight and I listen to Sam's labored breathing and looking at all his eeg wires and heart moniters and feeding pump tubes and I think.. it won't.. it can't always be like this. This sunday was supposed to be his baptism and 6 month birthday bbq with family..but that feels a million miles away now. Tonight I am back in the dungeon that was his first few months of life. Sam is enduring more right now than most of us will in a lifetime but he will get past this .. I know he will.. there has to be a better future for him. I have to have faith that whatever Gods plan is for Sam and our family, he won't let us wait too much longer to get an inkling on what to expect. Living in the dark is exactly that.. dark. I think part of the way I think of Jesus as the Truth and the Light is that is what my faith is standing on for me...light and truth amidst darkness and few answers. I have to have a foundation or I am just falling down a well. I have to have hope against all my natural fear and doubt.
Last week I may have written that we had a day when he experienced some bradys, rough breathing and then some colic like crying and then silence type seizures in a long series over about a 1 hr period on and off. We had called the emergency number for our neurologist who ordered an extra dose of his seizure meds and an increase in the dosage. Our pediatrician had listened to his lungs and found them clear but we continued to hear some sounds from time to time. Then two days later after being put down to bed he awoke with what seemed colic like crys and yet it had a spastic stop start rhythm that concerned us.. I think it was also seizures. He then went several days of alot of sleep and not much change. Then this week on tuesday night I recorded a middle of the night brady (low HR) event that left me quite unsettled and worried.
The next day he had a therapy session. His therapist and I discussed the fact that he sounded somewhat wet in breathing, possibly fighting his secretions. But his lungs sounded clear to her, a nurse. We wore him out on tummy time and put him down for a nap and she left. In a little over an hour, I heard Sam's alarm and I ran in to find him bradying silently while sleeping. His color was washed out and then he seemed to awake from my presence and start arching and then into a sezure looking brady event. I moved him to his side but he still sounded quite wet when it was all over. He proceeded to struggle in his breathing to the point that he seemed unable to manage his airway.I had called the Dr and discussed things like bulb syringing him among other things but in the end nothing was working and I decided it was time to hit the ER. My mom got to my house and took over watching Sofie, Jason took off to pick bella up from school and Sam and I raced out towards the hospital. He had 3 brady events on the way and was in the posture that looks like a seizure when we arrived in the small local ER. Nothing much was accomplished in the ER that night as he seemed to get exhausted and relax. They did breathing treatments and chest x rays for the loud breathing but basically told us we could go home and watch him for changed or go on to Sacred Heart. We probably should have just gone on to Sacred Heart but it seemed like he might be past the worst of it. Well.. things got worse.. That night and the next day were a hodge podge of him looking just fine for a few hours of the morning to down right struggling at night...even with an oxygen tank that was ordered for him on him. So today after a chest x ray and rsv test in FWB, we are now here in pensacola at Sacred Heart again. He did not have RSV and his chest was clear but clearly..he was getting worse.
Once here.. Sam began to have little HR drops and d sats. I got annoyed because the intern on his case immediately kept drilling in her view that he must be refluxing...ahhhh.. I about walked out of the room. That is when I had to explain that way back in the beginning we had heard that possible opinion before..it was not right. He had a reflux study with one possible reflux in a situation where they chugged barium down his throat in about 500 the rate that he usually would get it and then layed him down flat.. any baby would leak some or spit up..or internally reflux..not sam.. He does not have reflux.. but.. even further we had the reflux surgery (fundoplication) done anyway for fear of the prevention of any future reflux that perhaps he could not handle if it did appear. He also takes prevacid everyday.. he is not refluxing. So I bit my tongue and let her gab away about the severe power of reflux..and I wanted to say... does it make you unable to suck, swallow? Does it make you have low neck and trunk tone? Does it make you have seizures? I would love to believe it was reflux but it is just not the case. apparently many parents of kids with odd diagnosises and syndromes begin this way.. with a question of reflux..so strange.
This same intern really amazed us though when Sam's HR moniters and d sat moniters were going off and we called for help and were slow to receive it.. she finally got there when he was on the way back to normal a few steps behind the nurse and said to us..it must have just been the leads..he is fine. I explained that this was not a false alarm and that this one was indeed true. The nurse then confirmed that he was dusky when she got to his bedside and that was after he was about done. The worst part of our night so far came however when we watched Sam have an episode where his HR got down to 30s and dsats to 60s before he started recovering.. it lasted much longer than usual at about 3 minutes total. We captured the end portion on video. horrible moments for us..over and over..everytime I am left shaking. I was thankful the nurse was there to have eyes on it as I hate having to relay things. It was hardly reflux. So due to that event..we were moved to the PICU where he now is undergoing a continuous EEG. He must have worn himeself out beccause he is sleeping better than he has in 3 days albeit wheezy sounding with small bradys and dsats.. So Jason has gone back home and we will see if they can come back in a day or so. For some reason I am feeling a bit nervous about being here alone when they read his EEG results.. will it show improvement or a new finding.. I have been leaning heavy on a fear of something called infantile spasms. I have no reason to know if that is something he could have.. but for some reason I can't put it out of my mind when I read about it..I think about sam's quick stiffening moments when he arches his back and neck all day long.. could he be seizing then too?
As I was about to finish this post Sam had a MAJOR blue brady episode (I really thought he was going to die..) It was soooo horrid. WAY WORSE THAN BEFORE.. How can I see these things over and over.. it is absolutely horrifying!!!! I think it was a seizure with super low HRs and d sats I can't even post.. the nurse said she saw 0 and hit our room like a bolt. I know I was seeing dsats in 40s myself minutes into him going back up. I am utterly in shock. Everyone was in shock. They all kept saying it was good that we had come to the PICU. He was bagged and resuscitated over a very long period. I thought they were going to have to intubate him or get a crash cart when I saw them bagging him for so long and he still delayed in recovering for minutes. Since then he continues to have small bradys..will this night ever end?