Yesterday turned out to be a bit taxing for Samuel so we are taking it easy today. After some slower GI motility this week..not much output and with meds not moving out of his stomach very well and then followed by a night of GI pain, Sam had a rough morning yesterday with a big brady incident and now is having some similar GI issues today and so I am trying to keep things calm.. of course as is becoming a common theme.. the nursing company could not come up with staff today so we have layed low and hung around home. He is having a better afternoon so hopefully we avoid any further issues. Here they are in the backyard playing on the swing set. Sam loves his swing but can only handle short periods as he begins to slump over and grow tired.
The fun of yesterday's issues really began Tuesday when meds went in at 6 am but by 10 am he was in discomfort so I vented his feeding tube, which basically means attaching an open syringe to let out the air. I got alot of residual meds coming back out which after that length of time means he is not moving anything on to the intestines for digestion. We now already put all of his feeds in the intestinal port since his stomach has such delays but usually he processes his hourly pedialyte and the meds in his stomach port.
SO that was our first clue. Most of the day he was napping or playing well with some transitionary periods of discomfort. We slowed down the feeds and switch to total pedialyte for a few hours when things were getting too uncomfortable. From time to time his breathing was louder with more "accessory" effort as the nurse put it with the retracting and nasal flaring and sucking in at the neck. But by Wednesday morning he seemed fine when the night nurse left. Sam had occupational therapy at 8 and we started some toy play when she first arrived. As I was showing his therapist how we had set up a more organized system for his fine and gross motor toys, Samuel decided to take a plunge from his balanced sitting position in front of the nurse, hitting head-first onto his little peek-a-boo toy. It probably scared him more than anything as there was a bang with the contact. I look over to see him sharply frozen in a breath-holding episode in the nurse's arms. This is where he stops breathing out of some level of stress. We think it is the trachea collapsing in his moment of wanting to cry out (sam has a weak cry that he uses very little.. crying requires too much effort for his throat and bulbur muscles) and basically getting his airway stuck in the closed position. It could be neurological behavior or it could just flat out be the way he throws a fit as some healthy kids do this too but it looks rather like he is trying to breathe but is obstructed and there is no sounds at all or movement of air.
He had major color change and the therapist seemed like she might jump out of her skin. The nurse did exactly as I would hope and stayed calm and nuzzled him to her chest trying to ease him to take a breath. I really was not worried as I have seen him do this before and always recover but there have been a few times that he fell over the preverbial cliff per se and required resuscitation efforts in the hospital. I have seen this happen to other kids before where they get so upset they kinda hold their breath but usually they recover alot quicker than Sam does at these moments. These are different than his bradycardic spells which come out of nowhere. Well anyways.. it was no biggie in the end and I thought he seemed fine but what I did not think about was that he was already working on more limited energy from a night or two of tossing over the GI stuff and this upset episode may have been just what he needed to bring it all back on.
Within minutes of the head bump incident, Sammy began having the GI pain again and we had to back off of his feed and end his therapy early. I felt he was calming and heading towards a nap so I left him with the nurse as I had scheduled my first hair appt in maybe over a year. I know that is ridiculus as there certainly should have been five minutes to do this but really the year has flown by me. So.. I had been looking forward to it and I thought it would be a relaxing experience.. a chance to have some "normal" time to myself. Well, turned out that was not in the cards..
Within moments of the stylist washing and getting set to cut my hair and just as we got to chatting about our daughters..the cell phone chimes. It was the nurse. It is never good when the first thing they say in a shakey and somewhat panic-sounding tone is "Now I don't want to upset you.. don't panic.. but we had some problems." She went on to explain that Sammy decided to have a big episode with his heart rate dropping from 130s to 30 in about no time flat. She thought he would recover from this right away as he sometimes drops heart rates and goes right back up but this time his sats dropped behind it and stayed down in low 70s so she intervened with oxygen and he eventually came back up to safe levels. I know this happens and some of the episodes are far more concerning that others but of course then it was hard for me to relax and let the stylist cut my hair because I felt so jumpy and nervous and, basically, a worried mess.
I checked back in later and he was fine but I never feel completely relaxed that I won't leave for an hour and never see my precious boy again. I lost my dad in that most horribly shocking way and with Sam it is actually somewhat expected that he will do life threatening behavior on occasion, although almost always self corrected, and more rarely requiring medical intervention. This is the hardest part of life as we know it now.
I can handle the tubes and countless medications and how to handle it when random people ask me "What is.. wrong with him?" and how to answer it without saying something like.."his brain is dysfunctioning and he has multi system issues". I could just say mitochondrial disease except that #1 noone knows what that means and #2 we think that is probably secondary dyfunction to neuro deficits or a hypoxic chain reaction that took place in pregnancy/ at birth due to the nature of certain events and the fact that no genetic connection has been identified. I have learned to now say something like.."He is medically complex" or "he has neuro muscular and nervous system challenges".
I have even learned to accept the concept that God did not make his life this way but he has made it so his journey, although different and far more difficult.. is special, meaningful and unique for all that he is doing to shape our lives and those around us. The girls seemed to have adapted to this as well.
I have learned that I can't always take the pain away and I am no longer asking God why Sam has to endure it.. because in some ways I know the answer is that the why rests in all that Sam has done to witness to others and change our own lives, values and beliefs. The biggest area where I am still struggling is in what yesterday and everyday further instills within me..pure and basic fear. I tell myself all the time that this is our new normal, there is no room for fear, and that his "misbehaving moments" as we have tried to call them in a light manner around the girls have become somewhat expected even though they comes on unexpectedly. I try to convince away my worst fears. I pray about them and try to find some peace. Those reading are probably done already with reading about my search for peace. Some days I think I have found it.. other days, not so much.
People who pray for Sam search me out for reassurance that he will be o.k... that he will (as they put it so often) "grow out of this". They need me to convince them of that when I can hardly convince myself. I love my family and friends. They want to believe like we do that this is just one small phase of his life and that I am strong enough to deal with it. They seem to believe in me far beyond what I can believe of myself. I am not going the other way and giving up in anyway.. but I have this layer of fear. I think I could live with working through these physical disabilities or challenges but will we have endurance to go years and years of constantly being on extreme alert about cardiac arrest? I type those very real concerns as that blessed baby in the room across from me is making the sweetest babbling sounds as he wakes from his tender afternoon nap. Yet..the first thought that entered my mind was.. so thankful, he woke up. He is safe and here with us. Always a corner of my mind can't help but go there.
How do I not look at him and think he might be gone if I blink? How do I walk out the door without him and not intensely feel dark thoughts that he could go through horrible events while I am gone when I know it has happened. Of course you say.. any of us could be gone at any time... but let's not weigh out the chances of that or I fear I will grow more neurotic about it.
It may come as a suprise, but my fears actually don't rest on who is caring for Sam. I feel most every person we have entrusted to care for him would never disappoint me in how they would handle his challenging health needs as honestly my expectations are just that they would do what all humans should do for eachother.. their absolute best and with a caring heart. We had NO preperation or special skill when God placed this child in our life but we have given him everything we have as all parents should with any of their children. Wouldn't most people have the same instinct.
I do expect people caring for him to be humane and professional but most of all.. to give him their best efforts and concern. None of us are God and may not be able to handle everything that arises.. some are more equipped than others but I expect that they do their best above all else and my faith in the human spirit is that most would. Unfortunately there were a few particular parties at the start of Sam's journey who we know did not do that or even care to try. I try not to focus on why. But I think that kind of negligence and disregard is rare as most everyone who has come into his path has given him their extensive kindness, humane concern, their utmost efforts to do their best and even when he mystified and escaped their understanding..they were as diligent as loving parents in helping him. The rest is up to God. That is where I need to let go of the fear and place my trust.
It is hard to believe that this beautiful child of God (exceptionally so..in my biased motherly opinon) is so very vulnerable. I sometimes think it would help me if the evidence of my fears were not the invisible elephant in the room. I love that song lyric "I'm pushing an elephant up the stairs.." Clearly it makes everything more difficult, breaks our hearts over and over and sometimes just sleeps in the corner but is always there and almost a tease in that just when you have started to forget.. it disrupts everything.
I see so many others going through this same type of journey and far worse situations. I think we are all in the same realm in one aspect.. we are just parents with boundless love and concern for our innocent children. Some seem to have found more peace and less fear over time. I see God in those people.
So I pray that I get better at facing each day with less fear, anger or disbelief. If I could change things I would do anything. I know my fears are selfish and won't help the problem but it is not so easy to learn how to let go of those honest thoughts. There is alot of God's light shed in our baby boy's life too and hopefully with time I can set aside my fears completely.