Last night was an incredibly long night. I don't think I slept more than 2 hours as Sam had drastically up and down heart rates from 140 down to the high 50s (far too low for babies) all night long, setting off his alarms and basically making me a nervous wreck. Luckily his O2 sats were pretty good because as he would dive to dangerous HR levels, he also climbed back up fairly fast. I did not note any color changes which usually come with HRs in the 50s if it is prolonged. However at any moment I know the risk of cardiac arrest looms over him.. in moments like that I find myself requestioning the need for the pacemaker.. but it is a rare activity while on his meds and yet it is sooo strange to sit there watching it happening over and over..dowwwn and popping back up...doooowwn and popping back up. I hooked up the pulsox and not just the HR moniter and that gave me a little more peace of mind that I might catch a dangerous desat. I am always worrying the down won't pop back up as has happened on those scarey occasions in the past. So I slept in these tiny increments jumping every few minutes at the alarms. By morning I was so conditioned to them that I did not even race to the crib anymore unless the beeping was sustained more than the few beeps. That is a horrible feeling to be so tired you think to yourself..this is just another quick drop I won't go until it hesitates too long...but what is too long? Why does our parenting skill have to include a plan for how long a low HR should be allowed to hover when before at night all we worried about with our girls were fevers and bedwetting?
After morning meds (which I pushed a little early) he seemed to rally and I began to question whether we might have not given the full dose before bed..when you are giving 7-10 meds every few hours it is not unusual to worry about this stuff. I can't put into words how involved his medication regime is other than to say his nurse was here those precious few days and hardly did anything other than prepping meds (some are crushed, others are drawn up by needle and others have to be dissolved) and then coupled with the administering of his 18 hour feeds which have to be constantly remixed as they are a special formula that can't be just made once and put in for all day use, I don't think she sat down once. It is a big job.
I thought back and remembered specifically pulling up the right amount last night and so then I started questioning whether he is outgrowing the dose for therapeutic levels or..is this a sign he is getting sick which is why he has bradyed more in the past. In the past day or so I have gotten sick myself and what I thought started as just sinus issues has developed into aches and yucky weak feeling (probably exacerbated by no sleep). I am just praying Sam does not get this bug whatever it is. I am also praying for Bella's little buddy who is fighting a big bug today. Seems like alot of kiddos are pretty sick. He is running 103 fever, bless his heart, and I hope he rallys soon. We gave him a ride home yesterday and as we had just found out we lost the nursing, Sam was in the vehicle in close quarters. UGHH. Praying he does not catch what all these kids in the schools seem to be fighting. At least the girls have been doing rather well.
The girls got an art project in after school while I busied myself with Samo and I am learning they are far less likely to have "moments" if they are kept on task in some form of activity..
SO..I can't wait to crash tonight. The worst of yesterday was the news of the nursing being suspended till we get some kind of billing arrangement worked out..we still have no new insurance confirmed and even when we do have it, we will have already exhausted in the last two weeks the annual limits. So..that is when we would need to start fighting for full time nursing but without a new policy we have no one to fight for it with... A solution is out there somewhere.. somehow.
One good thing did happen in Sam's therapy. He is able to hold a prop sit when positioned on towels in an empty hamper basket..oh how cute he is grinning about his accomplishment! He does not hold it for long but he is working on it. His physical therapist was concerned that his endurance seeming to be getting worse as she could only work him for shorter periods lately but we feel this is transitionary from day to day. If that could improve, he would make huge strides..well I guess that is really at the heart of it all. If he had the ability to effectively make energy, he could do anything. Dysfunction on some cellular level is just holding him back.. we don't have genetic origens on this and I think personally that the cellular dysfunction was caused by a chain of events brought on by prolonged stress inutero but until we understand his situation more fully we just have to pray for optimized energy or "en-g" as Sofie referred to it with Jason last night. She said he needed his sleep so he would have his "en-g" for the next day. I intend to post a link to the united mitochondrial disease foundation website www.umdf.org to the sidebar area when I can figure out how, so those of you who follow my ramblings and have never heard of Mitochondrial Disease can read up on the details. Don't let yourself read too far into the scarey online stories. We are going to be the ones that defy the odds and overcome the hurdles. He has fully proven his stealth fighter status with me. So now I need some sleep so we can have a better day tomorrow. :)