The remainder of yesterday was fairly status quo. We are beginning to think that Elias body has had enough, tired of working so hard and beginning to force him into sleep mode. He slept off and on all day long, very out of character. We did not get too worked up about because it makes sense that his body’s natural defense would kick in when it is overworked. The doctors ordered what I believe to be standard pre-cardiac surgical work-ups. No one told us about any of this and it all came out of the blue. Not that we mind, but it would have been nice to know what, why and that it was coming. They also did a chest x-ray which was an adventure because his nurse had no idea either. The transport team came to get Elias at 4pm for the x-ray and the nurses were scrambling to get Elias prepared to travel. It is not as simple as just rolling him down because of the trach. They have to have an emergency kit, back up trach tubes, portable suction, portable monitors to watch his vitals, and an oxygen tank since he requires O2 at the moment. This morning another surprise, an EKG. Again, probably standard work-ups, but someone dropped the ball communicating.
This morning so far has been a very different scenario. Elias woke up this morning very irritable and scratching himself violently. He is pulling his onsie down at the top and scratching the skin area there so much and so hard you can see the red marks on his skin. The real problem with that is this area is where his cardiac lead is placed which is most likely the cause of his wanting to scratch as the leads break down his poor skin. The even bigger problem is this is also the area his central line is located. He had managed to scratch off the dressing. He apparently started this while Katharine was still sleeping and she woke up to him being fussy and doing this. So we do not know how long the central line dressing was off. It much remain covered at all times for risk of infection. It obviously was not, so we can only pray that it had not been off very long and there will be no issues. Also the blood from the mucus fistula is back. This is concerning because they really did nothing the last time they looked at it night before last. Yesterday Elias had pulled off the attachment for the oxygen to the trach, not intentionally usually with moving around. He did this a few times throughout the course of the day. We noticed that as soon as the oxygen comes off he begins to drastically drop his oxygen saturation levels. One time he dropped from 100% to 73% in less than 5 seconds. That really demonstrates to everyone how aggressively this problem is progressing. We are very glad that we are not having to wait for next week to do this surgery. We only hope that this has the immediate results that some doctors are predicting and not a need for further work as others are predicting. Our jury is still out on what we anticipate. We just want him to be better ASAP. I think the biggest concern we have right now is something showing up in the work-ups or happening today that will force them to postpone the operation. We have been asking them since Friday to try and be proactive to prevent this, especially since they are also very glad the date was able to be soon rather than later. They realize how much worse this is getting and that they are limited in what they can do prior to getting this operation completed. However, they remained passive. Please pray for a safe and event free day and of course for tomorrow’s operation. Thank you all, we will update later today how things are going and what the cardiac surgeon comes to tell us today.