The short update for today is coming soon, but I needed to get this off my chest in an effort to organize my thoughts on this matter.Today was very stressful! I am so glad it is over, but we are fuming mad now and can not sleep. Let me tell you why! The Cardiac ICU setting is very different that your typical hospital room. It is a much more controlled environment, for very obvious reasons and completely understood. One of those being no food or drink in the rooms or the unit. No big deal, but it does force parents to leave the room for periods to nourish and hydrate. It is suppose to be a time to decompress because generally if the child is there serious issues are going on. Katharine and I decided to take our dinner break…together. God forbid Mom & Dad try to see each other more than just in passing. Katharine also needed to go home for a shower and to get things for work so she could leave straight from the hospital. ICU is one to one care ratio and Elias was sedated to the point of sleep and had his arms restrained. One would think that a child would be in good hands in this scenario. When we originally came up with the plan the doctors were going to give Elias intermittent paralysis medication to force him to relax because of his very labored breathing even with the ventilator. That plan changed and we hesitated going forward with out plans, but thought it would still be fine. Boy we were dead freaking wrong! We left at 8pm and returned around 11:30. We had a sit down (together being the important part) dinner at a place that was not a hospital cafeteria! Then proceeded home to gather the items Katharine would need for work tomorrow. When we returned the shift for Elias nurse had changed and Elias was now in leg restraints as well. Apparently, Elias through the sedation/arm restraints had moved around the bed and repositioned himself laying sideways on the edge of the bed. Two problems with this. Number one, the nurse knew Elias was trying to move any chance he could so if she was unable to watch him she could have told us now is not a good time for you to go, or had another nurse keep an eye on him. Secondly, and more importantly, Elias is not in an appropriate size bed for his age and size. He is in an adult bed! We have voiced our concern about this, but told this is the protocol size. Adult beds do not have solid rails there are small breaks between the two segments. I’ll give you two guesses where Elias’ head was! Yep, right between the rails. He could have fallen out of the bed or worse! So how do they rectify this? Put leg restraints on the child! This was the ending to an already frustrating day. To make matters worse, and we should have known better, earlier in the afternoon there were several rooms that did not have parents with their children. The nurses were all gathered in the middle of the unit out of view of their patients, laughing, being loud and cutting up about inappropriate things. It was very unprofessional, but it really got me to thinking about it in retrospect. It is no surprise based on that behavior we witnessed that Elias nurse was not paying enough attention to see him begin to move. It had to take some time for him to get this way because he is very heavily sedated and in arm restraints. I have no doubt that she had joined the party that was taking place. It appears the double standard applies, if the parents are there you stay at your post if not then you are free to roam and play. Not making anything up here, not being over critical, just stating what we witnessed, were reported to and know to be true. And people want to know why we tirelessly have someone posted in Elias room around the clock, at least one of us. This is the first 3 1/2 hours Elias has not had one of us there in all of the admissions we have had since coming here. It will certainly also be the last because the one time we take the opportunity this happens! If he would have been in an appropriate sized bed, like a crib then it would not have been such a big deal, but HE COULD HAVE FALLEN OFF! Never again will we do that. How can we now after this? We are extremely disappointed in this outcome and will be speaking to someone about it in the morning. Sorry for the rant, but needed to get that off the chest. Look for a brief update for today a little later!