Quick Update on Elias

Elias had a fairly calm night, no real issues or problems. They decided to discontinue the medicine that paralyzes him because Elias does not have good access for IVs. They lost one overnight and feared being backed into a corner forcing them to put in another central line which Ped Surgery specifically does not want to do. The reason is every place they could go and put it causes some risk of infection to another previous surgical site. So they would only like it to be done in a severe emergency. To combat this they decided to try and start pedialyte to test the g-tube and then feeds so his medications could be given through that instead. Elias had other plans for them. He would begin to Brady (low heart rate) and De Sat (low oxygen saturation), but not quite as dramatic as yesterday when he went full code and crashed. With the Brady & De Sats he would clamp down or bronchospasm. He did this mostly when the medical staff would work with him (IE; blood work, cares, suction, etc.) They realized stopping the paralysis med was not a good idea. So they started a course of it, every three hours as needed. They also increased the fentanyl dose to help him be more comfortable. Even after the paralysis meds were restart Elias was still moving, not as much, but moving...showing everyone he was still in charge here. Once a few doses were administered he went into the deep sedation they wanted, but he would still move his arm every now and then, again telling us he is in charge!! What a little fighter, we couldn't help but smile every time he did that. This afternoon his routine x-ray revealed what might be causing or at least contributing to his bronchospasms. He has pneumonia in is right lung. That really started answering a lot of unanswered questions. That is why he seemed a little off to us on Tuesday and why he did not do so well through the surgery and had such a rough time recovering. This would be why his status had not been improved yet. Fortunately, he was already being given the antibiotics he would be ordered for the pneumonia. So it has been treating it the last 36 hours, but it is still a concern. Our nurse today was telling us we don't need "freak out" but we do need to be concerned. This will likely slow his recovery and stabilization a few days. So we go into the weekend with him still in critical condition and slightly unstable.

We are headed back to the hospital for a little while, will update when we return if there is anything that changes. If not then it is straight to bed, it has been a very exhausting few days, both mentally and physically. So no news is good news tonight! Thank you all again for the terrific support, it helps us face each day with renewed faith.