Much Improvement & Ventilator Progress

Elias did very well yesterday and we were very pleased with his progress overnight. He did not require any pain medication or sedation. He is still on the ventilator but they were about to wean the rate back a little from 30 to 20. Now that he is doing better they are preparing to transfer us out of ICU today at some point. They are just waiting for a bed to open. We will be going to the trach/ventilator unit. There they will continue to try and wean Elias off the ventilator. They restarted Elias’ feeds yesterday as well, but we are having problems with the G-tube – Go Figure! That thing has been a thorn in our side since the day it was put in. You would think the revision we did a month ago would have made things better. The problem is the feeds are at times pouring out of the stoma and still leaking heavily when it is not. The stoma itself is still very irritated and a little bigger than it should one because Elias ripped out the g-tube the other night while the balloon was fully inflated and secondly because the disc was not able to sit flush with the skin it was moving around which it should not do. This leads to the stoma slowly enlarging. However, every time the surgery service was paged, if they even showed up to look at it which happened a few times, they would blow it off as nothing but granulation tissue or “something they would expect to see.” They did not even follow up after the new tube was placed. Now they are having to be paged again. So until they decide they have time for us Elias’ feeds are on hold again. No wonder the child has weighed the same since April! Elias is 17 months old now and weighs around the 15 pound mark which he has hovered at for the last 6 months. So from here we hope that tomorrow brings about a better plan of action now that the surgical recovery is out of the picture. We are approaching 4 weeks for this admission and 40+ days overall since August12th. The snails pace at which some things move we are begging them to try and avoid this week.

I neglected to mention in my update yesterday that we now have another new problem with Elias airway. It seems the more we correct the more we find as we move downward his trachea. They did a scope on Friday at the bedside to see how the cuffed trach tube was working. It seems that not only does Elias still have tracheomalacia below the trach tube, but also Bronchomalacia. This is in the bronchus leading to the lungs and basically collapses on expiration of breath. I had an opportunity to see it for myself in the scope, which was very interesting, but I could only hold my head down shaking it after hearing this. It is frustrating to continually discover new issues just as you begin to think you have resolved another. The bright side to this, that while to us it is a new word or new problem, to the doctors it is simply another piece of the puzzle. Si Pap could also potentially help with the bronchomalacia as well, so it seems like things do not have to change too much. That of course is subject to change.

So we take the next step tomorrow hoping to hear the thoughts and possibilities. Elias being moved out of ICU is a great step forward. There is still much work for him to do unfortunately, but he has been a trooper and will continue to do so. As great as it would be to return home as we did when we went in, it is only fair to be realistic in the expectation that Elias will need at least Si Pap. We are hoping if that is the case it will be limited use and not full-time. We will continue to pray and hope for the best, but mentally we are preparing for this. I think once we see how it will impact Elias and his ability to move, play, develop, etc we will be more comfortable with the idea. We just do not want this to set him back or limit him any further. That is our biggest worry and concern. Thank you all for your continued thoughts and prayers.