Elias is finally settled in his hospital room and hopefully there will not be much more poking and prodding so he can rest. Elias is still on oxygen but only at 40%. His pulmonologist came by to check on his breathing post surgery and to consult. Apparently Elias has a partially collapsed upper lung lobe. While the doctors are saying this doesn’t seem to be a significant problem, for the moment it does not as Katharine put it, conjure visions of puppies and rainbows. We are not going to stress too much about it unless it is what prevents him from going home. To help resolve the issue they are giving him Albuterol more frequently overnight and keeping his oxygen where it is to allow his body to relax and save the energy for recovery. Then in the morning attempt to wean him back to room air. He is also in a great deal of pain and it is very obvious. Poor thing just can not seem to get comfortable. He is on morphine and will be switching to Roxicet at some point. The hypospadia repair and the bone marrow biopsy is what is causing him the majority of the pain. As always though Elias is being a little trooper and trying to be his happy go lucky self with intermittent cries that let you know exactly how he feels.
They also placed a mic-key g-tube again. If you will remember this is the style of G-tube that gave us all the leakage issues in the NICU, oh the nightmare. After much discussion we were all in consensus that Elias was just too active for the disc style g-tube he currently had. The mic-key allows so much more flexibility for him to move. They placed one today and began the feed about a half hour ago. Well, it leaked! More like gushed out, we just started to laugh called the nurse in and had pediatric surgery paged. We are thinking that they may have been a touch aggressive with the amount of water in the balloon and withdrawing some will help. Remember Elias stomach is smaller than it should be and if the balloon is overinflated it can block the draining of the stomach. We will keep you posted on what goes on with that. Hopefully, they will be in soon to address the situation.
As we updated on Twitter/Facebook, the audiologist charted severe to moderate hearing loss in the left ear. She received no response from the right ear, which is pretty much what we expected since that ear is not properly formed. She also noted his very tiny ear canals. This was via bone conduction measurements. This is somewhat of a positive because it means that Elias can have some element of hearing with assistance to start and potentially medical intervention in a few years. She was going to take the results and analyze them further to submit in a report that we hopefully will have by the end of the week. We will share more with you once we learn that information. Overall, it was a vague sense of understanding for us because it was not a clear cut and dry diagnosis. It is information that is transposed to help create a plan for amplification. So hopefully the report will help us to explain it better.
The hypospadia repair and esophageal dilatation went as well as expected in terms of being a success. His surgeon noted some signs of positive motility in Elias seeing him push fluids down the esophagus. This is a good thing to see because generally children with the Tracheoesophageal Fistula have issues with ability to swallow and oral feed.
Thank you all for your thoughts, prayers and motivating comments throughout the day. We enjoyed keeping everyone updated with the wonderful technology available, but we also appreciated the responses that helped carry us through a long, rough day. We hope many of you were able to take advantage of following throughout the day. If we get any other news of significance we will update again later. Otherwise, no news is good news and we will update tomorrow once we know what our plan is, hopefully it will involve going home.