I will start with what is on everyone’s mind, how is Elias doing and why is he in the hospital. Well this was a planned admission, but has ended up taking us down a different path and potentially elongating our stay by a few days. Elias himself is doing okay. He is a little uncomfortable, but stable and really tired. Now for the why he is admitted. The plan was to admit Elias to conduct an impedance probe study which is similar to the PH probe he had back in February to study the esophagus and reflux potential. It requires an overnight stay. He was also scheduled today for a series of surgical procedures as a diagnostic work-up for the Areo-Digestive Team at Cincinnati Children’s Hospital (CCHMC). This is one of the three teams working most closely with Elias, the other two being of course the Fanconi Anemia Clinic & the Colorectal Team. We had ENT, Pulmonology, & GI doctors working with him on this series. We met with Dr. Rutter, Dr. Wood, & Dr. Putnam (ENT, Pulmonology, & GI respectively) on Tuesday to get an initial clinic visit and discuss history and concerns. We were quite impressed and were very quickly assured why people literally come from all over the world to work with these doctors, they are the best in the world at what they do and are VERY good at it. That is a different update though. When we met with them in the consultation room post surgery we got another taste of why these doctors are touted as the Dream Team, yes that is what the staff kept calling them to us all day long. Dr Wood, who is quickly becoming my personal favorite started off by saying Elias was on his naughty list, which is funny because when I first met him he reminded me of Santa Claus. Not so much in appearance but in his jolly spirit. This was a great icebreaker, but there was much truth to what he was saying. Elias as usual is making even the best work very hard. We will post more details on things tomorrow or Friday depending on how things go because we are still processing it all and trying to make heads or tails. Confused yet? Good so are we! The just of the meeting was the more they looked the more they found, some good, some bad, some with concerns down the road, some with more immediate concerns. However to develop a complete plan they need more testing and information which will be done Thursday Morning. The biggest issue is Elias anatomy and they way it has developed. It presents challenges that are difficult to categorize because while everything is there, it is not always exactly where it should be and sometimes in very odd places. There are some issues with his lungs, particularly with his right lung and the anatomy that are not so much problem, but raise some things to be mindful of and watch for. The other is the trachea itself. There may have been some misdiagnosing, not that the trach was not needed, but more the causes. The biggest shock here for them was a blind pocket they found near the repair site of the tracheoesophageal fistula that was actually where the trach was placed rather than in the trachea itself. This could explain why Elias was able to make sounds like he does, or did among other things. They actually changed the size, type, and length of the trach today. With the upsized trach, at least for now, Elias has lost his ability to make all the wonderful sounds he was making :( They also found some other interesting items the further down they went which we will work on breaking down and explaining in the coming days.
The next interesting find goes to the G-tube, sort of. Now try and stay with us on this one. We literally cracked up almost to the point of rolling on the floor and had to explain to the doctors why we reacted this way as they looked at us as if we were completely insane. If we had not laughed we would have cried. Elias does not, nor has he ever had a G-tube! He has a D-Tube, the first one ever as well! The G-tube is too close to the pylorus, but we never imagined the wrong side. It is in the duodenum and has been all this time according to these doctors. The duodenum is between the stomach and the jejunum (beginning of the intestines) as seen on the photo to the right. This had to be corrected as it is actually dangerous to feed Elias this way so Dr. Putnam tried to blindly pass a wire for a G/J tube as a temporary fix, but was unsuccessful. So tomorrow they have to make a decision, take Elias to Fluoroscopy and place a G/J tube as a temporary fix until we can move the stoma or go ahead and keep Elias and…I can’t believe the words are going to come out, redo the G-tube. This made a lot of sense when they described what was happening and where it was and made ALL the issues we have had clear as a bell. Right now Elias has no access for nutrition until this is resolved, so it is high priority. Those of you that have been following us for awhile now and remember our then called G-tube woes are probably laughing as we did. It isn’t really funny, more ironic that we have felt this in our gut, no pun intended, all this time. It also means Elias has yet another surgery to add to his growing number. There is also another surgery for the pocket the trach was sliding into. Needless to say our heads are spinning a little, trying to consume it all and figure out what impact his all has. These are changes we were not expecting. This is why we are here though. Another look and opinion with the hope of getting things right. Sorry to leave everyone hanging on things with this. There was a lot thrown at us the last few hours. I guess the point to impress is that Elias is okay and should remain that way with most of these changes and issues. Some changes will be more impactful and of course more surgeries mean more risk. There is talk of putting in a central line as well because he is such a hard stick. his IV right now is in his left big toe. That was all they could find! We promise to sort it all out and break it down.
On a brighter note, the experience at the hospital itself has been nothing short of exceptional. Even the miscues we had today were handled in a way that was acceptable. It is just such a different mind-set here. The culture is more nurturing and there is a genuine air of desire to help everywhere. It has been a unique experience at times surreal and too good to be true. Elias is already creating a fan base here. Nurses in the PACU were walking by the door to look in at him, apparently someone told them they had to see the cutie in the room. Everyone is amazed by his story and the fact that we picked up and moved here simply for him to get care at this hospital. I think that makes them feel good, and it should. We will update with what is happening tomorrow. Thanks for the thoughts and prayers. Hopefully Elias will be home tomorrow.