No Place Like Home

Well we are sorry we did not get an update up yesterday. Hope everyone that checked in saw the Twitter update on the sidebar that had us homeward bound. Yes indeed we are home and it is nice to be here after 9 days in the hospital. The downside is it is more like a 4 day pass and then we have to return for another indefinite period. The decision was made to go back to the operating room solely to put in a central line. They want to do something called a cut-down central line. This is simply a more invasive method of threading the line through the veins. Given Elias different anatomy structure the standard method just will not work, which is what they attempted on Thursday. Since they were unable to secure O.R. time until Wednesday, they saw no point in keeping us there just to wait. They did leave that decision up to us and it was contingent on us feeling comfortable caring for the NJ feeding tube. It really is not difficult to handle, not much different than the G-Tube. The only down side is if it comes out we can not place it back, so it would require an E.R. visit and we have to run his feeds continuously so no rolling around break times for Elias.  He is doing well and was very excited on the car ride home. He is enjoying his old home routine as much as he can and seemed very happy sleeping in his own crib last night. It was a beautiful evening outside and we attempted to take a walk with Elias. It was cut short because Elias kept coughing up secretion and needing suctioning frequently. It was probably from the sitting up and getting things moving since he hasn’t really been able to do that much in the hospital. It seems as though Elias is still adapting to the new trach tube, but there are the other internal factors (blind pouch and tracheomalicia) contributing to his struggles. His oxygen saturations are fine and respiratory rate good, a little more labored still and his heart rate is still slightly elevated, but nothing outrageous. He is stable enough to be here are home we just keep a little more watchful eye than normal.

When we go back in on Wednesday it is possible that the central line placement will not be successful and that will really pose interesting problems. They may or may not admit us even if it is successful. A lot depends on when the G-tube revision and/or the tracheal pouch reconstruction is scheduled to  take place. So as usual plan for the worst and hope for the best. We are getting quite use to that and we honestly find that it is a huge help dealing with all the changes and constant issues that crop up. I think I mentioned this before, but it is worth repeating. It is easy to forget how complex Elias is especially since he is doing “well” ( a very loose interpretation of that definition) considering where he started. Also his personality makes it easy to forget his complexities. Many of the doctors here have commented when they first meet Elias they are pleasantly shocked by his appearance based on the history that have read. Many of them have also come back to us and told us how interesting Elias is in terms of the challenges he presents. We also heard on several occasions from various medical staff that Elias really has a lot going on. This one really got us thinking. I guess we have grown so accustom to all this that we have a different perspective. Not that we have forgotten, but it is natural to adapt and we have. Not that adapting means easier, but it certainly freshens your outlook. The other thing is that medical professionals see and look at all the small and underlying issues that we group into a larger description. That also makes it seem a little less overwhelming, but there are many small things going on behind the scenes causing issues, for example the tracheal bronchus we just discovered. Even though these doctors are at times scratching their heads and looking around for answers they have the experience to relate to this case. Rare and Complex is their specialty, particularly the Pulmonologist and ENT doctor. So Elias is in good hands and has worthy opponents to challenge :)~

Something I have been working on for several months is the addition of a live video feed for Elias. Some of you may have noticed or even been lucky enough to catch the tests. I was able to use some of the down time in the hospital to really focus on this and think I have something that will work. It will be from a external site (until I can figure out how to embed the feed here) and when we are broadcasting we will have a link on the  sidebar via twitter. As we get this rolled out please send us feed back on your experience with this. It will be at random intervals and times at least for now, so you’ll have to check often or you can follow Elias on Twitter. For those that have us on Facebook, we will update our status message to reflect the on air link as well. We will also try to establish scheduled air time so that it is not a chance encounter for everyone. We think it will be enjoyable for family and friends to see Elias playing and doing his thing during everyday life. Hopefully it will work out as I hope it will for everyone to enjoy.