Post Surgery Update

Thankfully Elias had a successful surgical day and so far a smooth beginning to his recovery. Elias was under for nearly 5 hours with all the various surgeries. He woke up from anesthesia very well. Despite all the madness from the last update, we suppose if things are going to be crazy surgery is the part you want to be smooth.  The surgeon was pleased with the muscle tone and formation in Elias’ butt. This is important in determining the management strategy and potential success for continence. He also commented that the malformation was actually even lower than they had predicted based on images, which is/was a really good thing. They gave Elias a coddle block which is similar to an epidural, a long lasting local anesthetic administered into the spine. This last for roughly 18 hours and actually will limit if not prevent the amount of narcotic pain medication Elias may need during recovery. He is numb from the waist down, and with stitches in his newly created anus opening neither is keeping him from attempting to sit/stand. Nothing keeps this amazing little boy down. This is just typical Elias after major surgery. God love him! There is a small possibility we will get to come home tomorrow if his comfort is well and tolerating his feeds. The next step is the reversal of the colostomy which can occur anytime after 8-12 weeks. We will be discussing this with the rest of the medical team to see who has needs for O.R. time around that period or shortly after and coordinate it with that.

ENT did a Micro Laryngoscope & Bronchoscopy which was good timing actually given the fact that Elias stopped breathing 4 times over the course of yesterday. It actually look very good, well as good as Elias crappy airway can look as it was put. There was some minor improvement which is potentially from the flovent we restarted a month ago. While it didn’t have the effect we had hoped in preventing the spells it may be worth leaving in the regiment. The fact that there is nothing inside going on leads us back to this being a central issue which is essentially seizure or like activity. More on that later on. There were a few other minor procedures done that are not worth mentioning but there was also the repeated ABR for hearing. There is sadly not much different to report as we basically achieved a similar result. We are kind of at the same place which was very disappointing. There are a few last ditch options to try and make the BAHA work, but it could take 6 months of trial and specific intensive therapy with no guarantee of success. Katharine and I are trying to absorb this and come to a decision on how to proceed specifically.

Overall Elias seems well and handling all of it very well. We are so proud of him and his brilliant ability to fight through and come out shining so quickly as always! We certainly appreciate all the thoughts and prayers through this. It is not always easy to deal with all this, but Elias sure does make it a heck of a lot easier!