We are in the end stages of finalizing everything for Beckett's next surgery and decannulation in Philadelphia. Beckett's surgery date will be: Friday, August 23. I can't believe that in one month from tomorrow we will be back in Phili and Beckett will have his trach removed. It's still seems like some distant finish line that we have been running towards for what seems like forever. So right now as it stands this is the plan...
Wednesday, August 21st, Ryan, Beckett, my Mom and I will fly from Kansas City to Baltimore. From there we will rent a car and drive to Philidelphia (about a 2 hour drive). Upon arrival into Phili, we will check into a hotel where we will have to stay initially until we can see if we can get into the Ronald McDonald House. We are currently on their waiting list. Thursday, August 22nd, Beckett will have a couple of clinic appointments with ENT, pulmonology and pre-anesthesia. Then Friday, August 23rd Beckett will go to the operating room.
In terms of the procedure, Beckett will have what they call a single stage LTR. It is basically the exact same surgery as last October, the only difference is that they are only doing one rib graft placement and the trach will be removed during the procedure. Once the surgery is completed Beckett will be placed in the ICU where he will remain intubated (breathing tube in) through his nose for anywhere from 4-6 days. The breathing tube will act as a stint and help to ensure that the newly placed graft stays in place and doesn't collapse. During this time he will be fed via feeding tube (through the other nostril) and TPN (IV fluids) until he is extubated (breathing tube removed). Once the breathing tube can be removed and assuming his airway looks good, they will allow him to start trying to eat orally again. Once he is taking in enough for food orally, they will pull the feeding tube and we will be discharged from the hospital. Total inpatient time is estimated to be anywhere from 7-15 days.
Then we will return to CHOP every Friday for trips to the OR for Dr. Jacobs to perform bronchoscopys on Beckett's airway. He will look at the graft and ensure it is healing and no showing any signs of potential infections, collapse, etc. We will continue the Friday trips to the OR until the graft is healed over and Dr. Jacobs is comfortable with us heading back home. Last fall I think we ended up make 5 or 6 trips back to the OR in the weeks following surgery. I am hopeful that since this is just a single stage graft that maybe we can just go back to the OR 4-5 times, but we will have to wait and see to know for sure.
For now and the next month before surgery we are focusing on making the necessary arrangements to be away and keeping Beckett healthy. Seeing that we are now just about 1-month away we will likely go on "lock down" where we limit visitors, trips out of the house and become hand washing/sanitizing machines. It will be hard to "stay in" giving that it's summer and this is usually the time when we can actually get out of the house since it's not cold/flu season, but it's not worth risking Beckett getting ill and having to reschedule everything.