Thursday, September 10, 2009
Daddy teaching Braden how to use the new igun iphone application...
So the day started off OK, and things went pretty smooth during the bronchoscope, and we found out a few things we had kind of already expected. First, we knew from the sonogram Dr. Thomas did in the office that there was some internal granulation tissue in the trach area... and the bronchoscope confirmed that Braden has a little flap of skin that gets irritated by the trach tube. He also injured himself at the end of the trach tube, which we think happens when he has a sneezing fit or accidentally presses on the tubing towards himself. Well this little scratch just wasn't healing - and everytime we were suctioning it was like ripping that scab open with the airjets pulling in the mucus... so for now our instructions are to go in one less CM for suctioning, and to put extra gauze around the trach to back it out a little bit for about 2 weeks to let that internal scratch heal.
The doc also discovered that Braden has like an extra muscle flap in his trach area... kind of complicated to explain, so we will at a later date when we are ready to address how we will "fix" this in the future. But for now all it means is that we will not be putting in the newer inflatable trach cuff until we address this issue.
We will be waiting for biopsy results and share results next week, if there is any news to share. We only anticipate having to treat yet another bacterial infection if anything - no big deal.
So, as in our world, nothing is without incident... the anesthesia team could not access his mediport. And once again our requests to bring someone in from hemoc to access it were ignored (hemoc - hemotology/oncology... the work a LOT with mediports). So they could not access him. This lead our doc to believe the port was blocked or not working. They sent us down to radiology/x-ray to see if the port was positioned OK, and then brought in someone from hemoc to access him (PRAISE GOD, AND SHE GOT IT!!) so that they could shoot a dye into the bloodstream and see if there were any blockages... nothing they could see right away - YAY!! Now we know that we just need to find a home nurse with hemoc experience and things will be much better for Braden in the long run.
So after a very long day and an additional unexpected procedure... we can say it was a successful day. I want to encourage any of you who aren't "regulars" to ask lots of questions and trust your instincts as you go throughout the day. I'm glad we paid attention - they almost forgot his fever block medication if we hadn't asked, and they almost didn't heplock his mediport with the correct dosage either - so they had to redo it before we de-accessed the port! It just got me to thinking how many families probably go through the whole experience and trust that everything happening to them is just fine... if we hadn't asked questions, Braden would NOT be "just fine"!! SO don't be afraid to ask questions throughout the whole process - you have a right to know why they are doing things:-)
Normally Braden takes about two days to shake off the grogginess of anesthesia... but yesterday he was bright and alert in post-op. He has avoided a fever and heavy swelling thus far. Brad was not surprised that when he came home, we had done nothing but snuggle since getting home. But he definitely noticed just how snuggly Braden was when helping put him to bed, and said he understood why we didn't do anything else! He was SO lovey and sing-songey too... it was the perfect end to a very long day at the hospital. Just when I started to wonder if this was a false beginning, I went to get the mail - and a FROG crossed my path! God or grandpa letting me know that everything will be JUST FINE if we just rely on God! And so we did...
We will post an update next week regarding the biopsy.
Braden, Brad & Kodi