Friday Braden was scheduled to have his new mediport flushed for the second time, to ensure it stays unclogged. When the home health nurse tried to access it twice, we had no luck at all. This was very distressing, as this is the piece of equipment that can save Braden's life in the event of another distress episode. So we had to take him to the ER by surgeon's orders, to have them perform a special procedure - but given that Braden's mediport is only 2 months old - it was very odd that we would be having any sort of blockage problems with it this early on. So the ER nurse decided to attempt access & flushing with a different size needle than home health, and praise God... it worked just fine!! This was such an emotional relief. To give you some idea of what this meant for Braden... his mediport is like his pacemaker - it helps make things work right when the body won't or can't, so you can imagine the high anxiety surrounding a supposed problem with it. Once we knew his "pacemaker" (mediport) was working fine, it was a HUGE emotional weight that was lifted... as getting the mediport was a very difficult process when it should have been a quick & easy surgery, and who knows what losing the mediport would mean for what would be in store for us next. But all is OK at the end of the day, and we are SO very grateful!!
This past week has given us some happy memories to share. Nana and Grandpa Wilson flew in from Kansas to spend a few days in the record heat in Louisiana. We tried to beat the heat Saturday midday with a lunch at local seafood mainstay, Ralph & Kakoos - so they could also pick up some of their favorite hot sauce we got them addicted to:-) Saturday evening we took them to their first hot air balloon festival, where they got to enjoy a mass ascension & hot air balloon race, paratroopers, balloon glow, special forces sparkler paratroopers, and fireworks with Braden. The Heckert family (Doris, Jonathan, and Jackson) met up with us for the later evening festivities.
After church on Sunday, we decided to check out the champagne & jazz brunch at the local downtown casino - it was excellent! We decided to give them a real Louisiana experience by doing a small scale shrimp boil - complete with andouille and corn on the cob.
Daddy stayed home Monday with grandpa to put guttering on the back of the house, and we broke in Braden's new stroller with an evening walk in the neighborhood. (Braden's new birthday stroller only lasted about 90 days - I guess they just aren't made to handle Braden's 50 lbs of medical equipment too!!). After an introduction to Emeril's crawfish pasta, a calorie-burning outing was well in order, even though it was still in the mid nineties at 8 pm:-)
Tuesday evening we decided to have a cook-out, which turned out to be a good thing, because we had a major storm blow-in and wreak havoc for about 20 minutes before it caused us to lose power, and then blew right on through. Since we were grilling, we didn't have to worry about getting dinner finished - so we all ate by flashlight lamp, and the Wilsons from KS got to see what it's like to be in post-storm mode in LA. We gave up for a while and went to Sonic for something cold to treat ourselves with, while we waited for electricity and AC to be restored. Luckily, it was all back on by the time we returned home. The interesting thing is, while we were reliving memories of hurricanes and storms past - uncle Scotty happened to be in Hawaii trying to avoid hurricane Flossie while on vacation, and WE were the ones to lose power:-)
Wednesday morning we had home-made chocolate cake for breakfast, since we couldn't finish it without electricity the night before - and then we took the grandparents to tour the stadium, shop in the bookstore, and have one last lunch with us before they returned safely to KS.
Lastly, some very WONDERFUL news to share... most of you know we were waiting for some big blood tests to come back on Braden. All of these nerve-racking tests came back negative - PRAISE GOD!!! This means Braden DOES NOT have a diagnosis of Tay-Sachs, Krebbe's, or Goucher disease... we still don't know exactly what syndrome he may have, but we are looking forward to a future muscle biopsy to tell us more, we HOPE. For now, we are settled with him having "Braden Disease"... and coping with his unique issues and the wonderful blessings we have received by having a child with disabilities, even if the disabilities aren't all named at this point:-)
God bless - thanks for checking on us!! Leave a note for Braden's blog scrapbook by leaving a post if you have a moment.
Kodi, Brad, Braden
