Thursday, March 19, 2009
So we found out Braden had THREE different tracheal infections that we are continuing to treat with inhaled meds and added an oral (okay, really g-tube) antibiotic too. But we THANK YOU, GOD for being so good, and letting us keep him OUT of the hospital this time around. Braden is pretty normal for not feeling well, just a little more sleepy than usual, and a little more touchy about being "handled"... otherwise I don't think we'd even know. We go for our bronchial scope the second week in April, so we will know a lot more about this new kind of trach tube and if Braden has any granulation tissue around the stoma which could be the culprit of infection. We will post a reminder, as we will need LOTS of prayers going in, as he will have to be sedated, and as if we don't have enough to worry about, we are having a lot of problems with his medi-port. This could mean an additional surgery and multiple needle sticks:-(
Some good news, Braden's Great-grandpa James got to go home after a bout of intestinal issues.
Also, our Godson Brandon Jermaine (named in honor of Braden) was born last week and is healthy and happy at home - we will try to get some pics to post soon... and Braden had another cousin born on St. Patty's Day - Ethan Roger, also healthy and gets to go home today.
So we are getting ready for Braden's birthday next month, hosted at the Seize the Day Walk for Epilepsy of LA. If you'd like to support his team or join TEAM BRADEN WILSON, you can log on at: http://www.epilepsylouisiana.org and click on "start a team", "Agree" to the terms, and then click "Join a team" and select "Braden Wilson" in the pull-down menu. We will be doing the 1K fun walk at 8:30 that morning, joining the whole group for awards and some food and snowcones while the band plays - who I have been told will be singing Happy Birthday especially for Braden. Then we will head over to the Mike the Tiger habitat for some catered VooDoo BBQ, desserts, and treats - the kids will love the Tiger cage - it's a HUGE habitat!
Thanks for the continued prayers... mommy is in shoulder re-hab (yay, no surgery) and will be headed to her national advisory board meeting and then the national convention next week, leaving daddy to play "single father". As soon as mommy gets home, daddy is off to his national convention (strangely, the exact same city mommy will be in the week prior!), leaving mommy to play "single parent". Pray for us to have the additional strength we will need to do it alone, and pray that Braden continues to heal well.
Our thanks and love,
Braden Wilson & his parents!
Wednesday, March 11, 2009
Braden is not always a fan of his sponge bath with daddy - as you can see in the pics.
Since Braden has been staying so healthy, I guess it was time for him to remind us who wears the pants in the family. He decided to give us a little scare that would bring us back to OLOL, but this time it was just the medical center side to see his doctor and get labs done. We had seen a little bit of blood in his sputum (fancy word for saliva, also referred to as "return" - the stuff that we get in his suction tubing "return") this past Friday, but didn't think much of it since occasionally this happens when you suction a lot. We thought maybe he just bit his tongue like he has in the past, but it went away and we didn't think much of it after that.
Sunday is trach change day, and while we saw a little more blood in his suction tubing, again, it was so minute, we didn't give it much attention. When we arrived at the daycare (mommy and daddy together since the truck had to go in the shop), he was drooling and spitting bubbles like usual, but it had some blood in it, like when he had bitten his tongue before. We decided to suction so we could get a better look at where it was coming from, and got a significant amount of blood return when cleaning out his mouth, and to our surprise it was in his nose too. Then he coughed and it was coming out of his trach too!
We called the doctor who could see us after lunch. We hoped it would slow down so we wouldn't have to make a trip to the ER, but blood/saliva mix was about half and half so we weren't in total panic mode just yet, just mid-level panic:-) We decided to give him a 3% saline nebulizer treatment, with the rationale that salt-water helps heal open wounds... and it seemed to work because the rest of the day, and by the time we saw the doctor and took labs, his bleeding had subsided - PRAISE GOD!!
But our trip to the pulmonologist opened up new avenues to explore, and Braden was coming up on being due for a regular bronchoscope (trach patients have them regularly to monitor the site and any changes in size for children to accomodate new trach tube sizing for growth). They have moved our timeline up to see what's going on. Our conclusion without a scope to say for sure is that he most likely has an infection just below the stoma site, internally, and perhaps some tissue growth due to infection. Sunday is trach-tube-change-day, and while we didn't get any blood return until Monday, it's possible the change aggravated the site and then moving him from the house to the car to the daycare just made it bleed. Since he's on so much air forced through him, the air probably forced some blood from the stoma site, up into the mouth and nasal cavities, therefore creating the scene we experienced.
We also discussed fitting him for a newer style of trach tube that has an inflatable cuff that will help promote some involuntary swallowing, and hopefully helping to reduce some of his secretions... we do go through about 3 bibs a day!
So for now we are on some inhaled steroids to help this probable infection, but we really haven't seen much more bleeding, so the anxiety level in the Wilson household has gone from HIGH, back down to a near-normal, with closer attention to that issue for the time being.
LaTacia (Braden's daycare owner) graciously agreed to babysit Braden this past weekend so mommy and daddy could attend the Sig Ep Alumni & Parent cocktail party & silent auction event, that mommy helped start five years ago. Mommy organized the silent auction for the first two years, and have missed the past 2 with a sick kiddo, so it was nice to see all the parents who started out with their kids as freshman, who are now in their last year with graduating sons. Daddy go the chance to do something fun with the fraternity, and... it was the first DATE NIGHT since last year when LaTacia (to the rescue again!!) took Braden overnight when mommy and daddy took a work trip to Disney.
Thanks to LaTacia and our old friends we ran into at OLOL for providing excellent care for Braden and his parents once again. Best wishes to one of Braden's caregivers, Ebony, who is on her way to give birth to Brandon Jermaine who mommy and daddy will have the honor of playing Godparents to!
Thanks for checking in,
Braden, Brad & Kodi Wilson