Avoid Medical Mistakes - USE YOUR VOICE!!

Most of you know we went to the hospital this month for a “routine” surgery. Since I’ve been at this awhile now – overseeing hospital staff as they provide care for my son, I’ve learned that you just cannot “trust” the system and that everything happening to you is correct, or the way it is supposed to be. I told you we were nearly dismissed without having been given a FEVER BLOCK, the WRONG DOSE of heparin to lock the mediport long term, and if I hadn’t used my parent voice and stood up for what was happening… we also would be in line for a new, unnecessary mediport surgery.

Listen to what your “gut” is telling you, and don’t let nurses or even the doctor bully you… YOU are the parent, YOU have the final decision on any medical care… they can only make recommendations and suggest a plan of care. Nobody knows your child better than YOU do… you know when something just isn’t “right” – that’s the little voice in your head you need to listen to. I’m not saying be a hypochondriac, but trust in your instincts as a mother/parent! This advice is not only for mothers and parents - but for ANYONE who has a family member in need of a medical procedure - there are no stupid questions to ask of your medical staff, and remember that YOU are in charge of the situation.

This poor mother was not persistent with the medical staff, and a medical mistake cost her the life of her child. You know that we too have been there, and a machine malfunction nearly killed Braden last fall. Looks like a good book – here is the review. http://online.wsj.com/article/SB10001424052970203706604574378762626910076.html

I have just felt this little nudge to share our story, so that your family will never be a victim of a medical mistake.

Surgery Cultures back - another infection

As is customary with a bronchoscope, they do this thing they call a bronchial wash, or a bronchial gavage - which basically means they squirt some saline in their, suck it out, and run cultures on it. Once again, Braden is fighting yet another infection. He has a STREP infection and a H influenza A (not related to seasonal or swine flu) that they are treating with another 10 days of the omnicef (yay for more red, runny, messy diapers)... and a new nebulized medication - colistin, used to treat cystic fibrosis patients and those with Pseudomonis. The colistin has to be mailed to us, as only a specialty pharmacy carries it(and none in Baton Rouge do), so it's a game with the doctor to fill out the pre-auth form, the insurance to "review" it for 24 - 48 hours, then shipping time once all the approvals go through. We hope to have it in-hand for early next week...

But we still get to keep the little guy at home and daycare, as he is not contagious. He has been very cranky, and this probably explains why... as he's been crying at times when we're not changing his shirt or diaper and getting the fake leave me alone cry... it's a cry that means his tummy or throat are hurting him. So lots of extra cuddles for our little patient... funny how they get so cuddly when they don't feel good and just find that comfort in being held. Makes you feel important.

Locally, anyone who would like a flyer for the fall fundraiser for Braden's Medical Fund... let me know and I can e-mail it back to you. (klwilson@lsu.edu) Kodi's Kitchen will be serving up 4 different kinds of soups and 4 different desserts!

Love to all - thanks for the prayers and keep them coming! Hope your fall is going well.

Braden, Kodi, Brad

Surgery Recap

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

Labor Day Weekend 09

Well, we took it easy this weekend and cleaned up around the house. We had some friends over for a bbq yesterday to enjoy some down time and socialization before we head to surgery on Wednesday. It was nice to spend time with friends to socialize and just hang out. Thanks to gram for the cool shirts!

We went to the frog pool in the back yard this afternoon - as it was the first hint of sun we've had since Thursday. Braden really enjoyed himself and really relaxed - enough for a first - poopie in the pool. Oh the joys of parenting... but he's on such strong antibiotics right now, I guess we were silly not to expect it:-) Oh well, the pool got antibacterial cleaning so it can dry and go into storage for another year. And bubba and mommy both got really good baths, and now it's back to relaxing before the big day Wednesday.

Thanks to all for the prayers I know you will be making on his behalf, and ours. We will try to post updates via facebook if you'd like to keep up with our progress. Thanks for all the support!

Braden, Brad & Kodi

It's that time of year - our Gustav Anniversary!

So our friend Kami from Oregon sent this MOST ADORABLE little frog for Braden.

We have some news to share on his health status.

As you know, he's been fighting the bronchitis which has seemed to clear up with the medications we are almost finished with. But we did suspect there was something going on with his trach area, as he seemed sensitive in that area, and more agitated than his usual "leave me alone" huffiness.

Doc found he has an ear infection, which likely explains the grumpiness that seems elevated. So we are on new antibiotics for that.

He also found that after doing a sonogram on Braden's trach, that there is some internal granulation tissue that will need to be removed. When we go for the bronchoscope and this procedure, we will also put in the new fancy trach tube to try.

As we "celebrate" the anniversary of Gustav, we are reminded just how much our little boy is a fighter for his life - as we remember doing resuscitation on him 16 times when we were evacuated from the storm, relegated to a small closet where we could find power for his machines. We choose to CELEBRATE Braden's life on this anniversary remembrance!! This also marks a one-year anniversary since we were admitted to the hospital too!! (Granted, we did get a re-admit when the ventilator failed... but we don't count that as a Braden admit, that was a machine malfunction admit). We've managed to treat a pneumonia and a bronchitis AT HOME this past year, but have managed to escape the confines of the OLOL PICU.

Thanks for checking on us!
Braden and his parents

UPDATE 9/3: SURGERY SET FOR WEDNESDAY TO REMOVE INNER TRACH GRANULATION TISSUE - PLEASE SAY EXTRA PRAYERS THIS DAY!!