Thursday, December 10, 2009

Winter update

So as the cold weather finally gets here and looks like it will stick around for awhile, so comes the season for Braden to constantly fight infections. For the past 2 weeks he's been on 3 antibiotics. I think he's finally come over the hump, and his tummy is more settled too - making him a much more pleasant "camper". He still has a week left on inhalable tobramyacin, but the oral meds are done.

We've recently consulted with the surgeon and our pulmonologist about Braden's new trach and the issues we faced last time trying to get it in. While I've been hesitant to sign us up for any surgery, as the risks increase for Leigh's patients to be put under anesthesia... the doc finally told us that he thinks the fact that Braden puts out SO many secretions and doesn't have much of an active swallowing reflex, it's contributing to these regular infections we are fighting. OK, now we have a REASON to try to reduce the secretions.

For now, doc has put us on Robitussin and compounded Robinul which is designed to help slow secretions. Some of you may remember that every time we've tried it in the past... within 48 hours we've taken him OFF of the Robinul because it's made his secretions even thicker and near impossible to suction - making a dangerous airway restriction problem. This time, it is a LOW, LOW dosage (hence the need for compounding) and as we are only in the first few days, it doesn't seem to have any negative affects so far. In the new year we will plan for a surgical procedure (which will bring our total surgeries to I think 18), so that we will try getting in the new trach to further assist with the secretions issue.

Some of you might know that one of Braden's caregivers, "Auntie Doreen" was hospitalized last week for stroke that caused bleeding on the brain and swelling in the brain, and has also caused a myriad of other issues and she has declined so much she is now on ventilator assistance. Doreen is the cook at the daycare who also takes care of the kids, and she is LaTacia's aunt, and has worked with her and helped care for Braden ever since we started Kidz Korner. Doreen is a part of our "family" here... and our hearts are breaking as we lift her up constantly in prayer. She should not be this bad off - this was a major medical mistake - these are the things I try to warn you about by NOT using your voice and standing up for yourself. She went to the ER and was dismissed 3 days in a row because nobody demanded the hospital run the correct test to check for what we suspected to be stroke or heart attack. Just please pray for her... she has 4 kids of her own, and all the kids at daycare ask about her every day. Even if she recovers, they say she won't be able to live on her own or be alone after this. PLEASE pray for this family - for they are our family too.

As we gear up to head to St. Joseph, MO, Ford, KS and Wichita, KS... we have lots to prepare for with a road trip like this one. I pray God will give us safe travel conditions so that we may see all of our family this Christmas.

Thanks to everyone who ordered food for Braden - I haven't tallied the total yet, but can say it was a great success! THANKS to everyone who supported us with this venture. The cookbook recipes are finally ready... now to find a publishing company - this will be my "summer project" and we will keep you posted on it's progress.

Thanks for checking in on us, and we hope to update again soon!
Braden, Brad, & Kodi