29th OLOL admit and back home

(Braden at OLOL)

After 4 1/2 days in the NICU, Braden's medical team agreed we were ready to head back home, and keep treating his 5 trach infections at home with 2 oral antibiotics (okay, they are still 'oral' even though we administer through the G-tube) and nebulized tobramyacin. This time the docs made sure we had all our scripts filled BEFORE we could go home. Last time it took 3 days for us to get all of them.

So Braden is already feeling better and just more "juicy" than usual - lots of bibs and suctions through the day. Wouldn't you know it, our friend JazMyn was hospitalized yesterday and released to treat her very own strep infection at home, for fear she would catch something else while hospitalized if she stayed. So now the princess and boss of Braden is taking her own medicine too. I TOLD YOU these kids always get sick at the same time!

JazMyn and LaTacia are gearing up to come stay at our house in a few weeks... soon Brad and I will be leaving to take our 10th anniversary trip to renew our vows in St. Lucia. We've been planning it for two years, and faced many hurdles trying to make it happen, but we really want to reconnect before we start trying for another child. Yes, we've decided we are ready. It was a very personal decision for us, and one that we've been weighing ever since our diagnosis Fall 2008. But 11 rounds of genetic testing have come up with NOTHING.

Braden seems to be that fraction of a percentage where Leigh's just happens with no real explanation. While there is a genetic form, it's unlikely that we fit in that category at this point. We know of several families facing this disease, and of all the families, we've only heard of one of them having two children with a recurrence of the disease. I think the real push we've felt to try again, is that we were ready to adopt a child in the hospital the same time as Braden on a ventilator because he needed a home, and if we were ready to take a child home that is not even ours and has medical needs, then why wouldn't we be willing to care for another of our own, special needs or not? I think it was then that we felt God was calling us to have another. I know that everyone may not agree with our decision, but I hope you can at least respect our decision that we have not entered into lightly by any means.

The world that has been shown to us through Braden, shows us that God does not make any mistakes. God provides many blessings through the most difficult of situations, and we still have to be willing to trust that He will lead us to the right decision. So yes, we are ready, but the WHEN is still in God's hands, if that in fact is His will.

So we are excited to head to St. Lucia for our first vacation since our honeymoon, with a chance to reconnect with one another, and re-energize our relationship and our spirits after a rough 4 years raising Braden. We hope to have many great photos to share once we get back... we leave on May 25 for 9 wonderful days, and will renew our vows on Memorial Day while we are there. Pray for us to have a safe journey, pray that Braden will stay healthy after this recent "tune-up" for LaTacia, and that LaTacia and her family will be given any guidance from above necessary in our absence. It's a big leap of faith for all of us, and we are so grateful for LaTacia and her family to give us this opportunity. Let's also pray that Braden remains healthy and behaves while we are away for an uneventful journey here in LA while we are gone for a little over a week. JazMyn will have lots of adventures to tell about how she moved in with her "white brother", like she calls Braden - adorable, just love that. I know Braden will enjoy having her so close for those days we are gone.

Thanks for checking on us,
Braden, Brad & Kodi

Another Mother's Day in the Hospital

Braden's calendar buddy & seizure fighting friend, Addie Claire

Well, Braden has not been feeling well for about 8 days, fighting the yucky green junk. We began intense nebulizer treatments and diligent cough assist, extra pedialite all to help thin his secretions and keep his airway clear. After 5 days we saw green become yellow and an increase in his usual "juiciness", meaning things were starting to thin out.

Then 2 days ago he started dropping his oxygen saturation and started running low grade fever. We gave motrin a few times, continued diligent breathing nebulizations and sleepless nights, as Thursday night turned into a marathon of 4 cough assist and neb treatments, a trach change, and even vest therapy. He dropped his sats down to 69 and turned blue - hadn't seen that since before he got the trach. Some of it was due to airway issues, and the other half due to his stubborn "clamping down" he does when he has a sneeze or fit of bad attitude (remember when we would hold his breath as a baby when we gave him a sponge bath??). We put him on some oxygen, and his sats only stayed at about 91 - 93 even with the help. We decided Friday morning, even though he had done better for a few hours, that we would take him in.

Typically, once we supplement oxygen, it's 24 - 48 hours that we end up in the ER. This time we decided to move ahead of the curve. Getting him accessed through the mediport in the ER was a giant ordeal, as has been the case sometimes - but they finally got it. Blood gas, CBC, and chest xray all showed pretty normal readings, but we also brought in a sputum culture to get thing growing in the lab.

Today they said the cultures are growing the usual suspects - staph and maxilla (I think). They will wait to administer any antibiotics until tomorrow to see if it's really needed. My guess is they will add something tomorrow - as he continues to secret mucous out of his eyes and his g-tube area is "yucky" - indicating he's fighting some kind of infection.

While we are here, the pulmonologist wants to address his leaky trach and finally try the TTS trach - he thinks it will help his oxygen saturation level and function in some ways even better on the ventilator settings - as they aren't quite where they should be because of his leak. His leak usually just sounds like a snore:-)

So that's all for now... we got to spend last Mother's Day outside of Our Lady of the Lake, but evidently, this is Braden's idea of mommy-son "quality time", so we will be here for our third Mother's Day together in the hospital. We started that way, celebrating my first in the hospital with him in the NICU, the second in the PICU, and now a 3rd in the PICU. It certainly makes me give thanks for our special snuggles and our struggles too. He proves he is a fighter over and over, and that prayers of all those looking in on us really do get answered - GOD IS SO GOOD!

As Brad and I prepare to take our 10-year vow renewal trip to St. Lucia, we are thankful to have time to really get Braden healthy in time for our trip away. LaTacia, our absolute God-send of a sitter will be moving in with Braden while we are away, and JazMyn will have lots of time with the little boy she affectionately refers to as her "white brother":-) We are thankful for Braden's "daytime mommy" LaTacia, and the other caregivers at Kidz Korner who also learn to care for him - Christie and Ebony, and of course Ms. Carolyn, Tacia's mom. We love all of you for loving our son and providing a safe and warm environment for him while allowing us to earn two incomes to provide for our son.

Happy Mother's Day to our own Mothers - we love you for all the special ways you love us and our son. Happy Mom's Day to all the moms and grandmoms out there - your work is evident and appreciated!

Braden, Kodi & Brad