Stones...

Our poor little guy has been battling with these stones for several months now. We've treated the pain and stopped using a drug because of its ability to cause stones. We had a sonogram this morning and a consult with his nephrologist. We decided that we would add 200cc of extra fluid to his diet and try to flush them. Before we even gave him the first his set of fluids he passed what appears to be (3) stones in one diaper. We still have to send them to his doc to confirm, but his demeanor has changed for the better. Hopefully this will be the end of this chapter.

Long time, no talk...

Some of you might think that we've dropped off the face the of the earth. Well, we haven't, it's just been a tremendously busy spring.

In March Braden was admitted to the PICU, admit #37, with what we thought at the time was a possible blood infection. He had some labs drawn on a Thursday, and the next morning we received a call early from his pediatrician. She advised us that we need to get to the PICU right away. His labs came back with a possible staph infection in his blood.

We were directly admitted to the PICU at OLOL and within minutes they had started a broad base antibiotic. They took a second set of labs to compare. Needless to say, we were quite worried because this has never been an issue for us. Four hours went by, nothing was growing in his labs. Eight, twelve, sixteen hours later still nothing coming back. After the first 24 hours it was concluded that the original set must have gotten contaminated. Our medical team felt awful, but as I assured them, I would rather go through this 100 times and it be wrong, then the one time we don't and it's actually a problem.

In April, Braden was admitted again, #38, because his belly had become distended. As you can imagine he was in a lot of pain and we needed to get the trapped air out. Once he was in his room, they hooked him up to a pump to syphon out the air. The docs determined that it may have been caused by a mixture of some of his meds. Because Braden doesn't move that often, he has a tendency to have air not pass through his system regularly. After going through his chart and resuming his feeds, he was able to tolerate it and we were discharged after a few days.

Also in April, we invested in getting Braden an iPad 2. Naturally he does not receive any direct benefit, but we got it to transcribe his chart onto. His charts are so large, we thought it would be wise to download the material and save it to the iPad. Which ever one of us goes to his appointments with him takes it and records his visits. It has come in handy in recent visits because his meds are loaded into the program as well (My Medical for iPad).

During the later part of May we made a visit to our docs in Houston. This past spring we have reconnected with many of our docs at Texas Children's and UT-Med. We now are on a 3 month rotation with them and so we"ll be make more frequent visits. We are seeing a Mito-doc, Immunologist, geneticist, and his epileptologist. We've had some good conversations and hope to continue to pursue answers. Certainly Braden's diagnosis won't change, but we hope to find answers to what it means if we have additional children.

That is just a quick snap shot of what our spring has been like.

You can follow Braden on:

Facebook: "Bee-lieve in Braden" page

Twitter: @babybdub

Making Transitions

So after our battle last year to get an emergency slot on the NOW Waiver, most of you know, we are now approved after getting our day in front of a judge, and just this past October got approved and FINALLY got Medicaid!!!

In November, we started training some PCA's (Personal Care Attendants) for Braden. They were approved to watch him during evening and weekend hours. God has blessed us already with Latacia's family... she is working through a divorce and was the first to ask if she could have hours... OF COURSE!! Then her sister wanted to learn how to take care of Braden too... so she has been training with us since November.

It's not this instantaneous weight off our shoulders, because with Erica (LaTacia's sister), she's learning how to read Braden's signals and know what to do when he beeps or seizes, etc. She has caught on pretty well, but she's not confident enough with her training to yet leave her for more than a few hours. But it has allowed me to cook a meal without stopping 5 times to answer Braden's beeps, get some side work done, and just have some "down time", even if it's just grabbing a shower without worrying if Braden will go off while I am in there!! ;-)

You might be asking - well, where is Brad during all this? He works 5 or 6 nights a week doing basketball games. He referees for middle school and high school, and does the score table for both LSU men and women's basketball. Yes, it keeps him very busy, and makes me more of a basketball widow than most coaches wives:(

So we are working on getting Erica comfortable, and can run to the store, and last night was able to enjoy a dinner out with Brad's aunt Jeannie & uncle Jerry who stopped through on their way home to Pensacola from Baldwin, LA where they were doing mission work. While it was sad to leave Braden home, it was nice to have adult conversation and some relaxation without having to worry about addressing any Braden issues:)

At a glance, you might think, "oh, it's great that Braden finally has someone to help watch him so Kodi & Brad can do... xyz". That is true - but it takes a LOT of training and time to get a PCA up to speed. It's not like they just come in, and we can walk away. So every single person we bring in is an investment of time and emotion. But we are happy that we are moving down that path where Erica will get comfortable, and we can leave her for longer periods of time.

Up next - we will be interviewing and trying out home nurses!! This too will not be a quick or easy fix, and will require a large investment of time. But it gets us closer to giving the best care for Braden.

I'd like to tell you he's just fine and stronger than ever, but the reality is that we are seeing signs of his decline. We no longer have weeks or months without any "incident" of sorts. Every day we are monitoring a new situation, and it can be stressful, to say the least. We literally have a new focus every single day of the medical variety to monitor and address with Braden. It's stressful, and that's when we can lose focus of taking care of ourselves, so it will take extra effort to ensure we take care of us to be the best parents and caregivers for Braden we can be.

Today, we dropped Brad's vehicle at the dealership to get a back seat fixed, and then went to the grocery store together. As we were walking out, I realized that it has been YEARS, since Brad & I were able to accomplish the simple task of going to the grocery store together. Usually, one of us is home with Braden, so we aren't dragging him around with all his equipment just to get some groceries. Today, I'm making a batch of Valentine's cake balls/truffles... Tomorrow, I plan to get in some exercise... a little "me time" every day. GOD knows I am a "work in progress":)