WC Day 3: Infection and 50,000

Phew....just going to get this in under the wire!!

It’s been a long, dreary, cold day.  Where did spring go? Oh yeah, that’s right, we will hit 80 this weekend. Gotta love Texas weather.

Madison has another abscess around her g-tube tract…her third since September. Not good…not good at all. We spent hours with the pediatrician yesterday. That visit resulted in an urgent call to our GI by our ped, in part because not only was there an ugly abscess, but our girl wasn’t looking good in general. Our ped is not an alarmist and has a lot of medically complex kids, so when she gets concerned, well, I do too.

By this morning I was being asked to bring Madi to Cooks for an ultrasound and possible surgery to drain the abscess, and had started working in that direction before waking her.  When I did, thankfully, the abscess was…..how do I say this delicately….it was taking care of itself, if you will. With that, another call was made, knowing the ultrasound would be less than revealing, and we were not going to need “help” with draining the abscess after all.  Madi LOOKED better too, so I was feeling a little less concerned than I had been.

A little.

Problem is…she has already been on antibiotics for 6 days and while on them, the abscess continued to grow. We got to where we were yesterday while ON the antibiotics. All possible indications that maybe the antibiotic chosen wasn’t the best one for the infection…..or worse, that perhaps she is becoming resistant to this particular one (our options are already limited because of the mitochondrial disease)…..or (not sure if this is worse or not) there is a chance that the abscess is walled off enough that the oral antibiotics are having a hard time getting to the infection. Regardless of all that, she is due to be done with this course of antibiotics tomorrow and we have obviously not cleared the infection yet. Yes, it’s good that the abscess is draining on its own, but it’s not “all better” quite yet, and I am not sure stopping the antibiotics now is the best thing.

With all of that, we went over today and had a culture of the area done. While not ideal to do while on antibiotics, it might give us some useful information.  It’s probably staph….the kids are all colonized…..but maybe not. We might be able to see if it’s responsive to what she is on, or if there is something more effective.

Tomorrow we will head back over again to see our GI and talk things over. At this point I suspect we need to continue antibiotics for at least a few more days,  but we also need to try and determine why this keeps happening and how we might avoid it in the future. Clearly the infections take a toll on her, so avoiding ones that we can kind of see are going to happen again, well, those need some special attention. Praying for some wisdom for all involved!!

In other news……we officially hit 50,000 hits sometime today!! Thanks to all for reading and hanging in there with me!!

WC Day 2: The List

I am a list maker.

At times, I spend more time making the lists than actually working on the things that are listed.

However, without the list, I have no idea what I need to do or when.

The list is never ending and constantly being added to.  Sometimes at an overwhelming rate.

I have tried separating the lists…..medical, household, financial, etc and so on, in hopes of making the individual lists less overwhelming.

I never really feel like I make headway on the lists, even if I actually accomplish quite a bit.

Separated or together, there really is more to do than one person is capable of doing.  There are simply not enough hours in the day.

The lists are beckoning me…..making me tired….making me want to run away….and at the same time, making me want to sit down and start ticking things off the lists. 

I am working hard on LOTS of things, and failing at all of them to some degree.

I need to go…..the lists are calling.

WC Day 1: Ideas

Help!!  If you will……I need ideas on things to write. 

Is there something you have been wondering about and dying to ask but just haven’t had the chance, or maybe even haven’t quite known how to go about asking? Now is your opportunity. 

Is there something about our family you are interested in? An organization we are involved in that you would like to know more about? Questions about Mitochondrial disease or how it affects our kiddo’s? More information about Michael’s accident and the aftermath? Our experience being a medically complex family? Our experience being a wacky, weird family?

I cannot think of anything off limits, although I will (as always) run anything written about the kids by them just to make sure they are okay with the content.

Some ideas for things to write about on my list:

I finally went through all the recipes I have pinned on Pinterest and started making them!!  We are about a month into this experiment and I am happy to say almost all the dishes have been a success. I am contemplating sharing some of our favorites here at our house with all of you. Foody Friday sounds like a possibility!

Some updating on the kids and how they are doing is definitely in order.

Recounting some of the awesome adventures we had last year.  It was a rough year (obviously), but there are some stories and pics to share of the good times too.

Some special needs related posts….need your ideas on this one!! I always said, as I struggled through the process that is being a special needs parent, that it is all worth it if I can share with others and save them from having to go through the same struggles I endured. In some ways I am far enough removed from it all that I have a hard time knowing what I could share that might be helpful, but if there is something you can think of, let me know.