Wednesday, February 16, 2011

Faith, Hope, and Pixie Dust

Olivia continues to do amazingly well. Just a palm sized bruise that only bothers her during sharp movements, but other than that she is fine. I can not express how wonderful that feels, for her as well I'm sure!
Tomas saw the urologist today. His renal scan was clean but there was some bladder wall thickening that needs to be watched. The urologist felt that since the bacteria Tomas grew was so rare that is just couldn't be true. He wants to catch it again but with a cath. This means having him cathed every time he has a fever, or if we have any suspicious urine output here at home. This makes having a home health nurse such a blessing. That is the silver lining in a rather disappointing morning! Some days the whole "tiny pieces of the puzzle" thing just really grates on me and it takes a whole lot of prayer to just get out of my cozy chair. Just once I'd like to walk into a doctor's office and have the doctor know what is wrong and how to fix it. It often happens that investigating one thing causes us to to trip over another. The bacteria was found while checking for a urine metabolic disorder, and the bladder wall issue was found while checking on the bacteria. Plus, I feel like every time a test result comes back normal we get further and further away from a common diagnosis, or maybe further and further away from a diagnosis at all. But somehow God moves me forward, and as every mother of every SN child out there knows, somehow we rally and rise again.

The nurse is working out very well. She is young and new to nursing, having only worked in a hospital for a few months. Tomas is her first home health patient. At first this sounds rather scary, but I like that she is not coming in filled with a preconcieved notion of what kids are/aren't supposed to do. She is, of course, quite competent in the basic nursing stuff - BP, HR, O2 - all that, but otherwise rather the blank page. That is ok though, because she watches, listens, has a quick learning curve, and I get it all done my way because she has no other experience to draw on. She works 3 days a week with Tomas and I am very much looking forward to the options this will open up for me and the girls once we are all comfortable.

Pixie Dust
As some of you already know, my family is moving (again - it's what we do, lol). Mike accepted a promotion and will be working in NJ. He worked there for a while before (it is his company's headquarters) and we lived just accross the state line in NY. That is the same area we will be looking at this time. The best part of this whole deal is no travel. He will have a regular office job and with the excepetion of a few meetings a year, be home every night. That is such a burden off my mind I almost had to put this in the faith section. Some nights I have a hard time falling asleep just wondering how I will manage if Tomas needs to go to the hospital while he is away. We have no family close by, and really - who else do you call at 3am to come and watch your kids? But it goes in the Pixie Dust section because that is what it will take to make this happen. The thought of buying/selling a home and transferring medical care just about paralyzes me! Not to mention a very difficult transition period where Mike will already be working from NJ before we are all moved up there. He will be gone for 2 weeks at a time. Again, the nursing was truely a blessing. I have meetings with the admit team the week of march 7th, and Mike starts the new postition on March 14th. Like I said - lots and lots of Pixie Dust!!!


  1. Joining you in faith and hope and sending you lots of pixie dust .... which is super easy seeing Zoey's theme for her upcoming 4th birthday is fairies!We will have plenty of extra bottles of the sparkly stuff around and we will cast it to the wind and send it eastward to you,okay?

    Love and prayers coming from California.

  2. I'll take some of that Pixie dust please! Now that Ray's company has offered him a job where we really want to be in Cali, I'm freaking out about moving Jax. I can't even believe how hard its going to be to move him. I know he needs the move as much or more than the rest of us, but finding insurance that will cover everything he needs, and just getting him moved, makes me hyperventilate!!

  3. Praying for a smooth transition!