Friday, July 29, 2011

Life beyond the germs.

This afternoon I opened the front door to look out onto the porch and I was greeted by our friendly UPS delivery man placing boxes upon boxes in front of my door. My children, like many, get a little hopeful that any mail or package that may arrive at our residence is a surprise or something directly addressed to them. Wyatt pipes up eagerly asking if any of the numerous boxes contain anything that isn't "medical stuff" for him. I respond, "nope" while he comes back with an exaggerated whine, "Awww." Jilly then asks if she had any Birthday cards in the mail. I quickly look and then begin explaining that her Birthday is still a month away and that it may be a few weeks before she gets a card in the mail. "Awww!", she so similarly exhaled. I have a feeling I may be experiencing the same situation daily for the next month with her. She's understandably excited for her big day!

As I sit here now Maggie is practicing her piano assignments in preparation for her weekly lesson. Wyatt's saying something about his butt and Jilly is retorting with a drawn out girly "ewww!" And I'm...procrastinating.

There is a large box taking up space on the table half opened, filled to the top with "medical stuff" that need a spot of their own. Six other boxes stacked next to the door waiting for me to sort through them and put the items in their appropriate spots. And another delivery scheduled to arrive tomorrow. Our newest piece of medical equipment, which was brought to us today, a refillable oxygen concentrator, pumping a compact green and silver colored oxygen tank full of compressed air. We've always had an oxygen concentrator, but we now have the ability to refill the portable tanks as needed. I don't think excited is the best word to use, but we do get a little enthused about this type of thing. It's the little things! I look at it as one less phone call that I'll need to remember to make to swap out empty O2 tanks for full.

Our days have been filled with a flurry of activity between the boy's care, general daily occurrences and places to be. We sat down the evening we arrived home and skillfully created a med schedule, organizing the jumble of doses and times. The following day I typed up a long list of all the medical contacts that we need. We had a list already, but it's slightly out of date (about a year old) with things scratched out and new names and numbers now written in the blank areas. So, in an effort to feel some sense of order in all that is happening I felt the need to create a new organized and more accurate list. When in doubt, I at least have a straight forward list of names and numbers of people that may be able to help.

Wyatt is doing well, in his own little way. We're home...that's close enough to "doing well" for us, anymore. I'm certain his billirubin levels have dropped lower since the last time it was checked, as his color is looking much better. He's still "yellowish" but not terribly noticeable. Cathing has become more routine and we've all adjusted to the thought and process a bit more. It does reduce some of his discomfort greatly, which is a great thing...quality of life. Our nurse arrived first thing this morning and set us up with a "Y" connector on the one lumen of Wyatt's line, providing the ability to run saline continuously throughout the day and meds when needed (along with the TPN going through the other lumen). And speaking of a nurse, we've recently taken a big step and applied for private duty nursing. I'm not sure how I feel about it, just yet. Our biggest goal in doing this is to have Wyatt attend school, with his friends and classmates, at the least one day a week when possible. That may translate into a half day and some weeks none at all, but I really want to try. He's like most children his age, he wants to interact and make friends. He wants to sit in a classroom and feel just like everyone learn, laugh and talk with children his age. I know many will wonder why we would pursue an environment that is known to be riddled with germs. Germs are not our friend...I am well aware! But I also know we need to live life around those pesky germs, just as we try to achieve with all other aspects of the boy's life. And that's what we'll try our best to do. Quality of life, he needs it and we all want need it for him. I'm sure there will be a time of adjustment when having a nurse around for many hours a week, but it may be a wonderful thing...we'll see.

This evening we're all happy it's the end of the week and are looking forward to spending the weekend together. Happy Friday, my friends!  
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  1. Your right it is about quality of life and if being in classroom with his friends makes him happy then I say go for it! Tell him I said Hi and I hope he has a great weekend!

  2. You are a very stong family and I wish all the best for all of you.