Tuesday, March 18, 2008

Meandering Update

I noticed that my last post didn’t make a whole lot of sense when I talked about what happed that day and then proceeded to tell you what was coming up in the day ahead. Problem was that I was typing the post after midnight, so I was talking about two different days as if they were the same day. Not that anyone even noticed ...

I took Jack in to his pulmonologist today and it was essentially a waste of time. Kristi and I both agreed that we gained no useful information from the appointment. He gave us a prescription for Cipro - why, I don’t know because he didn’t really say. We couldn’t find a pharmacy that had Cipro on the shelf, so it’s on order and won’t be ready until tomorrow. The pulmonologist also suggested that since Jack had a flare up of pseudomonas - almost two years ago - we could give him TOBI aerosols if we wanted. That is, if the TOBI we have left from two years ago hasn’t expired. He didn’t really make a convincing argument for putting Jack back on TOBI, so I’m passing on that suggestion for now. I generally like this doctor, but the appointment today was very disappointing. I didn’t get the feeling he was really focused on Jack at all. I guess that’s the consequence of not seeing doctors on a regular basis – they just don’t seem to connect with Jack. I really miss our St. Louis docs at times like this.

I called the RT manager at Apria regarding last weekend. I suggested that if they are going to require a new prescription every year for certain equipment, then they need to put in place a policy that requires them to call us when our year is up so that we can get the prescription on file before a need to have situation arises. She told me that the RT was wrong for not getting us the SVN machine because Jack was a vent kid and they would have been fine with getting the prescription on Monday. She said she’d talk with the RT. The guy needs more than a talking to, he needs an attitude adjustment (and a little compassion wouldn’t hurt either).

I was thinking about how little it takes to suck the life out of me anymore. It really shouldn’t be that big of a deal when Jack gets sick. Kids get sick and parents just deal with it. Yet, I’m just so spent, on so many levels. I guess my “normal” takes more out of me on a daily basis than I’d like to acknowledge. I think it’s fair to say that medically fragile/chronically ill kids make for emotionally fragile and chronically tired parents. Oh well . . . que sera, sera. Not much we can do about it except “just do it”.

Today we had fun visiting with one of Jack’s former nurses from St. Louis. Holly was Jack’s primary nurse for the first two plus years of his life. Holly, her husband Scott and their two boys are vacationing in Phoenix this week and are staying in a house just down the street from us. We love Holly and her family and are so lucky to count them among the many new friends we gained from having Jack in our life.

Holly and Jack circa 1999

Holly and Jack circa 2008

Last, but not least, today is Mary’s 15th birthday. She is now counting down the months until she can get her driver’s permit. Mary is my easy going, happy-go-lucky and social kid. When Mary was little, we called her "Tigger" because she never walked anywhere, she bounced every where she went! Today, she spent the day plopped on the couch playing her new game -- Guitar Hero.

Happy Birthday Mary!

Have a great rest of the week my friends.


Christy said...


I've been keeping up with your blog, just not posting comments. Happy Birthday to your kids (although late for Eric). I am sorry that Jack isn't feeling great. I know that I mirror Harlie's feelings, that's for sure. Just know that I'm always thinking of your family and wishing you well.

Much love,

Anonymous said...

Happy Birthday, Mary! I'm sorry the appointment wasn't that good. I hope Jack is back to his baseline soon.

I think it's great that you keep in touch with Jack's nurses. I'm sure they love seeing him, too.

Have a good rest of your week.

Melisande said...

Happy Birthday, Miss Mary!

Love the pics of Holly and Jack! Take care!

julie w said...

Happy birthday Mary!
Sorry about the appointment, sometimes you wonder why you bothered going, don't you, it's just such a major undertaking. Sending big ((hugs)) across the pond.


Anne said...

Wish that beautiful daughter of yours a happy belated birthday for me and tell her I love Guitar Hero!!