Rambling and Venting

Sitting here on a Monday night in a quiet house anxiously waiting for Rob to come home. I'm just bored so thought I'd ramble a bit on here. He's off helping one of our dearest friends hook up her computer and I'm guessing it's not going well as he's been there since about 6:30 pm and it's now 9:15. Sigh. I am grateful though for a husband who is so willing to help others. Doesn't mean I can't miss him when he's gone :)

Lot's of stuff running through my head. Summer is over in 2 weeks. I haven't accomplished hardly anything I wanted to. I feel like I have been busy and running around but I can't tell you exactly what I was doing. Today I made myself start decluttering the kitchen. I was getting sick of the mess I'd see everytime I opened a cupboard. I got most of it done before peetering out so I'm happy. Rob came home and couldn't find anything as I totally rearranged everything too :) I did clean out my sewing room last week. Always nice to walk in there and see it clean so I can just sit down and sew. I'm hoping to get to all the bedrooms before school starts. The kids rooms amaze me. I know I wasn't the cleanest kid but dang, they have me beat by a long shot. Elizabeth has a room to herself and she is worse than the boys most days!! I don't know how they stand it. Any more, clutter just stresses me out. I don't mind a little here and there but when it gets to be too much I can't relax.

Elizabeth's health is weighing me down too. Well, her doctors are weighing me down, let's put it that way. We are back to visits every other week to check her results on the breathing test they make her do. 4 visits ago she was blowing in the 90's. I know the numbers will make no sense and I don't know how to explain them other than 90+ is where she needs to be. So anyway, the visit after that she fell to 70, not good. They put her on antibiotics. Now, mind you, she has NO OTHER SYMPTOMS!! NONE! Other than blowing a 70 she is totally FINE. But they freaked Rob out and put her on meds and said come back in 2 weeks. I haven't been going to the visits cause I thought Rob was handling them just fine. He hasn't been, the docs have been stressing him out. So I decided I needed to go to understand what was going on. This next visit was horrible. They made her blow that stupid test NINE times. NINE!!! All the while the tech is telling us that it takes kids years to learn to do the test right and that most adults by this point have passed out. Um, hello? What the heck! She blew in the low 70's again the first three times. They had her try three more cause she wasn't quirt doing it right. The numbers went up a smidge. So, pulled out the inhaler waited another 10 minutes and tried 3 more times. She got up to 79. All the while I'm watching this whole process pretty sure she's not doing it right. If she's not doing it right why the heck are we freaking out over these numbers? Oh and I should mention that looking back at her previous tests it would appear that 94 she blew earlier may have been a fluke. At home she is not coughing, AT ALL! Pretty amazing for someone with CF. Elizabeth takes karate and she's doing spectacular there, doesn't get winded or overly worn out. She keeps up at home just fine, no wheezing, snoring and NO coughing. haha. Anyway, we said something to the tech about her not doing the test right but the tech assured us she was doing her absolute best. OK, so what? If she's not doing the test right what good is her absolute best? Am I the only one who has a problem with this? So, the doctor then put her on steroids, which I HATE, it must be her airways are swollen or some such whatever. Come back in two weeks. Alrighty, two weeks went by and then it was time to take her in again. This was last Tuesday. She got on the breathing test and still was blowing in the 70's. Steriods didn't work. At this point we start asking the tech questions. Different technician this time. Wow, come to find out, sure enough Elizabeth has been blowing wrong this whole entire time (a year now) and they never tried to fix it! You could see it right there on the graph, she was hesitating when she shouldn't and that threw the whole test off. Once the tech showed us and Elizabeth what was going on, guess what? Elizabeth corrected it and blew up into the low 80's. Wow, really? Oh my gosh, we are freaking out over numbers that essentially from where I'm standing mean nothing because just as I thought all along she wasn't doing the test right. I would have loved to have her do it a couple more times as she was still hesitating for a fraction of a sec but the tech said that was good. We were so happy. Then the doc came in. He took one look at the 80 and said it wasn't good enough we now need to start another round of a super high powered antibiotic that they've had to use in the past. I started questioning the doctor why. I wonder how many parents ask why cause he wasn't very thrilled with having to explain it to me. I need to understand that they need to look at the BIG picture. They need to be aggressive with her cause we don't want to ruin her lungs now do we? I was being talked to like I didn't get the seriousness of her disease. Yeah, I get it. I get that my daughter has a life threatening disease. I get that we need to treat it. But what I don't get is putting her on these drugs when she has abosultely NO symptoms, none. Her x-rays came back with nothing new, they can't hear anything in her lungs and like I said she can keep up with the best of them when it comes to running around. And THEN, he tells us that we need to come back in 3 weeks and do the stupid test again and if she doesn't get up in the 90's this next time he will discuss with us putting her in the hospital for a "clean out". This means 3-4 days in the hospital hooked up to IV's with antibiotics. Are you freaking kidding me? WHY WHY WHY?? I wanted to scream at him! I only agreed to the Zyvox because she does have MRSA in her lungs and it will help her sinuses which is her biggest problem, NOT her lungs. When I asked him about the test and just how reliable the thing was he just kept telling us to look at the big picture and it's the best indicator they have of lung function. Ok, I am looking and in that big picture she's not doing the test right and she has NO symptoms. We proved she wasn't doing it right. And now they want to stick her in the hospital? Again, am I the only one who sees how this makes no sense? I get that they know a whole lot more than I do about CF but I also believe there is a balance and right now I don't think my little girl needs the traumatic experience of a hospital stay. Especially one that involves IV's. You should see her when she comes out of her sinus surgeries. They have just gone and totally roto-rootered her entire sinus cavity and the thing that pisses her off the most is the IV they have to leave in her arm until they make sure she's going to be ok. Yes, now lets put her in a room away from home with one of those suckers hooked up to her arm for 3 or 4 days. I don't think so. Not happening, not unless they can prove to me without a doubt that it's necessary and that stupid breathing test is not going to be proof enough for me. Not until I feel she's doing it right. So, thank you doctors for completely stressing us out over what is, in my opinion, nothing. I'm not looking forward to our next meeting if she does't blow in the 90's cause they aren't going to like me very much. I will refuse the hospital stay and I will probaby refuse anymore drugs, cause they aren't working anyway, and that would be because there is NOTHING wrong. ARrrrrggggghhhh! Can someone please stop the insanity?!

Ok, now that I've gotten myself totally riled up over this again it's time to move on. Or quit. Rob finally walked in the door about 15 mins ago. Computer is set up and working great for our friend :) Have another early morning appointment up at Doernbecher. Elizabeth did a study with an inhaled drug this past year and now we get to go on the open label part of the study where we know for sure she is getting the real thing. We are hoping this will help with her breathing test. Will be interesting to see. Poor thing has to have a blood draw, she just hates needles. I have to bribe her every time we go in. I don't care if she cries or screams but she's not allowed to thrash around. It makes the whole process that much worse. I just love having to pin my little daughter down while she kicks and screams. HA! Elizabeth has done pretty good on the last two so hopefully tomorrow goes smoothly too. Her bribe is going to Build a Bear to buy a new outfit or two for her bears :)