I may lose it soon!!

Well, I’m finally coming close to losing it! I don’t know when, but I can see me getting really frustrated and angry with someone soon. So take this as fair warning. I’m tired of it all! I’m sick of the decisions, lack of information, inability to know what we should do, and trying to maintain some sense of normalcy in the middle of it all.

Last night we realized why Dr. A. and the CAMP team differ. According to her CAMP doctors, we’re supposed to work on this ladder system. When he CO2 goes up too high or down to low, we make vent adjustments. However, we weren’t really told what to do when we reach the end of that ladder. And that happened last night. So when we contacted them, or I should say her nurse did, they didn’t really give much advice. They just pointed out that they’re to be consults to Peanut’s regular pulminologist. The problem being, Dr. A. doesn’t use the ladder system. He doesn’t believe in adjusting the vent for every little issue. And now I’m starting to see why.

Last night her CO2 levels were in the mid-20’s. I’ve always had this backwards, but apparently, it’s more dangerous to not have enough CO2 instead of too much. When you have too much, your body can blow it off and will get rid of it. But your body also needs enough for your brain to function. So if it’s not getting enough, then you’re risking brain damage. This is what we were dealing with last night. So while Dr. A. doesn’t like making the adjustments, he certainly told her nurse to lower her breath rate. Within 15-20 minutes, her CO2 was in the mid to upper-30’s, which is so much better. And even her 02 levels, which initially dropped to lower 90’s, came back to level off in the mid to upper-90’s.

We’re leaving the settings as they are for the weekend now. Since the CAMP team, or at least the one doctor we spoke with, felt that she would be OK like this for the weekend, then they could review things further. Umm… no! I can’t handle the thought of her having possible brain damage, or worse, cuz someone thinks that’s OK.

We’re dealing with two different sets of thoughts and two different protocols. One of them is much more research based, in the hopes of getting more answers to help Peanut, and other kids, further down the road. The other one is based more on real life. That one is trying to look at her quality of life and making sure that she’s not getting into dangerous zones. In fact, Dr. A. told me today that if we wanted to continue using the ladder protocol, which dropped her CO2 levels that low, then he feels that it would be unethical of him to continue advising us on much more. He wouldn’t want to be involved in decisions that could cause serious harm. Of course I can't help but wonder if we need to choose between quality of life and quantity of life!?!?! With no guarantee that we'll have both!

Everyday I think that we’re getting more answers, and instead we’re getting more questions. When we left the CAMP program last week I thought that we were heading in the right direction. And even after our initial issues between them and Dr. A., things were going OK. But now we realize that there’s a lot more that we haven’t thought of. Not only can we risk serious damage, we could end up pushing her body to become completely vent dependent. Since the lungs only need so much pressure in them to work, they work fine when that’s there. But then the vent adds more pressure, which over time creates scar tissue. And eventually, that scar tissue can only be expanded by the pressure from a vent.

So… are we helping her the best way with having her on the vent 24/7 when we know that she CAN breathe on her own? Or are we risking creating a completely vent dependent 8 year old by keeping her on it all the time? We’re really lost with all of this. At times it seems so obvious, and other times, I feel like I’m in the fog.

We’re really hitting the wall here. We thought that having this diagnosis would really be great, that it would send us on a new, and better, path. But we’re finding that’s not really true. We see that there’s just so much more that we don’t know! And we just can’t seem to get any real clear pictures for most of her problems. And it doesn’t help that Hubby and I have had about 30 minutes in the past 10 days to really talk about this. With Nutty Buddy being in and out of school (sick days, days off, weekends), and then since he can’t come to the hospital anymore, we don’t have any more than a few minutes together at the hospital, when we could sit down and talk with the doctors more thoroughly.

It feels as though we’re back to square one on so many things! Ok, maybe square 3, but still, just very little concrete info to work with anymore… So, if I get angry or short with anybody in the coming weeks, just bear with me. The holidays are coming up and my little girl just wants to be in her house for them. As it is, we doubt that she’ll be discharged before Thanksgiving, but she will be given a 1-day pass to be at home for the day to celebrate. Actually, for that Saturday, so hubby’s whole family and my parents will all come to have dinner. But I’m tired of dealing with a lot of this shit! I just want us to be in our house, taking care of her, and working on getting her better. If only we knew how to do that!