Monday, February 28, 2011

In Limbo (Again) we are again. Waiting. Sitting in the foot- tapping, watch- checking, nervous-throat-clearing, proverbial waiting room of existence- anticipating, hoping, worrying, and doing all we can do to not burst out of our skin to KNOW something.2011-02-25 18.03.46

I'm not sitting idly by though. I have been combing the aisles of the grocery stores looking for fat-laden, wholesome yet often fryable art in hopes of adorning my son's body with a little extra bulk. To his credit, he has been a willing apprentice, worthy of studying under Kobayashi when it comes to tater tots, cheese stuffed pretzels, fried green beans, pizza rolls, buttery sweet potatoes, and even a whole slice of pizza. Fruit slices sandwiched with cheesecake filling, German sausages, ice cream bites, cheese filled ravioli...the appetite has definitely taken a turn for the chubby. Fear not, friends, he has not forgotten his porcine first love. Just this week he shoved his bottle onto the floor in protest when he discovered I was holding out and had bacon I wasn't serving him.

(Fuzzy phone pic courtesy of Papa Johns!)

While my guts are twisted in a happy dance at his obvious effort to comply with the orders to chub up or tube out, I hesitate to celebrate. There's a week left until weigh in, and no, I won't be able to breathe until then. I have sworn he was looking chubbier and feeling heavier half a dozen times, only to be devastated when the scale refused to give up a gain. Now I am vigilant, militant, and insistent that we keep our heads down and don't celebrate until the goal is on the scoreboard. Onward!

I was caught off guard by a call from clinic today, informing me that J grew Staph A in his culture again. Since he is currently asymptomatic, we didn't start a new course of antibiotics, and are hoping that serious threats and strict compliance will keep the dirty little colony at bay. But nevertheless, a little wind left the sails that it even made its presence known.

Midnight feeding time is nigh, my dears, so I bid you goodnight, and promise to add pictures tomorrow.

Wednesday, February 23, 2011

Your Mother is a Hold Out

I owe a post on the G Tube debate.2011-02-01 14.54.19

But to be perfectly honest, it's just too much right now. I have had loads upon loads of really wonderful, intelligent, and informed input and I am so grateful for my little slice of the CF community. Having said that, I still don't know how to feel. I"m not mopey about the situation, just completely overwhelmed at the decision I am making for someone else. And I can't lie, I am emotionally exhausted after these past months of desperation at every meal time. Hope is a marathon, not a sprint.

What I really want to do is explain myself, the reasons I am considering the tube and the reasons I want to hold out. In all my wisdom I still somehow hold the naive notion that if I just explain myself the right way people will 'get me'.

I'm not GOING to explain myself.

But I will give you this. I'm a hold out, and I will be until I feel I can't anymore. I am lucky enough to have a medical team that, while they feel the tube is our best option now- is fully supportive of my decision to wait a little longer. We negotiated another two months of trying to gain without the tube. If by that point we have seen no significant change in the growth trend....well, I'll cross that bridge when I come to it.

There is a strictly regimented, every 3 hours feeding plan in place, weigh-ins every two weeks, weekly calls to the dietitian, and journaling of every bite of food. Prevacid dose has been increased again in an attempt to alter the pH of the digestive tract and enhance the efficacy of enzyme therapy. I have J's first appointment at Acupuntcture Wellness Center here in Fort Worth tomorrow to try acupressure and some esoteric therapies (again, not going to explain everything, but we are looking into non-invasive, non-chemical treatments). I have started doing Reiki on him every night and have called anyone with some spare mojo to send it into our healing circle.

Perhaps it's a small struggle, compared to some. It's definitely not the worst thing that could happen, and we are otherwise still so blessed that it's kind of ridiculous. Even this is a first world problem. But the pressure is great and I have been struggling to keep perspective. The stress is showing in my marriage, and the emotional fallout from not feeling like I have my partner certainly doesn't make things easier.

It gets better. Nothing stays bad forever. We'll figure it out, we'll learn from it, maybe we'll even learn to help other people in this position. I will turn something good out of this, just not today.

Monday, February 14, 2011

Anticipation & Achievement.

Par for the course, I should be sleeping. But there is a lot swirling around inside my head, and sleep & I are on the outs right now.

We have one week left until the next weigh in, and all of the nerves and internal conflict that that implies. Let's get on with it.

Mike has been made full time, which means we will soon have real Health Insurance. (For all of us!) This makes me almost as nervous as it does excited. I have a lot to learn about claims, deductibles, referrals, co-pays, and the like. WIth a little luck and a lot of research and question-asking, I'm hoping to add it to the list of things I can soon help others with.

Overall, I'm feeling quietly antsy. I don't really feel like my usual verbosly-hashing-everything-out-like-a-John-Cusack-character MO, but it's not because I'm feeling down or anything. I just feel a bit like I'm lying in wait.