Wednesday, July 7

Worn out...

I am worn out. Just plain worn from today(and since Saturday that this cough came). Madeline just hasn't been eating well since she developed the cough on Saturday. We have been on antibiotics over 48 hours and she is eating less than she was BEFORE we got the antibiotics. At first I thought this was maybe due to the meds making her stomach hurt but she will "snack" okay. But when I say "snack" I mean the Madeline way...which is nibble, nibble, nibble..throw on the floor....pick up a new snack....nibble, nibble, nibble...repeat. The pediasure is what she usually consumes so much of and, her feedings have been horrible. I am lucky if I can get in half of the bottle.

The day has worn me out so much...that it begins to feel like CF is winning over our lives. Don't get me wrong, I would do ANYTHING for M...even if that means dedicating all my minutes to her feedings, treatments, med, etc. BUT we just don't seem to be going anywhere. She doesn't sound better with her cough (although not much worse either) and food is just not her priority anymore. I would have thought antibiotics would have worked on that ear infection by now..and she would be taking more than she had prior to the weird.

So at 9:30 this morning we did a feeding. I spent the whole hour (time limit I had with her enzymes to work- for those non cf people) milking that pediasure. Finding her favorite shows, taking breaks...and i got half in. Surely by 3pm, she should be hungry, right? Hardly. Same deal. Spent that whole hour too working the tv, coaxing her...trying it with a straw. She would sip some of the straw with the cup, then some would dribble, and I would wipe it up. She refused to hold the cup so I sat with her and repeated with the cup and straw. I had more luck with the straw than the bottle but, we ate up all of our 60 minutes we had for only taking half the pediasure bottle. This is when I begin to wonder what is really going on. I hate making our days into feeding and treatment days only. It leaves M no time to just play. To be a toddler. To enjoy her NON CF part of life.
The day went like this:

Treatment at 8:30, feeding at 9:30-10:30, nap at 11:15-2:00, 2:10-3:00 treatment, 3:00-4:00 feeding, nap at 4:30 (which is strange since she usually naps once a day but since the ear infection that has changed...) and the day continues like this with another treatment and feeding before her 7:30 bedtime. It's so depressing when CF rules your it did ours.

Is the antibiotic working? She sure is sleeping more since. Did the walk in clinic give us the right strength med? What if she has something more? Questions and more...while considering the cough really isn't improving...I decided to call her pediatrician. We have an appointment tomorrow morning. It will make me feel better to have her doctor look at her ear for signs of improvement and one more listen to those lungs. We will call Hopkins with the update and see where they want us to go from here. As a parent to a CF child, I worry the most about her lungs and her nutrition.(just like we all do!) If she isn't eating....then what?

So many questions, so many worries. I need an answer. What is really wrong with her?

My mind is exhausted, this day was tiring, CF....just leave us alone!

(On a side note...Madeline has been working on her words lately. She walked up to me and put her head down on her beanbag and said "night, night." This is the first time she has used these words correctly. I nearly melted... Did she really want to go down? Sure enough, I tried...and she did. She is growing so fast. She doesn't feel good and here she is telling me. My poor baby girl is growing up and telling her mommy what she needs. Simply amazing...)

Here is hoping for a better day tomorrow...I hate you CF. I REALLY hate you.

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