Saturday, April 17, 2010

A Return to Normalcy...or at Least a Visit

This week we managed to return to our schedule (sort of). I attended Emily's ballet lessons and met with her teacher, went to softball games, wrangled homework and cranky mornings, and we even all went out for crawfish Friday night with friends. It felt so.....NORMAL. We were just a family, a bit frazzled by the lack of sleep that comes with a newborn, but resuming life with a new family member. Then there were the moments that remind me that things are different now. A sense of panic when a stranger reaches to coo over the baby. I remind myself that it would not be ok to yell at them to go wash their hands! ( a little rubber sign does dangle from his car seat carrier stating "Please wash your hands before touching mine", but some people get so excited over a tiny squishy bundle they simply don't see it.) And those moments are nothing compared to pushing the stroller around the elementary school grounds. In those moments I empathize with anyone who has germ phobias.

See, I've never been that person. I've always happily believed that the interactions and time spent with people are far more important than appearances. That's a flattering way of admitting I'm a happy-go-lucky slob. I've never believed in hand sanitizer or avoiding the dirt, dodging contagion never particularly worried me, and I've never boiled a bottle to clean it in my life. I liked that the fear of those things had zero impact on me. Now...well, I'm making some monumental adjustments and trying to maintain some sanity at the same time. I can not, and have no desire to keep my son in a bubble. I know he will pluck a lollipop from the dirt and direct it to his taste buds someday, and I know he'll attend a low key booger tasting at least once in his young life. I am the type to relish a good mud puddle, I mortify the 'proper lady' set with my hearty encouragement of hands on environmental exploration. *sigh* The pendulum had to swing a little as I now have to sanitize nebulizer cups daily to discourage any bacterial growth. Hand washing has also become a necessary habit, and I have invested in antibacterial soap and paper towels for every available sink. Bacteria is the bane of a CF lung's existence. Striking the balance between keeping my child safe and not keeping him isolated is going to be tricky. I've started by observing the behavior of the human male offspring and it appears I will be spending half of my life biting my lip and clapping a hand over my eyes...

Second Semester Cystic Fibrosis:

While we're on the subject of 'normal', we are adjusting to our new routine. I am trying to space out the dosing of Jackson's medicines so his little body doesn't have to process them all at once. A rundown of his daily routine, and what each of the medicines does;
Enzymes and feeding
Jackson's pancreas is clogged with the notorious thick and sticky mucous of CFers, so digestive enzymes aren't able to pass to his intestines and break down the nutrients in his food. This is called Pancreatic Insufficient Cystic Fibrosis, and 85 to 90% of CF patients fall into this category. Each time we feed him, we start by sprinkling a capsule of enzymes on a tiny spoonful of applesauce. The granules have a special coating that hangs on through the acidic stomach environment and only opens them up in the alkalinity of his intestinal tract to do their business.
Yep, the anti reflux meds. And they changed his life. One quarter of one milliliter twice a day helped Jackson's intestines to revert to the alkaline environment they need to be ( the acidity of his stomach had extended itself to the intestines previously, causing him a significant amount of pain and gas), also helping his enzymes function at peak capacity and enabling him to get the most out of his food. Were he one of the many CF babies who struggle with reflux, it would have nipped that in the bud, too.


Enzymes and Feeding
Salt Supplement
Because of the faulty transfer of salt and water in Jackson's cells, he loses much more salt in his sweat than you or I, and we replace it for him. Right now he takes 1/8 of a teaspoon each day, and thanks to the kind folks at Whataburger, we have a drawer full of pre-measured doses. I mix it with about 2mL of water and squirt it in his mouth. I've perfected doing it so he doesn't spit it out, much to his chagrin. Of all the things ha has to do and take in a day, this is his least favorite.

12 Noon
Enzymes and Feeding
Albuterol and CPT
Albuterol is a bronchodilator, meaning it opens up his airways to allow more airflow in the lungs. It is administered via nebulizer, popularly known today as a 'breathing machine'. He has a special attachment to his that's a pacifier, so he om-noms on a paci while the meds go straight up his little nose, forming tiny beads of condensation on his nose and eyebrows. We follow up the treatment with CPT, or Chest Physiotherapy. I use a little rubber cup called a chest percussor and manually tap on his chest over his lungs to loosen and dislodge the mucous. When we piggyback the albuterol with the CPT, Jackson usually coughs up some of the junk, and feel pretty good afterwards.

Enzymes and feeding

Jackson has prescription vitamins. His body has a hard time absorbing some fat soluble vitamins, so he takes a vitamin supplement. I think these vitamins are pretty cool because they've managed to molecularly wrap them in water, so that the body thinks they're water soluble and digests them more easily. Ta Da! The only problem is that they're super concentrated and stain everything they touch a carroty orange...ultimately including his diapers. The diaper service hasn't cut us off though, so I guess there's no downside!

At this point we're done with the first med cycle of the day. After that, Jackson still eats and takes enzymes about every 3 hours, and gets another dose of Zantac and another Albuterol and CPT session. When you add this to the normal eat, sleep, poop routine of any five week old it takes up most of the day. Sometimes I realize we haven't left the bed yet and it's noon, but not because we're watching Wendy Williams and eating bon bons. It is getting easier, and I'm working on the logistics of travel and outings, and before long it will all just be second nature. I also journal all of Jackson's feedings, meds and diapers so that if something changes, the doctors will have a perfect record of how it all went down.

Okay, if you've read along this far, you get a cookie! I want this blog to be educational as much as an emotional outlet. I delude myself that someday it will help someone in a big important way, so I put a lot of effort into information and accuracy. Now in addition to having DONE all these things before I cleaned the house and made dinner today, I've won myself out in the relaying of it all. I'll try to reward your loyalty by sprinkling in oh so cute baby pictures.


  1. The grief comes out at funny times. Like at the hairdressers last week - what was THAT about? Just saw a young man as a patient who is a severe severe asthmatic, terrible nasal polyps and sinuses - said his pediatrician sweated him when he was a little boy and it was negative, and I said "Do it again. Now".

  2. You really are an amazing woman. And since you don't have time to make or buy me a cookie, I'll just eat one of my cupcakes. xo kat

  3. It does hit at odd times. I had to buy new sunglasses because I don't know when I'll be at lunch or a little league softball game and just tear up. I've been particularly vulnerable when people who don't know ask how the new baby is.