Saturday, October 31, 2009
My little ladybug, Lucy had a very enjoyable Halloween despite the fact that she did not partake in a nap all day. I don't know how we made it through this trick-or-treating day without any throw-your-body-on-the-ground-arch-your-back-scream-so-loud-it-pierces-eardrums kind of tantrums. Today I felt like I was in the Matrix movie and I was completely convinced that I was impervious to the tantrum bullet. I dodged, bobbed and weaved my way through our day like Neo and Morphius.
As we left the house I took some video of me telling Lucy what to say when we go out foraging for tricks and treats.
My little ladybug scored me a ton of candy. She gets all the fun of going out to get the goods but way to young to eat any of it! I will be riffling through her bag and finding a few sweet morsels this evening for myself. What a treat!
Friday, October 30, 2009
Dr. Perez says her lungs sound clear and free of wheeze. Her throat/sputum culture didn't grow anything abnormal so the antibiotic she is on, Bactrim, is just fine for ridding of her cough. Only one more week to go on that.
Lucy's digestive issues are still uncontrollable and include bulky, smelly stools that come more than 3 times a day, major bloating of the stomach but never hard or painful to the touch, gas that could clear a room and rectal prolapse despite the Miralax everyday. She often complains about her tummy hurting so we are going to switch her digestive enzyme from Creon 6 to Pancreacarb 4 to see if her food will be better digested with it. We'll start the new enzyme after she is done taking the Bactrim and back to her 'normal' self to see if there is a change in the tummy department.
Our next appointment at the CF clinic is November 16th where we will see the whole CF team for evaluation. I have high hopes for the Pancreacarb!
Thursday, October 29, 2009
This is the first time Lucy has had her toe nails painted. She did so well and didn't move an inch while I brushed on the shiny pink pearl polish. She even helped me blow on her toes to get the paint to dry faster.
After her toe nails dried I took her upstairs for a facial scrub and a warm bubble bath.
I keep trying to tell Lucy that some women pay big bucks for this kind of treatment but she doesn't believe me. What a lucky girl!
Sunday, October 25, 2009
Lucy was such a trooper when the phlebotomist shoved that needle into her vein as I 'bear-hugged' her to keep her from thrashing around. The woman pushed the needle into the elbow pit of Lucy's right arm and then wiggled the needle around inside, shoving it to and fro, as if the needle were a metal detector swiping the scene for lost treasure. Lucy cried out for only a moment and then, inside the tubing, was dark, oxygen-rich toddler blood. I acted so excited to see my child's plasma in that vial. So excited that Lucy stopped crying and began to observe the bloodletting process.
Lucy looked on in awe as we watched together the test tube fill up slowly with her blood. She gave out one more good howl as the woman removed the needle from her vein and then returned to a hesitant happy when she found out that the tape that goes over the gauze was the color purple.
Next Friday, Lucy has a regularly scheduled appointment and check-up with her pulmonologist and should be when I find out the results of her sputum culture from this day and her blood test results. I expect only good news from this visit.
She has been taking Bactrim for over a week (only two more weeks to go) and is doing much better now. Her cough is regressing and she has no ill side effects from Bactrim like she does with Augmentin. And so we keep on truckin' and we can't wait for Halloween!
Tuesday, October 20, 2009
Monday, October 19, 2009
Thursday, October 15, 2009
It all started at around 1 o'clock in the morning while I was at work (bartending) and I got a horrible headache "migraine-style" and started throwing up at work. It had to have been food poisoning or something because I was fine after a few hours.
I woke up in the morning, after a long night of work and vomiting, to call Lucy's pulmonologist to schedule an emergency visit for that day. It all started last week with Lucy having a little sniffle and stuffy nose which I passed off as just some seasonal allergies and the "weather-change blues." After a week of wiping her nose constantly and Lucy's inability to blow her own nose it has moved into her lungs and turned into coughing and wheezing. It has only gotten worse and so I wanted her to get a sputum culture done to make sure it is not a serious 'bug' making itself at home in her lungs.
Back to the doctor call... I gave Dr. Perez's office a ring and I was told that Dr. Perez would be out of the office and unavailable until next week. Lucy's doctor always seems to be out of the office and never available when I need to speak to her or make an appointment. The alternative for emergencies is another pulmonologist in the same practice that also specializes in CF but... instead of the female, 30-something, child-friendly and personable Dr. Perez...this other doctor is grumpy, old and has no bedside manner.
I took the next available appointment with Dr. Grumpy and it just so happens that these doctors have 3 different locations to better serve their patients but yesterday the office location that Dr. Grumpy just happened to be working was the one located the furthest from my house, an hour away in Folsom, Ca (the same Folsom that Johnny Cash had the prison blues about.) I would also like to make mention that Northern California got hit with a massive Fall rain storm yesterday and it rained 3 inches in one day. I am extremely fearful of driving in any kind of weather condition except the sunny kind of condition.
So I set the scene... Me, tense and sweating, driving in a torrential down-pour doing 45 miles per hour on a 4-lane freeway with fearful tears running down my cheeks almost as swiftly as the rain fell from the sky as my precious cargo slept soundly in the back seat. With clammy, white-knuckled hands I managed to deliver the car, Lucy and myself safely to Folsom and found the doctor's office.
We went in for her to be looked over by Dr. Grumpy. His diagnosis is to put her on another 3 weeks of Bactrim (antibiotic), get a throat sputum culture and continue as usual with her other daily treatments. Not what I was hoping for but certainly not the worst thing all day. Now it is a waiting game for the lab to come out with the results of her culture to see what is really going on in her body and what kind of infection we are dealing with. My bet is Staph. Again.
Mr. Grumpy handed me the culture for it to be hand delivered by me to the lab. Having never been to this Folsom office before, I asked him where the nearest lab was and he told me, "Directly across the street. Can't miss it." I proceeded to take Lucy and her swab across the street to the only other building, an office building. I went in and took a gander at the directory in the lobby. No lab. I went out to the car, called the doctor's office to get better directions, was put on hold for a few minutes and then was told that the lab was actually on another corner entirely. Certainly not directly across the street like Dr. Grumpy had stated.
I loaded Lucy back into her car seat and headed a several hundred yards away, over a hill and into a hospital parking lot. There was a lab at the front of the building so I went in. On the window is a sign that reads 'Closed For Lunch 11:30-12:30.'
It was 11:34. If I hadn't been directed to the wrong building by Dr. Grumpy I probably would have made it to the window in time. I sat in the car for a while wondering how I was going to entertain a busy toddler for an hour and ended up going to the only food place I could find in a one mile radius. Quizno's. Not my absolute favorite place to eat but the hot soup, chips and sandwich made Lucy a very happy camper.
I returned to the lab at 12:30 and eagerly handed Lucy's culture swab to the attendant. She looked at me, looked at the lab form and swab and then looked back at me again. She stated, "This paper says Quest Diagnostic. We are LabCorp. You need to go down the hall and turn left." I had the wrong lab the whole time and never had to wait an hour for lunch break at all! Turns out that Quest Diagnostic has someone on staff all the time and didn't close for lunch. At this point, I was singing those Folsom Prison Blues.
With all the worries of the doctor visit behind me and the storm starting to clear up I got onto the freeway and headed home to get Lucy her Bactrim at the pharmacy and both of us a nap. I was nearly home, about 10 miles to go, when I heard a loud noise and felt the steering wheel shudder. I was doing 75 miles per hour trying to pass a slow-poke but it felt like I had ran something over. I pulled slowly and safely into the slow lane of Interstate 5, one of the busiest highways in California. The shudder got worse and within seconds I knew that my back tire had blown out. I pulled over to the side of the road and with diesel trucks and afternoon traffic whizzing by me, I cried. I lay my face in my hands and bawled like a baby while my own baby slept soundly in the back seat.
This day was not going to get any worse for me. At first it was just inconvenience and hassle. Things were not going my way and then it got very dangerous and very frightening. I have had a few blown out tires before but never with a sleeping child in the back seat. I was scared. I called my brother to help with the tire change and called my mother to come get Lucy off the highway and home safe.
Everything worked out in the end. My brother and mother came to my rescue yesterday and I went out and bought a set of 4 new tires.
The best part of this story is Lucy! She never complained once that day. She was such a trooper seeing Dr. Grumpy, getting a cotton swab shoved down her throat, lugged around Folsom in search of a lab and snoozing through the entire shredded rubber incident. Lucy was wheezy, snotty and congested but never cried or whined about it once. I believe I did enough roadside blubbering for the both of us.
Friday, October 9, 2009
This is Lucy getting to know her new device, the device she will use everyday for at least 30 minutes to aid in the clearing of mucus in her lungs. She played in the duffel bag (she calls it a couch) and used the vacuum hoses to "clean" the house!
Lucy had an amazing time picking out her own pumpkin to crave on Halloween but the most fun was in the barn. She just loves animals and can never get enough of them!