by Sarah | Dec 13, 2010 | All About Denver, All About Kennedy, Crap, Cystic Fibrosis
Sometimes it’s easy to ignore it all. To push aside the stress, the fear, the worry.
“The appointment is a month away,” you tell yourself. You think there’s no point in stressing now.
After all there’s not a damn thing you can do.
And things go smooth. You almost forget.
Then the moment happens.
Out of the blue you remember what you tried to forget. A reminder phone call for an appointment. A simple glance at the calendar.
And all the fear and stress you’ve shoved aside checks you into the boards rougher than any hockey player.
***
One week from today there are two big doctor’s appointments. Both on the same day. Both with the same doctor.
**
Angel will have her functions checked again. If she doesn’t bring her numbers up, our Christmas may be spent in the hospital. We will also be discussing having a full genotype run on her to determine her exact CF gene combo (as the original bloodwork did not turn up her genomes in the ‘standard’ for CF).
**
Brandon is also meeting the pulmonologist for the first time. He will have another sweat chloride test run (if Angel’s evolution is any indication 2+ tests = diagnosis). He will have blood work run (possibly a genotype for him as well). The doc will discuss his history and determine what other testing he needs.
**
I don’t know what’s going to happen.
I try to focus instead on keeping insanely busy for the holidays.
Then it hits.
One week from this minute I may have 2 CF kids instead of 1.
Or not.
I may be trying to figure out if the genotypes will be covered by insurance and if not, how to afford them.
There’s a lot of unknowns. I hate unknowns.
I don’t know how to help a grown child that’s always been healthy come to grips with a CF diagnosis.
Angel, well, she’s growing up with it…it’s already normal for her. Brandon grew up without major issues.
I don’t want to jump the gun…
But I can’t erase the fear.
by Sarah | Nov 18, 2010 | All About Denver, Crap, Cystic Fibrosis
Yesterday I posted about it. About the nerves I’d be living through today. About how our ‘perfect’ boy was so perfect that he faded into the background in the complication of our girls chaotic needs and schedules.
Until today when he got his sweat test done.
The test went smooth, he sweat like a champ. She told me the results would be faxed over to my Doc’s at which point I stopped and raised my eyebrows in surprise. I asked why we wouldn’t have the call back number because our ped’s office closes at 4:30 (when the results are released).
The tech, who remembered us thanks to Angel’s seven sweat tests, said that when an outside doc confirms there is no phone call…it’s special to the pulmonology department. But, also because she knew us, she did us a favor…she put a note on to put his results into the system because she knew I’d worry after Angel.
We came home and the rest of the day I was pretty okay. Just a little anxious, but overall not bad.
Then Brandon walked in the door after school. 40 minutes before it was okay to call for the results.
The minute he walked in the door my heart twisted, leaping into my throat, pounding, shuddering.
I had forty minutes to wait.
Forty. Long. Minutes.
But I already knew.
But I tried to cling to hope.
Promptly at 4:30 I dialed the number. I entered his patient number. I prayed. I hoped.
“Please call our office at…”
I burst into tears.
I know that system well. If your results are negative, they say NEGATIVE. They don’t tell you to call.
After several minutes of panic I called the pediatricians office and in HUGE relief someone answered. I asked if they’d received the fax. The nurse got on the line, telling me that my ped was out of the office until Monday….BUT, since we’d already been through it with Angel, she told me the basic results.
On the CF scale, for sweat chloride levels, the “negative” numbers are 0-39PPM.
Brandon’s levels read at 42.
Low…but in the positive range.
Our regular pediatricians partner called me to fill me in further.
They aren’t calling it CF – because they can’t. With numbers that low we have to re-run the test (much to Brandon’s disappointment, the electrical current really bothered/stung him).
But we’re getting an appointment with Angel’s Pulmonologist.
There will be more tests.
Nothing is officially official.
But ‘Redefining Perfect’ just got even more complicated.
by Sarah | Nov 10, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Lost. Shivering. Hazy moon is doing me no good.
My baby is sick.
And I didn’t even know it.
Today was Angel’s regular CF clinic appointment. Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms. Her appetite has been great, no lethargy, no tiring easy.
I was expecting nothing.
Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem. Her breath wasn’t spiking up as high as it usually did. Breath after breath was low. I got worried.
The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist. First word out of the main doc’s mouth was x-rays.
What it came down to is once again we are on the edge. The precipice of what could happen. Our Angel has taken us to this precipice many times over the past year. We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.
Every time she succeeds in beating the challenge.
Every time I spend a month worried that she won’t.
This time it’s one month again. Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.
For 3 years I’ve been sitting on the edge. Waiting for the first big illness. It hasn’t happened yet. I’m not wishing it on her, I’m not wishing it on us. I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.
I hate living like this.
I hate this illness.
I hate worrying that every little cold will be the big one.
I hate that my baby can be so sick and I didn’t even realize it.
I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.
I hate having to force aside the fear and worry just to live each day with a bit of normalcy.
I hate the month to month.
I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.
by Sarah | Sep 18, 2010 | All About Denver, All About Kennedy, All About Me, All About Molly, Cystic Fibrosis
Day 06 – Something You Hope You Never Have To Do
My biggest fear day in and day out.
I hope I never, ever, have to bury one of my children.
I hope that Brandon, destined to drive in just a few years, finds and uses common sense. That he has the same instincts I did to never use drugs, to not drink until he’s older. That nothing happens to mar is bright future.
I hope that Riley far outlives and outshines me and her father. That none of her issues cause her problems. That she grows to be a proud and strong young woman.
Above all I hope for a cure.
That Angel never has to wait for a lung transplant to save her life. That she doesn’t have to live her days hooked to machines that force breath into her failing lungs. That they find a cure for even her unique a-typical form of this horrible disease.
I never want to bury ANY of my children.
Yet daily I wonder if I will have to.
I hope to the heavens that I won’t ever face that.
by Sarah | Jul 19, 2010 | All About Kennedy, Cystic Fibrosis
I should have updated sooner, but as you’ve seen I had a lousy week last week. So here is the official Angel – CF update.
Angel’s lung functions went up – but only by 3%. This is not a good amount of improvement. We were allowed to go home, but our Pulm wants more improvement.
In case you missed it, last year I posted about our journey to the CF diagnosis (Here: Part 1, Part 2, Part 3). Because of that journey and the low sweat chloride levels, plus her generally clear lungs there has always been a niggling of a doubt about her diagnosis. Not just for us, but for the pulm as well. After x-rays she’d make statements like “her lungs look more CF now” and other statements like that. There was always a “maybe-probably” to it.
Well there is no more ‘maybe-probably’. Our pulm stated that any doubt is fully erased. You do not get Pseudomonas unless you have CF.
For now, we’re home. For now, we won’t be checked in.
We re-ran the sputum culture. If it comes back positive we start a new lifelong treatment cycle. The TOBI (antibiotic) will become a permanent fixture. Every other month she’ll be on the antibiotic. We’ll know by the end of the week.
So that’s where we are. Continuing on our path with our Angel a little the worse for wear. After this week it may be a regular regimen of medicine, but no hospital stay for now.
by Sarah | Jul 18, 2010 | All About Kennedy, Crap, Cystic Fibrosis, Photography, Random, Therapy, Weekly Winners
All taken w/ Canon Rebel XTi.
For week 7/12-7/18/10
This week was crazy bad (see previous post), but it also had some good things. Today is my birthday and I want it to be good, so I’m trying to remind myself to just breathe and remember the good things. These pictures help.
I did attempt to re-start project 365 this week, but I forgot on Thursday (worst day) and decided to try again next week, so hopefully that will be happening in the next few weeks. I want to get ahead of the game by a week.
I also got a new photo-editing/managing software program this week. I’m wishing I could afford the pro version when it’s time to buy, but I’m afraid it’ll not be happening this year. Either way, I’m loving my new editing software and will tell you more about soon. It’s my new best friend.
Onto the pictures!
Waiting on a train
Spanning the distance
Bridging the Gap
Lines Across the Times
Tying it all Together
Lost along the Way
Pretty Hair for a Special Day
JUST B-R-E-A-T-H-E
(This was the test that determined if she stayed home or was checked in. She just had to breathe well. She didn’t, but she breathed better than last time. That’s my Angel’s RT in the picture with her. She always makes it fun for Angel!)
It’s a lot this week, I know…but Sunday was a good photography day. I ran out and took a little photo walk, thus the railroad theme for most of it.
Go over and visit Lotus for some more great WW’s!!!
Sometimes it’s easy to ignore it all. To push aside the stress, the fear, the worry.
