by Sarah | Jan 17, 2011 | All About Denver, Crap
Proving he’s more like me than maybe he’d like to admit – the boy hates being in limbo.
The unknown.
Unanswered questions.
Like a thousand pound weight they bear down on him.
Turning what was a well-behaved, maturing pre-teen into a sullen, moody, lying, ignoring his homework teenager.
Yes, I’m sure part of it can be attributed to the fact that he IS a teenager now (or will be in a week)…and there’s hormones and all sorts of craziness, and two sisters that garner much of his parents attention.
But it’s also largely the unknown.
He doesn’t fully understand Cystic Fibrosis.
And all of my explanations and answers can’t change that.
He’s scared.
He doesn’t know what it would mean for him.
He can’t figure it out without an answer.
If it comes back negative, relief will sweet through each and every one of us.
If it comes back positive…
It will not be easy.
Not that it was “Easy” for Angel – but she is growing up with CF. It is ‘normal’ for her.
Brandon will have to learn a new ‘normal’.
But he will learn. And be able to deal. And cope.
But that can’t happen without answers.
Getting out of limbo.
Limbo sucks.
(16 days to go…if the results are back in time for that appointment.)
by Sarah | Jan 5, 2011 | All About Me, Crap
Oh, I am very weary, Though tears no longer flow; My eyes are tired of weeping, My heart is sick of woe.
~Ann Bronte
There have been plenty of posts for me to write in recent days. Recaps of 2010. Dreams of 2011. The kids are back in school. Life is returning to our level of normal. All PICC lines are gone, casts…
But my fingers haven’t typed a letter.
I’ve been sick. Sick as a dog for the third time in 2 months.
And to be honest, 2010 sort of sucked. We had some highs, to be sure. Some wonderful notes…but we had a few pressing lows, and some that haven’t even been dispelled yet. Areas where we linger in the hellish limbo of unanswered questions.
I lost my grandmother this year. My spunky, vibrant, bossy, stubborn grandma was taken within a week of a cancer diagnosis. Suddenly, cruelly ripped from our lives.
My Angel faced her first real level of illness at the same time. Her first severe round of massively strong antibiotics to defeat an infection that is beyond unique to CF patients. And then she was admitted to the hospital six months later for the first time. We had isolation, PICC lines, IV antibiotics…so many new and frightening evidences of her illness.
We heard the ‘official’ word “Autism” with both relief and tears. Riley faced kindergarten and challenges within herself…and gave us more challenges than we were sure we could manage.
Brandon broke finger in the beginning of summer, his wrist at Halloween. He got straight A’s…and then became faced with a possible CF diagnosis for himself as well.
For the last two months of 2010 there was someone injured or sick at all times. There was no break, no respite. I, who by law as a mom am NEVER allowed to get sick, as I said above I’ve gotten sick 3 times in the past 2 months. Right now it’s so bad, I’ve been laid up since Saturday. I haven’t been able to talk for a week. It sucks big time.
My husband has been struggling against his depression with as much strength as he can muster. The end of the year between his birthday and the holidays are always soooo hard on him, and the added stress of constant illness…I fear he’s ready for a massive break.
I’m tired of crying – but then again, I still don’t think I’ve shed a tear.
I’m exhausted from the constant beat down. I’ve taken maybe 5 pictures in 2011 because I’ve been sick for all of it…and the picture above is one of them. I had to find the beauty somewhere…and I did in the gorgeous flowery pattern of frost on our truck’s windshield.
And I’ve found it in my Riley’s beautiful way of taking care of her sick Momma (which she has taken to calling me over Mommy). In Angel’s snuggling with her Daddy, sad because we can’t dare to let her snuggle with me.
Once I am better I can take the reins and find the silver lining again. I can free up my husband to release his restraints and rid himself of some of the burden’s beating against his fragile wall of strength. I can recover my house from the clutter of Christmas. I can make sure each of my children know I love them, and I’m not just the grumpy witch on the couch that semi-yells at them to be quiet w/ her non-existent voice (seriously, it’s SAD how I sound).
But right now…
I’m not there.
I only hope tonight is the night I am able to SLEEP. To get past the worst.
Because I don’t like being here.
I want to be there.
Where I had my sh*t together. I was “ready” to face whatever.
Right now I can’t even face myself. (seriously, be glad there’s no self-portrait here today. *shudders* It would give you nightmares)
by Sarah | Dec 21, 2010 | All About Denver, Crap, Cystic Fibrosis
Yesterday I told you about Angel and where we were with her.
Today it’s Brandon’s turn. He also had an appointment yesterday. One meant to look further into his abnormal test results. His initial appointment with the pulmonologist.
He was examined, lungs sounded clear.
The pulmonologist said that there have been studies that have been coming out that are showing that sometimes carriers of the CF gene can have low abnormal readings and just have more sinus symptoms, etc.
It was decided that instead of a sweat test, we would run full genotypes on both of the kids. To determine what genetic abnormalities brought on these strains. While Angel was being admitted, Brandon was sent for blood work and x-rays.
We felt satisfied with the explanation. Hopeful.
But no official results for a month.
Then, once things were settling down in our insane day…I got a phone call. The Fellow that had assisted our pulm said that he’d forgotten to call earlier.
It was about Brandon’s x-rays.
“The x-rays are abnormal. They appear to be CF in nature – but this is not enough to definitively call it yet. We still have to wait on the genotype results – which will be in January.”
So we still don’t know. We’re still waiting.
It might not be.
But it very well could be.
Another month of waiting.
My life has been cut up into months. Never ending. One month more.
One month.
by Sarah | Dec 20, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Today was the dreaded day. The one that has stressed my nerves for over a month. The one where two of my kids were to meet with the pulmonologist.
One had to face more testing, more questions on whether or not the CF was something he would claim for his own.
One had to improve her faltering health or it was time to get out the big guns of IV antibiotics and a hospital stay.
Tomorrow I will go into what happened with Brandon. Tomorrow I will delve into that pool of hurry up and wait.
Today I’m eyeball deep in hospital stays and IV’s and PICC lines and WILL WE BE HOME FOR CHRISTMAS?
I have not cried yet. I was almost fully expecting this to happen. I’ve welled up a few times, but managed to keep them away. The afternoon was spent finding places for our other two children to take refuge so that we could focus on Angel. Scheduling who would be where and when and for how long and who would do better sleeping in the hospital and who would do better at home?
And how would we really be able to handle our little baby’s first ever hospital stay.
In essence, Angel’s lung functions were still very poor, very low. Without a bit of question the doc started making calls before she even came into our room. Angel was to be admitted. She would start with a peripheral IV, and have a PICC line inserted soon as possible. Knowing what day was fast approaching, the pulm said that we would try to get her discharged on Christmas Eve and let us do the PICC antibiotics at home…but since it’s our first ever hospital stay and our first time with a PICC there are no guarantees.
Angel has been holding up extremely well. She calls the hospital her “new home” and says she wants to stay here forever.
They do her treatments (Albuterol by nebulizer & chest compressions) four times a day. She has her vitals checked every four hours. The nurses all love her (really, who doesn’t?).
She has a nice lady that comes in (a sort of ‘morale’ nurse) and brings in an iPad full of games when she has major stuff done (like IV’s or blood work). She’s up much later than we let her stay at home, and there’s a cabinet full of movies for her to watch on her (private) room’s TV.
Angel…she’s on cloud 9.
Archie and I are in our own little hell. Trying to be the strong ones.
This was not how I’d planned for my holiday week to happen.
My family scattered, each child in another place…Archie & I having to schedule a basic avoidance of each other to avoid hospital parking fees.
One way or another we’ll be together for Christmas.
It’s the week leading up that’s nothing like I pictured it.
It makes me sad.
But through the sadness I have been so blessed. We DO have people to take the kids. Archie CAN take whatever time he needs off if he wants/needs to – even w/o PTO left (they’ll be working w/ HR to find a way to cover the hours). We have offers of help.
I have found that not only can my fabulous Indy bloggers throw an excellent party…
But they are there for you when things go south. It has been many years since I’ve had “real” friends – my closest friends have always been cyber and far from local (every bit as real to me…but not someone I can go drink have coffee with). But in my time of need, so many popped up with offers of help and support. (One in particular…Emily, you are a gem beyond belief.) My neighbor has offered support (thanks, lady. Won’t name you, but I know you’ll see this)…and so many others.
Of all the things that have threatened to break my no-tears streak, it is all of the amazing outpouring we’ve received.
In this time of stress…it’s wonderful to have blessings to focus on.
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.
Proving he’s more like me than maybe he’d like to admit – the boy hates being in limbo.
