by Sarah | Dec 27, 2010 | All About Kennedy, Cystic Fibrosis, Hospital, PICC
When you have your first baby.
When you have surgery.
When your baby is sick.
You’re in the hospital. In a careful bubble designed to protect and heal.
The ‘real’ world falls away.
Bills are forgotten.
Family drama – gone.
Medicines are administered by trained professionals.
Problems are solved by caring nurses or hospital staff.
You have nothing to do but care for the illness (or newborn).
Safe.
Then they say “You’re going home.”
And delicate as it is, that bubble pops.
Fear attacks you.
Can you do this at home? What if something goes wrong? The REAL world is out there….waiting with responsibilities and things to do OTHER than care for the illness (or newborn). You have to divide your attention.
On Thursday we were granted leave. We were going home.
My cabin-fever-filled husband was jumping for joy.
I was trembling in fear.
It has turned out all right.
But on Thursday I was crippled. I was afraid. We had to administer PICC meds at home. There was Christmas. Two other kids. Family. Responsibilities.
It was so hard to be joyful that my baby would be going home – free of the hospital.
All I could focus on was the fear that we’d mess up her carefully maintained schedule. That a dose would be missed. That a child would play with a picc line. The other two kids would add to the chaos, feel jealousy over the constant attention to Angel’s schedule (they have). I couldn’t handle even looking at the PICC line, much less administering a dose. It wasn’t fair to make Archie do it all…but I couldn’t handle it, could I? Everything could and would go wrong. We were no longer ‘safe’. SHE was no longer ‘safe’.
It was crippling.
I felt guilty.
I should be happy she’s improved so much so fast.
I should be jumping for joy that we would all be together at home for Christmas.
But I couldn’t.
I was too afraid.
****
*I wanted to post this last Friday, but it didn’t seem like a great Christmas Eve post. Over the next couple of days I’ll update on how we’re doing…how I’m doing…how she’s doing…how the other two are coping…how much of a pit our house currently is…all of it – the good, the bad, the ugly, the beautiful (there’s quite a bit of that – & that needs to be covered). It’s all here. Coming over the next few days. Her follow up visit with her pulm is on Wednesday and we’ll know more about when the medicine will stop & the picc line will be removed. Over the next week, I’ll tell it all….
by Sarah | Dec 24, 2010 | All About Kennedy, Cystic Fibrosis, Holidays
I hope your cookies are sweet.
Your trees are beautiful.
Your families are together.
That joy fills your day and your spirit.
We are home.
Our family is together.
And that, in the end, is all that matters.
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 | Dec 2, 2010 | All About Learning, All About Molly, Autism
Back in November we had our long awaited IEP meeting.
They’ve confirmed and called it Autism Spectrum Disorder, Pervasive Developmental Disorder – Not Otherwise Specified. In other words, they aren’t specifically labeling yet. They need more time to decide if it’s PDD-NOS or Aspergers (both of which she has indicators for).
Therapies are in place to help her.
Her testing has been altered to accommodate her needs.
Goals are set.
***
According to her teacher, outside of the initial very rough period of adjustment after her switch to full-day kindergarten she’s made leaps and bounds in her progress. Her fits are fewer, she’s more willing to sit for projects.
She still doesn’t play with the other kids, and they don’t play with her. She shadow-plays their play…and occasionally attempts interactions – but she is ‘different’ enough in how she tries to play that the other kids don’t really respond to it. That worries me.
But she LOVES school. LOVES learning. Is so excited to go every day. Counts down the days until she can go back when it’s the weekend.
All along I’ve been convinced that school was wrong for her.
Some days I still believe that.
But I can’t deny her excitement to learn, to be at school.
But then I see the signs that everything isn’t hunky dory.
Beyond behavioral issues – the inability for her to settle down when she gets home. The increased fighting w/ her siblings.
There’s the sudden aversion to eating. She’s so skinny, she can’t afford to not eat. She’s turning vegetarian, refusing any and all meat – which would be fine if I had the slightest clue how to feed a vegetarian (we are a MEAT loving family here). Beyond that, her lack of eating is resulting in thinning hair again. I rarely try to give her ‘pretty hair’ any longer because her hair is so thin, I just can’t style it.
And the bed wetting. I don’t blame her or yell at her. She apologizes every time. She just doesn’t know. She crashes SO hard after big overstimulating days that she sleeps right through her need to go. It’s not her fault, but I have enough laundry without this kind of event happening nightly.
***
I’m still worried.
My heart is torn.
There is no right.
Keep her in, how many more behaviors will emerge?
Take her out, break her heart and cause another meltdown triggered by a major change.
There is no right.
I’m incapable of helping her.
Of handling my own conflicted thoughts and heart and mind.
Lost.
So afraid of making another wrong turn.
Afraid that we’ve already screwed her over.
Afraid that we won’t be able to correct this.
Afraid that she’ll never ‘fit in’ and always feel that pain the way her daddy does.
When you have your first baby.
