by Sarah | Dec 29, 2010 | All About Kennedy, Cystic Fibrosis, Hospital
One last post on the bad. Then tomorrow I will post on our joys & blessings.
Day 1 was pure chaos. We were admitting, doing x-rays, tests, getting settled. Shipping off other kids. Packing things at home.
Angel, for her part, was having a great time. The hospital was her “new home”. While she hated the IV, her mood was stellar. Cheerful. Excited. She didn’t care she was stuck in one (decent sized) room. There were new people in the super nice nurses and staff. She got to play with an iPad (she kicked butt on puzzles) while they were running tests. There was a TV that was ALWAYS on her shows. Games JUST for her. SHE was the star.
Archie & I?? Before our first sleepless night we were exhausted. On the uncomfortable couch in the room. With a child that doesn’t like to sleep in normal situations – much less with all this going on. Vitals being taken every 4 hours. Not to mention a heating/cooling system that is wonky and either too hot or too cold.
Strong. Boy, was my girl ever strong and brave. Faced almost every situation with a smile. Hated the IV – for about 12 hours, then didn’t care as long as you weren’t trying to take off the tape, or take out the IV. Hated the room that she was getting the PICC in…but then, don’t we all? It’s darn scary. Screamed in pain when they put in the anesthesia – but to be honest I might have a little when they put it in my hand – that stuff burns!! She was brave and strong, and charming and disarming. Everyone loved her.
I was weak. I had to run from the room when she started screaming before the anesthesia even touched her hand. I had to leave the room, or call in the morale team whenever they took blood from her PICC because I couldn’t watch, or listen to her cry.
I wanted to beg the doctors to let her stay in the hospital. Because I was scared of the PICC. Of a relapse at my incapable hands. Of popping “The Bubble.”
I only cried once – the day they put in her PICC – and only for a few minutes.
Maybe that’s the problem.
I’m still so exhausted. So worn down.
So is Archie.
We feel like we’ll never “Catch up” on the sleep lost (if there is such a thing)…or if we’ll ever be able to sleep right again.
We knew it was coming.
I wanted the “first time” out of the way…but I NEVER wanted the “first time” out of the way.
I need to cry.
I need to sleep.
I need to be able to go back to a time when I could pretend it still wasn’t real.
But I can never get that fantasy back.
by Sarah | Dec 28, 2010 | All About Erik, All About Kennedy, All About Me, Cystic Fibrosis, Hospital, PICC
There is no way I can handle this.
I’m not strong enough.
How horrible a Mom am I that I can’t help my own baby?
I’m so weak. I can’t even hold her hand when she’s screaming in pain and fear.
I ran from the room, bursting into tears.
How can they think I can do these meds at home?
We were on our way home. I was trembling in fear. We arrived home and Archie kicked into “Super Hubby” mode. Trying to do everything to make the transition run smooth for me. To ease my panic, despite his own level of it.
His attempts were valiant.
I was just not having much success coping.
The rest of the evening and night was a disaster. I was very short-tempered. So was wonder-hubs. All 3 kids were wired, over-stimulated, jealous, hyper, impatient. It was a mess.
Archie had to do her meds…and I got stuck having to hold & distract Angel – who was unhappy with the PICC line in general.
There was no way this was going to work. I went to bed un-satisfied, un-resolved, almost depressed.
The next morning the panic had subsided. I made myself to busy work – preparing for our Christmas Eve ‘party’ at my house. The neighbor had asked Archie’s help with something…and he was preparing to go right around medicine time.
While Archie took a shower, I stared down the meds.
I dug down deep and called over Angel.
I started the process.
I cleaned the line, and started the saline…and then the meds.
I had done it.
With minimal sensation of nausea…I had administered her medication into the PICC line.
And through it all, Angel hadn’t freaked once.
Maybe…just maybe…there was a way…
*********
Tomorrow, a little bit more of the ugly…how the others are handling Angel’s doses of attention…how we’re handling the schedule (not always so good)…and so on…
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 26, 2010 | All About Kennedy, Holidays
All taken w/ Canon Rebel XTi.
For week 12/19-12/25/10
With Angel in the hospital half the week, and dealing with her procedures and at home care I haven’t had a TON of time to take pictures…but I managed to get a few. Not Christmas morning, though…I was content to sit back and watch the action…just happy to have my family all together at HOME instead of in the hospital.
No Touch
Not that it was a problem…she wanted nothing to do with that IV…
‘Boost’ing Our Health
Tired Already
The View
Saved by the Droid
‘Twas the Night
Papa reading to (almost) all the grandkids. Even the oldest listened in
Digging in
Sweet?
See more of my photos over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
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.
One last post on the bad. Then tomorrow I will post on our joys & blessings.
