by Sarah | Feb 28, 2013 | All About Erik, All About Kennedy, All About Me, All of Us, Cystic Fibrosis, Failure to Thrive (FTT), Hospital, Special Needs
Monday morning Kennedy had her tests scheduled.
By luck (or misfortune? or happy accident?) they decided only to perform the bronchoscopy. Of course, that meant she still had to undergo anesthesia and have a tube stuck down her nose – but it was one test, not two.
Overall the test went well. They were able to get a good sample to test.
For the bronchoscopy purposes and getting the sample, it was required that they inject fluid into the lungs…of a CF patient. This, of course, “could cause a low-grade fever.”
Low-grade my ass. She spiked up to 103.6*.
In the end, it came down with Tylenol, snuggle time, and a good round of her [amazon_link id=”B005LAIHW2″ target=”_blank” container=”” container_class=”” ]favorite[/amazon_link] [amazon_link id=”B007MDB6L0″ target=”_blank” container=”” container_class=”” ]movies[/amazon_link].
Now she’s back to normal, at school, playing/fighting with her sister…and none the wiser.
Meanwhile Erik & I wait.
And wait.
And wait some more.
The test results could mean a hospital stay, a PICC line, a g-tube – any or all of the above.
Kennedy is blissfully unaware of the repercussions.
But Erik & I wait.
Waiting sucks.
by Sarah | Nov 23, 2012 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
When Kennedy was diagnosed with CF we were assured that we were likely to see more trouble from her myriad of other issues than we would for CF. With the exception of one hospital stay two years ago, that’s been mostly true.
When Denver got his diagnosis at the age of 13, we knew his situation would be different. Already he had chronic lung issues (pneumonia, bronchitis, etc).
Still, given the unique nature of both his and K’s CF…and the fact that I have a document stating that genetics can not confirm the diagnosis in either child – therefore making them “atypical” CF cases…
We still never realized how fast it would happen.
We didn’t realize how soon he’d end up in the hospital.
How quickly one hospital stay could change his day to day existence.
Or the perceptions of those around him.
How he would go from being “Oh, I don’t see how they could diagnose him with that” to becoming, “Is it safe for him do this? What about his illness? We need his doctors information to let him do…”
In heartbeat.
In a cough.
In a moment’s time he went from one life to another.
Change happens fast for everyone.
This lightning speed attack of time & reality threw us all for a loop.
We’re all still adjusting.
It takes time.
Let’s just hope time gives us a little breather to catch up before we get blind-sided with another dose of reality.
by Sarah | Jan 12, 2011 | All About Kennedy, Cystic Fibrosis, Hospital
The hospital is only a memory.
The PICC line is gone, only a few scabs and red skin serve to remind us it was there.
A box of leftover saline syringes lingers in the kitchen.
Two more appointments in the coming month loom ahead.
But…
We are in ‘the clear’ as much as we can be.
Angel has resumed her regularly scheduled programming.
With a little bit more joy than before.
A few more crazy antics added to her repertoire.
The songs she makes up, I listen to the words now. She’s smart & clever & playful.
She responds to Dora, Diego, and Team Umizoomi with enthusiasm and joy. She sucks in all knowledge she can like a sponge, seeping off her her sisters growing roster of knowledge.
Her love for her Daddy has expanded and grown since the hospital, with random expressive “I love you’s” popping out so much more often than before. While she still gets mad at him, she snuggles with him more.
The light that has always been our most joyful, smiling baby has grown brighter.
Or maybe we are just taking in that light with greater gratitude than before.
Appreciating and savoring it more deeply.
She is our light.
She always has been.
Nothing can extinguish her.
She’s indomitable.
She’s….our shining Angel.
by Sarah | Dec 31, 2010 | All of Us, Community, Cystic Fibrosis, Hospital
In ll of my years online Archie has been frustrated. He wanted me to get “real” friends. People that I could see face to face, call on the phone (even though I have issues using the phone). That were flesh and blood before me, not who-knows-where across the internet.
Archie hates when I tell this, because he says he does know that the people are “real”…they just aren’t close physically. He knows how deep my friendship with Jess is, after all she’s the first one he called after my surgery, and on other occasions. He would just prefer that my ‘best’ friend live across the street (face it, wouldn’t we all like that).
ANYWAY. I’m getting off track on the point of this post. We were admitted, I tweeted about it and left it at that.
Within an hour, I had a message from the beautiful Emily. It said simply, “What do you need? Tell me what you need and I’ll make it happen.”
I have often talked about the Indianapolis Blogging Community and how wonderful it is. The parties in recent months have enhanced that fact.
But I had no idea what the sense of community in both the bloggers and in my own neighborhood would mean.
Casey came to the hospital loaded down with goodies that Emily had organized. A pillow pet was in there for Angel, as well as snacks from Casey & Emily, and Katy (her delectable goodies are pictured above) and Sarah and MrsBlonde.
So much that Archie and I just stared in awe & wonder at the gifts we’d been given. The support offered. Snacks, full meal dishes that only needed to be popped into the oven, among other things for which we’ll be eternally grateful.
To add to the amazing things these women pulled together for us, I came home to find our driveway cleared of snow thanks to neighbors, a small package in the mail from Michelle (another Indy Blogger), and neighbors that gathered mail and also put together small presents for our little one.
Archie and I have been so touched by the support and caring in our established (and newly established) communities, we are still moved to tears by it. I don’t think we could have made it through these past couple of weeks without these wonderful people that have touched our lives and our hearts.
IT had been many years since I have been established in such wonderful communities.
My heart is full with our blessings, even through the darkness that we’ve been moving through.
****
~Tomorrow comes the post about another lifesaver we had, rather by coincidence. It’s a post I’d been planning on writing with far more humor and tongue in cheek – but now it will be much more.
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…
Monday morning Kennedy had her tests scheduled.
