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 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.
One last post on the bad. Then tomorrow I will post on our joys & blessings.
