by Sarah | Sep 18, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
The hospital the kids go to for their CF is a teaching hospital. It always has been.
There have been many times we’ve gone to clinic and met new residents or fellows that were learning the craft from our top-notch pulmonologist.
Some don’t stick around for a while, others are around for at least a year.
The changing faces can get confusing when you’re in a long-term treatment plan like we are (or are terrible with names like I am).
When you’re in the hospital there are some definite positives – and definite negatives.
Positive – you have a team of doctors working your case. You know you’re getting the best care and a variety of input on your treatment.
Negative – you have a team of doctors working your case. Every morning each member of that team comes in to check breath sounds. Not all together to get it done once…nope, one by one over the course of an hour.
Positive – There are more nurses and therapists working your treatments and procedures.
Negative – sometimes the room is overcrowded with people each dedicated to your care.
This hospital is the best place for care. I know the people care about my child and making him healthy.
I know that there are many people working his case.
But it’s still overwhelming and frightening.
by Sarah | Sep 16, 2013 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
320 days.
Not even a full year.
320 days ago Denver was admitted to the hospital for diminished lung sounds and functions. He got sick in two seconds flat, and was in the hospital 2 days later. They wanted to keep him for a couple of weeks, but he was able to go home after a week. Then stayed on antibiotics for a month.
Back in the spring he had a short bout of illness that was treated with antibiotics.
A month ago he got sick again.
It wasn’t too bad, his lungs sounded clear. He was put on oral antibiotics for 2 weeks.
Things improved…
For a time…
Until they got worse.
Earlier this week the occasional low grade fever crept back up. Lucky for him, he had a CF Clinic appointment. The pulm put him on another round of oral antibiotics – a larger dose over three weeks again. We thought that would be it.
But he felt poorly enough to skip two Cross Country practices, which meant not running in the meet on Saturday.
I should have known then.
I didn’t.
Saturday night, after having been on antibiotics for 48 hours, Denver came to me. Being the teenager he is, he didn’t say much, just that he was coughing and it hurt when he coughed. Plus, he hadn’t been coughing before.
He didn’t verbalize how much it hurt, but I could see it all over his face.
The pain.
We put a call into the on-call.
We were given a night’s reprieve based on how he felt, and were told that unless he gets worse, we could call back in the AM and we’d have a bed ready for us when we did.
And so at 7AM this morning we hustled on in.
Got him admitted.
Tried to work out details with the kids and our one vehicle and making sure the kid and I have all we need here to make it through a week.
At least.
I told him I didn’t want to be here again this year.
Contrary teenagers don’t listen.
by Sarah | Sep 3, 2013 | All About Denver, Cystic Fibrosis, Hospital, Special Needs, The Teenager
As I said a few days ago, Denver is taking a mass media class. His first assignment?
A video montage.
It could be about any subject he wanted, anything across the whole world.
He could have picked Star Trek & its many incarnations and his absolute love of them.
He didn’t.
He picked Cystic Fibrosis.
And this is his video (be aware of your volume, it’s a bit loud):
Music: “Breathe” by Nickelback
Images: Many from his or my camera, the Riley logo & CFF logos are gained from the interwebs.
by Sarah | Aug 16, 2013 | All About Denver, Crap, Cystic Fibrosis, Special Needs
It’s the third day of school.
1…2…3.
This morning I made the first sick call of the year.
In fairness, it’s been coming on for over a week.
Denver hasn’t been well.
We were told to keep an eye on it, and we have. For a few days we thought he might be doing better.
Not so much.
He has yet to attend a cross country practice (and he LOVES XC)
After school yesterday the kid slept.
And slept.
And his fever returned to spike up before dropping again.
So he gets to go in for a sick appointment today (it was that or the ER).
Where we go from here is an unknown.
Hopefully it’s home with meds…and not another stay.
Hopefully.
by Sarah | Jun 21, 2013 | All About Denver, All About Erik, All About Kennedy, All About Molly, All of Us, Autism, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
In the land of skinny genes, cystic fibrosis and oral aversions – we’ve got three kids rocking the low end of the growth chart. The words “Failure to Thrive” are bandied about on a regular basis and we are constantly checking little one’s diets to make sure they aren’t just getting calories, but healthy fats and plenty of vitamins and minerals too.
The universal consensus for adding all of these things to help my kids grow & gain weight like they should?
Doctors across the board have pushed us to full-fat Vitamin D milk. It’s all we’ve got in the fridge, and we go through 3-4 gallons a week between the kids and hubby.
Before this FTT world hit my life I knew so very little about milk because I wasn’t allowed to touch the stuff (still can’t) due to an allergy (allergy, not intolerance). These days I’m learning a lot about milk beyond my family’s obsession (seriously, the husband can’t stop drinking it)…because I like to know about what goes into my family’s bodies – especially if it’s meant to promote their health.
One thing that I love learning is how drinking milk is likely to help my own state and community. After all, Indiana is home to over 1200 dairy farms – 97% of which are family owned (and I’ve met some of those families). I was also surprised (and happy) to learn that most milk travels less than 100 miles from the farm to the grocery store.
Of course, the biggest thing I made sure to learn about and know really well is that both plain and flavored milk contain nine essential nutrients, including calcium, potassium, phosphorous, protein, riboflavin, niacin and vitamins A, D and B12. Considering my kids needs, this is of utmost importance. It means that they’re getting vitamins and nutrients that either they refuse to eat, or that their bodies are leeching from them.
And the only factor that matters to me, personally? Indiana – well, it ranks second in the nation for ice cream production. Because, I can only tolerate 1 serving of dairy a day…and you better believe it’s in the form of ice cream.
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*Disclaimer: This post was sponsored by Indiana Dairy. This means I was paid for it, however all opinions are mine and true based on my own experience. You can’t pay me to lie about my family’s health…it’s too important to us all.
by Sarah | Jun 19, 2013 | All About Denver, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Autism, Blogging Life, Cystic Fibrosis, Hospital, Special Needs, Sponsored
With my first child, I never heard of cord blood banking. It was around, but I was young and trying to figure out how I was going to do this whole parenting thing, and it wasn’t a blip on my radar. With my girls, this childbirth thing was old hat, although the larger family freaked me out and I was worried about finances and our small home and all the little details. In both cases I heard of cord blood, I researched it (kind of), and dismissed it. After all, my kids wouldn’t ever be sick. Denver was healthy as a horse (I thought), and my other two children would be the same.
Hindsight.
Now that I have two kids with Cystic Fibrosis, a very young niece with cancer, and have a much broader view of the world thanks to blogging, I wish I’d made that choice.
Through cord blood banking, you can collect and preserve potentially lifesaving stem cells, and doing so could one day save the life of your child or a blood relative. You can bank even more stem cells by collecting them from 2 usable sources of stem cell-rich blood: the umbilical cord and the placenta. This service is called Placental and Cord Blood Banking, and it’s available only from LifebankUSA. Whether you choose Placental and Cord Blood Banking or Cord Blood Banking alone, there are many important reasons to choose LifebankUSA.
There’s only one opportunity to save your baby’s stem cells for the future…
As an expectant parent, your baby’s health means everything. Right now, he or she is protected in the womb and will soon enter the world. There is a lot to think about and prepare for, but an invaluable step you can take when your child is born is to preserve his/her stem-cell rich cord and placenta blood The ability of stem cells to save lives via cord blood banking has proven successful for replacing abnormal or diseased cells, and treating life-threatening blood disorders such as leukemia, lymphoma, and myeloma. In fact, since 1988 stem cell transplants have been used to treat some 80 diseases. No, Cystic Fibrosis isn’t on that list – but I imagine one day it will be.
I’m done having children, fate and biology means my body is no longer able to have them, but if I could, I’d bank the blood. I recommend it to those I know debating it. Sure, the odds of illness might be small – but then as I’ve learned, you just never know.
Today, LifeBankUSA is having a contest, and you can win a SpaFinder Gift Card worth $200. Just head over to Facebook to enter the contest. It’s super easy!! (All those links, and the top image on the page will take you to the contest!)
And seriously, consider cord banking. It’s worth it.
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ABOUT LIFEBANKUSA
As the only company that offers cord blood, placenta blood and tissue banking — and the first to release placenta-derived stem cells for a successful transplant — New Jersey-based LifebankUSA is a technological leader that is pioneering key medical innovations in the field. Owned by the Celgene Corporation, a world-class biopharmaceutical company, LifebankUSA also operates a robust donation program and collects cells from anywhere in the US for use primarily in advancing medical research.
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*Disclaimer: This post was sponsored by LifebankUSA. I was paid for this post, but all opinions are my own heartfelt truth. I never take my children’s health for granted, and you can’t pay me to lie about it.
The hospital the kids go to for their CF is a teaching hospital. It always has been.
