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User Topic: Update on my Bunt
stupidstupidme
♀ Member
Member # 11888
Default  Posted: 9:10 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

So we finished up a two week stint at Hopkins yesterday. He was discharged, and went home with his dad. He feels great, sounds clear (to the docs stethoscopes), PFTs are great (lung function)...

BUT... this time the IV meds and Bronchoscopy didn't clear the mucus totally. His baseline has always been no cough. We haven't achieved that for several months now, and I expected that the inpatient stay would do the trick. It didn't. In talking to the doc yesterday at discharge, we decided to keep him on some oral antibiotics for another month, but with an understanding that at this point this lingering cough and mucus may just be his new baseline.

I'm not happy about it. He's only 7. I realize it isn't so horrible, and it doesn't indicate anything major, but with the news and the 10 yr old girl double lung transplant, all the kids I've seen over the last two weeks, then seeing signs of progression of the disease in my own child... hard couple weeks, to say the least.

I did come home and relax yesterday. Took a hot bath, had two glasses of wine, put cleaned my room, changed bed sheets, and got the first good night's sleep in weeks. I feel a little better today, but still teary. It seems to take more of a toll on me, both physically and emotionally these days. Not to mention I'm doing it alone. He had some visitors, but most of my family didn't even check in.

Hats off to my daughter though... she was a big help, and so was my roommate. My other great friends checked in, too, and some people that I'm not even very close to. That all meant a LOT, but I have to say that my family disappointed me.

We go back on the 17th for a follow up, and will discuss treatment options, etc... and maybe make some changes. I just don't like this.... not at all.


Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength
August Wilson

Posts: 19714 | Registered: Aug 2006
hill
Member
Member # 12166
Default  Posted: 10:17 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((SSM)))

I'm sorry to hear of this little bump, but overall it does sound like Bunt is doing great! Hang in there, you're a great Mama!

I'm not on here too much anymore, but I think of you and Bunt often. I am close to CF research fundraising...


Posts: 3151 | Registered: Sep 2006
nowiknow23
♀ Guide
Member # 33226
Default  Posted: 10:18 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((((ssm & bunt)))))


You can call me NIK

"Sometimes it takes a good fall to know where you really stand."
-Hayley Williams


Posts: 24748 | Registered: Aug 2011
jo2love
♀ Moderator
Member # 31528
Default  Posted: 10:19 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((ssm & bunt)))

Posts: 34433 | Registered: Mar 2011
deeplysad
♀ Member
Member # 16590
Default  Posted: 10:27 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((ssm and bunt)))

What Bunt has going for him is an abundance of love from his amazing Mom.


Me: BW - I'm much too young to feel this damn old
Him: FWH - Midlife crisis with a pathetic porn wannabe
D-Day: August 2004; Lots of false R until February 2005.

It takes all kinds of kinds....Miranda Lambert


Posts: 3223 | Registered: Oct 2007 | From: So Calif
Kajem
♀ Member
Member # 36134
Default  Posted: 10:33 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

((((((ssm))))) (((((bunt))))))

For you ssm, I have this hanging, I keep it close because my family continuously disappoints me.

Hugs,


I trust you is a better compliment than I love you, because you may not trust the person you love, but you can always love the person you trust. - Unknown
Relationships are like sharing a book, it doesn't work if you're not on the same page.

Posts: 4991 | Registered: Jul 2012 | From: Florida
cryingdaily
♀ Member
Member # 7276
Default  Posted: 10:48 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

Glad he's been discharged. I'm sorry it's so tough for you both.

(((ssm)))


Me: BS 48
Him: Doesn't matter any more.
The Royal Court, formerly known as the Princess Posse:
DD31 - Belle
DD23 - Xena
GD10 - Jasmine
GD8 - Ariel
GD Born 9/4/12 - Tink
GS Born 6/23/2014 - Little Prince

Posts: 14398 | Registered: Jun 2005 | From: Massachusetts
stupidstupidme
♀ Member
Member # 11888
Default  Posted: 10:50 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

Thanks. I am debating sending an email to my family. A lot of them are going to be together in our family place for the holiday, and I highly doubt I will go. I don't think I have it in me to re-pack and take a six hour trip right now, after the last two weeks. I'm emotionally and physically drained.

I don't want to lash out at them, but I do want to make it clear that i am disappointed, and hurt. My family is really close, and this hospitalization and also fundraising in May - they all just totally ignored. It was my friends that came through.


Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength
August Wilson

Posts: 19714 | Registered: Aug 2006
ajsmom
♀ Member
Member # 17460
Default  Posted: 10:51 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

Hugs, my friend.

I've watched friends deal with this insidious disease with their son, and small victories are huge in the CF world.

I know from their experience that the love and support that others give is critical to healing from the many hospitalizations and I'm so glad to hear your DD and friends were there for you and the Bunt.

I'll specifically pray that the cough and mucus are not his new baseline and will continue to hold you up in prayer as well.

On a side note, a local TV station ran a story about a couple's journey with CF as the woman in the story lives with it. During one of their fundraisers, their team wore t-shirts that said "FU-CF" which not only made me laugh but made me think of you.

Hang in there.

AJ's MOM


Fidelity isn't a feeling...it's a choice.

"Truth has no special time of its own. Its hour is now - always." - Albert Schweitzer
____________________________________________
Me: BW - Him: 200+ # tumor removed 7/09
DS - 31 - Yikes!


Posts: 21039 | Registered: Dec 2007 | From: Been Through Hell...On My Way Back
metamorphisis
♀ Administrator
Member # 12041
Default  Posted: 11:32 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

SSM.. I am upset for you
I would feel exactly the same way. Not all of my siblings are involved in my kids life very much.. some of them live pretty far away and we aren't getting together as much as we used to. But I sure as hell would expect a phone call just to see how things were going. It's not that hard.

Sending strength your way. It's been a rough go for you and I hope you find some peace today



“We don't see things as they are; we see them as we are.”... Anais Nin

Posts: 44219 | Registered: Sep 2006
simplydevastated
♀ Member
Member # 25001
Default  Posted: 11:35 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

Oh, ssm, I'm so sorry for you and bunt. Sending plenty of (((HUGS))) and positive healing thoughts your way.


Me - BS, 39 (I'm not old...I'm vintage)
Two Wonderful children - DS10, DD7
Married, for now... (4+ D-Day - listed in profile.)

Posts: 5854 | Registered: Jul 2009 | From: In the darkest depths of hell!
tushnurse
♀ Member
Member # 21101
Default  Posted: 11:47 AM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((SSM)))

What a stressful time for you. CF is such a bastard of a disease. You will have a special spot in heaven, that I am sure.

Take some time to love yourself. Wishing you and the Bunt much peace and easy breathing.


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 8084 | Registered: Oct 2008 | From: St. Louis
stupidstupidme
♀ Member
Member # 11888
Default  Posted: 1:00 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

Here are some of the pics I got. The sleeping one is just after the Bronchoscopy, one in the gym with PT (he made the basket), one in the original dome building of Hopkins with Jesus (love this one), one with my DD's ex BF, who came to see him twice :), and one with the clowns and my DD.




Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength
August Wilson

Posts: 19714 | Registered: Aug 2006
Crescita
♀ Member
Member # 32616
Default  Posted: 1:06 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((ssm and Bunt)))

He certainly is a cutie, but I suspect he isn't a fan of clowns.


Posts: 3321 | Registered: Jun 2011 | From: The Valley of the Sun
stupidstupidme
♀ Member
Member # 11888
Default  Posted: 1:20 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

He isn't a fan of mommy trying to get him to smile for pics...


Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength
August Wilson

Posts: 19714 | Registered: Aug 2006
Holly-Isis
♀ Member
Member # 13447
Default  Posted: 1:49 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((SSM)))
There is hope. You're seeing the bad cases because you're at the hospital.

My friend has two daughters with CF. both now M and in their 20's. One has 70% function in her lungs but they're adjusting her meds and she's getting better. The younger daughter had a lung transplant a few years ago. She's at 110%.

His baseline can always change.

There can be good news. I know as a mother we worry, especially when the protection of our children is out of our hands. But he's in one of the best hospitals in the country for dealing with it. The same one both of the young ladies I mentioned go to. He's got the best chance, he's got a mom and a loving support system.


"Being in love" first moved them to promise fidelity: this quieter love enables them to keep the promise. *CS Lewis*

Posts: 11098 | Registered: Jan 2007 | From: Just a fool in limbo
Faithful w/Love
♀ Member
Member # 33128
Default  Posted: 3:35 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

He is so cute!!!!

I love the pic with him and Jesus.

Many prayers to you and little bunt.


BS(ME)40 WH(HIM)38
DD 19 and DS 15
Separated Aug 2012
Moved back home Oct 31 2013
False R. Still Lying.
Will be divorcing soon!
"You never know how strong you are until being strong is the only choice you have"!

Posts: 2661 | Registered: Aug 2011
lynnm1947
♀ Member
Member # 15300
Default  Posted: 3:48 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

I can understand your trepidation, SSM. We always worry about our kids, but CF parents have more to worry about. I have friends with two beautiful CF daughters. The elder just graduated from high school and is n her way to uni in the fall. CF kids really do have more options these days. Loved the photos, BTW.


Age: 64..ummmmmmm, no...............65....no...oh, hell born in 1947. You figure it out!

"I could have missed the pain, but I would have had to miss the dance." Garth Brooks


Posts: 7163 | Registered: Jul 2007 | From: Toronto, Canada
StrongerOne
♀ Member
Member # 36915
Default  Posted: 5:16 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage


((SSM and Bunt))

It's so hard when our kids have to suffer like that! And they just want to be regular kids...

Glad to hear your baby is discharged. Childrens hospitals, esp the ones linked to unis, are really awesome nowadays.

Have you done make a wish for your bunt? My son did a few years ago -- got a massive lego kit that not even grandma could afford It made him feel really good. Still keeps his make a wish t shirt, even tho he's a giant teenager now!

I'm keeping you and your boy in my thoughts, SSM.


DDay Feb 2011.
In R.

Posts: 846 | Registered: Sep 2012
Dreamboat
♀ Member
Member # 10506
Default  Posted: 5:55 PM, July 2nd (Tuesday), 2013View ProfileEdit MessagePrivate MessageHomepage

(((SSM & Bunt))))


And it's hard to dance with a devil on your back
So shake him off
-- Shake It Out, Florence And The Machine

Posts: 17605 | Registered: Apr 2006 | From: A better place :)
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