SurvivingInfidelity.com^®

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.

(((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...

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

(((ssm & bunt)))

(((ssm and bunt)))

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

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

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

Hugs,

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

(((ssm)))

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.

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

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

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

(((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.

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.

(((ssm and Bunt)))

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

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

(((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.

He is so cute!!!!

I love the pic with him and Jesus.

Many prayers to you and little bunt.

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.

((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.

(((SSM & Bunt))))