Can someone help with next steps...scared mom here

[humphrey711]

Hi All,
Please forgive my frequent posting lately. My 8yr old just came home from the hospital this afternoon. Here is a timeline of events up to this point. PFTs have slowly declined over the last few months. Culture shows an abundance of staph and she is put on Augmentin. Does nothing and PFTs do not go up. CT scan shows infection, loss of elasticity, and mucus build up in the lung tissue. I am told the CT scan actually looks better than PFTs would indicate.

Last Friday she goes in for a PICC and bronch. Bronch shows normal lungs. The doctor who did it said her lungs look great. No inflammation, no mucus. Pretty normal lungs. Bronch can only go so far so they do the saline wash and suck out the fluid. They expect to find some hard pieces of mucus from the lower lung tissue but there is none. So far the fluid is only growing the normal staph. I was expecting pseudonomas but nothing yet. I have been told that we could wait up to six weeks for something to show up on the culture.

Over the weekend in the hospital she had increased chest pt/vest with nebs and started IV antibiotics. Still not coughing up anything. Lungs sound nice and clear. She goes for follow-up next week. Our hope is the PFTs go up. They may not be back to baseline but there should be some serious increase.

So why am I scared? What happens if, after all of this, her PFTs do not go up? The nurse practitioner I spoke with today said she doesn't know and would have to wait to speak with doctor. This is the part that scares me. Has anyone been in this situation? What comes next? Do they remove part of the lung to get rid of the infection? I have heard of that happening.

Can you tell I am freaking out a bit?

 

[Aboveallislove]

Hey mom,
i am so sorry...you've been through the wringer. Like you I always extrapolate and think of stuff I've heard, but those with parts of lungs removed have severe damage there and it is ongoing for quite some time...so I don't think that's something to even think about. Hopefully with all this they will go up. Wondering if creasing exercise might also help. Good luck...
Hugs and prayers
love

 

[Ratatosk]

I can understand your confusion. If the bronch didn't find any mucus... then there shouldn't be any sign of infection and they IMO shouldn't be discussing removing a portion of the lung.... Those I know who've had portions of their lung or a lung removed --- it's usually been from a major infection, which caused collapse and necrotized/hardened areas. And it was usually a last ditch effort -- after bronchs in which saline, even pulmozyme was used to try and loosen up areas, and after long term IV therapy.

When they've run cultures have the reports indicated what the bug (staph) is sensitive to? We always get a report indicating ds has cultured steno maltophilia -- it's resistant to a certain antibiotic, sensitive to another one....

I should also tell you... DS is 12 and still hasn't mastered pfts, so his doctor relies on culture report, lung scans and listening to determine if there are issues. DS has never ever coughed up anything thing, we still rely on throat cultures because there isn't anything for him to cough up and I believe there are several people on this site, adults included who have similar issues.

A couple years ago, ds' lung scan showed some issues, so our CF doctor told us to not only continue vesting 3 times a day, but to add chest physiotherapy to those areas of concern. And if there were still issues when we came back in a few months for a recheck, then they'd look at IV abx and hospital stay. Fortunately the lung scan and cultures came back clear that next time.

With your child, it could be an issue with inflammation, allergies.... Could it be her sinuses? I believe you've indicated your daughter vests once a day? I again would encourage you to increase treatments. While you're waiting for answers, I'd encourage you to increase CPT/Vesting, encourage huff coughing --- check the vest settings.... Are you doing Minnesota protocol-- varying pressure and speed (HZ)? When ds was a baby and developed bronchitis, we threw in a few mini cpt sessions and we continue to do so today. When ds gets a cold and is sitting with us watching tv, one of us will do a mini cpt session, just a few minutes, targeting the areas which may be problematic.

 

[humphrey711]

Thanks for the responses. They haven't discussed removing parts of her lungs. My imagination is running wild. We will definitely be increasing her vest treatments along with some additional cardio. When we really look at her exercise level we realized she isn't as active as we thought. It will help me with my exercise goals too.

What are the Minnesota settings? I have never heard of that.

 

[Ratatosk]

When we first got our vest, the rep just had us do one setting for 10-15 minutes. And then I spoke with a couple local moms who laughed about their kids falling asleep while the vest speed was cranked up to 20. We'd been doing 10 -12 hz with a pressure of 6. So we gradually increased the pressure, time, speed and added cough breaks.

Basically the settings are varied to hit different portions of the lungs, different speeds, pressure to bring up more mucus... I believe U of MN developed the protocol. I did a quick search online of the vest and Minnesota protocol and found instructions on the Cincinnati's Children's hospital site. http://www.cincinnatichildrens.org/health/v/minnesota-protocol/

And I've mentioned in the past that we do 3, 30 minute treatments a day. We worked up to this time. When ds was a baby we did 3 - 4 20 minute cpt sessions, so with his vest, we started off with CPT in the morning (he always slept thru CPT or fell asleep during it), then vest afterschool and before bed. We worked up to 30 minutes, 3 times a day. And sometimes we still do CPT or throw in an extra vest treatment if he has a cold. When he was in the hospital for a few bowel obstruction a few years ago and the doctor decided since he was there he may as well do a clean out (IV abx), he had CPT/Vest treatments every 4 hours.

 

[Rebjane]

Sometimes, people with CF just need a "tune-up". A more aggressive treatment to knock back the bacteria and mobilize their secretions. Hopefully the IV antibiotics do their job. Increasing CPT or Vest is good and can keep things at bay.

I too tend to think of the worst case scenario, it's just my nature. However, I have learned to try to chill a little bit because the kiddos pick up on your vibe. Sometimes you just need a good cry, rant whatever(in private) and then back to usual calm self with the kiddo. Sounds crazy right now; but make sure you take a little time for yourself(yes it's ok) a glass of wine, a run, coffee with a friend(whatever makes you happy).. Then it's easier to deal with reality.

CF Exacerbations are stressful. The meds, the extra time, the hospital..I usually go on auto-pilot during..then feel like a flat balloon when my daughter is back to her baseline and doing great.

Remember kids CAN get back to baseline. It's figuring out what works for them to get them there. Some of CF is trial and error, and also having a responsive, aggressive CF team.

Hope things get better and you can vent here anytime.