Advice for Possible Hospital Admission for 3 year old

[CCyr]

Hi everyone, I was hoping you could give me some advice about hospitalizations.

Some background: my son is 3 and has been on the "healthier" end of the CF spectrum so far (DDF508). He developed a slight cough about 6 weeks ago but the CF clinic wasn't too worried at the time. 2 weeks ago it was still present and he had a partial blockage. They started him on laxatives and sick plan and a new antibiotic (augmentin). Since then the cough has gotten much worse, sounds very junky, and we started steroids. Nothing has worked so far. Went to the CF clinic yesterday for a chest X ray (which showed no pneumonia) and a sick visit. The new plan is to take him off augmentin and try bactrim instead. He cultures both s. aureus and pseudomonas, both of which are sensitive to antibiotics, however the pseudo has still been hanging around on and off for over a year even with TOBI + azithromycin. Aside from the cough my son is energetic and happy.

So we have drawn a line in the sand for Tuesday, when he will go back to the clinic and be admitted if his cough is still present, but obviously we're hoping the bactrim will work before then.

We've never been admitted before so I was hoping someone could let me know what to expect. What should we bring? What can we do so our boisterous and energetic boy is entertained? Is this a normal circumstance for being admitted (no pneumonia, happy child, just a lingering junky cough that won't go away)? I'd really appreciate any advice you have! Thank you!

 

[Beccamom]

I have a 14 year old so it's been a long time since I had to stay at the hospital with a little one. I hope you didn't have to be admitted. Best wishes.

 

[alannae]

We are currently in a similar situation and expect to be doing a bronchoscopy and possible admission this Friday. Waiting to hear back from Izzy's doc to be sure.

She will be 4 in February (DDF508). She regularly cultures H. Flu but hasn't the past two cultures. She cultured pseudomonas once when she was about 9 months old. We did about 8 months of TOBI (one month on, one month off) and she hasn't cultured it again. She has been having an ocaissional (but daily) wet/junky, productive cough since the beginning of September (shortly after starting daycare). She had a chest xray last week which was definitely worse looking that her annual xray taken over the summer. CF doc was able to hear a couple crackles during our visit last week. She's not coughing a lot, no fever. At a visit to the pediatrician in September, I was told that her breathing sounded 'harsh' but no crackles or any other specific sounds. She has been on two rounds of Augmentin (back to back) and is on another round currently since the cough continues.

She is completely not bothered by any of it. She is active and busy. Being in the hospital is not going to be fun.

I did come across this blog post that has some ideas. I found it on another post in this forum.
http://jemappelleroo.blogspot.com/2012/02/100-tips-to-survive-hospital.html

I started making a list of things to bring. I bought some activities like coloring books and stickers. I'll bring a ball (she loves to play catch), movies, laptop, DS, maybe buy a new lego kit...

I'd love to hear about infection control advice for people coming in and out of the room including cleaning staff. I think I'd like to clean the room myself while we are there. We are at a teaching hospital, so there are residents and RTs in training etc. Any thoughts?

 

[SydneySquad]

I am a little late responding to your post but I will still respond just in case I can help! We have been there many times with out little girl, almost 6 yrs old now with ddF508. Your son sounds a lot like my daughter and her symptoms. My daughter was first hospitalized at 18 months for 3 weeks…and I'm not gonna lie, that was a nightmare. However, it was mostly because of her age and she couldn't understand the situation. She has been hospitalized 5 times since then and we just bring tons of different activities. Some nurses joke and say,"Oh, Sydney's moving in again!" We even bring a rug so that she can get out of the bed to play games on the floor. We also bring different snacks and drinks that we know she likes because the hospital food gets old after a couple days.

To ease your mind a bit about admitting a child who doesn't seem "sick". We have struggled with that so many times too. Only 2 of her hospitalizations have been emergency situations and the others were all tune ups. If your son has pseudomonas, I would say it is definitely worth a shot to do a tune-up and don't feel guilty. IV TOBI was what finally kicked pseudomonas for Sydney and she hasn't tested positive again for a couple years now. Hope you and your family are doing well and hang in there if you are in the hospital!

 

[CCyr]

Hi everyone! Thanks so much for your words of wisdom!! It's really interesting to me that others have a similar experience- I always assumed IV antibiotics were for when he was very sick. My CF Clinic doesn't really do "tune ups" unless the patients are older because they try to keep them out of the hospital as often as they can. Good to know that this situation is common!

He went in to the clinic yesterday, the bactrim lessened his cough but it was definitely still present so they decided as a last resort before hospitalization they would start Levaquin for 2 weeks. I know this is a pretty heavy duty antibiotic so if anyone has used this before with a young child I'd love to hear your experiences.

Thanks again for your helpful advice!