Long night.............Yawn.....

fourkidsmom

New member
Last night was a terrible night, our 5 year old son was up coughing, wheezing, having a hard time breathing ALL night. ug....... Everytime you think things are going good we fall of the (broken) wagon again, it is soooooo frustrating. I know we just need to go day by day, but it really sucks! I had to call his preschool and tell them he wouldn't be there today, she could hear him coughing in the background, he <u>hates</u> to miss school, but he can't go like this. I hear him struggle to breath last night, because when he gets like this we have him sleep in between us so I can hear his every breath. I think to myself WHY? WHY does this little child that has never hurt anyone and never had an easy time have to go thru so much? Is it something we did, I know you can't think that way but you sometimes wonder why he has to suffer so much and he has the best attitude. He is doing a breathing treatment with his vest right now and , of course the hose just came undone and so I go to fix it and he says to me smiling "Who loves you today?" That makes everyday worth it. So now I wonder do I call the doctor today or wait a day? Tomorrow is friday and they close earlier, and then we have the weekend. I am always scared to take him like this because I am afraid they will keep him. He just had a clean out in November and a small one in December. BUT he is culturing staph, pseudo and cepecia (the worst type of cepecia) So we need to be more agressive?? Our doctor is 2 hours one way, I have 3 other kids to arrange around as well and no one to help me out today. Dad has to work and grandma is leaving town and doesn't know about him yet, she'll worry all day.

He has been fine up till yesterday, I noticed the dark circle appearing under his eyes, then a little bit of clear runny nose. He didn't eat much, activity wise was fine. One thing I have noticed with him is if the weather is still cool and I still dress him warmly, if he goes outside (like he did 2 days ago and played about 10 minutes) then he gets like this, same way if he falls asleep on the floor, we have learned to get him up off the floor because he gets like this, I don't think just it's coincidence because it has happened several times. I had to give him what I call the emergency aeorsal last night (2 times), racepinephrine, they used to not let us get this by prescription until we had to take him to the emergency room 4 times when he gets like this and they give him the medicine and it helps open up his airways.

What would you guys do? He is actually not coughing right now. It is more a night thing, I know if they don't have me come into the doctor, they will say up his normal 4 breathing treatments a day to every 3 hours. It is a hard choice. Quite seriously I need a little sleep before I try and drive 2 hours to the doctor. He is doing better now, but will he be the same tonight and then we are coming into the weekend? Should I give him another night to see what happens? I actually got on here last night at about 2 a.m. and then he was having a hard time breathing so I got off, I noticed Allie was on and about 5 other people. I din't get to post anything though. Sorry to ramble, just needed to vent.

Fourkidsmpm </i></b>
 

anonymous

New member
Hi -

We had a rough night also with coughing and repeated treatments. Does he have asthma? This time of year is hard for asthmatics. Also, you mentioned he gets this way after going outside (outside allergens) and after he is on the floor (dust mites) - could be allergy/asthma.

Samantha is having a lot of coughing in the last couple of days- seems to stem from her asthma more than CF. They started her on Prednisone (steroid) which seems to be helping a little. Also albuterol every four hours.

With all that he cultures and his symptoms I would be aggressive, but maybe you can ask about the asthma possibility before starting antibiotics or IV's again. Good luck,

Maria (mom to Sami. three years old w/cf)
 

anonymous

New member
Also, the dark circles and clear runny nose also point to allergy/asthma. Does he take zyrtec (antihistamine)? That might also help.

Asthmatics also have worse symptoms at night.

Sorry if I seem pushy, but it took us a long time to distinguish between an asthma episode and a CF exasberation, so if I can help someone else, . . .

Maria
 

anonymous

New member
Can you call and do a consult over the phone?? I agree it sounds like asthma, too. I'd think though having to do the epi tx, they'll want to know. Of course, we only ever get that in the ER. I agree with the other posters about it maybe being allergy/asthma related in which case they maybe could just send you some pred to try?? Good luck.
Dawn
 

anonymous

New member
I would definetly call the doc. We always call as soon as we notice any cough or cold symptoms in our son who is 9- and it clears him up pretty fast. He hardly ever coughs. But I notice at night certain times of the year he'll be really stuffy or have a real runny nose - I always give him some antihistimine (the purple good tasting stuff!) and that always seems to help him sleep and breath good. Last night we got the Vest - he really liked that! Hopefully that excitment will stay for awhile. I know what you mean about them being so sweet. After the nurse left last night he asked me if me and Dad were mad that he had cf. I told him NO if was our fault and NOTHING that he did! Then he asked if he was going to die early - that about killed me. I told him none of us have a guarantee how long we will live - but if he always does his treatments and takes care of himself he will do fine. I told him my healthy 16 yr old cousin drowned and they thought he would live to be old. This was the 1st time he really asked much about cf. He has such a positive attitude and a wonderful personality - I just don't want him to worry about things!!

Mother of 9yr old boy w cf
 

fourkidsmom

New member
Maria: Thanks for your post. Thats makes a lot of sense to me. I will call the doctor and see what they think, he's not running any fever. I have often wondered if he has asthma--- but I don't want to admit to the possibly. He actually is not coughing 1/2 as much now. So that points even more to allergy/asthma.

Thanks to everyone who posted, it is nice to know we are not alone.

Fourkidsmom
 

anonymous

New member
HI, did the doc call you back yet? Just curious what they said. How is his appetite? Troy always says, when the appetite is down, that is a huge indicator that he feels like crap. Its so hard with a child because he just doesnt know any better. They could feel like crap but not say anything.

I did a vision screening once at a school and I was amazed at how little these kids could see. You know what, they didnt know any different. Sure, if you cant see the board, you sit closer, but what if you can see the board, you just cant see the bird on the ledge out the window. Noone ever told them they should be able to see it and they never mention it because they think everyone cant see it.

Just an analogy, sorry, your post reminded me of it. I feel like crap today (a bit of the flu) and I just keep wondering if Kayla has felt like this and just didnt know why she fussy, just that she wasnt herself. I just feel for you being a parent and also having to be a mind reader.

Let us know, I will check back later to see how he is doing!

Karen ` Wife to Troy
 

anonymous

New member
I don't have much to add but I just wanted to say I would call the doc. Each kid is different but my daughter, when she is sick, tends to cough more at night, maybe cause she's lying down. I don't know. One thing i fell that has helped my daughter is pulmicort nebs, I feel like alot of her coughing when she is sick is related to inflammation.

I'm sorry you're having a tough time. Let us know how things go.

Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
 

anonymous

New member
Karen-
I'm so glad to see that you have posted again. I see that you did your blog again. I totally agree with what you wrote. Often times I think that this is such a great way to let your feelings out and rant and rave if you need to. Sometimes I just wish people weren't quite so rude and just listen when someone needs to talk. I just want you to know that I have enjoyed listening to your life story and I DO feel for you and your beautiful family - (as I tear up). I loved seeing the pictures you had on their before. I just wanted to let you know that there are some strangers out there that are praying and feeling for you and your family. I had a real heart to heart w my 9 yr old last night about cf and explained to him that there are alot of people worse off. (trying to make him feel better)
I'm glad you and Allie come here to talk.

Mother of 9yr old boy wcf
 

anonymous

New member
Hi - I agree with all the advice given. My son who is 8 has also been having some tough nights lately - RAD/Asthma. Is you son on pulmicort or Advair? Also singulair might be helpful. Jason has always had these events at night mostly related to allergens or cool and damp weather. Originally when he was younger, he was on pulmicort with his Albuterol, singulair, claritan, and flonase along with the regular pulmozyme and TOBI every other month. We also tried flovent before pulmicort. When those weren't enough and the cough and tightness would continue into the day, we would add an oral steroid. Now he is on advair and flonase and it seems to do the trick. The advair has made a huge difference for him. We have had some times where we have to add an antihistamine or an oral steroid if he is really struggling. I do hope he has gotten some relief and it isn't an infection brewing from the junk he grows. Good luck and let us know.

Jo Ann - sorry forgot to sign in
 

fourkidsmom

New member
Well the doctor called back and they are putting him on oraphred (oral) for 5 days, they said since he is already on the pulmicort 2 times a day- that should also help with inflammation. They also told me to up the breathing treatments, his normal is 4 a day so if he seems to need more do the albuterol treatments along with his normal 2 albuterol treatments a day. He is not on flonase right now because he is on another steriod for the nose/sinuses since his sinus sugery. I just got done with a breathing treatment and he is now coughing more. I have a feeling it will be another long night. They are looking at possibly of asthma/allergies. They will look into at next doctor appointment.

Thanks for all your replies!

Fourkidsmom
 

anonymous

New member
I'm glad you were able to get a quick response from the doctor. Sami is on day two of orapred and she is definitely coughing less than before. One good side effect of the drug - increased hunger! I hope your son is feeling better soon.

Maria

One pattern that my husband and I know see - since Sami's birth, every year at this time (March/April) she spent time in the hospital on IV's. Now we realize that it was probably more asthma attacks than infections. Live and learn. . .
 

anonymous

New member
Maria- I hope Sami gets over her cough soon too. I believe you are right it is asthma. I sure hope his hunger picks up.

fourkidsmom- sorry not logged in
 
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