Our old CF Commercial that plays on MCTV. Still working on this years.

Friday, July 30, 2010

Update on Everyone and CF Question

Lil' Chris' antibiotic ended on Monday and he STILL has a lil' cough! He doesn't cough all the time, just once in a while or when he is crying. Problem is...it should be gone or at least not still junky sounding. I knew I should have asked for the usual 21 days instead of 14 days of the Augmentin!! Lesson learned...bad part, is that his LUNGS are the ones suffering;( I was debating all week whether to call the clinic or not, but I wasn't sure b/c like I said...it's only once in awhile. Well, today I took Ayla to the pediatrician and I had to take Lil' Chris with me unfortunately(we try to keep him out of the dr.'s office as much as possible, but my hubby had to work and the sitter was busy). Anyways, their dr. heard him cough and she thought it was junky sounding too. I felt better when she said that, b/c now I know it's not just me! She suggested to keep an eye on him this weekend and if it's not better by Monday to give the clinic a call. So that is what I'm going to do. Do any other CF mom or dad's out there have any advice?? Has this happened to your child before?? What did you do?? How about any adult CFers??

I got a call today from the Dietitian at the clinic and she suggested to continue doing 1 scandishake a day and also add this new juice. I forget what it is called, but it comes in apple so I'm hoping that he will like it. He HATED the Breeze juices. I'll let you know when we get our order in. BTW, we got approved for BCMH again for another year!!! YEA!!! I don't know what we would do without this secondary insurance for him! It pays for EVERYTHING!! His enzymes alone cost $1 for each pill, and he takes 3 with every meal and snack, so that's like $15 EVERY DAY!! We got approved for "formula" again too....that means his scandishakes and this new juice thing are covered. Thank God for BCMH!!

Ayla's visit went great!! She unfortunately had to get 2 shots in her legs;( She's a fighter though! She ripped the bandaide off as soon as she stood up! lol

My ankle is still the same....wish I had better news. It is still swollen around the ankle bone and I can't move it from side to side. At least I can walk ok with it now:) I've noticed that I can't walk in grass...apparently it's not flat. I never realized how uneven grass was before!! I DEFINITELY can't walk up a hill....found that out the hard way!! LOL

As for Lil' Chris' cousin, Nathan, who was recently diagnosed with Leukemia...he is home and doing well! He had to go get his chemo today and some shots, but is home now and I hear that he is eating my sister-in-law out of house and home:) So glad he is gaining back the weight that he had lost before his diagnosis! The steroids apparently make him hungry and he is loving the Danimals that Lil' Chris loves too:) I wish they lived closer. I know that this is going to give them a special bond as they grow old together....and I KNOW they WILL grow OLD together;-)

Please continue to pray for Nathan and Lil' Chris.



Aspiemom said...

Hey, M, it sounds like he needed the Augmentin for longer or maybe a different abx. Hope he's better soon! You're a good mom for staying on top of it.

Leslie said...

I would definitely call on Monday if he still sounds junky. Our clinic always wants us to call right away because things can get worse quickly. How is he breathing? Does he seem to be struggling at all? Back in the fall when Ashley had pneumonia in both lungs she sounded junky and was first admitted into the hospital because her pulse ox was low, which you may want checked. Is Lil Chris still not doing breathing treatments. We truly feel that is one of the best things in the world for Ashley. She hardly has a cough and when she does we will increase her treatments to 3-4 times a day and usually within a matter of a couple of days her cough is gone. She really has hardly ever been on antibiotics. Just something to throw out there that you may want to talk to you CF Dr. more about. I'll be praying for him and that things will get better quickly!

Oma & Opa said...

First let me say...That's Oma'a girl, Ayla!! Tear those bandaids off ASAP! haha
Second as for Lil Chris' cough...why wait? If you feel concerned why not call now? Get better Bubby!
Last as for you M...get on that phone and demand to have a either a CT scan or MRI of your ankle! No x-rays, they don't show enough. Something is not right and you should not play with this any longer. If your insurance doesn't pay for either of these tests, let me know and we'll see how we can help get it paid for. It is sooo important.
Lots of love, hugs & kisses to you all.

Auntie Steph said...

Ayla & Lincoln are so much alike! lol
Sorry to hear Lil Chris still has that cough! Praying he gets rid of it soon!
Nathan went for his chemo yesterday, he did well, & slept quite a bit after we came home! One more chemo treatment for this round, then another bone marrow & spinal tap test. After which we will find out about the next round of treatments! We will be glad to get him off these steroids!!! His lil face and belly are getting big and puffy!

Kati said...

I have been following your blog for a while and your little man is so cute. My son Ben is 2 1/2 and has CF and short gut (from meconium ileus). I read Leslie's comment about the breathing treatments and I totally agree they help on so many levels. Ben has only been on oral Cipro twice along with his inhaled TOBI every other month to keep PA at bay. He has never had to be on any other oral antibiotics. Currently we have had two throat cultures in a row with no PA so if we don't culture PA again in the September clinic visit we will get to stop TOBI. Breathing treatments have kept his lungs so clear and coughs away. I think it also has helped at preventing him from getting colds etc. He has only had a couple in his 2 1/2 years and they were knocked out quick. Ben currently inhales albuterol twice a day, hypertonic saline 4% twice a day, pulmozyme once a day and TOBI twice a day (off this month. Ben uses the vest so doing the breathing treatments while using the vest is great because they can be done at the same time (not with TOBI) so not much extra time is being used in their day. Hope you can get his cough resolved. Best of wishes to you all! Sending positive thoughts your way!

Anonymous said...

Hi Michelle, sorry your ankle is not getting better quicker and I agree that you should maybe have it seen to again. If Lil'chris' cough is nagging at you - have it seen to. Carmen has always been a *cougher* and when she is not to well it gets worse....so hang in there. do what you as mum think best. Ayla my girl - you show them...shots and all..lol. hope all of you get better sooner than later....much love charm xxxxxx