NO GENETICS! and CLINICAL TRIALS!

Yup, we haven't at any point in the last 3 years had any genetics testing done. This you may ask is impossible with CF being a genetic disease. Well, apparently all those times I asked about it, they lied to me! So, now the new clinic has to do all this testing that should have been done 3 years ago. Oh well, maybe now we'll figure out his genetic markers and maybe we'll get into some clinical trials and help do our part to find a cure! I really believe everyone should do clinical trials! This way we'll have a faster way at finding drugs to help the disease and possibly a cure at some point in the near future! I hope that we'll figure this out and get a chance to help do our part.

Mad at Video Blogs

I am totally livid at trying to do a video blog. I thought yesterday I would try and do my first video blog for you guys, so you can see what CysticMom looks like and get another glimpse at Naythan's fun self. Unfortunately, the video took, but the audio went to crap. So, today I will work on trying to fix it! I will also be posting another blog on the horrible CF care from Children's hospital again. Considering the fact, we are gone, but the care will remain the same.

The Final Inspection (A poem for our Soldiers)

I know that we should be doing a blog about Naythan, but today Naythan is posting a blog about the soldiers. His uncle is a Soldier and wants to show him that he loves him.

The Final Inspection

The soldier stood and faced God
Which must always come to pass
He hoped his shoes were shining
Just as brightly as his brass.

Step forward now, you soldier,
How shall I deal with you?
Have you always turned the other cheek?
To My Church have you been true?

The soldier squared his shoulders and said,
No, Lord, I guess I ain't
Because those of us who carry guns
Cant always be a saint.

Ive had to work most Sundays
And at times my talk was tough,
And sometimes Ive been violent,
Because the world is awfully rough.

But, I never took a penny
That wasn't mine to keep...
Though I worked a lot of overtime
When the bills got just too steep,

And I never passed a cry for help,
Though at times I shook with fear,
And sometimes, God forgive me,
Ive wept unmanly tears.

I know I don't deserve a place
Among the people here,
They never wanted me around
Except to calm their fears.

If you've a place for me here, Lord,
It needn't be so grand,
I never expected or had too much,
But if you don't, Ill understand.

There was a silence all around the throne
Where the saints had often trod
As the soldier waited quietly,
For the judgment of his God,

Step forward now, you soldier,
You've borne your burdens well,
Walk peacefully on Heavens streets,
You've done your time in Hell.

Tests and Therapy in the form of Blogging

Today I'm having a bit of therapy in the form of blogging for Naythan.

Monday this week we had our SSI hearing. For those of you not in the United States, SSI is the Social Security part of our lives. They pay for you to be without a job if you have a proven medical disability. Well here, Cystic Fibrosis is considered one of their medical disabilities, but it has to be severe according to them. I had first applied for Naythan back in 2006 and was denied with them telling me he would grow out of it. Well, 3 years later, we finally got an appeal hearing, this time I think the judge finally seen my side of Naythan's life. He's got so much to do, and is fragile in an open air setting that I think we've won. I am hoping so because this will make Naythan's life much easier when he grows up. We told about a week. Monday isn't getting here fast enough.

Secondly, Naythan is having a new test done, as they aren't sure his enzymes are working correctly. When we first started the new clinic they did a fecal fat test to check to see how it's going. Well, the numbers weren't good, they were really bad. Well, right now we have to do a 3 day fecal fat test. Yup, you read that right. I have to take Naythan off his enzymes for 3 days, and write down EVERYTHING he eats and drinks. Well that's not the bad part, the bad part is I have to collect every bit of poop he has. Yup in a container and store it in my fridge, next to my food :(. Well, the worst part over that is, if you know what CF poop smells like you'd die. A person with CF has very FOUL smelling bowel movements. A person with CF on enzymes it's not so bad, but he's going to be without them for all 3 days. That brings us to the bad part for him. Without the enzymes the stomach can get horrible cramps, large amounts of pain, and lots of gas. I'm hoping he'll be ok over the weekend to do this. I'll just have to rub his poor little belly a lot.

I'm just frustrated that the old clinic told me nothing was wrong before and ignored me. Now I'm having to actually find out what is going on in my poor little boys stomach. Oh well, Good night my CF and non-CF friends. I must get some rest. I will blog tomorrow. We're heading back to the Chiropractor to get some much needed adjustments.

Followers

Today of all days, I decided to check to see how many followers I have. Unfortunately, it's only 7 of you reading our fun little blog here. So, if you are reading, pass out my blog addy so that I can get more followers for Naythan.

Naythan Update from His Hospital Stay

I know it's been a while since my last post but things have been crazy here. Naythan has been off his PICC line and antibiotics for 2 weeks now. He's staying healthy for the moment. We have our SSI hearing on Monday after waiting for 3 years for it. They were hoping I would back down but not this mama. I have other plans for my son. I want him to be taken care of for the rest of his life.

Naythan had his first exacerbation the end of October. We were on IV antibiotics for 2 weeks. I was so angry at those doctors I thought I was going to pop a vein in my head. The Pediatrician was the one who finally got the CF docs at Children's to admit Naythan to the hospital. This doctor made me so mad. He told my Peds doc that the only reason he was admitting Naythan was to make her happy. How could he not think something was wrong with Naythan? He was coughing at this point for 8 1/2 weeks, which him coughing isn't normal for him. You are probably thinking, If you don't have a child with CF, isn't a cough normal? No, in a child it isn't normal. The coughing on a daily basis comes with age, because there will be more damage to the lungs. His lungs right now don't have any damage, and he shouldn't be coughing.

After we finally did get admitted, that Tuesday (NIGHT) because the hospital was so over packed and no room for anyone. There were 3 other CF patients that were on the floor. All with exacerbations. They hooked him up to an IV right away and got the Anti's started right away. They messed up his meds, which is ok because I brought my own from home and made sure I got them in him. Some of his meds weren't even in the syringes for him. They were empty and the nurse thought I was crazy when I told her it was empty. Anyways, I digress...

The next morning the other doctor in the office (I guess he's coming on as a full time doctor now) showed up with a bunch of medical students. The thing I hate worse is a bunch of kids my age all staring at me weird as I talk about how sick my son is. Well, this doctor got his ass handed to him that day. He came in telling me, oh we're only going to give him 2 days of antibiotics and send him home. WHAT?! I don't think so. I told him there was no way it was going to happen. I had a daughter at home with possible pnuemonia and I wasn't taking him home like that. He said, "Fine, we'll send him home with oral antibiotics and he should be fine." WHAT?! I swear I was going to drop my jaw at this point. I told him hello we've been on 3 other oral antibiotics and none of them have worked. He tells me, "Then what do you want to do." This is where I stood up for my son at this point. I told him "You're going to do the whole course of antibiotics, give him a PICC line and we'll go home and do them." I swear I saw a couple of med student's mouths drop.

He looked at me like I was an alien and at this point I probably was acting like an alien. I hadn't had a good nights sleep in 2 months as this cough had kept him up at night and I had other sick kids at home. He said to me the alien "Are you sure that is what you want?" Oh no I just told you this to make myself look stupid, oh course it's what I want. It's what I knew my son needed. I am glad I made the doctors do it. Naythan no longer has a cough and is feeling better. Unfortunately, his weight is still low, and only in the 50th percentile but it's getting there.

We did switch clinics though too. I got tired of the crap from this one. Yes, I do drive 2 hours one way to the new clinic. But you know what? This clinic is my dream clinic. They have done TONS of testing for him, stuff the old clinic never did. They are working with me diligently to get Naythan to a healthy spot. Almost all of his tests have come back normal. He had tests done for vitamin levels, allergies, and other things. All these are perfect which means I'm doing my job right. We're only waiting on the fecal elatase test to see if we need to change enzymes for him. I don't think the ones he's on are working for him. I'll blog more tomorrow. I think you've had enough today.

Hey Everyone, this is Naythan while we were in the hospital doing his Vest for the first time. He loves it and hopefully all of you will love his little video.

NAYTHAN AND THE DOC!

After much fighting and arguing with doctors. We had gone to Michigan State University ER yesterday, got a diagnoses of Pnuemonia. Told me to follow up with my Peds doctor today and that's exactly what we did.

Went to see the PEDS doc today and just came home. She finally got through to Children's Hospital, and our Doctor who said he just had Asthma. He still didn't believe her, but said if it'll make you happy we'll find him a bed by the end of the week and get him on some IV antibiotics. Before she could even get back into the room to tell me, the nurse was calling me to tell me that they'll have a bed for him tomorrow morning! Finally something is getting done. I feel horrible having to play this stupid game of pitting doctors against each other, but I needed to get this done for his own health and safety.

His Peditrican believes that he if doesn't have Psuedomonus, he's got an oral antibiotic resistant bacteria growing in his sinuses. I hate to put him on these, but nothing else is working. She's afraid if we wait too long it'll be too late. That's what I think too. I'm glad to have a doctor that I love somewhere in his care.

Update on Horrible CF Care

After much helpful advice from all of you wonderful parents, I did what my heart led me to do. I drove 2 hours one way to another ER. I was so worried when the "asthma" meds he was put on only made his cough worse. He was still running fevers. I ended up at Sparrow Hospital in Lansing Michigan. I drove the 2 hours there and people were wondering why. After all the background information and talking with some very good doctors (who didn't even work for pulmonary) we found out what is really kicking my poor child's butt. He has a freaking...get this...PNEUMONIA!!!!!!!!!!!!!!!!

We're on Zpak now and will be for 5 days. We'll see if this gets rid of it. If it doesn't, we'll be on IV antibiotics. Which at this point is fine with me. I'm going to be calling the CF Center in Lansing in the morning and seeing if I can get into their clinic to see a doctor immediately. I don't mind the drive. I know how to get there now. I also will be doing, on the advice of a few people on the boards, reporting my son's old CF doctor to: Children's Hospital, Medicaid, Children's Special Healthcare, the BBB and most importantly the CF foundation. I'm done and I've had it. This man almost cost my son his life. I just found out I had a Great Aunt who has CF and died at the age of 22. I'm not losing my son early because of shotty care. It's not happening to me! Thank you all for your support. I'll let you know how the reporting goes tomorrow!
Dorothy

OUR HORRIBLE CF CARE

He's had a cough for about 8 weeks now. His nose started out pink on the inside and the doctors blew me off. Well 2 weeks later he ended up having a runny nose. They started him on Omnicef and the symptoms went away while on the antibiotic. Well, about a week after the antibiotic was done the symptoms and bad cough came back again. They started him on Bactrim for another 10 days. The symptoms went away again and he was good. Now about a week and a half after the Bactrim the symptoms are back, but he also is have fevers on and off, complaining of stomach pain, vomiting, headaches, but no ear aches. I ended up taking him to the ER at Children's Hospital of Michigan last night. They couldn't get any meds or food down him. He had started vomiting about 6pm last night. Nothing would stay in him. They ended up sending him home anyways and said go to clinic in the morning.

So, against my better judgment I went home and went to clinic this morning. My CF doc told us that oh the vomiting is the flu, don't worry about it. Then told me that the cough he's been having is because of asthma that he now has. Which doesn't make any sense to me considering his cough lasts all day and night. Doesn't come with just doing things. He has it all the time. Asthma doesn't make sense to me. I just took the meds and went home. At this point I'm over tired and ready to cry because I know this isn't the problem with my son. He says it's asthma because his chest x-ray is clear and that his THROAT culture is clear. They have never done a lung culture, a sputum culture, or a sinus culture at any point. Just swabbing the back of his throat.

Well, I took my other kids to the peds doc because they haven't been feeling well. I told her how I felt about what happened at clinic today, and she checked him over. She's dealt with him more than the CF doc has. She says that the asthma diganoses is wrong. I agree with her. She said his nasal passages are as red as a Sharps Needle box they have at the doc office. She thinks that they aren't culturing the right thing. She thinks he might have PA in his sinus' and that he does need IV antibiotics to combat the crap that is beating him up. So, she's going to put a call into the CF doc on Monday morning and get him to see things her way and hopefully get the right answer. She's angry that he would just say he has asthma from a clear X-ray and push more meds.

NOW: The CF clinic is down to one doctor. They lost the other doctor to another hospital. I think since this other doctor has left, and all the Pulmonary and CF Clinic patients are just on him that he isn't as good as he used to be. I think my level of care is going down. I don't have the faith in him that I used to. Has anyone else had this problem? What do you do? The next closest CF Clinic is about 45 mins away, but they told me that he doesn't have CF (which he's had positive sweat tests). The next closest is 2 hours away. I don't know what to do at this point.

Thanks for letting me rant.