Saturday, May 30, 2009
Wednesday, May 27, 2009
CF clinic follow-up visit
Today (Tuesday) at 11 Ricky had a follow-up visit with the CF doc. I needed to do something quickly at work, so I took him there with me for just an hour. Right before we left the house, he started complaining of a headache, chest tightness, dizziness, and a stomach ache (the last one being a new thing). When we got to my work, it started to get worse and by the time we left there, he was hobbling along unable to stand. At one point he even lay down on the floor. I limped him out to the car and we drove up to the CF clinic. He had his seat back and looked like death warmed over. He was pale and looked terrible. I debated about whether I should take him to the ER instead but he started to come around as we got closer to the clinic and he was finally okay. I took him inside in his wheelchair because he was a bit unsteady, but soon he was back to himself. It sure was scary.
The CF clinic visit went fine. He has lost a little bit of weight, about 3 pounds. Not good. :( However, his lungs sounded crystal clear and his spirometry was "stellar"... Some of the numbers the best they've seen in years. His vital signs were all great too. It was interesting to have his vitals checked right after one of his dizziness episodes... Proves the lungs basically have nothing to do with what is going on. Still don't know what does, though! We do go to the neurologist next month.
We are still waiting for the Seroquel that I posted about last week. The psychiatrist's insurance auth person was supposed to fax in the prior auth form (AGAIN) today but I didn't hear from her that it was done, and she didn't return my call. I checked with the pharmacy and the prescription still isn't going through. I tried to refill his 25mg Seroquel prescription today and found out that that one had been revoked as well. ARGH!!!!! When I got home I downloaded the form to file a grievance with the insurance company. If that doesn't get us anywhere, I go to the Department of Managed Health. I had to do that two years ago when Blue Cross was denying and/or not paying for all of Ricky's hospital and ambulance bills.
I hate insurance companies. Have I mentioned that lately? Oh, probably. :)
That's it for now...
The CF clinic visit went fine. He has lost a little bit of weight, about 3 pounds. Not good. :( However, his lungs sounded crystal clear and his spirometry was "stellar"... Some of the numbers the best they've seen in years. His vital signs were all great too. It was interesting to have his vitals checked right after one of his dizziness episodes... Proves the lungs basically have nothing to do with what is going on. Still don't know what does, though! We do go to the neurologist next month.
We are still waiting for the Seroquel that I posted about last week. The psychiatrist's insurance auth person was supposed to fax in the prior auth form (AGAIN) today but I didn't hear from her that it was done, and she didn't return my call. I checked with the pharmacy and the prescription still isn't going through. I tried to refill his 25mg Seroquel prescription today and found out that that one had been revoked as well. ARGH!!!!! When I got home I downloaded the form to file a grievance with the insurance company. If that doesn't get us anywhere, I go to the Department of Managed Health. I had to do that two years ago when Blue Cross was denying and/or not paying for all of Ricky's hospital and ambulance bills.
I hate insurance companies. Have I mentioned that lately? Oh, probably. :)
That's it for now...
Monday, May 25, 2009
What is CF and what is the defect?
Well, May is CF awareness month and I haven't done much in the way of promoting awareness, have I? So here is my contribution. Well, not mine exactly... But a grad student made this incredible animation to show what CF is and what the defect is that causes the disease's progression. Please check it out!
Friday, May 22, 2009
little update
Most of what we have been dealing with this week is Misty's illness (a stomach virus combined with pneumonia) but I did want to update about Ricky.
On Saturday he had a rage at a baby shower we were at because of a misunderstanding. I managed to get him to the car and calm him down eventually. It didn't even require extra psych meds. But it was scary. And frustrating because it was the first rage in a LONG time.
And then there is MORE stupid insurance company BS. And I am going to call these jerks out by name in this blog entry so that anyone who is considering signing up for this company through Healthy Families will think twice.
Tonight Misty and I went to Walgreens to fill her antibiotic prescription (Amoxicillin) and pick up several of Ricky's prescriptions. Guess what? The insurance company decided to REVOKE or CANCEL the prior authorization for one of Ricky's psych meds, Seroquel 100mg, that was issued in March. They say he should only take 30 pills per month. He takes four per day. The insurance company (Anthem Blue Cross) is power crazy and out of their heads. The representative of Anthem Blue Cross told the pharmacist on the phone that they WOULD pay for 400mg tablets, since he takes 400mg per day. If only it were that simple! He takes 250mg in the morning, 150mg at noon, and 150mg at dinner. The 50mg each time is made up by two 25mg tabs that we also get. 400mg tabs would not work. And with the prior auth revoked, we have to jump through the same hoops we jumped through in March, all over again. That took three weeks. If it takes that long again I'm going to write to the California Department of Managed Care. No, screw that. I'm going to write to them anyway. This is ridiculous. And you know what else? We were never treated this way by Blue Cross when we had them through Dave's employer. I am just about convinced that all of the hoops they've made us jump through since January are because the kids are covered under a state-sponsored plan. In my eyes, that is discrimination, and it's a big load of BS.
I feel a lot better having gotten that off my chest. And now, it's bedtime.
On Saturday he had a rage at a baby shower we were at because of a misunderstanding. I managed to get him to the car and calm him down eventually. It didn't even require extra psych meds. But it was scary. And frustrating because it was the first rage in a LONG time.
And then there is MORE stupid insurance company BS. And I am going to call these jerks out by name in this blog entry so that anyone who is considering signing up for this company through Healthy Families will think twice.
Tonight Misty and I went to Walgreens to fill her antibiotic prescription (Amoxicillin) and pick up several of Ricky's prescriptions. Guess what? The insurance company decided to REVOKE or CANCEL the prior authorization for one of Ricky's psych meds, Seroquel 100mg, that was issued in March. They say he should only take 30 pills per month. He takes four per day. The insurance company (Anthem Blue Cross) is power crazy and out of their heads. The representative of Anthem Blue Cross told the pharmacist on the phone that they WOULD pay for 400mg tablets, since he takes 400mg per day. If only it were that simple! He takes 250mg in the morning, 150mg at noon, and 150mg at dinner. The 50mg each time is made up by two 25mg tabs that we also get. 400mg tabs would not work. And with the prior auth revoked, we have to jump through the same hoops we jumped through in March, all over again. That took three weeks. If it takes that long again I'm going to write to the California Department of Managed Care. No, screw that. I'm going to write to them anyway. This is ridiculous. And you know what else? We were never treated this way by Blue Cross when we had them through Dave's employer. I am just about convinced that all of the hoops they've made us jump through since January are because the kids are covered under a state-sponsored plan. In my eyes, that is discrimination, and it's a big load of BS.
I feel a lot better having gotten that off my chest. And now, it's bedtime.
Thursday, May 14, 2009
Hi/Lo Thursday
This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.Our HIGHS
Ricky's lungs are staying well! He also had a successful visit to the psychiatrist.
Our LOWS
Ricky continues to have dizzy spells and exhaustion of unknown origin. None of the doctors have answers.
Tuesday, May 12, 2009
Ricky
Ricky was doing fine yesterday and went to school. I was almost to work, about 9:00, when I got a call that he wasn't feeling well. He said it felt like a bubble was in his chest, and he was very, very tired.
So he went to sleep and I went to get him.
I took Ricky to the pediatrician and his lungs apparently sounded fine. The doctor prescribed some prednisone but meanwhile I had been in touch with the CF nurse and I waited to hear from her to find out what to do. There was a possibility of Ricky going up to see the CF doc.
Well, we never heard from the CF nurse. But Ricky was feeling a bit better so we went on with our day.
He did have a dizzy spell as we were getting to the psychiatrist appointment that he had at 1:30 so I brought him in there in a wheelchair. I kind of vented at the psychiatrist about everything that has been going on with the dizzy spells and all, and he was very sympathetic.
Ricky's appetite has been much decreased, and in fact according to the scale at the pediatrician's office he has lost weight. :( Gotta work on that.
Today he went to school after a full night's sleep and seemed to be doing okay. Yay!
So he went to sleep and I went to get him.
I took Ricky to the pediatrician and his lungs apparently sounded fine. The doctor prescribed some prednisone but meanwhile I had been in touch with the CF nurse and I waited to hear from her to find out what to do. There was a possibility of Ricky going up to see the CF doc.
Well, we never heard from the CF nurse. But Ricky was feeling a bit better so we went on with our day.
He did have a dizzy spell as we were getting to the psychiatrist appointment that he had at 1:30 so I brought him in there in a wheelchair. I kind of vented at the psychiatrist about everything that has been going on with the dizzy spells and all, and he was very sympathetic.
Ricky's appetite has been much decreased, and in fact according to the scale at the pediatrician's office he has lost weight. :( Gotta work on that.
Today he went to school after a full night's sleep and seemed to be doing okay. Yay!
now you can rest, sweet girl.
Kayleigh passed last night in the arms of her parents. She was just shy of 11 months old and had spent her entire life in the NICU.
Rest in peace, Kayleigh.
Sunday, May 10, 2009
Update
First of all, happy Mother's Day to all of the moms, grandmas, aunts, sons, and daughters out there! :)
This past week, Ricky saw the gastroenterologist. He has grown almost an inch and is doing well healthwise. She said his belly was good, and that he needs to stay on Miralax two times a day now. I asked if he was more likely to have a blockage again because of having these blockages in the hospital. She said that, to the contrary, he is more likely to have blockages again just because he was born with peritonitis due to a blocked and ruptured bowel. In other words, he was already more likely.
She said that his lungs were a little crackly, but not unusually so for someone with CF and definitely better than they were when he was in the hospital. (That's one thing I like about her -- she always listens to his lungs too, even though she's a tummy doctor. I like that she is thorough.)
Ricky has still had some trouble recovering from his hospitalization. He was out of school one day this week and slept much of the day on another day. He also had a couple of major dizzy spells. I'm getting so frustrated... I wish I knew why these were happening.
I came to a decision after Ricky got out of the hospital that we needed to get a wheelchair for him. Mind you, it would only be used when he is having one of his spells and can't walk without being about to pass out. So I started searching Craigslist, Freecycle, and the local Las Madres bulletin board to try to find a used pediatric wheelchair.
Someone responded to my Craigslist ad that she had a small adult-sized wheelchair, used. She lives in Watsonville, quite a distance away, and was willing and able to drive in from there to show us the wheelchair. I met her at a local Wendy's (the one where the infamous "finger in the chili" incident happened, incidentally) to check it out. It's definitely used, but fully functional and just the right size for Ricky. I bought it. I feel a lot better now being prepared.
There's no soccer today because of Mother's Day. The kids and I are taking my grandmother to the airport today. My mom's going to be on her own briefly and then have people around most evenings to help her. She's recovering nicely from her leg injury!
Finally, Ricky got a package from Fed Ex this past week... In it were discs of all of the photos from his Genentech photo shoot back in November. The picture you see here is one of them and some more are here. They turned out great, didn't they?
This past week, Ricky saw the gastroenterologist. He has grown almost an inch and is doing well healthwise. She said his belly was good, and that he needs to stay on Miralax two times a day now. I asked if he was more likely to have a blockage again because of having these blockages in the hospital. She said that, to the contrary, he is more likely to have blockages again just because he was born with peritonitis due to a blocked and ruptured bowel. In other words, he was already more likely.
She said that his lungs were a little crackly, but not unusually so for someone with CF and definitely better than they were when he was in the hospital. (That's one thing I like about her -- she always listens to his lungs too, even though she's a tummy doctor. I like that she is thorough.)
Ricky has still had some trouble recovering from his hospitalization. He was out of school one day this week and slept much of the day on another day. He also had a couple of major dizzy spells. I'm getting so frustrated... I wish I knew why these were happening.
I came to a decision after Ricky got out of the hospital that we needed to get a wheelchair for him. Mind you, it would only be used when he is having one of his spells and can't walk without being about to pass out. So I started searching Craigslist, Freecycle, and the local Las Madres bulletin board to try to find a used pediatric wheelchair.
Someone responded to my Craigslist ad that she had a small adult-sized wheelchair, used. She lives in Watsonville, quite a distance away, and was willing and able to drive in from there to show us the wheelchair. I met her at a local Wendy's (the one where the infamous "finger in the chili" incident happened, incidentally) to check it out. It's definitely used, but fully functional and just the right size for Ricky. I bought it. I feel a lot better now being prepared.
There's no soccer today because of Mother's Day. The kids and I are taking my grandmother to the airport today. My mom's going to be on her own briefly and then have people around most evenings to help her. She's recovering nicely from her leg injury!
Finally, Ricky got a package from Fed Ex this past week... In it were discs of all of the photos from his Genentech photo shoot back in November. The picture you see here is one of them and some more are here. They turned out great, didn't they?
Tuesday, May 5, 2009
Sunday, May 3, 2009
Blah.
Ricky seemed to be doing better so he suited up and went to soccer today. But he was almost immediately hit by a headache and dizziness episode and we left after about 20 minutes. He really did try but it just wasn't meant to be. :(
Then he napped for 4 hours at my mom's! He slept right through dinner. He was sweaty and felt warm so at one point I checked his temp, but it was normal (his always seems to be, even when he IS sick).
Still recovering from the hospital I guess. It's scary to me that it has taken this long, because it hasn't in the past, but then, this time he was in a lot longer than usual.
Guess that's it for now...
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