Ricky is home sick today. He has a sore throat, cough, and chest tightness. I think he got it from Misty, who is also home today (double ear infection). I am going to try to get him to the pediatrician just to check on things, since we are switching insurance after tomorrow (not by choice... Healthy Families has stopped having HealthNet and now we have to have Blue Cross again).
Ricky's pediatrician suddenly decided a few weeks ago that he was going to close his practice and start working in urgent care. His partner is transferring to a different pediatric practice, that unfortunately our insurance doesn't cover.
So I had to select another pediatrician for the kids. With the other two it is not as complicated as it is with Ricky. The first pediatrician I found whom I loved (talked to her on the phone) takes Healthy Families insurances but does not take CCS (which covers the CF stuff... pediatrician needs to be with them so they can refer to the specialists). I went with my second choice (there were only five on our insurance in the whole area who are CCS and are currently accepting new patients) and am having the kids' charts transferred there, which is a huge pain in the butt since the doctor's office WOULD NOT RETURN MY CALL. The only people left there are the partner and two nurses. The clerical staff all jumped ship. I found this out when I took Misty there yesterday.
Anyway, at least it is handled now but it sure is frustrating. Next week I am taking Ricky to the new doc so she can see him and officially refer him to all of his specialists. Oy.
Friday, January 30, 2009
Sunday, January 18, 2009
Good news!
Today (Saturday, that is... I'm up late) I opened the mail before we headed out for the day and found... *gasp* ... a check from the federal government. A very generous check. It would appear that Ricky has been approved for SSI, just like that! The check is retroactive to the application. Everyone in the know told me that he would probably be denied and I'd have to appeal the decision. But no... He's been approved. Apparently the letter explaining the decision will be coming soon.
I'm excited, I'm relieved, and I am happy. The money is now residing in savings where I will only draw upon it for emergencies. I was so nervous, not having emergency money. This takes a load off my mind!
Yay, yay!
I'm excited, I'm relieved, and I am happy. The money is now residing in savings where I will only draw upon it for emergencies. I was so nervous, not having emergency money. This takes a load off my mind!
Yay, yay!
Friday, January 16, 2009
A few little updates
First of all, Ricky's glucometer died (a problem that apparently has had a recall associated with it, that I didn't know about) and I wasn't able to use it with him when he had the mother of all dizzy spells the other day. I called the endocrinologist's office on Monday and by Tuesday they'd called in a new one, along with new strips and lancets since it's an updated version of the old one. So, yay for that. Misty of course thinks it's a fun toy to play with and tries to get the lancets out to poke herself with, so we have to keep it put up HIGH.
Secondly, I called the CF clinic to get the results of Ricky's December DXA scan, and as it turns out, his bones are FABULOUS, even better than the last time! Yay!
Also, last week Ricky lost a molar. It went from being loose to coming out in two days. This was the first tooth he lost on his own (not pulled out by a dentist) in several years and he was so proud of it. He has already started to get a new tooth in its place. His mouth is still gappy from all of the teeth the dentist recently pulled out!
Nothing else to report now. Next month we have a few doctor's appointments, and hopefully he stays healthy until then!
Secondly, I called the CF clinic to get the results of Ricky's December DXA scan, and as it turns out, his bones are FABULOUS, even better than the last time! Yay!
Also, last week Ricky lost a molar. It went from being loose to coming out in two days. This was the first tooth he lost on his own (not pulled out by a dentist) in several years and he was so proud of it. He has already started to get a new tooth in its place. His mouth is still gappy from all of the teeth the dentist recently pulled out!
Nothing else to report now. Next month we have a few doctor's appointments, and hopefully he stays healthy until then!
Sunday, January 11, 2009
worrying more
You haven't heard from me in a while. Ricky actually just finished up a round of antibiotics; week before last I took him to the pediatrician, and then the CF doc a couple of days later, because he was complaining again of shortness of breath and tightness. He has also intermittently been complaining of pain when he breathes in. His lung function was only slightly decreased when we saw the CF doc, but he was clearly grunting and working harder to breathe at home and when out and about. Kid just can't get a break.
So he just finished taking a round of Septra and is back on inhaled Tobi antibiotics.
Today he had another dizzy spell incident. They apparently come several times a day, but then several times a week we get a BAD one. This one came when he was showering this morning. He said everything went black and he had to sit down. :( It was bad enough that on the way to Costco in the car he dozed off and on and just lay motionless. At Costco I had to get a wheelchair to wheel him around in (my mom met us there and she pushed a cart).
Something has to change. We need to get to the bottom of this! He has an audiology appointment coming up (to test the auditory nerves and see if he's suffering from vestibular nerve damage from antibiotics, which could cause the dizziness) and also a neurology recheck. These are both next month I believe. I'm truly at my wit's end with all of this stuff. It must be miserable living life like this!
Love you, my Ricky boy...
So he just finished taking a round of Septra and is back on inhaled Tobi antibiotics.
Today he had another dizzy spell incident. They apparently come several times a day, but then several times a week we get a BAD one. This one came when he was showering this morning. He said everything went black and he had to sit down. :( It was bad enough that on the way to Costco in the car he dozed off and on and just lay motionless. At Costco I had to get a wheelchair to wheel him around in (my mom met us there and she pushed a cart).
Something has to change. We need to get to the bottom of this! He has an audiology appointment coming up (to test the auditory nerves and see if he's suffering from vestibular nerve damage from antibiotics, which could cause the dizziness) and also a neurology recheck. These are both next month I believe. I'm truly at my wit's end with all of this stuff. It must be miserable living life like this!
Love you, my Ricky boy...
Thursday, December 25, 2008
Saturday, December 20, 2008
olfactory seizures?
Ricky made a statement this evening that he has made before, only this time I paid more attention: That he had a "funny feeling" in his chest followed by a weird smell.
This time I remembered hearing about sensory seizures, specifically olfactory seizures. He has brought this up a few times before, but it never connected with me. If these ARE seizures, they are minor compared to the other ones he has had. But still worth mentioning to the neurologist. He is on a seizure med already (Trileptal) but apparently there are other ones that can help with sensory seizures...
It is a good thing that we are seeing the neurologist soon, eh?
Goodnight.
This time I remembered hearing about sensory seizures, specifically olfactory seizures. He has brought this up a few times before, but it never connected with me. If these ARE seizures, they are minor compared to the other ones he has had. But still worth mentioning to the neurologist. He is on a seizure med already (Trileptal) but apparently there are other ones that can help with sensory seizures...
It is a good thing that we are seeing the neurologist soon, eh?
Goodnight.
Wednesday, December 17, 2008
bone density scan
Just a quick note, Ricky did fine with his bone density (aka DXA) scan. Misty and I got to watch it being done. His last one was over four years ago and will serve as a baseline for this one. Basically he should be gaining bone and his bones should be staying strong and not becoming less dense.
It was an interesting test... First they scan the non-dominant hip (his right one because he is left-handed) and then certain bones at the base of the leg by the foot, and then they scan the whole body. The whole process only takes about 10 minutes. When the scan was done, we got to see his entire skeleton on the computer screen as the tech verified that it had worked properly. That was cool!
As a side note, he's now 97 pounds and 4'11". He has apparently grown 4 inches since his last scan -- encouraging news. :)
We will have the results in around a week.
Edited to add video of the end of the bone scan!
It was an interesting test... First they scan the non-dominant hip (his right one because he is left-handed) and then certain bones at the base of the leg by the foot, and then they scan the whole body. The whole process only takes about 10 minutes. When the scan was done, we got to see his entire skeleton on the computer screen as the tech verified that it had worked properly. That was cool!
As a side note, he's now 97 pounds and 4'11". He has apparently grown 4 inches since his last scan -- encouraging news. :)
We will have the results in around a week.
Edited to add video of the end of the bone scan!
Make-a-Wish Children's Holiday Party and a little update
Every year the volunteers from the Greater Bay Area chapter of the Make-a-Wish Foundation throw a holiday party for the wish kids and their families, complete with gifts for all of the kids, games with prizes, a caricature booth, facepainting booth, balloon-bending clown, and a visit with Santa Claus himself!
(This was our third year going to this party. Ricky's Make-a-Wish Disney cruise was in March of 2006, and you can see the pictures from it here and here.)
The party was GREAT. We had so much fun, as usual! I got a lot of great pics and videos. The kids all got gifts from Santa... Ricky got an Air Hogs miniature helicopter. Andrew got a Tech Decks set. And Misty got a Go Diego Go! toy which she was totally thrilled with. Actually the only person who didn't like their present was Andrew. ;) He's just not into those. Plus he lost his voice and wasn't feeling great I think.
You can see the entire set of pictures (and videos which will be added tonight) here.
Today I am picking Ricky up early from school for his bone density test. He is supposed to have these regularly because people with CF often develop osteoporosis due to poor nutrition (caused by malabsorption) and also because he has taken Prednisone a number of times, and it can cause bone loss. I'll update about the test later.
(This was our third year going to this party. Ricky's Make-a-Wish Disney cruise was in March of 2006, and you can see the pictures from it here and here.)
The party was GREAT. We had so much fun, as usual! I got a lot of great pics and videos. The kids all got gifts from Santa... Ricky got an Air Hogs miniature helicopter. Andrew got a Tech Decks set. And Misty got a Go Diego Go! toy which she was totally thrilled with. Actually the only person who didn't like their present was Andrew. ;) He's just not into those. Plus he lost his voice and wasn't feeling great I think.
You can see the entire set of pictures (and videos which will be added tonight) here.
Today I am picking Ricky up early from school for his bone density test. He is supposed to have these regularly because people with CF often develop osteoporosis due to poor nutrition (caused by malabsorption) and also because he has taken Prednisone a number of times, and it can cause bone loss. I'll update about the test later.
Monday, December 15, 2008
gastroenterologist visit
I am posting this almost a week later but backdating it to the right day. :)
Ricky saw the gastroenterologist for his quarterly visit. In the interim he did have that overnight ER visit for a near bowel blockage. So the doctor finally suggested that we try something different than the Miralax he's been on for many years (currently at 3x the usual adult dose).
First we are supposed to try Milk of Magnesia, 6 teaspoons once per day. If that doesn't work, we are to try a new med, Amitiza. She gave us samples of it. He will get three pills (8mg each) twice a day.
As of this writing (I am writing this on December 21) the Milk of Magnesia did not help at all. His poops were EXACTLY the same... sporadic and painful. :( I am getting ready to start him on the Amitiza tomorrow. Other CF patients have told me that it works great for them. The only problem we might have is that it's a very expensive new drug that also isn't yet approved for kids. We are lucky (?) to have CCS so hopefully they'll pay for it if the insurance doesn't. There is usually a lot of back and forth before someone finally pays, but we could get lucky. We'll see.
Ricky saw the gastroenterologist for his quarterly visit. In the interim he did have that overnight ER visit for a near bowel blockage. So the doctor finally suggested that we try something different than the Miralax he's been on for many years (currently at 3x the usual adult dose).
First we are supposed to try Milk of Magnesia, 6 teaspoons once per day. If that doesn't work, we are to try a new med, Amitiza. She gave us samples of it. He will get three pills (8mg each) twice a day.
As of this writing (I am writing this on December 21) the Milk of Magnesia did not help at all. His poops were EXACTLY the same... sporadic and painful. :( I am getting ready to start him on the Amitiza tomorrow. Other CF patients have told me that it works great for them. The only problem we might have is that it's a very expensive new drug that also isn't yet approved for kids. We are lucky (?) to have CCS so hopefully they'll pay for it if the insurance doesn't. There is usually a lot of back and forth before someone finally pays, but we could get lucky. We'll see.
Wednesday, December 10, 2008
ER visit and teeth stuff
Yesterday was a heck of a day!
First of all, when I got up, Ricky was still in bed, which is never a good sign. He was tired and his chest was tight. I let him sleep until he was ready to get up and then canceled his bus. He was only going to go for a couple of hours anyway because he had two appointments scheduled for yesterday.
Got Andrew off to school and then took Misty to day care. Meanwhile Ricky did his treatments and took his shower. I called the pediatrician's house while I was out and got Ricky an appointment for 10.
At the appointment, Ricky's lungs apparently sounded not so great, and he was working harder to breathe and talk. The pediatrician said he'd call the lung doc and get back to me.
Ricky and I then went up to South San Francisco for a market research study about nebulizers, for which we got $150 ($100 for him and $50 for me for Misty's day care and my gasoline). We had lunch and on our way back, the pediatrician called me.
The lung doc (not Ricky's, but the one on call) had called him back and informed him that there were no beds and the only way Ricky would be admitted was if they could admit him somewhere else. She did not suggest any meds and didn't say anything about Ricky coming to clinic. (Apparently no clinic today and she said nothing about tomorrow.)
I called the CF nurse and she called me back later. She basically said that we should go to the ER if I was concerned. I eventually decided to do that.
In the meantime we picked Misty up from day care and took Ricky to the orthodontist. Right after he was called back she threw a major league hissy fit and I had to take her outside, where she screamed and howled. I have no idea why aside from the fact that she is 2. Ricky came out eventually and I learned that the orthodontist wants four more teeth to be pulled out (he had four pulled out a few years ago). Poor Ricky with the congenitally bad teeth of an 8 year old... at age 13. They just don't fall out and grow in when they are supposed to, so the professionals have to help them along.
So we popped next door to the dentist's office (our fourth time in three weeks going there!) and made an appointment... But not before they took some more x-rays (the ones they had were from a year ago). We finally got home around 4:45 and Andrew arrived with the family specialist a few minutes later. I'd already decided that we were going to the ER so I got everything packed up and we left after the kids had dinner.
I dropped Misty and Andrew off at my mom's and took Ricky up to Stanford. Eventually, after blood tests and a portable chest x-ray and exam by a couple of docs, the verdict was that he would go home on Bactrim and Prednisone and we would go to clinic in a few days. Basically his x-rays looked okay. So that is good. "Just" reactive airways again it sounds like.
So after he had a breathing treatment and first dose of the two meds, we got to leave, and went to the house to get the other two kids and then go home. I am still exhausted. I was short on sleep to begin with and now it is worse!
Today Ricky stayed home to recover and he seems to be doing well. He also had two teeth pulled today; as usual he bled longer than most people seem to do after such things, but he's doing fine now. Those baby teeth did NOT look ready to come out; they still have roots!
Enough excitement for one week, I tell ya...
First of all, when I got up, Ricky was still in bed, which is never a good sign. He was tired and his chest was tight. I let him sleep until he was ready to get up and then canceled his bus. He was only going to go for a couple of hours anyway because he had two appointments scheduled for yesterday.
Got Andrew off to school and then took Misty to day care. Meanwhile Ricky did his treatments and took his shower. I called the pediatrician's house while I was out and got Ricky an appointment for 10.
At the appointment, Ricky's lungs apparently sounded not so great, and he was working harder to breathe and talk. The pediatrician said he'd call the lung doc and get back to me.
Ricky and I then went up to South San Francisco for a market research study about nebulizers, for which we got $150 ($100 for him and $50 for me for Misty's day care and my gasoline). We had lunch and on our way back, the pediatrician called me.
The lung doc (not Ricky's, but the one on call) had called him back and informed him that there were no beds and the only way Ricky would be admitted was if they could admit him somewhere else. She did not suggest any meds and didn't say anything about Ricky coming to clinic. (Apparently no clinic today and she said nothing about tomorrow.)
I called the CF nurse and she called me back later. She basically said that we should go to the ER if I was concerned. I eventually decided to do that.
In the meantime we picked Misty up from day care and took Ricky to the orthodontist. Right after he was called back she threw a major league hissy fit and I had to take her outside, where she screamed and howled. I have no idea why aside from the fact that she is 2. Ricky came out eventually and I learned that the orthodontist wants four more teeth to be pulled out (he had four pulled out a few years ago). Poor Ricky with the congenitally bad teeth of an 8 year old... at age 13. They just don't fall out and grow in when they are supposed to, so the professionals have to help them along.
So we popped next door to the dentist's office (our fourth time in three weeks going there!) and made an appointment... But not before they took some more x-rays (the ones they had were from a year ago). We finally got home around 4:45 and Andrew arrived with the family specialist a few minutes later. I'd already decided that we were going to the ER so I got everything packed up and we left after the kids had dinner.
I dropped Misty and Andrew off at my mom's and took Ricky up to Stanford. Eventually, after blood tests and a portable chest x-ray and exam by a couple of docs, the verdict was that he would go home on Bactrim and Prednisone and we would go to clinic in a few days. Basically his x-rays looked okay. So that is good. "Just" reactive airways again it sounds like.
So after he had a breathing treatment and first dose of the two meds, we got to leave, and went to the house to get the other two kids and then go home. I am still exhausted. I was short on sleep to begin with and now it is worse!
Today Ricky stayed home to recover and he seems to be doing well. He also had two teeth pulled today; as usual he bled longer than most people seem to do after such things, but he's doing fine now. Those baby teeth did NOT look ready to come out; they still have roots!
Enough excitement for one week, I tell ya...
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