This morning I got up at 6:30 and Ricky was still asleep. It was all I could do to roust him from bed by 7. This is the boy who usually wakes up at 5:30! I made the decision to keep him home, as he was clearly sick, and was telling me that his chest was tight and everything. :( Meanwhile Andrew took his sweet time getting up, so I canceled both of their buses and showered while Ricky did his breathing treatment. Then we took Andrew to school.
After that, smart thinking mom (thank you very much) took Ricky and myself to get our blood drawn. We both had fasting labs that needed to be done, and neither of us had eaten. We are in different medical groups so we had to go to different labs, but they are in the same medical building so it didn't take too long. Misty was very concerned about us getting poked!
The pediatrician's office is also in that medical complex, so we stopped by there when we finished the labs, at about 9. Oddly, they were not open. I decided to go ahead and take Misty to day care because I figured we'd be doing Ricky's medical stuff most of the day. So as I drove her to day care, I tried calling the pediatrician's office. All morning their recording was still on the weekend recording, which gave the name and number of the doctor who was covering for them on the weekend. Finally in desperation I called the covering doctor. His staff happened to know which doctor was covering for our pediatrician today, and gave me the number.
So after we dropped Misty off, I got ahold of the real covering doctor's office. They were surprised to hear that they were covering! Argh! Anyway, they agreed to see Ricky at 10 and we headed over.
The doctor was nice... An Indian lady. All of the patients coming and going were also Indian (as in from India) and I started to fear that the doctor would not know what to do with a little white boy with cystic fibrosis (which is almost never seen in non-Caucasian people). My fears were allayed when she asked all of the right questions, like about what kind of bacteria he cultures and what we do for treatments and chest percussion and what antibiotics are usually prescribed for him. Clearly she'd had training in a hospital or clinic with CF patients -- I should have known better than to worry!
Anyway, the doctor wasn't sure what to do. She said she'd call Ricky's pediatrician and the pulmonologist to find out what to do, and that someone would call us.
Ricky and I went home. He played DS for about twenty minutes and then the next time I looked over at the couch, he was out cold. He ended up sleeping for over two hours -- very unusual for him. He was clearly feeling crummy. :(
So while Ricky slept I called the CF clinic again. I had tried calling the pediatric CF nurse in the morning and found that she was out until 1:00. Argh. Her message said to have the pediatric pulmonologist on call paged. So at this point I did that, but the operator declined to page the doctor since it was business hours. Argh! Eventually I was transferred to the adult CF coordinator, since at least she was in the office, but she didn't answer and I left a message.
Eventually, thank goodness, the pediatric CF coordinator called me back, having gotten back from her morning meeting. As it happened, Ricky's pulmonologist was the one on call and Mary the nurse paged her. Dr. C said for Ricky to come in tomorrow at 1 for an x-ray and spirometry. Tomorrow! I was kinda frustrated... I mean I had been trying to get help for him all day! But... At least he is going to be seen.
(At some point, our actual pediatrician's office called back finally -- I had left them a message in the morning when no one was answering -- and I kinda grouched at them over them not answering the phone. They said they'd try to get ahold of the pulmonologist too but it ended up not to matter.)
By then it was 1:45 p.m. I woke Ricky up with difficulty. He was very hot and sweaty and groggy and was complaining about his chest being tight again. I took his temperature and he did not have a fever. We got in the car and went to get Misty and Andrew.
We got Misty from day care and Andrew from school and went up to Stanford for Ricky's previously scheduled psychiatry appointment. That went well... Since he has been so stable! I also found out that that clinic takes Medi-Cal, which greatly reassured me. We go back the first week of November.
We got fast food on the way home and then got Ricky going on his treatment. He was slow-moving all evening and at bedtime he was complaining about his chest being tight again -- even after having had all of his breathing treatments.
I'm afraid he'll end up being inpatient after we go in tomorrow. But we'll just have to wait and see. My poor guy!
Monday, September 29, 2008
Sunday, September 28, 2008
evening update...
As we got to my mom's house this afternoon (I was dropping the boys off so I could go to work), Ricky said he felt dizzy and had a headache... The same thing that has been happening a lot lately. When we got inside I checked his blood sugar and found it to be only 72! My mom immediately gave him some Life Savers at my request. It is strange with this dizziness thing... Sometimes it is related to the blood sugar and sometimes not.
When I came later to pick the boys up, Ricky said he had still had a headache during the day, along with the chest tightness that he had this morning. I sure hope he is not getting sick. Especially since our insurance from Dave (the boys' stepdad and Misty's dad) ends on Tuesday. The boys are supposed to have Medi-Cal (state insurance) after that but who knows when it will be processed? I applied 9 days ago and so far not a word. I was assured "well it will be retroactive", which helps for hospitalizations but doesn't really help much for prescriptions, etc. The idea of being without insurance, ESPECIALLY with Ricky, scares me to death.
I guess I just have to trust that things will be okay.
When I came later to pick the boys up, Ricky said he had still had a headache during the day, along with the chest tightness that he had this morning. I sure hope he is not getting sick. Especially since our insurance from Dave (the boys' stepdad and Misty's dad) ends on Tuesday. The boys are supposed to have Medi-Cal (state insurance) after that but who knows when it will be processed? I applied 9 days ago and so far not a word. I was assured "well it will be retroactive", which helps for hospitalizations but doesn't really help much for prescriptions, etc. The idea of being without insurance, ESPECIALLY with Ricky, scares me to death.
I guess I just have to trust that things will be okay.
Ricky today...
Today I got to sleep in a little bit, because Misty is with her daddy for the weekend. When I got up, Ricky was sitting on the couch watching TV, doing this gaspy, yawny thing he does when he's not getting enough air. I asked him how he was feeling and he said that his chest was tight. Yep, time for his breathing treatment. So far that seems to have helped, but even just this little bit of trouble this morning has reminded me that things will never be easy, and that this disease SUCKS.
For now he is fine. And we just go day by day and take things as they come. I hate that life is uncertain, but I have come to realize that I need to give my kids the best life I can, and the most enriching experiences I can find, because we never know how much time we have left. Does that sound morbid?
The picture with this entry is of Ricky (in yellow) playing with some littler kids at the beach last night. We went to a geocaching event with a bonfire and s'mores. Ricky and Andrew both love playing in the sand. Ricky had some issues with the other kids... He has some social skills problems and they ended up becoming a big issue yesterday. I told him, though, that even though I was upset with his behavior, I will always love him just the way he is. He's my boy.
For now he is fine. And we just go day by day and take things as they come. I hate that life is uncertain, but I have come to realize that I need to give my kids the best life I can, and the most enriching experiences I can find, because we never know how much time we have left. Does that sound morbid?
The picture with this entry is of Ricky (in yellow) playing with some littler kids at the beach last night. We went to a geocaching event with a bonfire and s'mores. Ricky and Andrew both love playing in the sand. Ricky had some issues with the other kids... He has some social skills problems and they ended up becoming a big issue yesterday. I told him, though, that even though I was upset with his behavior, I will always love him just the way he is. He's my boy.
Wednesday, September 24, 2008
eye doctor appointment
Today Misty and I got Ricky from school and took him to his ophthamology appointment up at Stanford. I called the transportation department at least an hour before school was going to get out and canceled Ricky's bus. I also called and talked to the classroom aide and told him that I was picking Ricky up. Nonetheless, I got there and the classroom was deserted and Ricky was on the bus! It's a good thing his driver saw me and didn't leave, or I would have missed him! Apparently the dispatcher and the teacher had not passed on the message to anyone. Grr.
Anyway, we headed up to the eye appointment. We got there a little before the appointment, which was scheduled for 3:45. They warned me that she was running about 15 minutes behind, and we did get called in at 4. The technician did some preliminary examination and testing and administered the dilation drops (ick) and said we should sit in the waiting room for 20 min.
20 minutes turned into half an hour... And then an hour! We finally went back again after 5! The doctor then didn't even come into the exam room til after 5:30, apologizing profusely. It's a good thing that she's a great doctor, or I would have been more annoyed. She examined him and determined that his prescription will be staying the same... I think it has been the same for 2 years now, but I may have lost track.
I mentioned the dizziness but she didn't think there was a connection. She thinks we need to pursue neuro and endocrine, which I had a feeling about anyway. She wrote him a note to excuse him from today's homework, because his eyes were dilated. Lucky kid. :) We go back in a year.
While we'd been waiting I'd visited the lab, right across the waiting room, to see if they could go ahead and do the labs that the gastroenterologist ordered, but it turns out that our medical group uses a different lab, so we'll have to go a different day. It's just as well, since for accurate results he really needs to be fasting (which with him is always SO much fun). They also can't draw it out of the port (not certified) so there's no point. I THINK that the lab down here will give me the vials and let me draw him from the port myself. So either I'll do that (because I can get the vials in advance and draw him first thing some morning so he doesn't have to wait around in their waiting room to be drawn, starving to DEATH -- he is so dramatic) or just let them draw from a vein sometime. He's just getting harder and harder to draw peripherally.
By the way, the picture you see with this post is a scan of a scrapbook page from the day that Ricky got his first glasses. He was all of 4.5 years old! You might be able to see he's a little cross-eyed... He had a lazy left eye, and that's still his weaker eye.
Anyway, we headed up to the eye appointment. We got there a little before the appointment, which was scheduled for 3:45. They warned me that she was running about 15 minutes behind, and we did get called in at 4. The technician did some preliminary examination and testing and administered the dilation drops (ick) and said we should sit in the waiting room for 20 min.
20 minutes turned into half an hour... And then an hour! We finally went back again after 5! The doctor then didn't even come into the exam room til after 5:30, apologizing profusely. It's a good thing that she's a great doctor, or I would have been more annoyed. She examined him and determined that his prescription will be staying the same... I think it has been the same for 2 years now, but I may have lost track.
I mentioned the dizziness but she didn't think there was a connection. She thinks we need to pursue neuro and endocrine, which I had a feeling about anyway. She wrote him a note to excuse him from today's homework, because his eyes were dilated. Lucky kid. :) We go back in a year.
While we'd been waiting I'd visited the lab, right across the waiting room, to see if they could go ahead and do the labs that the gastroenterologist ordered, but it turns out that our medical group uses a different lab, so we'll have to go a different day. It's just as well, since for accurate results he really needs to be fasting (which with him is always SO much fun). They also can't draw it out of the port (not certified) so there's no point. I THINK that the lab down here will give me the vials and let me draw him from the port myself. So either I'll do that (because I can get the vials in advance and draw him first thing some morning so he doesn't have to wait around in their waiting room to be drawn, starving to DEATH -- he is so dramatic) or just let them draw from a vein sometime. He's just getting harder and harder to draw peripherally.
By the way, the picture you see with this post is a scan of a scrapbook page from the day that Ricky got his first glasses. He was all of 4.5 years old! You might be able to see he's a little cross-eyed... He had a lazy left eye, and that's still his weaker eye.
Monday, September 22, 2008
Ricky & soccer
Yesterday was Ricky's second soccer day this season. He actually missed the first day, two weeks ago, because I was working.
Ricky plays in VIP soccer, which, according to the AYSO website, "...provides a quality soccer experience for children and adults whose physical or mental disabilities make it difficult to successfully participate on mainstream teams."
Many of the kids on Ricky's teams have been on the autism spectrum. He has also played with kids with spina bifida (with their walkers!), Down Syndrome, severe ADHD, and mild to moderate retardation, as well as a visually impaired child.
The teams are co-ed but grouped by age and ability. Ricky's abilities are very good as far as the scoccer part goes, but he does have some frustrations with some of the rules, etc. His main impairment which would not make him suitable for a regular team is his energy level. When the kids run around the field to warm up, for example, he cannot keep up and ends up walking, due to his lung capacity. He is also a little awkward, which would probably be a problem in regular soccer.
So, every Sunday at 1:30 we go to the field and Ricky practices with his team. Each player has a "buddy" who assist the player with playing and getting involved in the game. The buddies are pre-teens, teens, and adults who volunteer their time. They and the volunteer coach ensure that each child has the opportunity to score in the game and to play various positions. Ricky prefers goalie, possibly because he doesn't have to run around as much. He takes pride in his position as goalie and takes it very seriously!
The first season, Ricky was at first on a team with some profoundly disabled kids. They moved him to a different team with higher-abled kids. Last year, he was on an appropriate team. This time around, I think he's on the wrong team again... The kids on his team have pretty serious autism and other disabilities, and in the next field over there is a team that I think would be more appropriate. If his coach doesn't decide to change him over, I might say something soon and get him changed over myself. I think he gets frustrated with the amount of help needed by the kids he's currently playing with. We'll see what happens. :)
Ricky plays in VIP soccer, which, according to the AYSO website, "...provides a quality soccer experience for children and adults whose physical or mental disabilities make it difficult to successfully participate on mainstream teams."
Many of the kids on Ricky's teams have been on the autism spectrum. He has also played with kids with spina bifida (with their walkers!), Down Syndrome, severe ADHD, and mild to moderate retardation, as well as a visually impaired child.
The teams are co-ed but grouped by age and ability. Ricky's abilities are very good as far as the scoccer part goes, but he does have some frustrations with some of the rules, etc. His main impairment which would not make him suitable for a regular team is his energy level. When the kids run around the field to warm up, for example, he cannot keep up and ends up walking, due to his lung capacity. He is also a little awkward, which would probably be a problem in regular soccer.
So, every Sunday at 1:30 we go to the field and Ricky practices with his team. Each player has a "buddy" who assist the player with playing and getting involved in the game. The buddies are pre-teens, teens, and adults who volunteer their time. They and the volunteer coach ensure that each child has the opportunity to score in the game and to play various positions. Ricky prefers goalie, possibly because he doesn't have to run around as much. He takes pride in his position as goalie and takes it very seriously!
The first season, Ricky was at first on a team with some profoundly disabled kids. They moved him to a different team with higher-abled kids. Last year, he was on an appropriate team. This time around, I think he's on the wrong team again... The kids on his team have pretty serious autism and other disabilities, and in the next field over there is a team that I think would be more appropriate. If his coach doesn't decide to change him over, I might say something soon and get him changed over myself. I think he gets frustrated with the amount of help needed by the kids he's currently playing with. We'll see what happens. :)
Sunday, September 21, 2008
worried about Ricky...
It's probably a minor thing, who knows? But Ricky's dizziness has continued. He has had this going on for at least a year and no one has been able to figure out why. He gets so dizzy that he has to sit down. Sometimes it's accompanied by a headache. Sitting down and putting his head down sometimes helps it; sometimes it doesn't. He has had every possible blood test from the pulmonlogist, gastroenterologist, psychiatrist, and endocrinologist. When he was inpatient, they fiddled with some of his meds. The latest thing is that the neurologist upped his seizure med just in case these "spells" were complex partial seizures.
But nothing has worked. The med changes have not accomplished anything. I'm starting to wonder if he's having vestibular issues from the TOBI (inhaled antibiotic) that he takes. To me, the spells he is having don't sound like vertigo or vestibular issues, but it's hard to tell because maybe he's just not describing them accurately. I often test his blood sugar when this happens. Once or twice his blood sugar has been low, but usually it's spot-on normal.
We are seeing the psychiatrist on Monday, and the ophthamologist on Wednesday. I'll bring it up to both of them. Next step will be the pulmonologist again to see if she has any ideas. It's starting to scare me, and it definitely bothers him.
But nothing has worked. The med changes have not accomplished anything. I'm starting to wonder if he's having vestibular issues from the TOBI (inhaled antibiotic) that he takes. To me, the spells he is having don't sound like vertigo or vestibular issues, but it's hard to tell because maybe he's just not describing them accurately. I often test his blood sugar when this happens. Once or twice his blood sugar has been low, but usually it's spot-on normal.
We are seeing the psychiatrist on Monday, and the ophthamologist on Wednesday. I'll bring it up to both of them. Next step will be the pulmonologist again to see if she has any ideas. It's starting to scare me, and it definitely bothers him.
Thursday, September 18, 2008
a visit to the gastroenterologist
Today we went to the gastroenterologist. Ricky gained several pounds! He is up over 90 pounds again! Go Ricky! However, he is the same height (and has been for three years now). So we discussed that a little bit. She felt a good bit of poop in his bowel, which has been a chronic problem, and encouraged me to give him mag citrate and an enema this weekend. Pooooor Ricky. But we don't want it to get worse because that can lead to a serious bowel obstruction, hospitalization, and even surgery. :(
It has also been four years since he had a DEXA scan (bone scan to check to make sure he is absorbing enough calcium and that the steroids he takes periodically haven't affected his bones) so he needs to do that, but they're not going to be able to put in the authorization until after we get the kids onto Healthy Families (a form of state-funded health insurance), since the kids lose their insurance at the end of this month.
I also told the doc about the divorce, and she seemed sorry to hear it. She has been Ricky's GI doc since he was in the NICU, so she has followed the whole darn saga of the past almost-13 years.
She gave me a lab slip for Ricky to get a bunch of blood tests. We'll have to try to do that before the end of the month.
We go back to see her in 3 months.
It has also been four years since he had a DEXA scan (bone scan to check to make sure he is absorbing enough calcium and that the steroids he takes periodically haven't affected his bones) so he needs to do that, but they're not going to be able to put in the authorization until after we get the kids onto Healthy Families (a form of state-funded health insurance), since the kids lose their insurance at the end of this month.
I also told the doc about the divorce, and she seemed sorry to hear it. She has been Ricky's GI doc since he was in the NICU, so she has followed the whole darn saga of the past almost-13 years.
She gave me a lab slip for Ricky to get a bunch of blood tests. We'll have to try to do that before the end of the month.
We go back to see her in 3 months.
Saturday, August 30, 2008
Update
Hi everyone! I'm happy to report that Ricky has been doing much better since his course of IVs followed by oral antibiotics in July. He did develop a sinus infection this week, but it seems to be clearing up with the help of oral antibiotics.
Earlier this month, Ricky went to bipolar camp and had a great time. This time, he even tried the rock-climbing wall, zip line, and ropes course -- which he'd been afraid to do in previous years! Everyone at the camp had so many great things to say about him -- it was quite gratifying.
Ricky and his brother both started school this week and are settling back into the routine and doing well. Ricky is now in seventh grade (!) and has one period of elective (ceramics), a period of PE, and the rest of the day in the special day class. He loves every minute of it -- go figure! Can you believe he'll be 13 in November? A teenager!
I'm doing okay as a single mom. The kids don't seem to mind it, even though I spend part of every day running around like the proverbial chicken. Misty is having her first overnight visit with her dad this weekend, and she seemed excited about it. Guess we will see how it goes!
Thank you all for your continued support!
Earlier this month, Ricky went to bipolar camp and had a great time. This time, he even tried the rock-climbing wall, zip line, and ropes course -- which he'd been afraid to do in previous years! Everyone at the camp had so many great things to say about him -- it was quite gratifying.
Ricky and his brother both started school this week and are settling back into the routine and doing well. Ricky is now in seventh grade (!) and has one period of elective (ceramics), a period of PE, and the rest of the day in the special day class. He loves every minute of it -- go figure! Can you believe he'll be 13 in November? A teenager!
I'm doing okay as a single mom. The kids don't seem to mind it, even though I spend part of every day running around like the proverbial chicken. Misty is having her first overnight visit with her dad this weekend, and she seemed excited about it. Guess we will see how it goes!
Thank you all for your continued support!
Monday, August 25, 2008
Ricky's first day of school
Today was the boys' first day of school and everything is going fine so far! Ricky has the same teacher in the same SDC class that he started in the spring, and the same kids are in there, so there were no surprises. I have high hopes for him this year! His first elective is ceramics and he will be in PE as well (this is something new that he started right near the end of the last school year). Yay Ricky!
Sunday, August 17, 2008
vacation
Ricky, as it turned out, was on IV antibiotics at home for three weeks followed by two weeks of a very powerful oral antibiotic, Rifampin, which threw his bipolar disorder out of whack. So I had to up some of his Seroquel (bipolar med) to even him out.
At the end of July we went to San Diego with Dave's family. We went to the beach a few times and also to Sea World on two different days, and it was a great time. We really needed the time away after Ricky being sick and the other thing that is going on...
This is the first time I have posted this here -- Dave and I are getting divorced. He moved out on August 9. The kids and I are doing all right. Misty had her first visit with him today, just a few hours, and did fine. Somehow we'll make it on our own. We have a lot of support from my mom and from friends.
At the end of July we went to San Diego with Dave's family. We went to the beach a few times and also to Sea World on two different days, and it was a great time. We really needed the time away after Ricky being sick and the other thing that is going on...
This is the first time I have posted this here -- Dave and I are getting divorced. He moved out on August 9. The kids and I are doing all right. Misty had her first visit with him today, just a few hours, and did fine. Somehow we'll make it on our own. We have a lot of support from my mom and from friends.
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