Ricky's still on for bipolar camp August 12-14. We are so excited! At the same time I am nervous but hoping things go well. :)
Ricky had a hard time at day care yesterday and was grounded yesterday evening and today. I'm a bit worried because Friday is his last day of summer school and then he'll be at day care all day every day until school starts. I hope he does all right.
I found out yesterday that Ricky will be starting back to school on August 23. That's the earliest either of the boys has started school. Usually they start back right before Labor Day or right after.
I found out yesterday that Ricky haa finally been approved for his Make a Wish wish, a Disney cruise that we hope to take during Spring Break 2006. We are all very excited. I looked into when Spring Break will be and guess what... Andrew's is the week before Easter and Ricky's is the week after. So one of them is going to have to miss school. Grrr. Well, this is a once in a lifetime thing, right?
Wednesday, August 3, 2005
Tuesday, July 12, 2005
Yesterday Dave took Ricky to have two of his lingering baby teeth pulled. He did totally fine! He is so proud of his teeth, carrying them around and showing them to everyone. Last night the tooth fairy (ahem) forgot to come. Hopefully tonight she comes.
Today I was home as Dave was working. I took Ricky to the gastroenterologist this morning, an appointment I made yesterday because I was concerned about his swollen belly and puffy face. Well, he is still weighing in at 85 lb. and the doc was totally unconcerned about the belly... It was soft. She was quite pleased with the weight and even told us for the first time ever that he should not have nutritional supplements. Wow! His BMI is 20; his weight is 90th %ile; and his height is 80th %ile. Holy moley! This is great news for someone with CF, almost unthinkable. She did order a blood draw (which we did today) and a belly x-ray (which we'll do tomorrow) just to confirm that things arer okay. I left that appointment with a huge smile on my face, let me tell you.
Today I was home as Dave was working. I took Ricky to the gastroenterologist this morning, an appointment I made yesterday because I was concerned about his swollen belly and puffy face. Well, he is still weighing in at 85 lb. and the doc was totally unconcerned about the belly... It was soft. She was quite pleased with the weight and even told us for the first time ever that he should not have nutritional supplements. Wow! His BMI is 20; his weight is 90th %ile; and his height is 80th %ile. Holy moley! This is great news for someone with CF, almost unthinkable. She did order a blood draw (which we did today) and a belly x-ray (which we'll do tomorrow) just to confirm that things arer okay. I left that appointment with a huge smile on my face, let me tell you.
Friday, July 1, 2005
Ricky is sick. He has had a stuffy nose for a few days and yesterday he started to sound nasally and appeared flushed.
Today I gave him Tylenol and sent him to school, but I barely got through one training at work when the teacher called to say that Ricky appeared feverish and was lethargic. When I picked him up he was sleeping and had a headache.
We went to the pediatrician. First he pulled an almost-marble-sized block of wax out of Ricky's right ear and then examined him. His lung sounded fine but his sinuses and the back of his throat were totally gummed up with thick drippy mucus (I know you wanted that visual, friends!).
The pedi called the CF doc who told him that there is really no good anitibiotic to treat these sinus things and that Ricky needed his sinuses flushed out with tobramycin, by an ENT doc. I and the pedi's nurse each called the ENT clinic and were told that they have two docs off today and no appointments available.
This really made the pediatrician mad and he called the CF doc again. She was going to walk over to ENT and see if she could get someone to see Ricky. The pedi sent us home and was going to call us later to tell us what to do. That was about an hour and a half ago.
Today I gave him Tylenol and sent him to school, but I barely got through one training at work when the teacher called to say that Ricky appeared feverish and was lethargic. When I picked him up he was sleeping and had a headache.
We went to the pediatrician. First he pulled an almost-marble-sized block of wax out of Ricky's right ear and then examined him. His lung sounded fine but his sinuses and the back of his throat were totally gummed up with thick drippy mucus (I know you wanted that visual, friends!).
The pedi called the CF doc who told him that there is really no good anitibiotic to treat these sinus things and that Ricky needed his sinuses flushed out with tobramycin, by an ENT doc. I and the pedi's nurse each called the ENT clinic and were told that they have two docs off today and no appointments available.
This really made the pediatrician mad and he called the CF doc again. She was going to walk over to ENT and see if she could get someone to see Ricky. The pedi sent us home and was going to call us later to tell us what to do. That was about an hour and a half ago.
Wednesday, June 8, 2005
A woman from Ricky's orthodontist's office called to go over the plan for his treatment. As it turns out, after reviewing the x-rays, the orthodontist has decided Ricky needs four (was six, but Ricky lost two of them last week) lazy baby teeth pulled and to come back in six months to decide what to do (hopefully by then he'll have grown some more permanent teeth). They're sending a referral for the extractions to the pedi dentist, who should be calling me for an appointment. I had these same teeth pulled out when I was approximately the same age... Same "extreme crowding" problem...
Tuesday, April 12, 2005
Andrew and I did go up to LPCH to get Ricky out of the hospital. From the time the doctor came to let us know Ricky would be going home, to the time we actually walked out the door was FIVE HOURS. That's how long it took for everyone to write up their orders, paperwork, etc. But anyway, we are home.
He'll be continuing on prednisone and an antibiotic for the next couple of weeks, and will start back on his TOBI inhaled antibiotic for a while too. He's in great spirits and so glad to be home.
After the boys and I got home from the hospital, Dave and I took them to Build A Bear Factory to get their own bears. They already have some, but they went with other people to get them so this was the first time I'd had the experience. It was really fun! Ricky got a black bear in army camoflauge and Andrew got a little tan colored (hypoallergenic, too) bear with a soccer outfit (complete will ball and shinguards -- do bears have shins?).
He'll be continuing on prednisone and an antibiotic for the next couple of weeks, and will start back on his TOBI inhaled antibiotic for a while too. He's in great spirits and so glad to be home.
After the boys and I got home from the hospital, Dave and I took them to Build A Bear Factory to get their own bears. They already have some, but they went with other people to get them so this was the first time I'd had the experience. It was really fun! Ricky got a black bear in army camoflauge and Andrew got a little tan colored (hypoallergenic, too) bear with a soccer outfit (complete will ball and shinguards -- do bears have shins?).
Monday, April 11, 2005
We spent a great deal of time with Ricky up at the hospital. On Saturday Dave, Andrew and I went to dinner with my mom and her best friend from high school, who was visiting from Los Angeles. On Sunday, Dave, Andrew and I spent some time at Community Day at Stanford, doing some fun activities and crafts and also watching some performing arts put on by Stanford students. It was quite fun!
Ricky continues to improve! On Saturday he and other patients were visited by Pet Assisted Therapy Services. Some really cute Polaroid pictures were taken and I'll scan and post those when Ricky gets home (he has the pictures with him at the hospital). Andrew also visited with a Saint Bernard from PATS at Community Day and I have a picture from there as well.
Anyway, it's planned that Ricky will have spirometry today or tomorrow and will come home tomorrow if things go well. Hooray!
Ricky in his hospital room. This is one of my all time favorite pictures of him.
Ricky continues to improve! On Saturday he and other patients were visited by Pet Assisted Therapy Services. Some really cute Polaroid pictures were taken and I'll scan and post those when Ricky gets home (he has the pictures with him at the hospital). Andrew also visited with a Saint Bernard from PATS at Community Day and I have a picture from there as well.
Anyway, it's planned that Ricky will have spirometry today or tomorrow and will come home tomorrow if things go well. Hooray!
Ricky in his hospital room. This is one of my all time favorite pictures of him.
Friday, April 8, 2005
Dave went to see Ricky today. I did not get to see him. :(
Ricky was apparently exceptionally well-behaved today. He even did his sinus flushes without complaint!
Dr. W told Dave that Ricky will have spirometry on Monday or Tuesday, and this will determine whether he really goes home on Tuesday. As long as the scores are better than the other day, he will go home. If they are worse, he will stay for a total of 14 days. Argh! Such suspense!
I work Monday, and then I'm off the rest of next week. Yay!
Ricky was apparently exceptionally well-behaved today. He even did his sinus flushes without complaint!
Dr. W told Dave that Ricky will have spirometry on Monday or Tuesday, and this will determine whether he really goes home on Tuesday. As long as the scores are better than the other day, he will go home. If they are worse, he will stay for a total of 14 days. Argh! Such suspense!
I work Monday, and then I'm off the rest of next week. Yay!
Thursday, April 7, 2005
As I expected, the pulmonologist (Dr. W) and the ENT (Dr. C) decided in their meeting today not to do surgery on Ricky. While he's congested and infected right now, the sinuses have not been making his lungs significantly sicker as they did five years ago prior to his previous (and only) sinus surgery. So we're going to just wait for now, and take him back to the ENT clinic in the summertime after the usual colds and bacterial infections have calmed down.
This also means no PICC line placement tomorrow. He'll stay in peripheral IVs until he goes home.
The interesting thing is that when I called the nurses' station, Dr. W actually answered the phone herself, because she'd paged someone and was waiting for a call back. So I talked to her directly after I'd hoped to be lucky enough even to speak with Ricky's nurse. Dr. W is really nice. I almost wish we could switch to her as our pulmonologist (she's the one on the CF team who's covering this week). She told me that Dr. C was very dedicated to Ricky and spent a lot of time with him and she felt they'd made the right decision.
So, what this means is that Ricky can come home on Tuesday afternoon/evening. I am happy about him coming home after only a week.
So, yay, good news. :)
This also means no PICC line placement tomorrow. He'll stay in peripheral IVs until he goes home.
The interesting thing is that when I called the nurses' station, Dr. W actually answered the phone herself, because she'd paged someone and was waiting for a call back. So I talked to her directly after I'd hoped to be lucky enough even to speak with Ricky's nurse. Dr. W is really nice. I almost wish we could switch to her as our pulmonologist (she's the one on the CF team who's covering this week). She told me that Dr. C was very dedicated to Ricky and spent a lot of time with him and she felt they'd made the right decision.
So, what this means is that Ricky can come home on Tuesday afternoon/evening. I am happy about him coming home after only a week.
So, yay, good news. :)
I did not update last night because my mouth was so sore. I went to the dentist to get my permanent crown seated (after getting a cleaning). It took TWO AND A HALF VIALS of lidocaine (I take it that's a lot) and every darn thing was numb EXCEPT for the tooth that was having the crown seated. It was pure torture. They finally resorted to giving me nitrous oxide, which they rarely use, and it STILL hurt. The nitrous made me care a little less but it still hurt. I finally got out of there three hours after I arrived, and didn't get up to see Ricky. :( The good news is that today I'm feeling fine.
About Ricky:
The ENT came in and scoped Ricky's sinuses (while Dave and Andrew were there). Ricky was actually really good for this (amazing!). The ENT saw lots of pus up on the right side, and said that there had also been lots of pus in the ethmoid and maxillary sinuses on the CT scan, but that he rarely saw a CF kid's CT that did not have lots of pus. So the debate is whether to do sinus surgery on Ricky while he's in the hospital. The last time he had sinus surgery was five years ago, and at that time it was thought that he wouldn't go another year without having another sinus surgery. So he's gone a long time. They would do the surgery during this hospitalization if the pulmonologist feels that sinus problems are adversely affecting Ricky's health, such as causing more lung infections. In truth, they really are not, so my bet is that the ENT and pulmonologist will decide not to do the surgery. We'll find out later today, after they meet and review the tests etc.
After all that NPO nonsense, Ricky didn't even get his PICC line yesterday. The PICC team finally came in the afternoon to examine him, and he battled them even over the ultrasound they were using to peek at his veins to find a good one. They determined that it would not be appropriate to place the PICC as planned (under light sedation) but rather under heavy sedation, which as I understand it is the next thing to being knocked out entirely. The next opportunity to place a line like this is Friday, and he's scheduled... But it's thought that he might get out by next Wednesday, in which case it'd probably better to keep him in peripheral lines and skip the PICC. But if it's decided that he's going to have sinus surgery, we'll keep the PICC appointment. At least that's how I understood it.
Ricky actually didn't have his chest x-ray until after Dave got there. The CNA took Ricky down for this and apparently he froze up in the hallway outside the x-ray room, refusing to go in and not telling anyone what was wrong. So Dave was called and he threatened Ricky with losing his allowance, which always works, and Ricky did the chest x-ray. The doctor told Dave that the chest x-ray was actually really good. When I talked to a resident on the phone later in the evening, she mentioned a small spot of pleural effusion (another link here) in the left lung, which they were not too worried about. Reading about this condition really scared me (and also just helped me to realize that it might be the cause of Ricky's pain upon breathing in), but she said the spot was small enough that they wouldn't consider draining it. It apparently happens in CF lungs or in lungs that are just sick in general.
Spirometry, for those who don't know, is a test where a person blows hard into a machine that measures lung capacity and strength. Ricky had this test yesterday and did fairly well. Some of his numbers were higher than the last time he had it (we last went about a month ago if I recall correctly) and some were lower. Overall, not too worrisome.
Ricky's blood tests are so far coming back normal. We're still waiting for the IgE level, which will show if he might be having yet another problem with allergic reaction to mold that might be causing all of this.
There was also some confusion over meds. One of the psych meds Ricky takes is called guanfacine. The doctor also ordered guiafenesin (cough syrup -- in CF kids it's used to thin the mucus) which apparently totally confused the nurse. But I believe they worked it out.
Today I'm off work at 2:30 to come home and meet the bus. Then Andrew and I will go up and see Ricky and will also find out what the plan is.
And that's all for now. Whew.
About Ricky:
The ENT came in and scoped Ricky's sinuses (while Dave and Andrew were there). Ricky was actually really good for this (amazing!). The ENT saw lots of pus up on the right side, and said that there had also been lots of pus in the ethmoid and maxillary sinuses on the CT scan, but that he rarely saw a CF kid's CT that did not have lots of pus. So the debate is whether to do sinus surgery on Ricky while he's in the hospital. The last time he had sinus surgery was five years ago, and at that time it was thought that he wouldn't go another year without having another sinus surgery. So he's gone a long time. They would do the surgery during this hospitalization if the pulmonologist feels that sinus problems are adversely affecting Ricky's health, such as causing more lung infections. In truth, they really are not, so my bet is that the ENT and pulmonologist will decide not to do the surgery. We'll find out later today, after they meet and review the tests etc.
After all that NPO nonsense, Ricky didn't even get his PICC line yesterday. The PICC team finally came in the afternoon to examine him, and he battled them even over the ultrasound they were using to peek at his veins to find a good one. They determined that it would not be appropriate to place the PICC as planned (under light sedation) but rather under heavy sedation, which as I understand it is the next thing to being knocked out entirely. The next opportunity to place a line like this is Friday, and he's scheduled... But it's thought that he might get out by next Wednesday, in which case it'd probably better to keep him in peripheral lines and skip the PICC. But if it's decided that he's going to have sinus surgery, we'll keep the PICC appointment. At least that's how I understood it.
Ricky actually didn't have his chest x-ray until after Dave got there. The CNA took Ricky down for this and apparently he froze up in the hallway outside the x-ray room, refusing to go in and not telling anyone what was wrong. So Dave was called and he threatened Ricky with losing his allowance, which always works, and Ricky did the chest x-ray. The doctor told Dave that the chest x-ray was actually really good. When I talked to a resident on the phone later in the evening, she mentioned a small spot of pleural effusion (another link here) in the left lung, which they were not too worried about. Reading about this condition really scared me (and also just helped me to realize that it might be the cause of Ricky's pain upon breathing in), but she said the spot was small enough that they wouldn't consider draining it. It apparently happens in CF lungs or in lungs that are just sick in general.
Spirometry, for those who don't know, is a test where a person blows hard into a machine that measures lung capacity and strength. Ricky had this test yesterday and did fairly well. Some of his numbers were higher than the last time he had it (we last went about a month ago if I recall correctly) and some were lower. Overall, not too worrisome.
Ricky's blood tests are so far coming back normal. We're still waiting for the IgE level, which will show if he might be having yet another problem with allergic reaction to mold that might be causing all of this.
There was also some confusion over meds. One of the psych meds Ricky takes is called guanfacine. The doctor also ordered guiafenesin (cough syrup -- in CF kids it's used to thin the mucus) which apparently totally confused the nurse. But I believe they worked it out.
Today I'm off work at 2:30 to come home and meet the bus. Then Andrew and I will go up and see Ricky and will also find out what the plan is.
And that's all for now. Whew.
Wednesday, April 6, 2005
Just talked to a nurse (not Ricky's nurse -- she was on her lunch) and Ricky STILL does not have his PICC line. This means he has been NPO (nothing by mouth) all day. They are still planning on doing this PICC line today but it's taking forever. Dave and Andy are on their way up there and Dave's going to find out what's going on. This poor kid -- he usually eats almost constantly, especially in he hospital. This has got to be tough for him.
Looks like I might not go up there after my dentist appointment. By that time it'll be pretty late so I might just stay down here. We'll see.
Looks like I might not go up there after my dentist appointment. By that time it'll be pretty late so I might just stay down here. We'll see.
I called a little while ago and spoke with Ricky's nurse, whose name is Becky (that's gotta be good luck!). She said that he is definitely going to have the PICC line put in this morning, and also he'll have a chest x-ray and sinus CT. Whew! Poor kid! The first one is the only thing that he might misbehave for, but luckily he'll be pretty heavily sedated.
She said he was happy and talkative, and wasn't too upset about being NPO (nothing by mouth, because of the PICC line sedation)... at least not yet. ;)
She said he was happy and talkative, and wasn't too upset about being NPO (nothing by mouth, because of the PICC line sedation)... at least not yet. ;)
I left Ricky just before 8 last night and he was as settled in as he was going to be. To my surprise, he'd totally battled the nurses who were trying to put in his IV. He lately has been very good about these things. My theory is that the simply wasn't feeling well. Finally a nurse from the vascular access department came up and placed the IV after Ricky had calmed down a bit.
When I was leaving, his meds still had not arrived, so I gave him meds from home since he was nearly asleep and it would be impossible to wake him up to take meds later. I can't believe how slow that pharmacy is -- we'd been there 6 hours and they still hadn't sent the meds up.
This morning Ricky should be having his PICC line (this is a link to a cancer site, but the idea is the same) placed. He's terrified about this prospect, as last time he was in (in October) it took three hours to place it because of a problem with the arm they started with. I reminded the vascular nurses about this so they could check the chart and find out which arm was the better one. Neither Dave or I will be able to be there for this, but Ricky will be heavily sedated (which unfortunately means he won't be allowed to eat this morning -- he is NOT going to be happy about that).
I am going to work this morning. Dave's off, but he has a physical with his doctor (he's a new patient, so it's a long appointment and he'd have to wait a couple of months to get another one if he cancelled) at 10:15. After that he'll wait for Andrew to get home on the bus (about 2:00) and then they'll go up to the hospital. I am off work at 2:30 but then I'm going to get my permanent crown placed and have a cleaning. I'd rather skip it and go to Ricky, but given how much this temporary has been bothering me, I'd really better do it. So after that I'll go to Ricky (and reunite with Dave and Andrew) and we'll see what happens from there.
It's weird not having Ricky at home. Of course it makes me sad, but it's also strange to be able to sleep in a bit, not having to get him up to do his breathing treatments in the morning.
Last night I cancelled the hotel reservations for our trip to Morro Bay/Hearst Castle, since Ricky will be in the hospital for at least a week, if not more. Today I'm going to cancel the Hearst Castle tickets. There is supposed to be a service charge for cancellation, but I'm going to attempt to get them to cancel it given the circumstances.
The pulmonologist is so far saying he'll be in at least a week.
Guess that's it for now.
When I was leaving, his meds still had not arrived, so I gave him meds from home since he was nearly asleep and it would be impossible to wake him up to take meds later. I can't believe how slow that pharmacy is -- we'd been there 6 hours and they still hadn't sent the meds up.
This morning Ricky should be having his PICC line (this is a link to a cancer site, but the idea is the same) placed. He's terrified about this prospect, as last time he was in (in October) it took three hours to place it because of a problem with the arm they started with. I reminded the vascular nurses about this so they could check the chart and find out which arm was the better one. Neither Dave or I will be able to be there for this, but Ricky will be heavily sedated (which unfortunately means he won't be allowed to eat this morning -- he is NOT going to be happy about that).
I am going to work this morning. Dave's off, but he has a physical with his doctor (he's a new patient, so it's a long appointment and he'd have to wait a couple of months to get another one if he cancelled) at 10:15. After that he'll wait for Andrew to get home on the bus (about 2:00) and then they'll go up to the hospital. I am off work at 2:30 but then I'm going to get my permanent crown placed and have a cleaning. I'd rather skip it and go to Ricky, but given how much this temporary has been bothering me, I'd really better do it. So after that I'll go to Ricky (and reunite with Dave and Andrew) and we'll see what happens from there.
It's weird not having Ricky at home. Of course it makes me sad, but it's also strange to be able to sleep in a bit, not having to get him up to do his breathing treatments in the morning.
Last night I cancelled the hotel reservations for our trip to Morro Bay/Hearst Castle, since Ricky will be in the hospital for at least a week, if not more. Today I'm going to cancel the Hearst Castle tickets. There is supposed to be a service charge for cancellation, but I'm going to attempt to get them to cancel it given the circumstances.
The pulmonologist is so far saying he'll be in at least a week.
Guess that's it for now.
Tuesday, April 5, 2005
The nurse returned my early morning call at 8 am and let me know that she'd informed the nursing supervisor that Ricky needs a bed. We are supposed to hear back from her when a bed becomes available. Four hours later and we are still waiting!
Ricky is doing okay. Still breathing with difficulty and coughing a lot (both of which he did all night too). We are watching endless episodes of "Fillmore" on Toon Disney...
Ricky is doing okay. Still breathing with difficulty and coughing a lot (both of which he did all night too). We are watching endless episodes of "Fillmore" on Toon Disney...
Monday, April 4, 2005
This morning, after keeping Ricky home from school because he wasn't feelong well, I took him to the pediatrician.
Well, at the pedi's his lungs were all crackly. She put him on Augmentin and Orapred (the latter, she gave him a dose of right away) and at my suggestion she sent us for a chest x-ray, after giving him an in-office breathing treatment.
After a 45 minute wait, during which Ricky fell asleep on me (he's really, really not feeling well), we had the chest x-ray. A while later the pedi called me and said that it showed bronchiectasis (duh) and infiltrates in the lower lobes of both lungs, the left one being worse. I had already called the CF clinic and left a message. The pedi got the fax # up there and was going to send the x-ray report.
A while later she called me back and said she'd spoken with the CF doc, who seemed to think the ilfiltrates were no big deal (!) and anyway, she stated, there are no available beds. I informed the pedi that I hadn't seen him this sick in years (working so hard to breathe and all) and she suggested we go to the ER.
I called Dave (my RN hubby) at work (after leaving my third message of the day for the CF nurse) and told him what was going on. He suggested we come to the unit he works at (different hospital) and check Ricky's oxygen saturation.
So we went there and Ricky's sat was 92, which is low for him but I guess not too low in the grand scheme of things. I finally got tired of leaving messages for the CF nurse and had her paged. She sounded irritated when she called me back and said, well, quite frankly, there are no beds. Give him fluids, keep him elevated when he sleeps, and do lots of breathing treatments. DUHHH. But thanks. She said sorry, we can't do anything else. If you are very worried tonight then take him to the ER. She said they already had one CF patient hanging out in the ER for treatment because of there being no beds.
I drove the rest of the way home feeling very grumpy, annoyed, and helpless. Meanwhile Ricky belly breathed all the way, looking miserable.
The CF nurse called back later and sounded a little less brusque. She told me the same treatment things and reemphasized that I should take him to the ER if he was worrying me.
So Ricky has eaten some, drunk some, and currently is passed out on the couch looking uncomfortable. I don't think either of us will be getting much sleep tonight, with me constantly looking in on him, and him struggling to breathe...
That's it in the way of an update for now...
Well, at the pedi's his lungs were all crackly. She put him on Augmentin and Orapred (the latter, she gave him a dose of right away) and at my suggestion she sent us for a chest x-ray, after giving him an in-office breathing treatment.
After a 45 minute wait, during which Ricky fell asleep on me (he's really, really not feeling well), we had the chest x-ray. A while later the pedi called me and said that it showed bronchiectasis (duh) and infiltrates in the lower lobes of both lungs, the left one being worse. I had already called the CF clinic and left a message. The pedi got the fax # up there and was going to send the x-ray report.
A while later she called me back and said she'd spoken with the CF doc, who seemed to think the ilfiltrates were no big deal (!) and anyway, she stated, there are no available beds. I informed the pedi that I hadn't seen him this sick in years (working so hard to breathe and all) and she suggested we go to the ER.
I called Dave (my RN hubby) at work (after leaving my third message of the day for the CF nurse) and told him what was going on. He suggested we come to the unit he works at (different hospital) and check Ricky's oxygen saturation.
So we went there and Ricky's sat was 92, which is low for him but I guess not too low in the grand scheme of things. I finally got tired of leaving messages for the CF nurse and had her paged. She sounded irritated when she called me back and said, well, quite frankly, there are no beds. Give him fluids, keep him elevated when he sleeps, and do lots of breathing treatments. DUHHH. But thanks. She said sorry, we can't do anything else. If you are very worried tonight then take him to the ER. She said they already had one CF patient hanging out in the ER for treatment because of there being no beds.
I drove the rest of the way home feeling very grumpy, annoyed, and helpless. Meanwhile Ricky belly breathed all the way, looking miserable.
The CF nurse called back later and sounded a little less brusque. She told me the same treatment things and reemphasized that I should take him to the ER if he was worrying me.
So Ricky has eaten some, drunk some, and currently is passed out on the couch looking uncomfortable. I don't think either of us will be getting much sleep tonight, with me constantly looking in on him, and him struggling to breathe...
That's it in the way of an update for now...
Ricky had had a runny nose all weekend and was feeling generally crummy (increased cough too) yesterday so I called the pedi pulmonologist on call and she called in a prescription for Bactrim for him. He's on it now.
This morning Ricky woke up complaining about his chest aching and being short of breath. And while he doesn't have a fever (he rarely does, even when very sick) I'm keeping him home -- mostly because he never complains and when he does it tends to be serious. I think I'll call the pediatrician and get an appointment to have him listened to and maybe get a chest x-ray. Hopefully it turns out to be nothing. Goodness, he just coughed and it sounded horrendous. Sigh!!!
This morning Ricky woke up complaining about his chest aching and being short of breath. And while he doesn't have a fever (he rarely does, even when very sick) I'm keeping him home -- mostly because he never complains and when he does it tends to be serious. I think I'll call the pediatrician and get an appointment to have him listened to and maybe get a chest x-ray. Hopefully it turns out to be nothing. Goodness, he just coughed and it sounded horrendous. Sigh!!!
Thursday, March 17, 2005
Today I took Ricky to the orthopedic surgeon. We'd been referred to him because of his turned in left foot. The doctor examined him only very briefly and then came up with a diagnosis that is actually quite positive: internal femoral torsion. Here's what the literature he gave me says:
"...Internal Femoral Torsion is caused by the inward rotation of the thigh bone, or femur. This problem can be very upsetting because it occurs at an older age and many children are aware that they have an awkward or different way of walking or running... A variety of treatment methods... Do not hasten the natural tendency toward improvement which generally occurs prior to the age of 12. By the age of 12, 95% of the children will have improved enough so that the condition is no longer noticeable... At the age of fifteen if a natural correction has not occurred there is the possibility of correcting the intoeing surgically."
Whew. :) Also, I got the results of Ricky's blood tests from last week. Everything was normal (!) and his IGE level (indicator of the level of allergy-causing mold growing in his lings) has continued to drop.
"...Internal Femoral Torsion is caused by the inward rotation of the thigh bone, or femur. This problem can be very upsetting because it occurs at an older age and many children are aware that they have an awkward or different way of walking or running... A variety of treatment methods... Do not hasten the natural tendency toward improvement which generally occurs prior to the age of 12. By the age of 12, 95% of the children will have improved enough so that the condition is no longer noticeable... At the age of fifteen if a natural correction has not occurred there is the possibility of correcting the intoeing surgically."
Whew. :) Also, I got the results of Ricky's blood tests from last week. Everything was normal (!) and his IGE level (indicator of the level of allergy-causing mold growing in his lings) has continued to drop.
Friday, February 18, 2005
I took Ricky up to Stanford to see his ophthamologist on Wednesday. We waited almost an hour to see her and then she saw him for only about 15 minutes.
Good news! No drops. And his prescription remains the same. (He has glasses due to farsightedness, astigmatism, and strabismus in his left eye that has been corrected using the glasses.)
While we were at the clinic building we also dropped by the CF clinic and got a new Acapella Choice, the new Acapella device. It's easier to clean than the previous version (Ricky's got cracked which is why we got a new one).
Also had a conversation with the respiratory therapist about the new ThAIRapy Vest, which is smaller, quiet, and easier to use. For $6,000 we can upgrade to the new machine (we have the old one, and we've been using it lately because of the Acapella being out of commission). We have insurance that covers durable medical equipment and the RT said I should conatct the Vest company to find out how to get this upgrade. I sent an email this morning.
Good news! No drops. And his prescription remains the same. (He has glasses due to farsightedness, astigmatism, and strabismus in his left eye that has been corrected using the glasses.)
While we were at the clinic building we also dropped by the CF clinic and got a new Acapella Choice, the new Acapella device. It's easier to clean than the previous version (Ricky's got cracked which is why we got a new one).
Also had a conversation with the respiratory therapist about the new ThAIRapy Vest, which is smaller, quiet, and easier to use. For $6,000 we can upgrade to the new machine (we have the old one, and we've been using it lately because of the Acapella being out of commission). We have insurance that covers durable medical equipment and the RT said I should conatct the Vest company to find out how to get this upgrade. I sent an email this morning.
Tuesday, February 8, 2005
Took Ricky to the clinic for spirometry today. It's somewhat better and somewhat worse than two weeks ago, depending on which part of the data you're looking at. He's going to continue on his new medication and in a month we are going back for more spirometry and another iGE level (that measures the allergic reaction in his blood). He had a blood draw today, a trough level for the new medication, and he did perfectly. I am so proud of him.
Sunday, February 6, 2005
We were out geocaching yesterday (www.geocaching.com if you don't know what it is) and were on a kind of a hilly hike. Suddenly Ricky started sitting down at every opportunity, being really quiet, etc. I asked him if he was okay. Dave asked him if he had a rage coming on (sometimes he gets really quiet when that is about to happen). He shook his head.
After we found the geocache, and were on our way back to the car (long hike though), he said he felt dizzy. I had him sit on a fallen tree and put his head between his legs. Seemed like he was having some breathing trouble too so I gave him a couple of puffs on the inhaler. When he got up, after a while, he said he was still dizzy and had a headache. Dave offered to piggyback him up the hill but he said he was okay. So we just walked really slowly up the hill and back to the car. He sat for a little while on another log next to the car, dizzy and headachey, and said he was really sleepy. Then he got into the car and felt a lot better within about 15 minutes.
Dave's theory (he's a nurse so he knows a little more about these things) is that Ricky, who has been a little sick (coughing and wheezing a lot more lately), had a O2 saturation drop from all the hiking, and got dizzy and headachey and tired from this. A little while later he was able to recover after resting.
This has never happened to Ricky before, so I know I sound kinda naive. :) It kinda worries me but I realize that if he's sick maybe we shouldn't do these long hikes (even though the exercise is good for him).
After we found the geocache, and were on our way back to the car (long hike though), he said he felt dizzy. I had him sit on a fallen tree and put his head between his legs. Seemed like he was having some breathing trouble too so I gave him a couple of puffs on the inhaler. When he got up, after a while, he said he was still dizzy and had a headache. Dave offered to piggyback him up the hill but he said he was okay. So we just walked really slowly up the hill and back to the car. He sat for a little while on another log next to the car, dizzy and headachey, and said he was really sleepy. Then he got into the car and felt a lot better within about 15 minutes.
Dave's theory (he's a nurse so he knows a little more about these things) is that Ricky, who has been a little sick (coughing and wheezing a lot more lately), had a O2 saturation drop from all the hiking, and got dizzy and headachey and tired from this. A little while later he was able to recover after resting.
This has never happened to Ricky before, so I know I sound kinda naive. :) It kinda worries me but I realize that if he's sick maybe we shouldn't do these long hikes (even though the exercise is good for him).
Thursday, February 3, 2005
As I mentioned the other day, Ricky has had a bit of a rough time of it lately with his CF.
Yesterday the CF nurse coordinator finally called me back and let me know that Ricky's IGE level (measures his allergic level -- usually a high number indicates he's reacting to mold in his lungs, such as aspergillus) has spiked over 500, which is the highest it's ever been. So the doctor wants Ricky to start taking Sporanox, an anti-fungal medication that he has taken in the past.
Two problems... 1. The insurance is balking at paying for this expensive medication (it's $290 for a 30 day supply, but that's actually a lot less than many of his other medications) and is requiring prior authorization. Luckily I have some left that's not expired, from when he was taking it before. 2. It is supposed to be taken at least 2 hours apart from any antacids. Ricky takes Prevacid in the morning and at night. So if he's going to take Sporanox twice a day that means he'll have to take the morning dose at school, a couple of hours after breakfast; and at bedtime, hopefully a couple of hours after dinner. I have put a call into the nurse about this.
Good news: If it's the fungus that's causing his problems, he hopefully won't end up in the hospital, since IV antibiotics wouldn't do a thing for him anyway. If we can nip it in the bud with anti-fungals (which he has responded to well in the past) we should be able to get through this.
He's quite a little trouper.
Yesterday the CF nurse coordinator finally called me back and let me know that Ricky's IGE level (measures his allergic level -- usually a high number indicates he's reacting to mold in his lungs, such as aspergillus) has spiked over 500, which is the highest it's ever been. So the doctor wants Ricky to start taking Sporanox, an anti-fungal medication that he has taken in the past.
Two problems... 1. The insurance is balking at paying for this expensive medication (it's $290 for a 30 day supply, but that's actually a lot less than many of his other medications) and is requiring prior authorization. Luckily I have some left that's not expired, from when he was taking it before. 2. It is supposed to be taken at least 2 hours apart from any antacids. Ricky takes Prevacid in the morning and at night. So if he's going to take Sporanox twice a day that means he'll have to take the morning dose at school, a couple of hours after breakfast; and at bedtime, hopefully a couple of hours after dinner. I have put a call into the nurse about this.
Good news: If it's the fungus that's causing his problems, he hopefully won't end up in the hospital, since IV antibiotics wouldn't do a thing for him anyway. If we can nip it in the bud with anti-fungals (which he has responded to well in the past) we should be able to get through this.
He's quite a little trouper.
Friday, January 28, 2005
I forgot to post about Ricky's clinic appointment on Tuesday.
First of all, good news: Ricky (9 years, 2 months old) is now 141.2 cm (4 ft 7 in) tall, which is 75-95%ile, and 33.5 kg (73.8 lb), which is 50-75%ile. This is outstanding for a kid with CF. To keep up the good work, we got a whole case of Nutrin with Fiber shakes.
Not so good news: His lung function is down (I am not sure of the exact numbers). So he is starting on an Advair inhaler and we are going back for spirometry (lung function testing) in two weeks. If it hasn't improved by then he'll have 2 more weeks of Tobi. After that, if still not improved, we're looking at IVs. I'm confident that he'll improve just fine, as he always has before!
He coughed up some mucus for culturing. Ricky also had blood drawn for an igE level (measures his allergic reactions -- we'd find out if he could be growing mold in his lungs). I'm proud to say that he was very brave.
Edit 1/29/05: I talked to the respiratory therapist last night and she said Ricky's FEV1 was 63%, down from 75% last time.
First of all, good news: Ricky (9 years, 2 months old) is now 141.2 cm (4 ft 7 in) tall, which is 75-95%ile, and 33.5 kg (73.8 lb), which is 50-75%ile. This is outstanding for a kid with CF. To keep up the good work, we got a whole case of Nutrin with Fiber shakes.
Not so good news: His lung function is down (I am not sure of the exact numbers). So he is starting on an Advair inhaler and we are going back for spirometry (lung function testing) in two weeks. If it hasn't improved by then he'll have 2 more weeks of Tobi. After that, if still not improved, we're looking at IVs. I'm confident that he'll improve just fine, as he always has before!
He coughed up some mucus for culturing. Ricky also had blood drawn for an igE level (measures his allergic reactions -- we'd find out if he could be growing mold in his lungs). I'm proud to say that he was very brave.
Edit 1/29/05: I talked to the respiratory therapist last night and she said Ricky's FEV1 was 63%, down from 75% last time.
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