We were contacted by a friend at the South Bay chapter of the Cystic Fibrosis Foundation earlier this week because of an event that was to happen today.
The first Bowl by the Bay is happening here in San Jose this Sunday. It's a football game between Fresno State and the Air Force Academy. The game organizers picked CFF as their charity of choice, and so they had Ricky and Andy and some other kids with CF and their siblings come to their press conference/party this morning.
They gave away TONS of stuffed animals, hats, watches, team programs, t-shirts, pennants, you name it! The boys got TONS of stuff and because Ricky was having a conversation with one of the Fresno players, Tim, #51, who is apparently one of the star players, tons of pictures and video were taken of the boys. We also got 6 really good tickets to the game!
I was actually interviewed by a guy from Fresno's Fox channel 26, and the interview will appear on their 10 o'clock news tonight. If anyone out there among our friends is from Fresno, or knows someone from there, could you tape the interview for us? It sure would be great. Please let me know! I think we might also be on the national Fox Sports Channel, so if anyone's able to see the coverage on there, we might be featured on there, and a tape would be great. Thank you so much!
We were overwhelmed with the generosity of these teams and organizers. The football players were so sweet with the boys. We got lots of pictures (Polaroid, taken by one of the organizer guys, and regular, which I took myself) which we'll put up on the family web page soon -- look for them. This was a terrific event and I just wish more of the CF community could have been there to enjoy it!
Friday, December 29, 2000
Saturday, December 23, 2000
Ricky's ibuprofen thing
I can't remember if I told you guys. Ricky's ibuprofen levels from his hospitalization came back this week as sub-therapeutic so they upped him and told us the dosage. It will be 550 mg twice a day. That's 5-1/2 teaspoons twice a day of Motrin or generic Motrin! As you can tell that is a ton of ibuprofen, and it seems dangerous. But they are sure this is the right dosage to bring down the inflammation in his lungs due to bronchiectasis -- so it is good new for us. I went out and bought two three packs of Kirkland ibuprofen at Costco this past week -- $7 per package. Still looking for Motrin coupons because Motrin comes in a bigger bottle if you get it at the right place. I think we'll be going through a 4 oz. bottle of this generic stuff every few days, so it could get expensive!
Tuesday, December 12, 2000
Ricky's two doctor appointments today
We saw two docs today, the lung doc and the ENT.
Lung doc, Dr. Conrad, says his lungs are sounding terrific, and his nose doesn't look too bad. He had gained 4 pounds in the hospital and has since (in 2 weeks) lost 2. Oh well, win some, "lose" some I guess. We talked about his bronchiectasis (bronchus inflammation). She thinks the ibuprofen therapy will help a lot with it. The levels (to determine the dosage, since it will be high level and we don't want to give him a toxic or stomach-irritating dose) should have been back by now, since they were drawn
15 days ago (they take 2 weeks) but since they aren't back yet, we should probably have the information within the next few days. We go back in 2 months (this is a change, it always used to be every 3 months, but I guess "advanced lung disease for his age" makes a difference). Oh, he also tried doing PFTs (puffing into a machine that measures breathing capacity, which asthmatics are familiar with) for the second time! He still can't puff long enough, just 3 seconds instead of 6 but we consider it PFTs-in-training.
We hung around the hospital and had lunch and then went to the ENT. We waited AN HOUR AND A HALF in the waiting room before we finally got in. Then waited 45 minutes in there until the nurse practitioner came in to see us. She wanted to see in his ears and there was too much wax so she wanted to clean it out... which majorly traumatized Ricky because he's been through so many medical procedures lately. I finally convinced her not to do it. After all we were not there about his ears. About 15 minutes later the ENT came in, he's the substitute for Dr. Messner, who is on sabbatical. I swear this guy is younger than me. He spent all of 10 minutes with us. He did a side by side comparison of Ricky's sinus CTs. Bottom line is, Ricky doesn't need surgery! His right maxillary sinus is very packed with stuff and polyps, but
every other cavity is fine! Hooray! The doc is reluctant to do surgery unless absolutely necessary because of the bronchiectasis (great) and it being risky to tube him. So we don't even need to go back unless he starts complaining of pain, pressure, etc. or the other sinuses get involved.
*doing a happy dance* Glad things are looking up finally...
Lung doc, Dr. Conrad, says his lungs are sounding terrific, and his nose doesn't look too bad. He had gained 4 pounds in the hospital and has since (in 2 weeks) lost 2. Oh well, win some, "lose" some I guess. We talked about his bronchiectasis (bronchus inflammation). She thinks the ibuprofen therapy will help a lot with it. The levels (to determine the dosage, since it will be high level and we don't want to give him a toxic or stomach-irritating dose) should have been back by now, since they were drawn
15 days ago (they take 2 weeks) but since they aren't back yet, we should probably have the information within the next few days. We go back in 2 months (this is a change, it always used to be every 3 months, but I guess "advanced lung disease for his age" makes a difference). Oh, he also tried doing PFTs (puffing into a machine that measures breathing capacity, which asthmatics are familiar with) for the second time! He still can't puff long enough, just 3 seconds instead of 6 but we consider it PFTs-in-training.
We hung around the hospital and had lunch and then went to the ENT. We waited AN HOUR AND A HALF in the waiting room before we finally got in. Then waited 45 minutes in there until the nurse practitioner came in to see us. She wanted to see in his ears and there was too much wax so she wanted to clean it out... which majorly traumatized Ricky because he's been through so many medical procedures lately. I finally convinced her not to do it. After all we were not there about his ears. About 15 minutes later the ENT came in, he's the substitute for Dr. Messner, who is on sabbatical. I swear this guy is younger than me. He spent all of 10 minutes with us. He did a side by side comparison of Ricky's sinus CTs. Bottom line is, Ricky doesn't need surgery! His right maxillary sinus is very packed with stuff and polyps, but
every other cavity is fine! Hooray! The doc is reluctant to do surgery unless absolutely necessary because of the bronchiectasis (great) and it being risky to tube him. So we don't even need to go back unless he starts complaining of pain, pressure, etc. or the other sinuses get involved.
*doing a happy dance* Glad things are looking up finally...
Thursday, December 7, 2000
Ugh!
Now Ricky has that flu thing that Andy had (Andy is now well, by the way). This of course is bad news for Ricky. He's already at 102.7 underarm temperature, and feeling crummy, with dark circles under his eyes and everything. At least we are almost to the weekend. Just got to find somewhere for him to be tomorrow as I really can't miss work (still in my first full week at this job). The flu sucks! Andy and now Ricky get it...
And they're the ones in this family who have had their flu shots! Argh!
Ah, well, this too shall pass...
And they're the ones in this family who have had their flu shots! Argh!
Ah, well, this too shall pass...
Tuesday, November 28, 2000
Ricky's home & update!
I've been putting off writing this note because while it also has lots of good news, it also has bad news. Some of it is very technical, so I apologize if it's too complicated for some of you! This is not to put you down or anything -- I just know that when it comes to Ricky's health I tend to talk in very technical terms. :) If you have any questions please feel free to email me.
I met with Dr. Conrad, Ricky's pulmonologist, on Sunday (Ricky's birthday), while he was still in the hospital. Here's what she said:
* He's going home on Pulmozyme (have to be 5 for insurance to pay for it). This is a drug that has come out since his birth. It is a special inhaled substance that actually uses enzymes to thin the secretions in the lungs.
* He has a secondary condition called broncheactasis which was found in a lung CT last Tueday. It is an inflammation/tightening of the large airways in the lungs.
* Ricky has advanced lung disease for his age. His sinuses have a lot to do with his problems.
* He is probably going on ibuprofen therapy for the inflammation in his lungs.
* Yesterday he had a pH probe test that tests for acid reflux. We found out he doesn't have reflux! He also had a sinus CT today that showed that he does have some sinus problems still.
We have appointments with the ENT (sinus doc) and pulmonologist (lung doc) two weeks from today. I imagine they're going to talk about sinus surgery sometime in the near future but I have some ideas for opening the sinuses up without surgery that I'm going to try between now and our appointments.
We got discharged today after lunch. They pulled Ricky's PICC line (special IV for those who don't know) which was really icky and neither he nor I was able to watch. We got discharge instructions and prescriptions and picked up our Pulmozyme at the pharmacy. And we were out of there!
We went right to the boys' preschool and picked up Andy. Ricky was really excited to see all of his friends and have snack with them. And he's resting well tonight. I don't understand it, in the hospital he was SO resistant to doing his ThAIRapy Vest, whereas back at home he's as amenable to it as ever.
SHEESH!
That's it for now...
I met with Dr. Conrad, Ricky's pulmonologist, on Sunday (Ricky's birthday), while he was still in the hospital. Here's what she said:
* He's going home on Pulmozyme (have to be 5 for insurance to pay for it). This is a drug that has come out since his birth. It is a special inhaled substance that actually uses enzymes to thin the secretions in the lungs.
* He has a secondary condition called broncheactasis which was found in a lung CT last Tueday. It is an inflammation/tightening of the large airways in the lungs.
* Ricky has advanced lung disease for his age. His sinuses have a lot to do with his problems.
* He is probably going on ibuprofen therapy for the inflammation in his lungs.
* Yesterday he had a pH probe test that tests for acid reflux. We found out he doesn't have reflux! He also had a sinus CT today that showed that he does have some sinus problems still.
We have appointments with the ENT (sinus doc) and pulmonologist (lung doc) two weeks from today. I imagine they're going to talk about sinus surgery sometime in the near future but I have some ideas for opening the sinuses up without surgery that I'm going to try between now and our appointments.
We got discharged today after lunch. They pulled Ricky's PICC line (special IV for those who don't know) which was really icky and neither he nor I was able to watch. We got discharge instructions and prescriptions and picked up our Pulmozyme at the pharmacy. And we were out of there!
We went right to the boys' preschool and picked up Andy. Ricky was really excited to see all of his friends and have snack with them. And he's resting well tonight. I don't understand it, in the hospital he was SO resistant to doing his ThAIRapy Vest, whereas back at home he's as amenable to it as ever.
SHEESH!
That's it for now...
Thursday, November 23, 2000
The hospital saga continues
The hospital saga continues. :)
Rick spent Sunday and Monday night with Ricky, as well as all day Monday and Tuesday.
On Monday Ricky had his PICC line put in; that's a semi-permanent IV that goes in the crook of the inner elbow. He had a bad reaction to the goofy drops, versed. He was fine for the first dose, but after the second dose he started kicking and screaming and trying to bite the medical staff, also very confused/irrational. He's had these drops before surgeries and medical procedures at least 4 times with no problem, and after reading up in the PDR I suspect he had an overdose, but of course those Stanford folks would never admit it. It took 45 minutes for an anesthesiologist to show up and put him to sleep! 45 minutes! After the PICC line was in he slept for 3.5 hours and woke up totally fine.
On Tuesday Ricky had a chest CT. I finally found out the "why" for this yesterday. Turns out the pulmonologist suspected (and confirmed with the CT) that Ricky has bronchiastasis (not sure if I'm spelling this right) which is condition where the large air tubes going into the lungs become inflamed and produce more mucus (just what a kid with CF needs, eh?).
For his sinuses, which are causing the whole problem with his pneumonia to begin with, he is now getting Ocean spray and Afrin spray as well as his usual steroid spray, Flonase. And you must realize that 5 year olds don't take particularly well to having stuff sprayed up their nose. He is also on Prelone (prednisone -- steroids) which turns him into a monster. At least it is a small dose. A year ago he was on it for croup and he started biting and being aggressive at school! Anyway they are trying to bring down his sinus inflammation so they can get a good picture when they do his sinus CT on Monday. Yep, that's right, Monday. They won't be sending us home on Sunday because they want to sit around and twiddle their thumbs and not do the sinus CT till Monday! Argh!
So his gastroenterologist ordered a pH probe for Monday. This is where they put a tube up through the nose and down into the esophagus and measure his acid refluxing for 24 hours with a tiny computer. As you can imagine Ricky just LOVES having this tube placed. Not. After not throwing up outwardly for several years but being on reflux meds, he had this test done in February when he was in the hospital, and it showed very mild refluxing, so he was taken off his reflux meds, which was great. Two less meds. But now the doc thinks he may be refluxing internally and not actually throwing up, and this can cause him to aspirate and make his lung disease worse. So if he has even a tiny bit of reflux going on we are going to put him back on reflux meds. Probably Prevacid this time (Prilosec caused elevated gastrin levels in his
blood before).
So that brings us to a Tuesday going-home date. We will be glad to be out of there. But meanwhile Ricky will be in the hospital for his actual birthday, Sunday the 26th. Luckily I saved some presents that I will take up to him that day. :)
Rick spent the night at the hospital last night so Andy and I can go to Thanksgiving at my mom's house today. It will be a weird Thanksgiving without my dad or Ricky (my dad having died, and Ricky in the hospital). But I'm glad to be able to go. I was afraid I'd be stuck in the hospital eating their version of Thanksgiving dinner with Ricky. Eating with Ricky is not bad. Eating hospital food is! This morning Andy and I are going to briefly hit the Thanksgiving sale at K-Mart and then go visit Ricky and Rick before coming back down here for Thanksgiving.
So there's our update for now. Thanks for listening if you got this far!
Rick spent Sunday and Monday night with Ricky, as well as all day Monday and Tuesday.
On Monday Ricky had his PICC line put in; that's a semi-permanent IV that goes in the crook of the inner elbow. He had a bad reaction to the goofy drops, versed. He was fine for the first dose, but after the second dose he started kicking and screaming and trying to bite the medical staff, also very confused/irrational. He's had these drops before surgeries and medical procedures at least 4 times with no problem, and after reading up in the PDR I suspect he had an overdose, but of course those Stanford folks would never admit it. It took 45 minutes for an anesthesiologist to show up and put him to sleep! 45 minutes! After the PICC line was in he slept for 3.5 hours and woke up totally fine.
On Tuesday Ricky had a chest CT. I finally found out the "why" for this yesterday. Turns out the pulmonologist suspected (and confirmed with the CT) that Ricky has bronchiastasis (not sure if I'm spelling this right) which is condition where the large air tubes going into the lungs become inflamed and produce more mucus (just what a kid with CF needs, eh?).
For his sinuses, which are causing the whole problem with his pneumonia to begin with, he is now getting Ocean spray and Afrin spray as well as his usual steroid spray, Flonase. And you must realize that 5 year olds don't take particularly well to having stuff sprayed up their nose. He is also on Prelone (prednisone -- steroids) which turns him into a monster. At least it is a small dose. A year ago he was on it for croup and he started biting and being aggressive at school! Anyway they are trying to bring down his sinus inflammation so they can get a good picture when they do his sinus CT on Monday. Yep, that's right, Monday. They won't be sending us home on Sunday because they want to sit around and twiddle their thumbs and not do the sinus CT till Monday! Argh!
So his gastroenterologist ordered a pH probe for Monday. This is where they put a tube up through the nose and down into the esophagus and measure his acid refluxing for 24 hours with a tiny computer. As you can imagine Ricky just LOVES having this tube placed. Not. After not throwing up outwardly for several years but being on reflux meds, he had this test done in February when he was in the hospital, and it showed very mild refluxing, so he was taken off his reflux meds, which was great. Two less meds. But now the doc thinks he may be refluxing internally and not actually throwing up, and this can cause him to aspirate and make his lung disease worse. So if he has even a tiny bit of reflux going on we are going to put him back on reflux meds. Probably Prevacid this time (Prilosec caused elevated gastrin levels in his
blood before).
So that brings us to a Tuesday going-home date. We will be glad to be out of there. But meanwhile Ricky will be in the hospital for his actual birthday, Sunday the 26th. Luckily I saved some presents that I will take up to him that day. :)
Rick spent the night at the hospital last night so Andy and I can go to Thanksgiving at my mom's house today. It will be a weird Thanksgiving without my dad or Ricky (my dad having died, and Ricky in the hospital). But I'm glad to be able to go. I was afraid I'd be stuck in the hospital eating their version of Thanksgiving dinner with Ricky. Eating with Ricky is not bad. Eating hospital food is! This morning Andy and I are going to briefly hit the Thanksgiving sale at K-Mart and then go visit Ricky and Rick before coming back down here for Thanksgiving.
So there's our update for now. Thanks for listening if you got this far!
Friday, November 17, 2000
Addendum
Yep, he was admitted yesterday at about 2:30 and they finally started the IV around 9:20 last night. Then took blood a little while later. So you can imagine he was not a happy camper. But he's basically taking it all okay, for which I am relieved.
I am at work for four hours today, getting a lot done as you can imagine (sarcastic), then heading up there again.
He will probably be in for ten days total. It takes that long because he has to have a full course of IV antibiotics. Luckily I am still part time for the time being so I can be with him most days; on the days I have to work, Rick or his mom or my mom can be with Ricky hopefully. He also does well on his own for short stretches (like right now) and they do have a preschool to keep him occupied in the weekday mornings.
So things are okay for now. :)
I am at work for four hours today, getting a lot done as you can imagine (sarcastic), then heading up there again.
He will probably be in for ten days total. It takes that long because he has to have a full course of IV antibiotics. Luckily I am still part time for the time being so I can be with him most days; on the days I have to work, Rick or his mom or my mom can be with Ricky hopefully. He also does well on his own for short stretches (like right now) and they do have a preschool to keep him occupied in the weekday mornings.
So things are okay for now. :)
Thursday, November 16, 2000
Ricky's going in
Ricky is going into Packard Children's Hospital for a CF tune-up. It's been a long time coming but the hospitalization coming at this particular time is sort of sudden.
He's going to be spending Thanksgiving and his birthday in the hospital (though they are letting him out on a pass on Sunday for his birthday party) so he's going to be pretty down. Your good thoughts are appreciated.
He's going to be spending Thanksgiving and his birthday in the hospital (though they are letting him out on a pass on Sunday for his birthday party) so he's going to be pretty down. Your good thoughts are appreciated.
Wednesday, November 1, 2000
Introducing Ricky Whicker on makeachildsmile.org!
We are very excited to tell you about Ricky's long-awaited appearance on http://www.makeachildsmile.org. He is the third featured child for November of 2000 (appropriate since this is his birthday month).
What is makeachildsmile.org all about? On this site, three kids with life-threatening illnesses are featured each month. There is a picture, a bio, and the child's P.O. box so that people can send him or her cards and/or gifts. It's a terrific way to give exposure to cystic fibrosis (I have mentioned the Cystic-L and CFRI web sites in Ricky's bio) and to possibly get Ricky some mail in his very own "po' box" as he calls it.
I encourage you to check it out!
What is makeachildsmile.org all about? On this site, three kids with life-threatening illnesses are featured each month. There is a picture, a bio, and the child's P.O. box so that people can send him or her cards and/or gifts. It's a terrific way to give exposure to cystic fibrosis (I have mentioned the Cystic-L and CFRI web sites in Ricky's bio) and to possibly get Ricky some mail in his very own "po' box" as he calls it.
I encourage you to check it out!
Thursday, October 26, 2000
in which Becky volunteers at preschool
A while back I picked today to volunteer in Ricky's pre-K class because Thursdays are my day off and this week is F week (starting at the beginning of the school year they do a letter per week), and I wanted to bring my french fry cutter and make french fries with the kids.
Rick took the boys to school because I had my polygraph for the dispatcher job at 8:30. I think it went well.
Right when I got there at around 10:30 they were slicing up FRUIT for fruit salad (it being F week and all). Ricky didn't get to do it because he was really, really naughty yesterday -- kicking and screaming at the teacher and writing on the wall at naptime. So I got him and a few other kids involved in slicing up the potatoes with the special safe french fry slicer (really easy, fat free fry recipe by the way, I'll pass it on sometime) and sprinkling the salt and garlic powder.
Two little girls carried one of the cookie sheets and a little boy carried the other cookie sheet into the kitchen where I put them in the preheated oven.
Then I hung out with Ricky's class till it stopped raining and we all went outside. It was kind of muddy and the 2's (including Andy), 3's, and pre-K were all wound up from being inside all that time, so it was sort of an emotional recess. Lots of crying and one little boy got so upset he threw up on the Director. The school isn't usually like that. The teachers were glad to have me there to help. I mediated a few disputes and even helped a little girl find her hair clip. I have to admit I don't know much about little girls but I did o.k. with that.
Andy found me outside and decided to sit on my lap for a lot of the time and play with my hair and blow zurbits on my cheek. Very cute and cuddly. Ricky showed me how to make a fort with the egg crates and stomped in puddles with his buddies.
We went inside for lunch and the pre-K had some french fries with their lunch. Ricky and his little friends (and some of the girls) all wanted to sit by me which was really cute. They all loved the french fries by the way. Well, almost all. One little boy politely refused.
Then it was naptime, and I helped a bunch of the kids set up their mats with their sheets and blankets, and rubbed Ricky's back and held his hand for a little while. He doesn't nap, but rests instead. I told him I'd be back to get him later in the afternoon.
I went away from there feeling really fulfilled and contented. And really having an appreciation for what Ricky does all day and being happy that he was so glad and excited to have me there. I couldn't do it every day like those teachers do, but I really want to go back and volunteer again. In two weeks I am going to volunteer in Andy's class. And I'm going to make it a point to do this once in a while from now on, maybe on a regular basis like once or twice a month. I love spending time with my boys no matter what we are doing. :)
Just wanted to share. :)
Rick took the boys to school because I had my polygraph for the dispatcher job at 8:30. I think it went well.
Right when I got there at around 10:30 they were slicing up FRUIT for fruit salad (it being F week and all). Ricky didn't get to do it because he was really, really naughty yesterday -- kicking and screaming at the teacher and writing on the wall at naptime. So I got him and a few other kids involved in slicing up the potatoes with the special safe french fry slicer (really easy, fat free fry recipe by the way, I'll pass it on sometime) and sprinkling the salt and garlic powder.
Two little girls carried one of the cookie sheets and a little boy carried the other cookie sheet into the kitchen where I put them in the preheated oven.
Then I hung out with Ricky's class till it stopped raining and we all went outside. It was kind of muddy and the 2's (including Andy), 3's, and pre-K were all wound up from being inside all that time, so it was sort of an emotional recess. Lots of crying and one little boy got so upset he threw up on the Director. The school isn't usually like that. The teachers were glad to have me there to help. I mediated a few disputes and even helped a little girl find her hair clip. I have to admit I don't know much about little girls but I did o.k. with that.
Andy found me outside and decided to sit on my lap for a lot of the time and play with my hair and blow zurbits on my cheek. Very cute and cuddly. Ricky showed me how to make a fort with the egg crates and stomped in puddles with his buddies.
We went inside for lunch and the pre-K had some french fries with their lunch. Ricky and his little friends (and some of the girls) all wanted to sit by me which was really cute. They all loved the french fries by the way. Well, almost all. One little boy politely refused.
Then it was naptime, and I helped a bunch of the kids set up their mats with their sheets and blankets, and rubbed Ricky's back and held his hand for a little while. He doesn't nap, but rests instead. I told him I'd be back to get him later in the afternoon.
I went away from there feeling really fulfilled and contented. And really having an appreciation for what Ricky does all day and being happy that he was so glad and excited to have me there. I couldn't do it every day like those teachers do, but I really want to go back and volunteer again. In two weeks I am going to volunteer in Andy's class. And I'm going to make it a point to do this once in a while from now on, maybe on a regular basis like once or twice a month. I love spending time with my boys no matter what we are doing. :)
Just wanted to share. :)
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