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...
Tuesday, November 28, 2000
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!
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