Ricky's home. :D

Ricky update

Well, Ricky is doing pretty well. He still has some "crackles" (mucus/pneumonia) in his right lung which means he'll be in the hospital at least a few more days. His spirits are, as always, high, and he's being really good about his treatments, which is definitely a "turn around the corner". I feel I can leave him there on his own a little bit more each time he is in... I have actually spent a couple of nights away from him now and he's done fine.

I want to thank you all for your generosity and concern. Ricky's been sicker than usual this past year or so, but I (and the hospital) am taking care of him the best I can.

Ricky's in Club Med(icine)

Well, with the shortest interval ever (2 months) between hospitalizations, Ricky is in again. He's had this cough/pneumonia for several weeks that he just couldn't kick. This time we tried almost everything, from 4 treatments/ThAIRapy Vest per day to Prednisone (steroid) which tends to make him agressive.

I feel better that at least we tried everything we could before putting him in the hospital, but this is all still pretty depressing.

He's being his usual wonderful self. For the first time ever, we are going to try having me sleep at home rather than spending nights with him... Mostly because Rick goes to work very early and I'll need to be the one who takes Andy to day care. Also because Ricky's getting older.

We did receive some bad news from one of Ricky's favorite nurses, Katherine. That is that Ricky's roommate from his stay in November of last year recently died. His name was Adam, and he was only 16. He also had cystic fibrosis. Ricky really looked up to him and admired him (he has a serious love for the "big kids") so I felt I had to tell him the news. He handled it well. He cried a little bit and laid his head on me. But he has the best of human nature... Since I told him he is now talking about the stuff he and Adam did together when they were roommates.

The hospital visit got off to a bang start (after four hours of waiting for a nurse to take a history and vitals) with Ricky kicking and trying to bite the respiratory therapist. The nurse and I quickly established a sticker chart (which we do at home anyway) with hospital routines (taking meds, doing treatments, eating meals, being good at recreation therapy, etc.) on it and the next treatment went well.

In the usual hospital fashion, Ricky's sharing the four patient room with one baby with seizures (no problem) and... TWO CF kids! Big no-no (cross infection)! The docs are really going to hear from me in the morning! Otherwise it's going routinely. Thankfully my work is understanding...

If you want to send Ricky a card, for the next 7-10 days you can write him at:

Richard Whicker
Patient
Lucile Salter Packard Children's Hospital
725 Welch Road
Palo Alto, CA 94304

More later. Right now I need to get my beauty (ha!) sleep.

various things

Ricky continues to do very well in Kindergarten. We had a momentary panic yesterday with the after-school day care because they never received his folder (with doctor's forms, medication order, you know, all that important stuff) from the center that had him for the summer. Apparently no one had bothered to call the director at the other center, because when I called her she said, "Oh yeah, it's right here!" I volunteered to pick it up and run it over to the center he's at now. She couldn't run it over herself because of the required staff to child ratios. So I ran it over (in my oodles of spare time, don't you know) and it's all good now.

I got my final permanent crown put on yesterday after work. That's five I've gotten this year, and that's apparently all I need for now! Hooray! I actually have more now than my husband, the man with the bad teeth. It all comes from being a grinder/clencher... A subconscious habit I still catch myself doing -- drives me nuts!

Rick took Ricky up to Stanford for what we hoped would be the last segment of his cognitive testing -- he seems to wear out and not pay attention after awhile. It didn't get completed yet again and he'll have to go back for more.

Ricky's first day of kindergarten

It really went quite well, much to my relief! We had orientation and got to go to the classroom with him, where I had the opportunity to speak with his teacher (who is great) about him having CF, and gave her some literature. She'd had a student a long time ago with CF.

After a while, the teacher (Mrs. Makin) came over and asked me if there was anything she needed to know right away before she could read the literature. I just told her he'd been in the hospital a few weeks ago, could be as active as he felt like being, and needed pills. And that he might cough a little and go to the bathroom more often than other kids. We told Ricky to remind her about the pills today as it was hectic. He did, and it all went okay! He got his pills, had a great day, and said he had "a million of fun"!

Today we found out about a change in schedule. This is the first year the Kindergarten is 9 a.m. to 1:30 p.m. (used to be 8:30 a.m. till 12:30 I think) So he eats lunch in his classroom. And the days I work, he goes to after school day care that is on campus. That will start tomorrow.

Ricky's in the hospital

Gonna make this quick...

Ricky is in the hospital.

Friday night he threw up all night and ran a temperature most of Saturday. We figured it was the stomach flu, and he was fine by Saturday afternoon. Yesterday he started having severe abdominal pain in and so we went to our local hospital (he was screaming in pain and I didn't want to take any chances) at about 3:30 p.m. They did a chest x-ray and an abdominal x-ray and decided that though he was full of stool (which might possibly mean a bowel blockage, which can happen with CF), he also seemed to have pneumonia in two lobes.

He started running a rather high temperature which wasn't brought down even with Tylenol. He slept off and on and was really being good, considering everything. He was started on an IV because his heart rate was fast, indicating possible dehydration.

Eventually we got the pediatrician in there, and he decided (with me) that Ricky should be transferred to Packard Children's Hospital to be treated (that's where he goes for CF treatment, and the local hospital doesn't know much about CF anyhow). FINALLY at 12:30 a.m. this morning we got the ambulance after the docs and charge nurse went back and forth about whether we'd be allowed to transfer him ourselves and finally decided against it. By this time Ricky had fallen deep asleep and ended up being asleep for the whole ambulance ride!

We got here and were finally checked in by 3 a.m. He was started on ceftazidime (antibiotic) by IV. This morning he had x-rays and they were talking enema, and then he pooped (pooped again this evening). The abdominal x-ray apparently looked much better, and I FINALLY found out that the chest x-ray wasn't bad either. So depending on how he does tonight we *might* go home tomorrow. Woo hoo!

Just wanted to update everyone as to why I've been rather absent. I'm going to take a while to catch up on email but I will be able to do it eventually!

Talk to you all later!

Note: Ricky came home on August 10.

on genetic testing

I don't know what the big fuss is all about. Of course it is beneficial to be tested for genetic diseases. Especially since nowadays you can find out if you are going to have heart disease or breast cancer (for instance) in the future! Of course this is a good thing! Many deaths can be prevented.

My sons have both been tested for cystic fibrosis. My older son was born with medical problems leading to a tentative suggestion of CF, so he was given a genetic blood test when he was under a week old. This test was positive. In fact, we found out what genomes he carried (DeltaF508 from my husband, and Q493x from me, in case you're wondering -- which you're probably not, but oh well), which helped us figure out what the course of his disease might be, and how to treat his disease. This is so valuable!

My younger son was tested via amniocentesis when I was about four months pregnant. My husband and I wanted him either way; if we hadn't, we wouldn't have gambled on another baby. Andy had a 25% chance of having cystic fibrosis; a 25% chance of being completely unaffected by the gene; and a 50% chance of being a carrier (like my husband and myself). As it turned out (3 aggravating weeks later), he was totally unaffected, much to our relief. And let me say that having a "normal" baby was really weird for us!

Some may ask, why bother having him tested in utero (and risking the amniocentesis) if we wanted him either way? Well, the answer is this... Ricky had problems in utero (a ruptured) bowel. So we wanted to know if this baby would have CF so we could look out for that kind of thing (extra ultrasounds, etc.). So that's why we took the risk.

And I guess that all explains why I feel that genetic testing is so important. I don't know what to say for the folks who have abortions after finding out their child is "defective". I don't happen to agree with that, but I also don't want to open up a huge discussion about abortion here. Abortion has its purposes, I believe, but I don't think that weeding out "undesirable" children is one of them.

That's about all I have to say about that. :)

Ricky has been doing very well as far as his sinuses are concerned. When he had his sinus surgery a year ago, the ENT said he'd probably need another one after a year, but his sinuses right now look GREAT so it looks like that won't be the case! Hooray!

In February he cultured a nasty bug in his lungs, stenotrophomonas maltophilia, but we immediately countered it with inhaled and oral antibiotics and hope to have it beat. I guess we'll find out after we get him cultured a month from now. Because of the bug, he's developing a chronic cough for the first time in his life. Most CFers have a chronic cough so I guess it's just Ricky's time.

Ricky's behavior problems got so bad back in November (before his hospitalization) that I took him to a child psychiatrist. We've been following with the doc till now. Ricky's trying play therapy with the psychiatrist and after the last visit three weeks ago we started him on Paxil, an antidepressant, because we think his behavior stems from depression over his chronic illness (by the way, any other parents with experience in this area, MACS or other, I'd love to hear from you). Well, though it made him a generally happier person, Paxil got him ripping his hair out in chunks from his head and chewing on his fingernails and cuticle like mad. It seemed to actually be activating his bad behavior too (I swear he is going to get kicked out of day care)! So he was weaned off of it this week.

We saw the psychiatrist yesterday and he decided we should try Celexa, another SSRI class of antidepressant. He is double-checking on possible drug interactions, because Ricky is on so many other drugs, and then he will call it in to the pharmacy. If that doesn't work, he's considering Concerta, an ADD drug/Ritalin derivative, because Ricky definitely is active, busy, and destructive, which can be caused by depression, not just ADD. So even if he is not ADD he might still benefit from it. The big problem with any Ritalin drug though is that it will supress appetite, which is the last thing my skinny boy, or any child with CF, needs. I checked the the GI doc and she is okay with it if the psychiatrist feels it would be valuable for him. We'll just have to monitor his weight extra carefully. But we are getting ahead of ourselves because we are all set to try Celexa first!

Andy (little brother) had his third birthday on Sunday, and is doing just great. Driving his brother crazy, but then that's his job! So there's a little update for you.

Icky news (post from 2001)

I finally talked to Ricky's NP at the CF clinic and he cultured two bugs last
week.

(1) Serratia which I guess we've figured out isn't dangerous at all.

(2) Stenotrophamonas Maltophilia (sp?) which really knocked the wind out of
me.

Just when we were starting to do so well, now this. I guess we can't ever do
WELL with this disease, we just have to keep getting knocked for a loop.

What is cystic fibrosis?

Ricky doing his vest 01-10-2002
Originally uploaded by Beckerbuns

Now I will educate you about CF!

Cystic fibrosis is a lung and digestive disorder that is passed on by DNA... Meaning Rick and I are each carriers, therefore each pregnancy we have together has a 25% chance of ending up with the child having cystic fibrosis, and 50% chance of being a carrier (Andy is in the other remote possibility of 25%, he is not a carrier nor does he have the disease, thank goodness).

Kids with CF have lots of problems, but the main ones are:

1. digestive - they cannot digest fat, or absorb fat soluble vitamins, without the aid of a digestive enzyme pill

2. lung - they have frequent lung infections and pneumonias

Ricky also has CF related sinus infections, bronchiectasis (inflamed bronchus tubes in the lungs), and gastroesophageal reflux disease, all of which can stem from CF. He also has a lazy eye, farsightedness, and possibly learning disabilities, which do not stem from CF.

He requires hospitalization from time to time for his pneumonia (twice last year) and has had sinus surgery once (also last year). He also gets breathing treatments twice a day and takes about 10 different medications on a daily (sometimes twice daily) basis, not to mention digestive enzymes at each meal.

Since he is so young, I do have to worry about his therapies and medications and general health... I'm hoping as he gets older and takes more responsibility for these things himself, I won't have to worry as much. But for now the problem remains! Since I am his mommy (and Daddy leaves it to me to handle absolutely everything) it is my sole responsibility for now.

Good links about CF:

Cystic Fibrosis Research, Inc.
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic-L (the email list I belong to)