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...

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...

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!

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. :)

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.

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!

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. :)

Ricky mini-update

Well, as most of you know, we've been having a hard time with Ricky for a while. Around the end of last year he started being very angry and spiteful and aggressive. When he was in the hospital in February they actually gave him a diagnosis: adjustment disorder with emotional features. Whatever that means. I didn't find out about this till last week.

You might recall that a couple of months ago I took him to a psychologist who decided without even seeing him that he had ADHD, which I basically rejected as being beside the point -- even if he does have it, that's not what's bugging him at the moment.

Anyway, the past couple of months he's been even more aggressive at school, doing things like attacking kids at preschool (including his brother -- he threw shovelsful of sand in Andy's face last week) for no reason. And talking about killing people, chopping off their heads, and things like that. The teachers have been working with him but a few weeks ago I decided he needed more help.

We think that a lot of Ricky's anxiety and acting out might be caused by his health being worse this year. (Just a refresher, he was in the hospital for a tuneup in February and in for sinus surgery in March.)

Our insurance does cover psychological stuff with the exception of ADHD. They mainly cover "disorders," which it sounds like he has. We finally found out what to do to get him evaluated (took three weeks for the pediatrician to get around to calling us back, but she called me herself and apologized so I am not too mad... LOL). All we had to do was call the behavioral health insurance division and ask for help. They told me that he can go to Stanford -- hooray! Which is where he has two of his other specialists. Early this coming week the folks at Psychiatry Intake at Stanford are supposed to call me to make an appointment for a full evaluation. They probably can't see him till November. But it will be worth it.

We're gonna help this little guy. He is so wonderful and so worth it. Thanks for listening...

Sympathy for a worn out mom?

Ricky has had a chest infection for over three weeks now. Below is my latest update to one of the CF lists that I wanted to share with you guys cause I'm more likely to get sympathy from you. I am so worn out.

The Ricky saga continues. He's been on Zithromax since Sunday and has had four poop accidents since then. I know the very strong dose of Zithromax is wreaking havoc with his digestive system. I offer sympathy and repeatedly change his bed sheets (time to do more laundry). The acidophilus isn't doing him a bit of good. Is there any anti-diarrheal that will help him and is okay to give to a little kid or should I just let nature take its course?

It would maybe be worth it if the Zithromax was doing any good. He's being really good about taking it and doing extra treatments + inhaled Tobi every day and yet he still has this horrible cough that isn't bringing anything up but just getting worse. It feels like an uphill battle I am fighting alone because Dad (from whom I am separating, but he still lives here) just doesn't do Ricky's treatments when I'm not around, and then lies about it.

And here's the really fun thing. Every 6 months or so, Ricky's gastroenterologist does a large battery of blood tests. This one showed high IGE levels (this is a measurement of allergy sensitivity apparently) which in pwCF can mean that a person is growing aspergillus (fungus) in their lungs or elsewhere. I know what aspergillus is and everything. This same result came up in February when Ricky was in the hospital and nothing was done, no testing or anything. I wonder when they are going to take it seriously.

Then again maybe he just has allergies like his mom. And not aspergillus. Wouldn't surprise me.

Once again his throat culture showed zippo and I'm beginning to think they might finally take it seriously and do a bronchoscopy on him so we can figure out what we're battling.

This is the first time I've really felt overwhelmed. I feel like Ricky is depending on me and only me to fight this fight for him and I'm letting him down because it's totally overwhelming me. I feel like crying at any moment. I am afraid of him going in the hospital and yet afraid of him being at home and getting sicker. Last hospitalization I tried to get them to send us home with a PICC line (March moms and Shane, this is a semi-permanent IV line) and IV antibiotics and they didn't even think we could handle it, which I found incredibly insulting. They wouldn't even put in a PICC line and so once he was feeling better (3-4 days) he popped out his first IV and proceeded through 3-4 others. So I don't know what is worse, aggravating here at home or having him in the hospital.

Some sympathy, advice, doctor bashing... anything would be greatly appreciated at this point. I can't believe the guilt, anger, disappointment, frustration, discouragement I'm going through.

another update

Ricky is now 4-1/2 and has topped 42" in height and 36 lb. for weight (both 50th percentile). His speech difficulties continue to be a bit of a problem and if he still has these problems in the fall, I'm going to see about getting him into speech therapy at the local school district. I was going to do it sooner but we ran out of time for this school year.

He's interested in activities that allow him to manipulate objects with his hands, and he's quite adept at it. He is just starting to recognize numbers and letters, and school has really helped him with this. My example of this is the fact that they do one letter each week and following that week he'll find that letter everywhere. It's a hurdle we've finally cleared and it sure is great!

Ricky has been hit very hard with the death of my father 2 weeks ago today. He has exhibited violent and acting-out type behavior which we think is understandable considering how close they were. Ricky has an appointment with the pediatrician this Thursday and I'm going to ask her what we should say or do.

Ricky's been doing pretty well since his sinus surgery in March, but I'm still somewhat disappointed. He's been sick off and on and he'll go on antibiotics and be fine for a while and then be sick again as soon as he goes off of them. I know the doctor mentioned doing surgery again after a year or so but to me it looks like it might be sooner. I sure hope not. Right now he, Andy and I are all battling a sinus infection which is nothing new for any of us!