Ricky update for today

The other two kids and I visited Ricky this evening at dinnertime after a long day. Andrew and I had taken my mom to see her surgeon for follow-up. Ricky had been calling me all day asking when we were coming but when we got there, he was fast asleep. At 5pm!

We hung around and finally went and got some dinner. Ricky woke up at about 6:30 and played one of the PS2 games I'd gotten him (there's a console in each patient room). He also ate some dinner, including rice I'd made for him, with sugar and milk. :)

Overall he seemed to be feeling rotten and discouraged, but I hope our visit helped. It must stink to be cooped up. Tomorrow the hospital is having a spring (Easter) festival but CF patients are not allowed to leave their rooms so he's going to be out of luck. :(

The hospital school teacher stopped by today and left some literature. I'll need to call there and let them know that he's on spring break this week but that I'll bring in his work for next week.

Guess that's all for now!

Ricky's in the hospital

Ricky's just kickin' back, originally uploaded by Beckerbuns.

Yeah, so...

Ricky was out of school all week with the sinus infection. He was plugged up, lethargic, and generally miserable. I was getting concerned because usually Septra does the trick when Ricky is sick. So Friday afternoon I got in touch with the CF nurse and she offered to get him a bed. I told her I didn't know if he really needed one but that I thought he should be looked at. By that time we didn't have many options and I decided to take him to the ER.

We got to the emergency room at about 6:30pm. The nurse and doctor saw Ricky, and he got blood drawn from his port. Luckily there is a separate waiting room for pediatric patients, so Andrew and Misty waited in there with me. As other families came and went, Andrew played on a Mac and Misty played with toys. It was a little sad for Misty as she kept making friends and then they left again.

Eventually, Ricky's port was accessed for infusion and when I went to see what was going on, his nurse ran by (ER was busy by then) telling me that Ricky was going to be admitted. I talked to Ricky, who was being bolused fuids, and he said the doctor had told him he'd be in for a few days.

The ER doctor finally came in to see me well after midnight. It was really frustrating not to know what was going on. He informed me that Ricky was pretty dehydrated and also that he and Ricky's CF doc (who happened to be the pulmonologist on call this weekend) were also concerned about the sinus infection that wouldn't go away. So yes... Ricky was being admitted. It would take around 14 hours to rehydrate him and anyway, that had been interrupted in order to start him on antibiotics. They were going to have him on three different IV antibiotics. The doctor also mentioned that they were going to try to have ENT come consult about the sinuses, and maybe scope them.

There were no rooms, so we had to wait for a room. We finally got transferred up to a room at 2:30am. Misty and Andrew (and Ricky!) were still awake! When we got to the room, I grabbed some toddler hospital pajamas for Misty and put her in them. She was asleep, in my arms, by 2:45.

The nurse took all of the admitting information, and then the resident (who had been on for 22 hours) came and went over things with us. We finally left the hospital at... Wait for it... FOUR A.M. So, 9.5 hours from entering the ER to admittance.

Somehow I drove us home safely. Misty fell asleep in the car and Andrew was close. Got them to bed and crashed myself.

Visited Ricky once yesterday afternoon, after I got my mom home from the nursing home where she was recovering from her broken leg and subsequent surgery. Yes, yesterday was a long day. Anyway, he was doing fine. They got some sputum from him yesterday morning (and more today) so we should find out what bacteria he's growing. Hopefully just the same old ones; they're sensitive to many antibiotics.

Today one of his antibiotics was switched. He's now on three IV antibiotics: Septra, Tobramycin, and Ceftazidime. His oxygen saturation was a bit low in the emergency room, and whenever they take his vitals it's still a bit low. His sinuses are still bad. He's getting lots of treatments with a therapy vest... And it's a new one, a RespirTech vest. I WANT ONE. It is computerized. So much more advanced than what we have and I would bet that it is a lot more effective at airway clearance.

The resident that first morning told me that I should plan on a 12-14 day stay for Ricky. So he's there for the duration.

He hasn't been inpatient since February of last year. That's not bad really. Hopefully it all goes well.

By the way, if you'd like to send Ricky a card, you can go to this page to select and write one, and it'll be printed and brought to Ricky in his room. His full name for the card is Richard Whicker.

guess where we are?

Yeah.

this week's update...

sacked out at dinner
Originally uploaded by Beckerbuns

Ricky stayed home from school on Friday the 27th of March, and every day this week so far. He has a raging sinus infection and all of the lovely side effects that brings... Headaches, pressure, general crumminess. Andrew has a cold too but much more mild, so on Tuesday I took them both to the pediatrician to have them seen. The verdict for Andrew was a simple head cold. For Ricky, definitely a sinus infection. He has had them chronically since he was a toddler, though the sinus surgery he had at age four did decrease them quite a bit.

The pediatrician contacted the pulmonologist and it was decided that Ricky would stay on the Septra that was prescribed to him last week. His lungs sounded fine to the pediatrician, which is great news, but there is always the possibility that the mucus from the sinus infection could end up in the lungs and cause an infection.

The good news (!?) is that Ricky is already going to CF clinic on Monday for a recheck spirometry (lung function) test. He will likely be on Septra for an additional week after that. The nurse mentioned an inpatient stay if his lung function has decreased, but I was encouraged by his lungs sounding great this week and hopeful that he will NOT end up inpatient.

He just sounds miserable and is having a hard time with this. Ricky has been through a lot with his health, and it's not really like him to complain, but he is definitely complaining now. :( I've been giving him plenty of plain Robitussin (guiafenesin) and Motrin to help.

I'm not sure whether he'll be back at school this week, and next week is spring break! I told the teacher I could come get his work from her tomorrow if it looks like he'll be out the rest of the week. We don't want to overwhelm him, but we don't want him to get behind, either.

That's it for now. Please keep Ricky in your thoughts. :)


Edited to add: Tonight I joined up with Blog Frog. It's a great way to keep track of your blogging friends and make new ones! If you have a blog and add my link to your page, and then click the button in the widget, your link will appear on mine automatically. It's a neat little widget and it's free. (You don't have to add the widget.)

insurance woes

I haven't yet posted about the latest insurance adventures. Just thinking about it makes my blood boil. I've mentioned some of this before but maybe I'll recap.

The kids got new (state-sponsored) health insurance -- Anthem Blue Cross -- as of February 1 and ABC decided to require the doctors to preauthorize all of the expensive meds.

We waited for THREE WEEKS on three meds -- psych meds! -- and he actually ran out of two of them. The insurance company said that he uses too much of these meds in a month. Uhh maybe because that's how many it takes for him to be stable? Who are they to determine that is too much?

The doctor faxed the form three times. Turns out his staff put the wrong member # on it. Apparently it was too much work for ABC to figure out which patient they were supposed to be reviewing the auth for. That finally got straightened out and the insurance company rep said it would take 24 hours for approval. 48 hours later... It still didn't work. Finally, after numerous calls back and forth, our pharmacy tech at the local Walgreens took pity on me and called the insurance on my behalf, and finally got it figured out.

If they hadn't worked it out, Anthem Blue Cross would have been paying for a very expensive psych hospitalization for Ricky. I guess they'd prefer that?

We are probably going to have to go through this with all of his meds. Again. Right after we just finished dealing with HealthNet over the same ones (the state dropped them as a vendor which is why we had to switch to ABC). They were totally useless as well.

We're still alive...

Ricky - Student of the month!
Originally uploaded by Beckerbuns

Sorry it has been a while since I updated. A lot has happened recently. Last Friday, my mom fell and broke her right leg in two places. She subsequently had surgery followed by a hospital stay and then a rehab facility. Thankfully she is doing well there now.

Ricky had his quarterly CF clinic visit on Tuesday. He is about the same weight, just approaching 100 pounds -- gaining well for someone with CF. His PFTs were down a little so he has started back on Septra (oral antibiotic) and TOBI (inhaled antibiotic).

We go back two weeks after the appointment for more spirometry (the breathing tests) and then in three months for a checkup.

See the picture? That's Ricky's Student of the Month certificate! He was one of a handful of kids in his middle school who were chosen for this honor. I am so proud of him! So proud that I even took the kids to Chuck E. Cheese to celebrate. Now that's a nice mom! :)

On Friday I took Ricky up to Stanford again... For his neurology appointment. Turns out the appointment is actually APRIL 27. Oops! :) So we'll go back next month.

Until next time...

Ricky's ENT visit

I just wrote about Ricky's visit in an email and it came out so well that I thought I'd copy it here rather than type it all over again!

We went to the ENT yesterday. I took a copy of the audiology report with me, and it's a good thing I did since they didn't have their copy handy.

Anyway, the resident did a few tests on Ricky, after hearing what the problem was. One was blowing air into Ricky's ears to see if that made him dizzy, and he then had him lay down and turn his head this way and that to see if that made him dizzy. None of that made him dizzy.

He and the attending ENT both think that it could be one of three things:

1. Migraines;
2. A heart arrhythmia of some kind; or
3. A problem from his CF that causes him to not have his blood oxygenated efficiently (doubtful because his CF is not that bad -- I think that's more of an endstage thing -- but who knows).

They also scoped his nose/sinuses because that is what he's usually seen by ENT for -- chronic sinusitis. No polyps in there.

They are deferring us to neuro (thankfully we finally got the authorization and have an appointment in April), and if the neuro exam is normal they suggest that the pediatrician refer us to a cardiologist, possibly to have him wear a Holter monitor for 24 hours or something along those lines.

I'm feeling a bit discouraged because I was hoping we'd get some answers. But I can wait til next month. Maybe the neurologist will have some answers for us.

Sharing Ricky's artwork + update

Ricky was assigned, apparently, to draw a picture of himself as a pirate lumberjack and then write a story to go with it. I was impressed with the results, especially since he hates to write. So I scanned the little project. :)


He says that purple stuff on the chest is chest hair. Arrr!



A few updates...

Yesterday I heard from the endocrinologist. Ricky's bone age x-ray came out in the low end of normal range. In other words, his bones are slightly on the young side but not out of the ordinary.

Today I made appointments for Ricky with the gastroenterologist and psychiatrist, both of which he is due to see for follow-up. I also finally got a call from the office of the new neurologist and I got an appointment for Ricky to see him. All of these appointments are in April.

Ricky sees the ENT on Monday.

Correction and update to Genentech link

Hi everyone. When I posted about Ricky being on the Genentech website, the link got cut off. So none of you got to see him! I've corrected the link in that post, and here it is again! As of this week, there is now a video montage/interview with Ricky and me for your viewing pleasure. :) Enjoy!

various Ricky updates

I've had some behavioral issues with Ricky at home and at school, but believe it or not, as opposed to two years ago, I am pretty sure that this is a teenage thing. It worries me to think about what is to come when you combine the teenage thing with the bipolar thing.

Both of the boys had spring pictures taken this week. I had them both dress up and they both had haircuts.

This past week I spent a lot of time dealing with insurance issues surrounding three of Ricky's psych meds. The situation was that Blue Cross only allows one of each of these three pills per day. And he actually takes 5, 6, and 2.5 of them respectively. So they needed a prior authorization form from his psychiatrist. This was sent in on Tuesday and they claimed they hadn't gotten it yet. So I got the doctor's office to fax it again. I'm sure they got it the first time, but whatever. Stupid heads. :(

They finally authorized him to get 90 of two of them and 60 of another temporarily (not enough for a month, but a good start) and I picked those up on Friday night. SO aggravating. Since when are insurance companies allowed to say how much medication a person should be able to take!?!?

Next weekend, the boys and I are going to Mother-Son Weekend at YMCA Camp Campbell while Misty is with Dave. I managed to get $175 underwritten by the Y due to our financial need, and my mom paid the other $75. That reminds me that I need to take a better look at their packing list and figure out what we need to buy and take! :) The cabin has electricity and there are accommodations for Ricky's medical needs and equipment, so it should be great!

Ricky starts in spring VIP soccer on the 22nd. He has done the fall version three times but never spring. He really wanted to do it, so I signed him up. :) It's from 1:30 to 3:30 every Sunday for a while.

Ricky is also in social skills group again. This time around there are kids closer to his age and it will hopefully go better as opposed to last time, when they were all a bit older and intimidated him.

Today's ENT appointment has been rescheduled for March 16. I hope we can get some answers about the dizziness. He had another bad spell last week and has minor ones on a daily basis.

And here is our biggest news this week! As you might recall (actually I'm trying to remember how much I said about it at the time), in November, the kids, my mom and I were treated to a trip to San Francisco to do a patient testimonial for Genentech's fabulous drug Pulmozyme.

This week, Genentech's annual report came out and Ricky's the featured patient for Pulmozyme. You can see his page here.

This is Ricky's second time being featured on the Pulmozyme website.