SSI and update

Because of the divorce and our financial status change, last month I applied for SSI for Ricky for the first time since he was a baby (we were turned down back then for having more than one car and some money in savings -- but now neither of these is the case). I know that CF is already considered a disability by Social Security, at least according to the intake worker I spoke with on the phone, and I completed a mountain of paperwork and signed consents for them to get information from his doctors as well as his schools in regard to his other disabilities, which include learning issues and bipolar disorder. I was told that it could take up to 6 months for a determination.

The latest thing that has happened is that I got letters on Friday ordering Ricky to go to a physical examination and mental examination by a local doctor hired by the state, I guess to see for themselves what his disabilities are. The logistics of getting to these appointments is complicated because they scheduled one for a weekday morning when he is at school, and the other for a Wednesday evening when he has a standing group therapy appointment (at least for the next six weeks). I called to have the appointments changed (at least the evening one -- although I'll need to miss work to bring him to the morning one, and pay for day care for Misty) and the caseworker (a different one, at a central office in another part of the state) was really stern with me about how they would be reluctant to change these ever again, and that they have little control over how the appointments are set. What a screwed up system... Apparently they expect you to drop everything and go to their appointments even though they ask for no input as to when you are available. I understand the need for an independent evaluation of a person's health and mental status, but jeez!

Later in the day today, a person from the clinic called and said that they had a cancellation and can see Ricky tomorrow night, at 7! This would be after his individual and group therapy... A bit late since he usually goes to bed by 8, but we can swing it.

I wondered if anyone out there can help with this stuff? What should we expect at these appointments? I mean, aside from my bringing his list of meds, how are they going to tell if he has CF or decreased lung function or whatever just from a physical exam? Do they do spirometry? Or, what other kinds of tests? The mental exam, I am pretty sure I know what that will be like, maybe some learning and cognitive testing and some questions asked to Ricky and me about his functioning and understanding. Anything else I should expect? Also curious about how long it will take, of course.

If anyone can offer any insight, I'd appreciate it!

As for Ricky, he is doing really well. He takes his last dose of Prednisone on Thursday morning. He has been sounding a little nasal, which could be due to a sinus infection, but time will tell. Overall he is more active and happy and doing great in general, which is a huge relief. We dodged the hospital bullet!

Last night I uploaded Misty's pony pictures (taken on Sunday) to Flickr. That prompted me to go back and find the boys' pony pictures, and I found them in an old backup. That included this one of Ricky, taken when he was four years old. It turned out that he was admitted to the hospital that day, and he also had sinus surgery around a month later. (Edited a few minutes later to add: You can also see that his left eye crosses a little bit. Later that same year he got glasses and a patch to correct the lazy eye... Still wears glasses but no more lazy eye now!)


Okay, when did he stop being that little boy!?

(If you click through, you can see the rest of his pony pictures and also those of Andrew and Misty.)

thought he could fool me!

A funny (sort of) Ricky story...

A few weeks ago, when Ricky started being a bit tired in the evenings, he asked if he could shower in the morning. I let him do that a few times and eventually it became routine. He would shower before the rest of us got up, since he is usually up around 5:30am. He'd dress and eat his breakfast and then watch TV or play video games.

A few mornings recently, I came out in the morning and he didn't look like he'd showered. His hair still looked rumpled from bed, for example. But he swore he was showering and I figured he must've rumped his hair laying on the couch watching TV.

Sooo... This morning, Misty woke me up a little earlier than usual, around 5:30, whimpering in her sleep. I tossed and turned a little and dozed off and on. I looked at the clock at 5:34 when I heard the boys' shower faucet being turned on. It continued for about 10 minutes... But the first thing I noticed was that it wasn't going from tub to shower. It was just running in the tub. (It's louder.) THEN I could have sworn I heard the sound of a bowl being plunked down on the counter in the kitchen. Wait... He was eating breakfast while he took a shower??? I continued to hear breakfast sounds and I realized that he thought he was putting one over on me.

Eventually I got up and got Misty up, and started Andrew moving, and then I went out to the living room, where Ricky was now playing Wii, and said, "You need to take your shower now. I know you didn't take it."

He looked at me and started to half-heartedly protest. I said, "I heard you getting breakfast while the water was running." He looked guilty. "How long has it been since you actually took a shower?" He replied, "I don't know." Gross!!!! I tried to contain my anger and pointed him to the bathroom. "Shower. Now."

When he got out, I informed him that he was losing all video games for the day and that he had lost my trust and would now have to take his showers in the evening.

The nerve of that kid! But what ingenuity! I had to chuckle, even though it stunned me. He so rarely tries to deceive me these days... But wow, when he does, it's a doozy!

Doing fine!

I went to bed and then realized I'd forgotten to update ya'all on Ricky. So I got up again and I am updating in my pajamas.

Thankfully (believe me when I say that!) there is not a lot to report this evening. Ricky was fine this morning and went to school. He had even gotten up before me, showered, and given himself breakfast. Tonight he was a bit tired, so he went to bed early, but hopefully he'll be okay tomorrow again.

Tomorrow would have been his recheck from last week's appointment, but since we went in yesterday, he doesn't go back until the second week of November (unless he takes a turn for the worse). On that day he will also have full PFTs.

Tomorrow Ricky does have group therapy in the evening. We'll be doing that til sometime in November.

Guess that's it... Goodnight!

Tricia

Hey everyone.

Ricky is doing great today. He was up and ready before I even got out of bed, and went to school in a great mood. I will update more on that later.

Right now I want to ask you all to keep Tricia, her husband Nathan, and their baby girl Gwyneth in your thoughts. Tricia, who is a double lung transplant recipient and, like Ricky, has CF, is in the ICU with what can best be described as pneumonia.

Tricia and her family have been through a lot in the past year (this year especially). I hate to see them going through this on top of everything.

Update!

I've been getting a lot of messages from people who are curious about how Ricky is doing. He is doing okay! We got an appointment at 10:30, as previously mentioned, and headed up there.

Ricky slept most of the way there. When we got there he did not have an x-ray like last time, but he did have his vitals taken and have spirometry. His oxygen saturation was up to 97-98, which was a definite improvement, and his spirometry was actually almost up to baseline. Also, his lungs sounded not too bad. There was some consolidation in the lower lobes, which follows what has been going on with him. Ricky repeatedly complained about his upper chest and throat being congested.

I found out that his sputum culture from last week had eventually grown a bug that he hasn't cultured in many years... Stenotrophomonas Maltophilia. I just looked back in the Cystic-L archives and found that it was 2001 when he last cultured it! (I'm actually going back and transferring that message to Cystic-L over to this blog, so if you see it pop up in my feed please don't be alarmed!) The good news about this bug, though it is a medium-bad one, is that it is sensitive to a few good midrange antibiotics, and the one they chose to put Ricky on is Bactrim. He will be off the Rifampin (no more orange pee, tears, sputum, and spit!). He is also going onto a slightly longer course of Prednisone and they upped his Singulair dosage to a higher one. He has been on the 5mg chewables and he weighs enough now to go to the adult dose of 10mg non-chewable tablets.

Before we left the clinic, Ricky had blood drawn for an aspergillus panel. Looking back, I see that when he was hospitalized in 2001 for the s. maltophilia, was when he first had issues with aspergillus (which is a mold that can grow in CF lungs because of all of the antibiotics that CFers are on).

We are also going to continue the increased treatments and hope for the best. I am really hoping that he can go back to school tomorrow. Keep your fingers crossed. :) He'll be getting extra treatments still. If he gets worse we need to go back in, but at this point I'm thinking that he'll start to improve. The Prednisone is going to go on longer this time, and that should help... It was after he finished the Prednisone before that he started to feel worse.

Thursday is when they'll be doing the prizes for the magazine fundraising drive that Ricky was so excited about, so at the very least it would be good if he were back by then.

So, yay. :) Go Ricky!

Sicker

Ricky doing his breathing treatment
Originally uploaded by Beckerbuns

Ricky woke up late again today, headache and throat killing him and chest still tight, and informed me that he feels even worse than he did a week ago when this was first flaring up. So I called in sick to work and kept him home, and called the CF nurse. We are heading up there shortly for a 10:30 appointment. The nurse let me know that she is calling over for a bed proactively. We'll see how his tests and/or x-ray come out; he may very well be admitted. I'll update later.

Ricky's 2008 school pic

Ricky 2008 school pic
Originally uploaded by Beckerbuns

This is Ricky's school pic for this year, seventh grade. The poor kid had a miserable sinus infection that week and he just looks terrible. The school photographer is doing retakes in their studio in November and we're going to get them done, since he missed the school retakes last week because he was home sick.

He is doing okay. We had a good weekend. He says that he was better for a few days (probably the Prednisone) but now he's back to having a very tight chest. That probably means the pneumonia is still hanging around. If his x-rays still look bad on Thursday, he'll have to be admitted. Guess we'll wait to see what happens.

One of you out there in blogland mentioned praying for Ricky. Prayer is ALWAYS okay with me. Just so you know. :) I believe in the power of positive thinking and prayer. Sometimes it is all we have to hang on to when things look so bad. So thank you. :)

holding steady

Today I worked and the kids were at my mom's. I sent Ricky's portable compressor over there so he could have the midday treatment (which he has been having since he got sick). Everything went fine with them, but my mom was definitely ready for me to pick them all up by the time I got off of work. :)

Tonight Ricky took his last dose of Prednisone, I believe. His behavior has actually not been a whole lot worse. He has maybe been a little more moody and sensitive, but not to the extent that I was worried about.

At bedtime, I asked him how he was feeling, because during his evening breathing treatments he had been coughing a LOT. He told me his chest was very tight and he was hot. I felt his forehead and he did feel a little warm. I didn't take his temperature because he almost never runs a fever (even when he had RSV as a toddler). He may, however, have been hot for him, if not technically running a fever.

I have this fear and sinking feeling that he is going to end up in the hospital even after all of this. I hope I am wrong.

Yesterday I talked to the nurse at the CF clinic to give her an update and find out what was going on with the sputum he coughed up on Tuesday when we were up there. She told me that it so far had only grown normal flora. Not even the pseudomonas that we've been fighting for years; it hasn't shown up in a year. But the good news is that no BAD bugs (like b. cepacia or MRSA) have shown up. These were only the preliminary results, but I'm hopeful that this will be what the final results say as well.

Tomorrow Ricky would ordinarily have soccer, but it has been pouring rain here and I'm pretty sure they'll close the field because of mud. The particular field that he plays on is very specially taken care of and they are pretty conservative about closing it when it has been raining a lot. It's just as well, since I am not entirely comfortable with him playing with the pneumonia obviously still hanging out. We are planning instead to go to my friend Shari's condo complex for their monthly game day. That will be just Ricky's speed. :)

Whew, I'm tired. But I wanted to put this update out there. I am still cautiously optimistic, but given the course of Ricky's recent exacerbation, I'm also feeling discouraged and fearful, in a way.

Doing better!

Ricky went to school today! I told him that he should have them call me if he wasn't doing well, but he stuck it out the whole day and did just fine. He did not go to PE... That would have been too much for him I think.

When he got home he was flushed and happy and had had a good day. Go Ricky! I have questioned him a few times throughout the afternoon and evening as to how he is doing and he is cautiously optimistic. He doesn't seem to think he is much better, but he appears to me to have more energy and to be breathing more easily, even though he has been having some truly frightening coughing fits.

So... Better. Yay.

I forgot to mention that the boys' Medi-Cal cards came yesterday. Hooray! Perfect timing. So Ricky is all set for his follow-up appointment next week. I applied for California Children's Services today and because he has no-share-of-cost Medi-Cal, he should be approved for that. It would be nice if we'd hear about the SSI soon as well.

Also, I have more news about an exciting thing we get to do this month or next, but that will have to wait for when I am not falling asleep at the desk.

I'm exhausted as Misty only allowed me 4 hours of sleep last night (ugh) and I was a zombie at work this morning, so I am off to bed now! Goodnight and thank you all for visiting and keeping Ricky in your thoughts.

Ricky today

I thought Ricky might be well enough to go to school today, but I should have known better... When I have been on Prednisone it has taken 2-3 days for me to start feeling a little better.

He got up before me this morning. He even had breakfast. :) But he said his chest was tight and there was mucus in his throat that kept coming up (ew, I know) and he had not gotten dressed yet. I made the executive decision, after a discussion with Ricky, to keep him home. So I called out sick to work and stayed home with him.

Ricky stayed comfortable on the couch and I got some stuff done around the house. I kept Misty home. While she napped, Ricky and I had some bonding time. :)

I spoke with Ricky's teacher and she was saddened to hear that he was sick. Today he missed picture retakes (the ones he had taken a month ago were pretty awful because he had a sinus infection at the time and was miserable) and also missed turning in his magazine fundraiser stuff. Luckily all of the orders he got (15 of them at last count!) were online, so that shouldn't matter.

I also spoke with his mental health professionals today. I canceled the meeting we are supposed to have at the house on Friday just because things are so uncertain AND I may end up working that day to make up for missing at least three days of work this week.

In the afternoon, Ricky had individual therapy followed by group therapy. Apparently he was fairly regressive in individual therapy, rather like a 2 year old according to the therapist. This may have been a product of his not feeling well or the Prednisone affecting his mood. However, he did fine in group therapy. He is the youngest and paradoxically most focused person in his group.

We'll see how things are tomorrow. I hope he starts to get better. I observed him working pretty hard to breathe a few times today, but I know that the Prednisone can help the tightness and maybe help with the breathing difficulty. A while ago, in his sleep, he had a pretty bad coughing fit.

I really hate this disease. I just hope we see some improvement soon. This is four exacerbations in a year; his disease has definitely progressed. Before he went in a year ago, he had been out of the hospital for a year and a half.

That's it for now.