Upon reflection...

It has been a while since I posted to this blog.  I need to go back and post updates from his two hospitalizations this year.

The good news is that Ricky has been doing pretty well.  He went to live with my mom at the end of November of last year.  He has continued to be very compliant with his medications and treatments.  He switched to the school near my mom's house and the program there has been amazing and wonderful for him, including a summer where he attended more school and participated in a workability program where he learned job skills.

Last week I took Ricky for his senior pictures, and today I took him to pick up his schedule for school.  It hit me.  His senior year.  He's a senior in high school!

When Ricky was born, the average life expectancy for people with CF was 26.  It's now late 30s.  Had Ricky had been born in the 80s, chances are he would have died by now.  So for me, seeing him entering his senior year and reaching his 18th birthday is monumental.

While we still have eight (at last count) specialists to see on a regular basis, an IEP a half inch thick, and a hospitalization at least once a year, I consider us incredibly lucky.  There are parents out there who have recently lost their children around Ricky's age or younger to cystic fibrosis, even in this time of medical advancement.  My heart is heavy every time I hear about another child or adult lost to CF.  In time this battle for a cure will be won.  I hope it is in time to save Ricky and others whose parents and families and friends are fighting to keep them alive.

And on that sobering note, here's my boy in his ASB card picture, taken today.  By the way, as of today's visit to the kidney doctor, he is 6' and 167 pounds.  Not bad for a scrawny 33 week premie, eh?

Back in the hospital

Ricky is in the hospital... He was admitted early on Wednesday after we spent Tuesday evening in the ER.  He's been sick since New Year's Eve, with a cold he never really kicked.  After finally having a 10 day course of antibiotics that still didn't improve things, I took him in.  The chest x-ray was so-so but his lungs sounded god-awful.  And so now he's in for the first time in 2-1/2 years.

His pulmonary function test on Wednesday showed his lung function down 10% from the previous clinic test.  So that precludes home IVs for now (you might recall that we did that in 2008).  If he can bring it up after a week, we might be able to finish up at home.

When he was first admitted, a culture of his port grew out something.  So they put him on IV Vancomycin for that and IV Bactrim for the lung infection.  A re-culture of the port (which is acting strangely... it likes to infuse but balks at blood drawback until he contorts into strange positions) showed nothing growing so the Vano was dc'd.

Today we started having some trouble.  First I got sick during the night with another one of my stomach episodes.  I was supposed to work but I ended up emailing in sick and took some meds to sleep it off.  At some point the resident doc who was looking after Ricky called to let me know that he hadn't pooped since he'd been in.  I had an inkling that something was up when someone came to take a KUB (belly x-ray) of Ricky when I was there with him Thursday morning.

A bit of background... The last few times Ricky has been in for lung infections, the major issue has ended up being bowel obstruction.  The hospital policy is to not let CF patients leave their rooms during inpatient stays, due to fear of cross-infection and fear of infecting immune compromised patients (such as chemo patients).  This means Ricky doesn't get to walk around like he would do if he were sick at home, and therefore the poop doesn't move on out.  The last year he was in the hospital, over two years ago, he spent weeks in the hospital past what he should have been, because of the poop issue.

So when he went in this time, I made sure the admitting docs knew that Ricky needed physical therapy to keep him moving around the room or whatever, and came prepared with a med list.  So, you know, he'd get his Miralax and stool softeners.  And yet, the admitting doctor ordered the meds as prn (as needed).  *headdesk*  So he went a full 36 hours without getting them and BAM... he's blocked up.  The KUB showed that the blockage this time is in his small intestine.  Meaning... He was fine and clear before he went in.

Sigh.

So I went up there today and got the "skinny" (ha ha) from the resident who was on.  She had mentioned on the phone that they wanted to put Ricky on Go-Lytely (nasty stuff, commonly used as prep for colonoscopies) but he was refusing to drink it so they wanted to put an NG tube down.  Ricky had apparently told the doc and the nurse that he would not take Miralax either, and he wouldn't do the magnesium citrate they had because it was lemon-lime, the nastiest of the nasty flavors.

The doc and I came to an agreement... Ricky would go on Miralax as long as I could sneak it into his shakes (Carnation Breakfast Essentials, which we brought with us).  The doctor obtained a whole day's worth for us so we could give him as much as possible.  I went out to Walgreens and got him the blue flavor of Gatorade, which he likes (and I could put Miralax in) and three bottles of the grape mag citrate, which he would drink.

Before I left the hospital tonight, Ricky drank a medium-sized bottle's worth of Gatorade, one entire bottle of mag citrate, and two shakes each with a one dose of Miralax.  When I left, he said he could feel things happening in his intestines.  No surprise there!  I go back tomorrow afternoon, and I'm going to spend the night.

Sleep study

Ricky is having a sleep study tonight. This one is for clinical research. He's happy that he'll be getting $100 plus a gift card, but he also knows it's important that he'll be helping scientists to learn about how sleep is affected by cystic fibrosis. So, yeah, awesome.

We had to get here at 6:00, two hours before his expected bedtime, but by 6:30 he was already getting sleepy and asking if he could sit down. That's my boy, always a great sleeper. He was all hooked up and nodding off by 7:30, and now I'm in my separate little bedroom, which is pretty nice, with a double bed and Ikea furniture... A mirror opposite of the room Ricky is in.

Ricky has been coughing more lately. We are a few months short of the two year mark since his last hospitalization. I know it's inevitable that he'll end up in there again one way or another, but I hope it's not soon.

Okay, I am off to try to sleep myself. I can't find my headphones so I can't listen to my iPod, and somehow the battery on my Nook is dead even though I haven't been using it. But I have an actual physical book I can read, Breathing for a Living, by Laura Rothenberg, an adult with CF. Fitting! A week ago I saw the Bay Area premiere of "The Power of Two" with Ana Stenzel and Isa Stenzel Byrnes. Guess it's a CF month!

Ttfn.

So, how is Ricky doing? :)

Ricky is doing okay. He's had a few random bad days, being tired, not feeling well, etc. but he is actually doing great in general. School has been a struggle again (still?) -- getting him there and actually having him work. At his annual IEP it was decided that he is going to be attending half days. He leaves after four periods + lunch. But so far he's still struggling to get through the day. *sigh*

Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.

Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.

He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!

Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)

O2 and a couple of other things

I'll try to be quick but I wanted to give a little update...

Ricky had his sleep study a couple of weeks ago and it showed mild obstructive sleep apnea but the main issue was his oxygen percentages dropping into the 70s and 80s. Ultimately the CF doc ordered that he be on 1L of oxygen at night only. The concentrator was delivered on Wednesday but he's having trouble with it because he hates using a nasal cannula. He's had an aversion to those things, or anything up his nose, since he was 4 and had to have sinus flushes after sinus surgery. He has some sensory issues besides, and ultimately, though he has really tried, I am not sure this is going to work for him. I'm going to call the CF nurse and see if we might be able to get him a face mask and do it that way. Only problem with that is then we have to crank the O2 up to 5L. Sigh.

He has basically been doing a lot better otherwise. More time in school, fewer migraines. So that's good. And hey, he spent all of 2010 out of the hospital. Go Ricky!

He has a 1:1 aide in school now. I'm not sure yet what he thinks of that. Next up: An update of goals meeting in school, and in April his annual IEP meeting.

Close call

Ricky was pretty sick last night, wheezing and coughing. Today he was not much better even after lots of breathing treatments. I ended up getting him in to see the pulmonologist and though his O2 was down a little bit, his PFTs were pretty great, and his lungs sounded okay too. So we went home with prescriptions for Prednisone and Levaquin. Sounds like he just has some reactive airway stuff going on. Whew. Of course, tonight he started to spike a fever and had trouble sleeping... So we'll see what tomorrow holds. But at least he didn't get admitted.

Long overdue update (again)

I can't believe it's been almost three months since I last blogged here. So here's a thorough update on Ricky.

Last I blogged, I had just taken Ricky to the dentist up at UCSF. He was supposed to get his teeth pulled several weeks after that.

I took him back in July and that day he fell asleep on the way to UCSF. I went to wake him up when we got there, and his nail beds and eyelids were blue! He got a little oxygen in the dental clinic and didn't end up having his teeth pulled. In fact, we ended up spending the afternoon and evening in the UCSF emergency room making sure he was okay.

So Ricky has been rescheduled and is going to get those teeth pulled next month. We are going to try for doing all three, under only local anesthesia. If that doesn't work for any reason he'll go under general anesthesia. Hope it all goes well.

We spent much of the summer doing summery things... Day trips to the beach, a Weird Al concert, a They Might Be Giants concert, trips to Gilroy Gardens. We had a lot of fun!


At the beach with friends.


At the Weird Al concert.

Ricky also spent a lot of time doing this:



I have been back and forth with the neurologist. Ricky has been to see him a couple of times and is going again this week. Ricky sleeps a lot, has had these absence-like seizures, and the dizzy spells combined with nausea and extreme tiredness, throughout the summer and into the fall. The neurologist offered Imitrex to help with the spells. Ricky's supposed to take them when he starts to feel rotten. We have used a pill once. It took away the headache and dizzy spell but knocked him out for hours. More on this farther down...

So school started in late August.



First day of high school!

Yeah, first day of high school. Where did my baby go? The first week was really rough. Ricky became pretty severely dehydrated on a couple of occasions. It was a really hot week. I took him in two flats of bottled water that's kept in his special education classroom for him to use as much as needed. I also bought him some Gatorade more recently, because water may not be enough.

He has also had some neurological issues... Sleeping or passing out and becoming unresponsive. Two times were serious enough that the school personnel called 911. The first occasion, I was able to rouse Ricky and he did not go to the hospital. On the second occasion, I was up at Stanford with Andrew at an appointment and the school nurse called to report that Ricky was experiencing nausea and dizziness. I thought it might be a migraine but I couldn't get there very quickly. As happened on the first occasion, an ambulance was called. The second occasion, I couldn't get there on time and he was transported to the local emergency room. A CT scan and blood tests were done and they couldn't find anything wrong.

We are going back to the neurologist this week and I am hoping we can get to the bottom of things. This is so frustrating. I am also meeting with people from the school this week to talk about a plan.

Ricky started the school year in mainstream 3D design (which was called crafts when I went there -- yes, to this same high school), mainstream Algebra, and mainstream PE. As of this Monday, he will be moving into a math class in his special education class, and adaptive PE. The Algebra class was way too fast paced for him, though he really did try to make it. He was apparently making a great effort. The PE class is made up of way too many students for Ricky to get the help/accommodations that he needs so he is transitioning into adaptive PE with another student in his special ed class. These sound like good solutions.

This month, Ricky saw the gastroenterologist and the pulmonologist. He has grown a bit taller and put on some weight -- he's 5'3 now and around 100-101 pounds. Tall and skinny. He does eat well so hopefully we will see more some improvement in his growth; his growth curve has flattened out and dropped within the past several years.

Pancrecarb, the digestive enzyme that Ricky has been taking for many years, was un-approved by the FDA this year -- apparently for no reason except for it being at the request of the Cystic Fibrosis Foundation. This left us with a quandary: What enzymes should he take? We ended up going with Creon, which he took for about five years starting with his diagnosis right after birth. Well, this time, in ways I will not enumerate here to save him some embarrassment (and since I've already Twittered about them), these Creon enzymes are not agreeing with him. He actually missed two days of school. The nutritionist at the CF clinic has offered up several possible solutions and so far they are not working. So we are hanging in there, hoping that at some point the FDA will re-approve Pancrecarb.

The pulmonology (CF clinic) appointment went great. Ricky's lungs are sounding and performing great. His growth, as mentioned, is going well. Hooray Ricky!

We go back to the pulmonologist and gastroenterologist in December.

Ricky's bipolar disorder is currently stable. He is due to go back to the psychiatrist. This summer he again attended camp for bipolar children and teens and he did great. He also made a new friend with whom we've had a couple of visits -- including a trip to the Palo Alto Airport Day last weekend... Ricky, Andrew, and Ricky's friend got to ride in a small plane, and had a blast! Here's a picture.



So I guess that just about catches us up. I promise not to take so long before I update again!

Ricky's week

Ricky went to the pulmonologist this week for a CF checkup. His O2 saturation was down just slightly, he'd grown a tiny bit (but his growth curve is still flat), and his spirometry looked great. He's still got the end of the sinus infection. He's going to start on Periactin again. It's supposed to make him have a bigger appetite. He was on it for a couple of years a while back and it never seemed to do anything, but we'll see what happens this time.

A couple of nights ago, Ricky had what was clear to me to be an absence seizure. He was sitting up watching TV and doing his breathing treatments, and I went over to give him his next nebulizer. He didn't respond to me. Then I noticed that his eyes were open but rolled back in his head. I thought maybe he'd gone to sleep but it didn't make sense because he was sitting straight up. Plus, he had had a 5-6 hour nap that day and by rights, should not have been sleepy even though it was 10 at night. About a minute later, he came out of it and asked Andrew and me what had happened. He was pretty confused and it was clear now that he had *not* been sleeping.

I called the neurologist's nurse yesterday (well, Thursday) to report the seizure. She has yet to call me back -- which seems pretty irresponsible. I want to know what happens next. Change meds? EEG again? Guess we'll wait and see.

The graduate

IMG_5668_cropped
Originally uploaded by Beckerbuns

Thursday of last week, Ricky graduated from middle school! It has been a long, hard road, but he made it. He graduated with 300 classmates. On Saturday we had a graduation party at the local pizza joint.

Last week, Ricky also visited the gastroenterologist. He has grown a little but his weight is basically the same and his growth curve has flattened out. His lungs sounded great, though, even though he has been battling a sinus infection.

Tomorrow it's back to the pulmonologist. Hopefully all is well. Next month he has summer school and bipolar camp.

Sick

Ricky is sick... He started with a cold on Memorial Day and it went to sinus infection and then double ear infection. He is so congested and miserable and he has been out of school all week.

I got him to the pediatrician Friday. I am not crazy about this pediatrician. She usually writes us off, saying "Oh, it's viral." This time she took us seriously and prescribed Bactrim. His O2 sat was down to 95 (low for him) but apparently his lungs sounded fine! If he's not doing better by Monday or seems worse, we need to call again.

Long-overdue update!

So, what's been going on with Ricky, you might ask? :)

Lots!!! Where do I start? Well, his cardiology appointment started with an ultrasound of his heart. It still showed a dilation of the ascending aorta, just like a year ago. The cardiologist let us know that it had not changed in size from a year ago. She drew a picture of the heart and its arteries and veins and explained that most likely this would never cause Ricky problems. On the other hand, this sort of defect is almost never found in a child who does not have a syndrome of some type.

And in that department, a couple of weeks back I got word from the genetic counselor that the first genetic test, which was a long shot anyhow, had come back negative. This week, I got a call from her about the other test we were waiting for, a genetic array. This time, an abnormality was found. Ricky has extra genetic material (known as a duplication) on one part of chromosome 11. We are not sure yet what this means -- in truth, the field of genetics is really still in its infancy. The next step is for them to test my DNA (they already took blood when they took Ricky's 2 months ago) to see if I have this too, and if not, they'll want to test the boys' dad. He has offered to be cooperative with medical stuff, so we shall see (if it comes up). On the other hand, from what I have read online, many times these sorts of defects happen spontaneously during or just before conception, and have nothing to do with inheritance. So mysterious!

Ricky has had one ER visit lately; it was due to some pretty severe abdominal pain. It turned out to be nothing, and his lungs look(ed) great. He has been on Dulcolax on a regular basis since then and it seems to help.

He is still having pretty bad dizzy spells. I am so frustrated with the neurologist that I haven't called there in a while. I was supposed to call the nurse to tell her how we had decided to proceed. I upped Ricky's morning dose of Topamax, which hasn't done a lot, but may have improved things.

Had a recheck with the psychiatrist, mostly to check in, and things are looking good.

I took both boys to their new dental center, which was amazing! Disney Channel, video games, all kinds of fun stuff. Wow. Unfortunately they were unable to work on Ricky's complicated teeth... He needs to have his bicuspids (all four -- adult teeth) removed so his cuspids can come in (I may have that backwards). He needs this stuff done before he can have orthodonture. This dental center felt uncomfortable doing this work (or even cleaning his teeth) given his medical history and all of the meds he is on. They gave me a referral to take him to the dental school at UCSF, where the procedure would be supervised by a physician as well. I am glad they're being careful, but jeeeeez.

School is going okay. He has good and bad days. He has days where he refuses to do work at all. We had his IEP meeting last month and decided on his placement for high school -- it happens to be the same place I went to high school. I need to make an appointment for Ricky and me to go visit the classroom. I met the teacher at the IEP meeting and the program sounds really good.

There have been sibling... Issues. Ricky and Andrew both have limited understanding of what Misty is capable of "getting". She wrecks their stuff, that sort of thing, and they can't figure her out. They think she is being malicious but I honestly believe that at her age (almost 4) she is mostly being... 4. Curious.

Ricky's digestive enzymes, Pancrecarb, have not been approved by the FDA by its digestive enzyme approval deadline (April 28), so the CF clinic staff has been scrambling to get people set up with new enzymes. We have quite a few bottles of Pancrecarb left, but after he runs out he'll be on Creon. We are not sure of the future availability of Pancrecarb, which appears to have a grim outlook. Creon was what Ricky was on from when he was diagnosed to when he was put onto Pancrecarb, so it will probably be okay. It just sucks to have to switch to something else after what he's been on all this time has done so well for him.

His labs also came back with his vitamin D being significantly low, so he's going to have to go onto an extra supplement (besides what is in his multivitamin) for a little while. Don't want him to get rickets! Yow!

So, now we wait to see how things go with the genetic tests. CF-wise, Ricky has been out of the hospital since November and things are looking good. His lung function is great. :)

That's all for now!

update - doctor visits

Week before last, Ricky saw the neurologist about his increased fatigue and dizziness on the increased Topamax dose he's been on for a while. The decision was made to reduce the dose back down to what it was before and see what happens.

Ricky had an eventful week last week. On Monday, in addition to a bunch of other labs that he gets done yearly, he had his three hour glucose tolerance test, which ended up being normal, yay. That day he also saw his gastroenterologist and that went well, too.

On Tuesday, we had an eventful day. Ricky saw the endocrinologist, who looked over his other blood tests from the day before. His thyroid level was, as always, borderline low. Most of the other stuff looked normal. He has grown two inches in the past year, and the endocrinologist decided to put off any intervention with regard to his delayed puberty. They want us to come back in a year.

Next he had his yearly full pulmonary function tests. Those went well, and his numbers looked great.

Then Ricky saw the pulmonologist. His weight has flatlined and his growth curve is actually dropping. We're supposed to push lots of weight gain shakes. His lungs sounded great and the doc was pleased with the results of the PFTs. His iron was a bit low too, so we're temporarily decreasing his iron supplement frequency.

Ricky's dizzy spells, meanwhile, have been debilitating now that the Topamax dose has been decreased. Monday he spent much of his school day sleeping off another dizzy spell. So I called the neurologist's nurse to ask what we should do. She called me back to tell me she'd ask the doctor and get back to me. She called back and left a voicemail... I couldn't believe her response. Either we increase the dose back up... Which will make him sleep all day again... Or he just "gets used to the dizziness sensation." Seriously? What kind of a choice is that, exactly? I was so livid I couldn't even call her back to tell her what our decision was (for now, I have not increased the dose). I don't know what to do. Second opinion? Angry voicemail to tell her just what I think of her message?

I've also been playing phone tag with the cardiology clinic. Ricky is supposed to go there for another heart ultrasound with regard to the enlarged aortic valve that the geneticist mentioned (the pulmonologist explained it to us, so now I know a little bit more about what we're looking at).

The aortic valve issue and the dizziness (in this case referred to as dysautonomia) could also be symptoms of Ehlers-Danlos. Of course, he's not going to be tested for that unless the genetic tests we're waiting on come back as normal. And we won't have those results for weeks.

Also made another psychiatrist appointment... It's been a while since Ricky's been to see his psychiatrist.

Things just never get dull around here, eh?

Another diagnosis? And an update.

We had an appointment in the Genetics clinic a earlier this week. I've been mulling things over for a while now, unsure of how to post what we learned.

For a long time some of Ricky's other doctors and I have been wondering if there might be something else going on with him... Some other genetic disorder. You may have seen me post about this here before. Among other things, he has these signs of "something else":

-hyperflexible joints
-high, narrow palate
-heterotopias (undeveloped gray matter) in the brain
-soft, thin skin
-thin veins
-issues with teeth
-issues with vision

We saw the geneticist back in 2006 and were supposed to go back a year later. Unfortunately, with Misty being born, time slipped by and I just finally got him another appointment. This time around, the geneticist did a lot of diagnostics, including examining Ricky's fingers and toes, measuring his eyes, his armspan, etc.

Finally, the geneticist and genetic counselor explained what they planned to do. First of all, blood was drawn for a full chromosome analysis. They did this when we were there in 2006, but as time goes on there end up being more and more genes identified. As the geneticist says, "In genetics, time is on our side." My blood was also taken as a control for this test. Secondly, he had blood drawn for another test that is for one of the connective tissue disorders that relates to the heterotopias -- it's more common in females . One of these tests will take 6 weeks (done at Stanford) and the other one will take 8 weeks (sent to Boston). If they are both negative, he will then have testing for Ehlers-Danlos Syndrome. Based on what I see on that page... Well, it really sounds like Ricky.

Here's something else I learned: When Ricky had his EKG (heart ultrasound) in April of last year, when he was in the hospital for his CF and was also having his dizziness investigated, the result was a finding of an enlarged aorta. Now, that would have been a useful thing to know, wouldn't it? I was pretty upset to find this out in via an offhand remark by the geneticist! The genetic counselor subsequently emailed Ricky's pulmonologist, who out of all of the specialists basically manages his care, to ask about a visit to a cardiologist. The pulmonologist agreed that Ricky should see a cardiologist to find out if there is really a problem. (Heart issues are also common in some connective tissue disorders.) So we are waiting for a call on that.

I have mixed feelings. If Ricky does have Ehlers-Danlos or some other connective tissue disorder, it would be good to know. It would be nice to have some answers. On the other hand -- jeez, how much does one kid have to deal with!?

In CF news, today I got a call back from the CF nurse in regard to Ricky's visit last week. His DEXA (bone density) test was normal (yay). His sputum culture showed pseudomonas aeruginosa and stenotrophamonas maltophilia, both bugs he has had before, though the second one is fairly new. We'll start up his TOBI (inhaled antibiotic) tomorrow.

The rest of us are doing okay... Misty apparently wants some health attention of her own (well, okay, I know she doesn't WANT it) and has a virus that's made her wheezy and miserable. She was seen by her pediatrician this week and her chest x-rays were a bit iffy for pneumonia. So we are monitoring things. It's probably just a virus and hopefully she improves soon. She has been having breathing treatments regularly. The coughing spells are pretty brutal on her. :(

Guess that is it for now!

We have a plan.

I called the CF nurse this morning after Ricky woke me up at 5:30am unable to breathe well, and having an upset stomach. I left a message that we needed to come in.

He had a neuro visit scheduled for 1 and the CF nurse called back later and said to come in at 11. So Ricky and I dropped Misty off at day care and headed up to Stanford.

Ricky has lost a little weight and is down to 97 pounds but he's up to 62 inches (5'2"). His oxygen saturation was 98 -- excellent -- and his spirometry was right where it has been for quite some time. His lungs sounded great as well. The doctor asked a lot of questions and, combined with the physical examination, concluded that whatever is going on with him, which is definitely significant, is not pulmonary.

So we had lunch at Taco Bell and then came back for his neurology appointment. First we saw a resident, because Ricky's doctor had been called to the OR. He came later. Both of them did thorough neuro exams on Ricky and apparently he was okay there. The ultimate decision was to back off on the Topamax so that he'd be on his old dose, and see if all of this stuff stops.

Our last appointment of the day was his bone density scan. That was fine... He was very good for it. :)

So I backed off on the Topamax tonight and by tomorrow he'll be on his old dose (25mg two times per day). Hopefully he starts to feel better.

Ricky's sick

For about a week now, Ricky's dizziness has been far more severe (along with periodic fever and chills). He's been sleeping a lot more (like 8+ hours in the middle of the day one day last week!). He's had headaches and stomach aches, and just hasn't been feeling well.

The CF doc prescribed Septra, which I couldn't understand. This was clearly a virus as far as I could tell and the CF nurse could tell.

Well, then, today, Ricky slept all day yet again (he has had at least 4 hours of nap(s) every day since this started) and this evening, even after his breathing treatments, his chest was tight. He said that last night he'd had trouble getting to sleep because his breathing was bad.

Tomorrow he has an appointment with the neurologist and an appointment for his yearly bone density scan. Those are both up at Stanford and I'm going to try to get us there early so we can maybe see someone in the CF clinic. I do not like how quickly this has gone downhill!

status quo for now

Wow! It has been a long time since I posted... Over two months!

Just wanted you all to know that Ricky is doing very well. We have had a couple of emergency room visits for CF issues that turned out to be not as serious as we feared, thank goodness.

He still hasn't entered puberty, so we're going to the endocrinologist soon, and we will also be visiting the geneticist again, in March. We are supposed to go there periodically for a chat and further blood tests, since it's suspected he's got something else going on (yeah, like we need something else!) and there are new genetic tests available all the time. Also have a pulmonology appointment coming up, the same day as the endo visit, and he'll also have full PFTs that day. Going to be a very exhausting day.

Unfortunately, Ricky's dizzy spells are back in nearly full force. The neurology nurse gave me the go-ahead to up his dose of Topamax to see if that helps, so I've started the titration process. I hate that these spells are back because they totally incapacitate him and make him miserable.

Things are going well in school. He continues to be a teacher's aide in the office and they all love him there. We are gearing up for the transition to high school (!!!) this fall. I'm not sure yet where he's going to be going, but one of the options is my alma mater! Now that would be weird! Anyhow, we're having the transition IEP meeting in March and I should get more details then.

Keep your fingers crossed that Ricky stays healthy through the winter!

Home!

Ricky got home on Monday! Everything was looking good over the weekend. Monday morning, he had a fasting glucose test and lipid panel (both turned out fine) and spirometry that looked around 10% better than at admission.

So we left the hospital at around 2:30 on Monday and Ricky was even back at school the next day. This kid is so resilient. He came home on oral antibiotics and is back on inhaled.

Go Ricky, go Ricky! :)

Ricky update

Ricky's spent all day in an emergency room bed and just made it to an inpatient room.

He came in with almost all of the signs of H1N1 (fever, chills, dizziness, lethargy, cough, headache, body aches, vomiting) and they eventually swabbed him for it. We'll have the results tonight.

His fever is now 103 *with* Tylenol on board. His chest x-ray, which looked perfect a week ago, is now not so great, with infiltrates in the left lung. His sats were 96ish when we got here and now he's around 90 and on the edge of needing oxygen.

He's started getting IVs of the antibiotics that treat his usual bugs to protect him from secondary bacterial infection... Fortaz, Tobramycin, and Trimethoprim. He also got a first dose of Tamiflu. I was ambivalent about that because of the side effects, but given how bad this got in a hurry, I finally consented.

Yeah, he went downhill quickly. Whatever this is, H1N1 or not, it's kicking his butt. His little sister is at her dad's while we're here, on her third day of fever, achiness, congestion, and possibly ear infection. My mom, Andrew and I have had various versions as well.

Hopefully he's on the road to recovery soon.

If you'd like to send him a virtual card, he is in room 3541 and his name is Richard Whicker. The link is right here.

home! and on vacation!

Just wanted to let everyone know for sure that Ricky got to go home on Monday. His PFTs in the morning were improved, though not back up to baseline, but they were willing to let him come home as long as I was comfortable with that. I said "YESSSS!!!" and he got some oral antibiotics and orders to start back up on the inhaled ones and we were on our way by about 2. Hooray!

Now we are in the Portland, Oregon area visiting Misty's dad's parents (aka the kids' grandparents). On Friday we're driving to Seattle and then on Saturday out to Quincy, WA to visit my friend Kat and her family. Then hooommmme 14 hours though I'm contemplating stopping partway back (in a place we can visit more friends -- Redding!).

Ricky has been more tired since he came home... He did sleep much of the way here in the car... But he overall seems to be doing BETTER now that he is out of the hospital. Who wouldn't, really?

Goodnight -- I'm exhausted!

well, darn it. :(

He is NOT going home on Saturday. Probably not on Monday, either.

His PFTs today were bad, down at least 10%ish in the areas I was told about.

The resident was alarmed to find out that Ricky had not been doing his vest treatments all week (since being on the NG tube; he says it hurts to do the vest with that in). This likely caused the drop in his PFTs and his need for oxygen for several days.

It is so frustrating that she just realized this. Everyone else has known this all week.

So yeah, he can't go home Saturday. He is having more PFTs Monday and then IF those are good, he MIGHT go home on Tuesday. The resident is not optimistic about him being well enough on Monday.

I am so, so disappointed. Crushed. No Ricky home. More hospital. Delayed, or no, vacation.

This disease SUCKS.

Just feeling sorry for myself tonight. :(

Ricky was a little disappointed but mostly said... "The vest hurt me." "I was sitting down when I did my PFTs so they weren't very good." "I got dizzy when I stood up so I had to sit down." I think he's resigned already. I'm just disappointed. :(

I know the picture above looks dramatic, but it's not really. It was taken last night (Wednesday); Ricky was sleeping and Misty was just making sure he was okay. :)