I left Ricky just before 8 last night and he was as settled in as he was going to be. To my surprise, he'd totally battled the nurses who were trying to put in his IV. He lately has been very good about these things. My theory is that the simply wasn't feeling well. Finally a nurse from the vascular access department came up and placed the IV after Ricky had calmed down a bit.

When I was leaving, his meds still had not arrived, so I gave him meds from home since he was nearly asleep and it would be impossible to wake him up to take meds later. I can't believe how slow that pharmacy is -- we'd been there 6 hours and they still hadn't sent the meds up.

This morning Ricky should be having his PICC line (this is a link to a cancer site, but the idea is the same) placed. He's terrified about this prospect, as last time he was in (in October) it took three hours to place it because of a problem with the arm they started with. I reminded the vascular nurses about this so they could check the chart and find out which arm was the better one. Neither Dave or I will be able to be there for this, but Ricky will be heavily sedated (which unfortunately means he won't be allowed to eat this morning -- he is NOT going to be happy about that).

I am going to work this morning. Dave's off, but he has a physical with his doctor (he's a new patient, so it's a long appointment and he'd have to wait a couple of months to get another one if he cancelled) at 10:15. After that he'll wait for Andrew to get home on the bus (about 2:00) and then they'll go up to the hospital. I am off work at 2:30 but then I'm going to get my permanent crown placed and have a cleaning. I'd rather skip it and go to Ricky, but given how much this temporary has been bothering me, I'd really better do it. So after that I'll go to Ricky (and reunite with Dave and Andrew) and we'll see what happens from there.

It's weird not having Ricky at home. Of course it makes me sad, but it's also strange to be able to sleep in a bit, not having to get him up to do his breathing treatments in the morning.

Last night I cancelled the hotel reservations for our trip to Morro Bay/Hearst Castle, since Ricky will be in the hospital for at least a week, if not more. Today I'm going to cancel the Hearst Castle tickets. There is supposed to be a service charge for cancellation, but I'm going to attempt to get them to cancel it given the circumstances.

The pulmonologist is so far saying he'll be in at least a week.

Guess that's it for now.

The nurse returned my early morning call at 8 am and let me know that she'd informed the nursing supervisor that Ricky needs a bed. We are supposed to hear back from her when a bed becomes available. Four hours later and we are still waiting!

Ricky is doing okay. Still breathing with difficulty and coughing a lot (both of which he did all night too). We are watching endless episodes of "Fillmore" on Toon Disney...

This morning, after keeping Ricky home from school because he wasn't feelong well, I took him to the pediatrician.

Well, at the pedi's his lungs were all crackly. She put him on Augmentin and Orapred (the latter, she gave him a dose of right away) and at my suggestion she sent us for a chest x-ray, after giving him an in-office breathing treatment.

After a 45 minute wait, during which Ricky fell asleep on me (he's really, really not feeling well), we had the chest x-ray. A while later the pedi called me and said that it showed bronchiectasis (duh) and infiltrates in the lower lobes of both lungs, the left one being worse. I had already called the CF clinic and left a message. The pedi got the fax # up there and was going to send the x-ray report.

A while later she called me back and said she'd spoken with the CF doc, who seemed to think the ilfiltrates were no big deal (!) and anyway, she stated, there are no available beds. I informed the pedi that I hadn't seen him this sick in years (working so hard to breathe and all) and she suggested we go to the ER.

I called Dave (my RN hubby) at work (after leaving my third message of the day for the CF nurse) and told him what was going on. He suggested we come to the unit he works at (different hospital) and check Ricky's oxygen saturation.

So we went there and Ricky's sat was 92, which is low for him but I guess not too low in the grand scheme of things. I finally got tired of leaving messages for the CF nurse and had her paged. She sounded irritated when she called me back and said, well, quite frankly, there are no beds. Give him fluids, keep him elevated when he sleeps, and do lots of breathing treatments. DUHHH. But thanks. She said sorry, we can't do anything else. If you are very worried tonight then take him to the ER. She said they already had one CF patient hanging out in the ER for treatment because of there being no beds.

I drove the rest of the way home feeling very grumpy, annoyed, and helpless. Meanwhile Ricky belly breathed all the way, looking miserable.

The CF nurse called back later and sounded a little less brusque. She told me the same treatment things and reemphasized that I should take him to the ER if he was worrying me.

So Ricky has eaten some, drunk some, and currently is passed out on the couch looking uncomfortable. I don't think either of us will be getting much sleep tonight, with me constantly looking in on him, and him struggling to breathe...

That's it in the way of an update for now...

Ricky had had a runny nose all weekend and was feeling generally crummy (increased cough too) yesterday so I called the pedi pulmonologist on call and she called in a prescription for Bactrim for him. He's on it now.

This morning Ricky woke up complaining about his chest aching and being short of breath. And while he doesn't have a fever (he rarely does, even when very sick) I'm keeping him home -- mostly because he never complains and when he does it tends to be serious. I think I'll call the pediatrician and get an appointment to have him listened to and maybe get a chest x-ray. Hopefully it turns out to be nothing. Goodness, he just coughed and it sounded horrendous. Sigh!!!

Today I took Ricky to the orthopedic surgeon. We'd been referred to him because of his turned in left foot. The doctor examined him only very briefly and then came up with a diagnosis that is actually quite positive: internal femoral torsion. Here's what the literature he gave me says:

"...Internal Femoral Torsion is caused by the inward rotation of the thigh bone, or femur. This problem can be very upsetting because it occurs at an older age and many children are aware that they have an awkward or different way of walking or running... A variety of treatment methods... Do not hasten the natural tendency toward improvement which generally occurs prior to the age of 12. By the age of 12, 95% of the children will have improved enough so that the condition is no longer noticeable... At the age of fifteen if a natural correction has not occurred there is the possibility of correcting the intoeing surgically."

Whew. :) Also, I got the results of Ricky's blood tests from last week. Everything was normal (!) and his IGE level (indicator of the level of allergy-causing mold growing in his lings) has continued to drop.

I took Ricky up to Stanford to see his ophthamologist on Wednesday. We waited almost an hour to see her and then she saw him for only about 15 minutes.

Good news! No drops. And his prescription remains the same. (He has glasses due to farsightedness, astigmatism, and strabismus in his left eye that has been corrected using the glasses.)

While we were at the clinic building we also dropped by the CF clinic and got a new Acapella Choice, the new Acapella device. It's easier to clean than the previous version (Ricky's got cracked which is why we got a new one).

Also had a conversation with the respiratory therapist about the new ThAIRapy Vest, which is smaller, quiet, and easier to use. For $6,000 we can upgrade to the new machine (we have the old one, and we've been using it lately because of the Acapella being out of commission). We have insurance that covers durable medical equipment and the RT said I should conatct the Vest company to find out how to get this upgrade. I sent an email this morning.

Took Ricky to the clinic for spirometry today. It's somewhat better and somewhat worse than two weeks ago, depending on which part of the data you're looking at. He's going to continue on his new medication and in a month we are going back for more spirometry and another iGE level (that measures the allergic reaction in his blood). He had a blood draw today, a trough level for the new medication, and he did perfectly. I am so proud of him.

We were out geocaching yesterday (www.geocaching.com if you don't know what it is) and were on a kind of a hilly hike. Suddenly Ricky started sitting down at every opportunity, being really quiet, etc. I asked him if he was okay. Dave asked him if he had a rage coming on (sometimes he gets really quiet when that is about to happen). He shook his head.

After we found the geocache, and were on our way back to the car (long hike though), he said he felt dizzy. I had him sit on a fallen tree and put his head between his legs. Seemed like he was having some breathing trouble too so I gave him a couple of puffs on the inhaler. When he got up, after a while, he said he was still dizzy and had a headache. Dave offered to piggyback him up the hill but he said he was okay. So we just walked really slowly up the hill and back to the car. He sat for a little while on another log next to the car, dizzy and headachey, and said he was really sleepy. Then he got into the car and felt a lot better within about 15 minutes.

Dave's theory (he's a nurse so he knows a little more about these things) is that Ricky, who has been a little sick (coughing and wheezing a lot more lately), had a O2 saturation drop from all the hiking, and got dizzy and headachey and tired from this. A little while later he was able to recover after resting.

This has never happened to Ricky before, so I know I sound kinda naive. :) It kinda worries me but I realize that if he's sick maybe we shouldn't do these long hikes (even though the exercise is good for him).

As I mentioned the other day, Ricky has had a bit of a rough time of it lately with his CF.

Yesterday the CF nurse coordinator finally called me back and let me know that Ricky's IGE level (measures his allergic level -- usually a high number indicates he's reacting to mold in his lungs, such as aspergillus) has spiked over 500, which is the highest it's ever been. So the doctor wants Ricky to start taking Sporanox, an anti-fungal medication that he has taken in the past.

Two problems... 1. The insurance is balking at paying for this expensive medication (it's $290 for a 30 day supply, but that's actually a lot less than many of his other medications) and is requiring prior authorization. Luckily I have some left that's not expired, from when he was taking it before. 2. It is supposed to be taken at least 2 hours apart from any antacids. Ricky takes Prevacid in the morning and at night. So if he's going to take Sporanox twice a day that means he'll have to take the morning dose at school, a couple of hours after breakfast; and at bedtime, hopefully a couple of hours after dinner. I have put a call into the nurse about this.

Good news: If it's the fungus that's causing his problems, he hopefully won't end up in the hospital, since IV antibiotics wouldn't do a thing for him anyway. If we can nip it in the bud with anti-fungals (which he has responded to well in the past) we should be able to get through this.

He's quite a little trouper.

I forgot to post about Ricky's clinic appointment on Tuesday.

First of all, good news: Ricky (9 years, 2 months old) is now 141.2 cm (4 ft 7 in) tall, which is 75-95%ile, and 33.5 kg (73.8 lb), which is 50-75%ile. This is outstanding for a kid with CF. To keep up the good work, we got a whole case of Nutrin with Fiber shakes.

Not so good news: His lung function is down (I am not sure of the exact numbers). So he is starting on an Advair inhaler and we are going back for spirometry (lung function testing) in two weeks. If it hasn't improved by then he'll have 2 more weeks of Tobi. After that, if still not improved, we're looking at IVs. I'm confident that he'll improve just fine, as he always has before!

He coughed up some mucus for culturing. Ricky also had blood drawn for an igE level (measures his allergic reactions -- we'd find out if he could be growing mold in his lungs). I'm proud to say that he was very brave.

Edit 1/29/05: I talked to the respiratory therapist last night and she said Ricky's FEV1 was 63%, down from 75% last time.