Andrew and I did go up to LPCH to get Ricky out of the hospital. From the time the doctor came to let us know Ricky would be going home, to the time we actually walked out the door was FIVE HOURS. That's how long it took for everyone to write up their orders, paperwork, etc. But anyway, we are home.

He'll be continuing on prednisone and an antibiotic for the next couple of weeks, and will start back on his TOBI inhaled antibiotic for a while too. He's in great spirits and so glad to be home.

After the boys and I got home from the hospital, Dave and I took them to Build A Bear Factory to get their own bears. They already have some, but they went with other people to get them so this was the first time I'd had the experience. It was really fun! Ricky got a black bear in army camoflauge and Andrew got a little tan colored (hypoallergenic, too) bear with a soccer outfit (complete will ball and shinguards -- do bears have shins?).

We spent a great deal of time with Ricky up at the hospital. On Saturday Dave, Andrew and I went to dinner with my mom and her best friend from high school, who was visiting from Los Angeles. On Sunday, Dave, Andrew and I spent some time at Community Day at Stanford, doing some fun activities and crafts and also watching some performing arts put on by Stanford students. It was quite fun!

Ricky continues to improve! On Saturday he and other patients were visited by Pet Assisted Therapy Services. Some really cute Polaroid pictures were taken and I'll scan and post those when Ricky gets home (he has the pictures with him at the hospital). Andrew also visited with a Saint Bernard from PATS at Community Day and I have a picture from there as well.

Anyway, it's planned that Ricky will have spirometry today or tomorrow and will come home tomorrow if things go well. Hooray!

Ricky in his hospital room. This is one of my all time favorite pictures of him.

Dave went to see Ricky today. I did not get to see him. :(

Ricky was apparently exceptionally well-behaved today. He even did his sinus flushes without complaint!

Dr. W told Dave that Ricky will have spirometry on Monday or Tuesday, and this will determine whether he really goes home on Tuesday. As long as the scores are better than the other day, he will go home. If they are worse, he will stay for a total of 14 days. Argh! Such suspense!

I work Monday, and then I'm off the rest of next week. Yay!

As I expected, the pulmonologist (Dr. W) and the ENT (Dr. C) decided in their meeting today not to do surgery on Ricky. While he's congested and infected right now, the sinuses have not been making his lungs significantly sicker as they did five years ago prior to his previous (and only) sinus surgery. So we're going to just wait for now, and take him back to the ENT clinic in the summertime after the usual colds and bacterial infections have calmed down.

This also means no PICC line placement tomorrow. He'll stay in peripheral IVs until he goes home.

The interesting thing is that when I called the nurses' station, Dr. W actually answered the phone herself, because she'd paged someone and was waiting for a call back. So I talked to her directly after I'd hoped to be lucky enough even to speak with Ricky's nurse. Dr. W is really nice. I almost wish we could switch to her as our pulmonologist (she's the one on the CF team who's covering this week). She told me that Dr. C was very dedicated to Ricky and spent a lot of time with him and she felt they'd made the right decision.

So, what this means is that Ricky can come home on Tuesday afternoon/evening. I am happy about him coming home after only a week.

So, yay, good news. :)

I did not update last night because my mouth was so sore. I went to the dentist to get my permanent crown seated (after getting a cleaning). It took TWO AND A HALF VIALS of lidocaine (I take it that's a lot) and every darn thing was numb EXCEPT for the tooth that was having the crown seated. It was pure torture. They finally resorted to giving me nitrous oxide, which they rarely use, and it STILL hurt. The nitrous made me care a little less but it still hurt. I finally got out of there three hours after I arrived, and didn't get up to see Ricky. :( The good news is that today I'm feeling fine.

About Ricky:

The ENT came in and scoped Ricky's sinuses (while Dave and Andrew were there). Ricky was actually really good for this (amazing!). The ENT saw lots of pus up on the right side, and said that there had also been lots of pus in the ethmoid and maxillary sinuses on the CT scan, but that he rarely saw a CF kid's CT that did not have lots of pus. So the debate is whether to do sinus surgery on Ricky while he's in the hospital. The last time he had sinus surgery was five years ago, and at that time it was thought that he wouldn't go another year without having another sinus surgery. So he's gone a long time. They would do the surgery during this hospitalization if the pulmonologist feels that sinus problems are adversely affecting Ricky's health, such as causing more lung infections. In truth, they really are not, so my bet is that the ENT and pulmonologist will decide not to do the surgery. We'll find out later today, after they meet and review the tests etc.

After all that NPO nonsense, Ricky didn't even get his PICC line yesterday. The PICC team finally came in the afternoon to examine him, and he battled them even over the ultrasound they were using to peek at his veins to find a good one. They determined that it would not be appropriate to place the PICC as planned (under light sedation) but rather under heavy sedation, which as I understand it is the next thing to being knocked out entirely. The next opportunity to place a line like this is Friday, and he's scheduled... But it's thought that he might get out by next Wednesday, in which case it'd probably better to keep him in peripheral lines and skip the PICC. But if it's decided that he's going to have sinus surgery, we'll keep the PICC appointment. At least that's how I understood it.

Ricky actually didn't have his chest x-ray until after Dave got there. The CNA took Ricky down for this and apparently he froze up in the hallway outside the x-ray room, refusing to go in and not telling anyone what was wrong. So Dave was called and he threatened Ricky with losing his allowance, which always works, and Ricky did the chest x-ray. The doctor told Dave that the chest x-ray was actually really good. When I talked to a resident on the phone later in the evening, she mentioned a small spot of pleural effusion (another link here) in the left lung, which they were not too worried about. Reading about this condition really scared me (and also just helped me to realize that it might be the cause of Ricky's pain upon breathing in), but she said the spot was small enough that they wouldn't consider draining it. It apparently happens in CF lungs or in lungs that are just sick in general.

Spirometry, for those who don't know, is a test where a person blows hard into a machine that measures lung capacity and strength. Ricky had this test yesterday and did fairly well. Some of his numbers were higher than the last time he had it (we last went about a month ago if I recall correctly) and some were lower. Overall, not too worrisome.

Ricky's blood tests are so far coming back normal. We're still waiting for the IgE level, which will show if he might be having yet another problem with allergic reaction to mold that might be causing all of this.

There was also some confusion over meds. One of the psych meds Ricky takes is called guanfacine. The doctor also ordered guiafenesin (cough syrup -- in CF kids it's used to thin the mucus) which apparently totally confused the nurse. But I believe they worked it out.

Today I'm off work at 2:30 to come home and meet the bus. Then Andrew and I will go up and see Ricky and will also find out what the plan is.

And that's all for now. Whew.

Just talked to a nurse (not Ricky's nurse -- she was on her lunch) and Ricky STILL does not have his PICC line. This means he has been NPO (nothing by mouth) all day. They are still planning on doing this PICC line today but it's taking forever. Dave and Andy are on their way up there and Dave's going to find out what's going on. This poor kid -- he usually eats almost constantly, especially in he hospital. This has got to be tough for him.

Looks like I might not go up there after my dentist appointment. By that time it'll be pretty late so I might just stay down here. We'll see.

I called a little while ago and spoke with Ricky's nurse, whose name is Becky (that's gotta be good luck!). She said that he is definitely going to have the PICC line put in this morning, and also he'll have a chest x-ray and sinus CT. Whew! Poor kid! The first one is the only thing that he might misbehave for, but luckily he'll be pretty heavily sedated.

She said he was happy and talkative, and wasn't too upset about being NPO (nothing by mouth, because of the PICC line sedation)... at least not yet. ;)

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...