Ricky's still on for bipolar camp August 12-14. We are so excited! At the same time I am nervous but hoping things go well. :)

Ricky had a hard time at day care yesterday and was grounded yesterday evening and today. I'm a bit worried because Friday is his last day of summer school and then he'll be at day care all day every day until school starts. I hope he does all right.

I found out yesterday that Ricky will be starting back to school on August 23. That's the earliest either of the boys has started school. Usually they start back right before Labor Day or right after.

I found out yesterday that Ricky haa finally been approved for his Make a Wish wish, a Disney cruise that we hope to take during Spring Break 2006. We are all very excited. I looked into when Spring Break will be and guess what... Andrew's is the week before Easter and Ricky's is the week after. So one of them is going to have to miss school. Grrr. Well, this is a once in a lifetime thing, right?

Yesterday Dave took Ricky to have two of his lingering baby teeth pulled. He did totally fine! He is so proud of his teeth, carrying them around and showing them to everyone. Last night the tooth fairy (ahem) forgot to come. Hopefully tonight she comes.

Today I was home as Dave was working. I took Ricky to the gastroenterologist this morning, an appointment I made yesterday because I was concerned about his swollen belly and puffy face. Well, he is still weighing in at 85 lb. and the doc was totally unconcerned about the belly... It was soft. She was quite pleased with the weight and even told us for the first time ever that he should not have nutritional supplements. Wow! His BMI is 20; his weight is 90th %ile; and his height is 80th %ile. Holy moley! This is great news for someone with CF, almost unthinkable. She did order a blood draw (which we did today) and a belly x-ray (which we'll do tomorrow) just to confirm that things arer okay. I left that appointment with a huge smile on my face, let me tell you.

The pedi has prescribed some Augmentin, I've stocked up on saline nasal spray and Guiafenesin, and we are still going on vacation. :) Dave is bringing home microwaveable hot packs for Ricky told hold onto his ears on the plane.

He will feel better soon. Yay!

Ricky is sick. He has had a stuffy nose for a few days and yesterday he started to sound nasally and appeared flushed.

Today I gave him Tylenol and sent him to school, but I barely got through one training at work when the teacher called to say that Ricky appeared feverish and was lethargic. When I picked him up he was sleeping and had a headache.

We went to the pediatrician. First he pulled an almost-marble-sized block of wax out of Ricky's right ear and then examined him. His lung sounded fine but his sinuses and the back of his throat were totally gummed up with thick drippy mucus (I know you wanted that visual, friends!).

The pedi called the CF doc who told him that there is really no good anitibiotic to treat these sinus things and that Ricky needed his sinuses flushed out with tobramycin, by an ENT doc. I and the pedi's nurse each called the ENT clinic and were told that they have two docs off today and no appointments available.

This really made the pediatrician mad and he called the CF doc again. She was going to walk over to ENT and see if she could get someone to see Ricky. The pedi sent us home and was going to call us later to tell us what to do. That was about an hour and a half ago.

A woman from Ricky's orthodontist's office called to go over the plan for his treatment. As it turns out, after reviewing the x-rays, the orthodontist has decided Ricky needs four (was six, but Ricky lost two of them last week) lazy baby teeth pulled and to come back in six months to decide what to do (hopefully by then he'll have grown some more permanent teeth). They're sending a referral for the extractions to the pedi dentist, who should be calling me for an appointment. I had these same teeth pulled out when I was approximately the same age... Same "extreme crowding" problem...

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.