Today (6/27) was his latest CF clinic visit, at 11 am. Ricky’s spirometry numbers were down, his lungs sounded a little junky (not awful though), and as I suspected, he has lost a pound. (His appetite the past few weeks has been horrendous.) He has lost 5 pounds in the past six months (and he definitely looks it) and his height growth has also slowed down.

Soooo, we got some new prescriptions: One for Bactrim, two for normal saline and hypertonic saline to put together so he can start hypertonic saline treatments, and one for Periactin, an antihistamine that is supposed to increase his appetite. We also took home some chocolate Scandishakes and Carnation Instant Breakfast cans along with an action plan from the nutritionist.

Good news: Sinuses looking great, tummy soft, and he’s compliant and actually knows a bit about his meds. They want us to educate him more about his meds so he can recite stuff himself. I can do that.

We will start the Bactrim tonight, the hypertonic saline as soon as the pharmacy gets it in, and the Periactin as soon as approval is obtained from the psychiatrist. The CF doc just wants to make sure that the psych meds don’t interfere with the Periactin and vice versa.

Tomorrow we are going to see the NP at the gastroenterologist’s office because Ricky’s reflux has been increased. Since that’s a darn good reason for him to maybe not want to eat, maybe they’ll want to increase his anti-reflux meds?

Before I go I want to thank all of you who continue to send letters, cards, stickers, pictures, books, and everything else! We just renewed the PO box. Ricky and Andrew love getting mail and so we’re going to keep going. The mail really gets us through the tough times.

I forgot to update you all… Bad me. Ricky came home last Friday (after 9 days) after his chest x-ray came back better than on admission (still not perfect) and his PFTs came back beautifully (86%, his best score in over a year, which makes me wonder why nobody noticed his decline til this month!).

The day after he got home, Ricky started refluxing pretty badly. This is pretty weird since he’s on an adult dose of Prevacid! It has subsided… But if it doesn’t stay away the GI has a few tricks up her sleeve.

Oh, Ricky also had a fecal fat measurement test and we’re waiting to hear about the results. It might take a while but it will be worth it since we can find out if he needs to be on more enzymes.

Andrew is doing well, gradually progressing in mainstreaming at school. I wish he could progress faster, since he is incredibly smart, but sometimes one must wait for good things.

Dave is doing well… I can’t remember if I ever shared that he got promoted to the manager of his nursing unit. Being a manager means mega stress but he’s handling it really well. I don’t know what we’d do without him.

As for me… Yesterday I experienced for the first time ever, preterm contractions. So I’m sitting here drinking gallons of water and juice (it’s supposed to help) and I’ll see the OB this afternoon to see what she says will happen next.

Yes folks, after a really rotten chest x-ray a month ago, and an even more rotten chest CT two weeks ago (along with continued weight loss), Ricky has scored a bed in the hospital for a clean-out. :(

Last night he got his PICC line in, but there was so much scarring the PICC team was not able to get the line all the way in, so it’s considered a midline (which should still be able to accommodate his meds and blood draws). A similar thing happened the last time they tried a PICC (October 2004) on the OTHER side. So it may be the end of PICC lines for us. I don’t think he’s in often enough to have a port. So, blah.

Otherwise, Ricky’s in good spirits. To him the worst part of the hospital is the pokes. While he’s in he’ll have a 72 hour fecal fat test (we just saw the gastroenterologist on Monday and is ordering this). He will miss today and tomorrow from school and then be in the hospital all next week — his spring break! Ugh for him — good for not missing school.

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.