Sinus surgery scheduled

Got word today that Ricky is scheduled for sinus surgery a week from this Friday... March 10! Wow! I guess we had better start getting ready.

We're going home! and more!

Hi all...

We finally talked to the pulmonlogist today and the one whose rotation it is, is OURS, Dr. Conrad, so we had a nice long conversation. She is discharging him tomorrow! Hooray! She said if want to have that sinus surgery on Thursday she could probably think of something to keep us in for, such as further play therapy (he's gotten rather aggressive lately though I think it's more from being cooped up in the hospital) or speech therapy (which I don't think he needs anymore).

I told her we'd rather have him go home and shoot for having the surgery a few weeks down the road so we could prepare him for it in the meantime, also have a lengthier conversation with the ENT and work him up for surgery more properly.

The pH probe results, he has no reflux. Zero. This is without meds! So she wants to take him off propulsid and prilosec (which we had recently switched to from zantac). Hallelujiah! She's going to be in touch with the gastroenterologist so things may change at some point but for now HOORAY less meds. As I am sure you know this comes as a welcome surprise.

He still hasn't cultured anything. Not even pseudomonas, which he last cultured two years ago. Dr. Conrad said they'll probably culture the mucus they get out of his nose to see if that's what's in there. I'm nearly positive it is. What else could muck things up so badly?

Ricky also has a large number of this particular kind of white blood cells in his blood which indicate a sensitivity to aspergillus though it hasn't shown up anywhere else. I guess this shouldn't come as a huge surprise to me either but wherever it is, it sure is hiding well!

Last night, when Ricky was asleep, Andy and I had an opportunity to visit our little friend (age 2) with CF, a little girl, who had the surgery on Friday. She's in a room down the hall. She was doing great, up and around, she just gets upset when the flush out her sinuses! She also had a g-tube put in at the same time. It looked a lot less scary than I expected. It was a great learning experience.

That's it for now... Hopefully next time I write we'll be home!

Sinuses

We finally saw the ENT (otolaryngologist) yesterday. Our appointment got delayed and we got a big runaround, I guess she was in surgery most of the day. Ricky, meanwhile, was thrilled to be out of his room (we were seeing the doc in the clinic downstairs) and was going ape**** (the only word I feel is appropriate here) crazy, acting terrible and not listening to a word I said. So anyway, our appointment was at 2:15 and we finally saw Dr. Messner at 4:30.

Firstly she showed me the CT's. Ricky's ethmoid (between the eyes) and maxillary (under cheekbones) sinuses are completely clogged full of crud. So of course she recommends surgery. The catch, she is not available till Thursday and that means we'd have to stay inpatient till then. Or we can go home but then the insurance authorization takes 2-3 weeks. I am leery of styaing in the hospital any longer than we have to. She says he'd probably need another surgery in a year if we could not get him to do flushes in the meantime. Which I am nearly positive he would not do (I mean he would probably not be able to sit still for them).

I had done my research and asked her if it would be possible to just take out his adenoids (also enlarged) because that has been shown (admittedly, in non-CF patients) to help with sinusitis. She said we could certainly try to do that and see if it helps, then do the sinus surgery later. It was a bit of a frustrating conversation because I wasn't able to get a straight answer, like, what would she do if it were her kid. It was like "well, every kid is different..." and then another emergency came up and she just rushed out of the room in a big hurry without a goodbye or anything... I did get the nurse practitioner's number to call if I have questions or decide to do the surgery.

I think we will probably do the whole shebang. The literature says that adenoidectomies usually don't work on kids with CF for this kind of problem,
though no formal research has been done. I want to go home for a while though so I can schedule vacation time and such. One thing that encourages me is all the success stories I am hearing from so many of you.

It looks like we'll be going home on Monday. That's tentative but we'll keep everyone updated. We don't have the pH probe results yet but I hope to get them today. Talk to everyone later!

More hospital

Good news... Ricky has gained a few pounds since being in the hospital which is always good in a kid like him.

Bad news... he's having sinus troubles (he has dark circles under his eyes from the sinus problems) and had a sinus CT the other day. We are seeing an ear-nose-throat doc (ENT) on Friday who will probably suggest surgery. The sinus problems probably caused all the problems he's having that put him in the hospital... post-nasal drip and all.

He's had lots of CF-related tests since being in the hospital and tomorrow is a pH probe to test for reflux. He hasn't had this test in a couple of years. He's also having a body mass test which involves pinching calipers. I'm sure he's going to love that.

Third IV put in last night. The first one lasted four days, which I tell you was a miracle, the second one lasted almost two days, and then the tape over it got wet in the tub (Ricky was being very careful but sometimes these things happen) and the IV slipped out a tiny bit causing the vein to clot. d0h! Last night, though, we got the master IV putter-inner and for once it didn't take 5 people to pin him down. She
slipped it right in there!

He will be in the hospital a full 10 days, no going to home IVs after all (the docs don't think we are ready for it. HELLO I think I can handle it.) So that means we are going home Sunday or Monday. I am hoping for Sunday because we have Little Mermaid on Ice tickets for that evening.

Hospital update

Ricky is doing well. Today he had an ECG (because he takes this drug called propulsid which can cause heart arrythmia... luckily it turned out fine). Otherwise it is the same as usual. He gets IV Tobramycin at 11 p.m., 7 a.m., and 3 p.m. What drives me crazy is that they do the pre- and post- blood draws with the 11 p.m. draw, so they have to wake him up. Why can't they do them mid-day??? At least I make them do finger pokes rather than full-blown blood draws.

I worked yesterday and I'm working a four hour shift today, but I got Monday off. The next day I work is Wednesday and I'm hoping we'll be out by then (and on home IV's). Right now he's with a volunteer (as he was most of yesterday since my shiftless soon-to-be-ex-husband (can you tell I'm bitter?) didn't show up when he said he would) which makes me nervous but since he's 4 he understands a lot more of what we tell him about his IV, etc.

The IV is the original one and they'll probably switch him to a PICC line which he can have at home and have home IV's which will be either good or bad... I'm not sure which...

So we're hanging in there... Just wanted to update everyone...

Ricky's in the hospital

It's been over two years since Ricky's been in the hospital but now he is. It was sure a battle to get him there. I'll spare you all the details but say this: This is the last time I have the pediatrician manage a respiratory problem. The pulmonologist at Stanford didn't want to see him, just give us advice over the phone, which I am not comfortable with. Come to think of it we have never seen them in an urgent situation, only at our regular every 3 months appointments. Doesn't that seem a little weird?

I'm home to check email and I'm supposed to go to work but I think that can wait. This will be his first full day there. I'm not sure how long he'll be there. He's getting IV tobramycin and something else that starts with a t, something I haven't heard of before. His little roommate is a 2 year old girl recovering from viral meningitis (They say she is not contagious at this point) and they get along great which is nice.

More updates later. I work Saturday and part of Sunday so I'll be emailing again.

Update

Ricky has had a nasty cold, sinus infection, and cough for over a month and a couple of weeks back I was sure he'd end uphospitalized. Today we went for xrays and I thought you all might like to see this -- the latest on Ricky and his "sinus saga".

Once we finally figured out which radiology place to go to (we switched insurance on January 1) Ricky had his lungs and sinuses x-rayed (the lungs were a surprise but an excellent idea considering his nasty cough). We took the xrays back to the pedi and she showed me that he definitely has lots of junk in his sinuses (of course, as I am finding out from the CF community, this is not a surprise and a CT scan would probably have told us more information) and definitely has infiltrates in both lungs, right around the center (by bronchial tube). So she is going to have the radiologist take a look at everything and then they'll make a decision. She said something
about "attacking it with strong stuff" and I don't know if she means hospitalization.

The sinus thing is new to to us but I've had a feeling for a while that this would be a major manifestation for Ricky. I'll update you all when we hear something...