Friday, July 3, 2009

The Motherlode of Penny Updates

Recap: Last Thursday Penny went in for an endoscopy and overnight pH probe (needs 24 hours of data) and a delayed gastric emptying test the following morning. She aspirated either while under general anesthesia or when she first woke up and I fed her a bottle. During her naps and nighttime sleep on Thursday they discovered her oxygen saturation levels were dipping - down into the 80s and sometimes as low as the 70s. Friday night she had a very high fever of 104.5 degrees. We cleared up the pneumonia symptoms with a course of antibiotics (that she will finish tomorrow) but the O2 levels remained low. We've met with genetics, feeding specialists, neurology, GI, pediatrics, pulmonology. The only specialist we never saw but are doing out-patient is be immunology/allergy. We were finally released on Wednesday and Penny is on oxygen for naps and nighttime but she otherwise seems healthy to us.

What did all the tests show?

GI: The pH probe showed she does have acid reflux. A normal acid level is 4% and hers was around 14% during certain parts of the day (note: she was off her acid reflux meds for 4 days before the test). Recommendations: Pepcid isn't as effective as PPIs (and kids quickly get a tolerance) so we are doing 3.25 ml of a PPI (omeprazole) twice a day and alternating it with twice a day 1 ml of pepcid. We do not know the results of the delayed gastric emptying test (but I think it will be negative). Also a couple of months ago she had a "normal" barium swallow test. The endoscopy showed inflammation - which can be caused solely by acid reflux or also by allergies. The lower part of the esophagus showed possible signs of a fungal infection but they don't think it was active so no treatment needed (thrush, which Ned had in his mouth when he was breastfed, is the sort of fungus you find). Her colon sample was completely normal. Her doudenum (the first section of the small intestine) showed inflammation but not a general inflammation that they normally see with kids with allergy. In fact, this has stumped them a little - it makes it look like she has a peptic ulcer, but they are confident she doesn't because they have never seen this in kids. The pathologist said if he didn't know the sample was from an infant he would think it was from a 50 year old with a pepcid ulcer. They are sending the labs to another pathologist for a second opinion. Since the treatment would be a PPI anyway we aren't doing anything special.

Allergy: Blood tests were normal so far but we are going to do skin tests and some other blood allergy tests (that will take a few weeks). In the meantime we have her on EleCare, an elemental formula. At first they were talking about taking her off all solid food because we don't have a reliable way to figure out what she's allergic too (since she doesn't show rashes or blood in the stool). I literally almost had a breakdown (which would have been my only one) after the GI resident told me this - can you imagine two kids walking around and one can't have solid food but her brother can? But since she eats very few items anyway we can wait for the skin tests before making changes (but keep her off milk/soy). The new formula seems to be improving her constipation so we took her off lactulose for now. Our GI doctor thinks we may end up doing a 6 week steroid treatment followed by another endoscopy to confirm whether she has allergies. The steroids would suppress the allergies and if she still has an inflamed esophagus that means it is only acid reflux. This might be useful in coming up with a long term plan but I'm in no rush to have a repeat of our experiences.

Immunology: They doubt she has any underlying immune system issues since she does not seem to catch many infections.

Feeding Team (only Husband met with them so this is second hand): They are concerned about how limited a number of finger foods/baby food she's willing to eat. We may bring on board a more specialized feeding occupational therapist - not clear if that is someone coming to the house or someone we bring Penny too (I'd much prefer the former). To increase calories we are doing a 30 calorie formula mix and they want her eating about 24 ounces in her bottles per day. We are up to 19 already so I'm hopeful we can avoid a feeding tube but that is obviously not completely off the table if she doesn't gain weight. We will keep seeing the nutritionist in our GI's office.

Genetics: We are doing some "zebra" tests - including an outpatient cystic fibrosis "sweat test" but no one thinks any of those things are likely. I call them zebra because doctors are told that if it sounds like horses not to check for zebras. But here they are looking for very rare zebras.

Neurology: she was seen by a resident, a fellow and a few other neurology types. It was a "look and see" evaluation - no scans or blood work. They were totally charmed when she waived good-bye. Apparently all is good on the neurology front. Phew.

Pulmonology: Her last lung X-Ray (don't get me started on how much I hate the number of X-Rays she's had) showed the fluid is working its way out fine and she has good "breath sounds". They think her breathing issues are now in the upper respiratory (ENT zone). We did a pneumogram one night and it was supposed to confirm whether there was any blockage (ie, adenoids) that resulted in the low oxygen but the study came back negative. They are somewhat puzzled by that result.

ENT: Her wonderful ENT was one of the people who pushed (along with her primary GI) to get Penny released. He doesn't intend to see her again until the "acute event" (ie, aspiration event) is cleared out completely - about three weeks. Then we'll have her evaluated and may go back in for a sleep study. Eventually her adenoids will probably come out but it won't be a quick rush in and do it process - this make time some time/evaluation (I'm guessing by the end of August).

We have 6 follow up appointments already scheduled. The home oxygen is tough - her face is getting raw from the tape (we use tagederms) and it disrupts our nap and bedtime routine but we are trying to work on a smoother integration.

I think the synopsis is that our visit found another problem (low O2) which may have some effect on her failure to thrive but doesn't address the underlying "not eating enough" problem. She does have reflux and maybe allergies. I guess it was useful but extremely exhausting. I suspect (as I've mentioned before) that in a year she'll have outgrown all of these problems and we'll never really know what's "wrong". We are just thankful that her "chronic" conditions are hopefully not life-long ones.


H said...

Sorry, dude- so many questions, not so many answers:(

Nancy said... that it caused more questions than answers, but it's good that you got the testing out of the way.

Glad she's home :)

Anonymous said...

What an ordeal, for all of you. I'm so glad you're back at home.

Liz Jimenez said...

So frustrating, after all of that, to have so few answers.

Looking forward to seeing all of you tomorrow!

Anonymous said...

Good lord, I see why you are a successful lawyer- you have a very advanced brain! I think mine would short circuit if I had to keep all those details inside at once. Whoa. Very impressed that you're staying on top of everything and maintaining your sanity. I think your theory that all of this will clear up within a year is right on the money. It's certainly good news that there's nothing chronic going on. My parents tell me I was ill for quite a while as a baby. By the time it was figured out that I was allergic to milk, I had pretty much outgrown the allergy. I was all about the soy before it was trendy ;)

What A Card said...

Wow, what a ride. You handled yourself admirably! I had a couple of single days like that and I know how phenomenally draining it was...I can't imagine a whole week!

Glad you're home and hope you get some answers out of it all.

Gretchen said...

Thanks for that update - glad to hear that you are home again and glad you've found some great specialists.

Bessa said...

It sounds like you have great perspective on all of this. I would think 19 oz. is pretty good (I have a little guy born Oct. 1 '08 and he only eats about 24 oz./day, but perhaps more solids-calories than Penny).
She certainly is adorable. I hope you get back to 'normal' soon.

Anonymous said...

Wishing you all the best! You are all troopers! And it seems that Penny is such a resilient little one! I'm sending positive thoughts your way!

LauraC said...

Oh goodness, this sounds like the worst episode of House ever. Tons of tests, tons of doctors, little sleep, and no answer at the end. You guys are troopers and I hope you can get some kind of resolution soon.

Susan said...

Glad she is home and ditto most responses above. Very frustrating/exhausting time of it. Let's hope little Penny certainly does outgrow these symptoms and starts eating soon!!!

Shelley said...

We've been there......the oxygen, the reflux, the lactulose, the other meds. Hang in there! At about 14 months, things FINALLY started to get better for Gavin. We still have to monitor things closely, but it is SO MUCH better. We didn't have to go through the amount of tests that you guys have been through. How exhausting!

I hope things improve for you guys soon!