Sofie's still struggling with her feedings. She has okay days and bad days with the bottle. An okay day is 13 ounces and a bad day is 5 ounces. We're way off track from where we were a couple of weeks ago and her weight is falling, so we've got to figure out what's going on and fix it. We sat down with Dana yesterday to brainstorm what could be going on and came up with a couple of things to try to get her back on track. Here are the concerns/possibilities we discussed...
(Sorry, I'm thinking "on paper" here, and it's long, so if you want to skip to the last two paragraphs you'll get all the important parts.)
1)
Another reherniation - always a possibility, unfortunately. The good thing is that Sofie already has a surgery clinic follow up scheduled with Dr. S.P. on Tuesday of next week, with a chest
xray just prior to the
appt. If the chest
xray is questionable, or just because she's been sneaky before, I may request a CT just to put my mind at ease that we aren't dealing with another recurrence. Her
xrays were so deceiving before her last surgery. She'd been
reherniated for a long time and had several
xrays that didn't show stomach or bowel herniated, but the CT showed everything and what a difference! Lots of bowel and her entire stomach had been herniated into her chest and wasn't seen on
xray. Her
xrays are now used for teaching purposes at Children's to show how deceiving an
xray can be. It's not a good thing to be so bizarre that you're used for teaching.
Things that make me think she could have another recurrence:
- Pain - When we visited family at Thanksgiving we took her jumper, which she LOVES jumping in. She can really go to town in it. The first half of the week she'd jump like crazy in it until we'd take her out after 10-15 minutes to keep her from burning too many calories. Then later in the week when we'd put her in it, she'd start jumping and cry out sometimes like she was in pain. She'd keep jumping, but not as wildly as before, so we'd take her out. I thought maybe she'd just jumped too much in it earlier in the week and either her muscles were sore or maybe she tweaked a joint somewhere? But maybe she was hurting somewhere internally from another recurrence starting? Could it be the recurrence started then, like the margin of diaphragm tore away, but then nothing actually herniated through until recently, causing her to start refusing the bottle?
- Throwing up - Before her most recent surgery, she would throw up after NG feeds. Thanksgiving week she was still getting NG feeds and she started throwing up after them again. (She hadn't thrown up since her surgery.) She also had a cold at that time and was drooling quite a bit. It's not uncommon for kids to cough, gag, or throw up when they're teething/drooling a lot or when they have a cold with postnasal drip - we attributed the throwing up to these things, but any new throwing up is always a red flag for us, since her only symptoms of reherniation have been throwing up after NG feeds and refusing to eat. After that week she stopped throwing up, but we also stopped giving NG feeds when we started the NG weaning the first week of December. Last week when we did a couple of days of NG feeds again, she threw up after one of them (a 6 oz feeding). But she could have just thrown up because her stomach has shrunk over the last month and 6 oz was too much for her.
- Diminished lung sounds - Her lung sounds are diminished over her left lower lobe. But they kind of always are, because that lung is hypoplastic and dysplastic. But there hasn't been a change in her lung sounds since surgery, which is reassuring.
- Refusing the bottle - She first started refusing the bottle back in July when she had her first recurrence.
Things that make me think she hasn't had another recurrence:
- No change in lung sounds.
- No change in respiratory status or work of breathing.
- Consistently sats 95-97% on room air, sometimes 100% on room air. (But remember she was satting 98% with her first recurrence in July, and her left lung was completely collapsed. She's a toughy.)
- She can tolerate a 6 oz. bolus of Pedialyte over 15-20 minutes and has never seemed uncomfortable or distended, and has never thrown up after an NG Pedialyte bolus. In theory, wouldn't 6 oz of anything make her throw up if reherniation were the issue?
2) Air Hunger - Does she work too hard to breathe and eat and need supplemental oxygen for feedings? Her PO feeding started going downhill the weekend after Christmas. So what changed that week? Two things. One being we took her off oxygen, since we got our own sat monitor. To test this theory I put her back on oxygen for a full day or so and those days were actually her very worst days for PO feeding, so I ruled out air hunger as the cause for her decline.
3) Reflux. The only other thing we changed the week of Christmas was her meds. We took her off Prilosec and have just been giving her Zantac. It could be her reflux is worse than we thought. Even though she's not arching or throwing up or showing any signs of pain when eating or after she eats, she could still be refluxing into her lower esophagus and having pain. Remember she's a toughy and doesn't always show when she's hurting. She was reherniated from July-November and people always remarked how happy she was when they saw her. She very rarely cries, but I can't imagine it feels too awesome to have your diaphragm tear away and your stomach flipped up into your chest. I noticed when we had her on the continuous sat monitor this week that when she eats her heart rate goes way up to 160's-170's. It's usually around 110. Is she in pain when she's eating because she's refluxing? She'll usually only take around 2 to 2 1/2 ounces at each feeding, even when she was doing really well with the bottle. Could that be the point at which she starts to reflux, so she stops? Or is it because her stomach has shrunk over the last month and it only takes that amount for her to start to feel full? Since this is the only other thing besides taking off the oxygen that we changed, I'm strongly leaning toward reflux as the culprit.
4) Stress related to aversion. Is she stressed when she eats because of her psychological aversion to the bottle? Her aversion started when she was aspirating. Is she still nervous about aspirating when she's eating? She has always been a noisy eater, clicking and smacking after every suck. She has a high palate due to being intubated for so long and seems to still have a little trouble organizing her oromotor skills at the back of her mouth when drinking from the bottle. She also has a short frenulum. Short frenulum+high palate+history of aspiration...I can see why she might be stressed and working extra hard. Does she still have so many negative associations with eating and pain from when she first reherniated, that she's stressed about the anticipation of pain when she eats? She does seem stressed sometimes when she's eating and "plays" with her hair, sometimes pulling it. Could be stress related to pain from reflux.
5) Finally hungry, but not hungry enough. I definitely think her hunger mechanism is returning. She wakes up now every night around 1:00 am for a bottle. She never did this before. She also gets whiny during the day when she's hungry, and never used to before we started weaning the NG. She's definitely making the hunger connection. Since we abandoned the old plan of NG feeds Q 3 hours last week, she is much better about wanting the bottle again. The last couple of days she seems like she's back to having a regular hunger cycle, and when she gets hungry she wants the bottle, pulls it to her mouth, and takes her 2 ounces. She hasn't fought the bottle once since Tuesday. So she does get hungry and she does eat, just not very much. Why? Stomach is small so she gets full on a small amount? Refluxing so she can't tolerate a larger amount? When we saw Dr. Y. in December he said if she was struggling with feeding we could consider an appetite stimulant. Dana had the same idea. They both suggested Periactin (cyproheptadine). It's an antihistamine with a side effect of increasing appetite. It's used for this purpose in patients with cancer and anorexia. Dr. Y. said he's used it with several of his patients. My main concern was that if it did work and then we stopped it, would she have a rebound effect? Both Dr. Y. and Dana said they've never observed a rebound effect with it.
So after all that discussion, we decided on this plan of action: We think reflux is the culprit and have decided to restart her Prilosec. I started it last night (Thursday). Dr. Y. said to give it 5-7 days to see if it helps. Then we'll most likely start her on Periactin, the appetite stimulant to encourage her to start chowing down and get used to eating larger amounts. We think she needs both, but why encourage her to eat more until her reflux is under control - that's just mean. And if we start both at the same time, we can't evaluate how each of them helped. So it's Prilosec for a week, then we'll check in with Dr. Y. before starting the Periactin. Sofie will also see Dr. S.P. for a surgical follow up and xray on Tuesday to rule out any issues with recurrence.
**Oxygen Update** The trial went well with the sat monitor from Apria. They'll pick it up on Monday, download all the recorded info, send it to Dr. R. at the Special Care Clinic, and then she'll decide if Sofie can officially come off oxygen. In the meantime she's still on oxygen until we get the order to discontinue it.
