Addison just had another choking/vomiting episode and has been crying and crying for hours. We've had such a bad couple of days.... I try so hard to be optimistic but it seems like all of the sudden we hit a brick wall with her and everything just falls apart.
Adam and I made a very difficult decision tonight to take her off all the antibiotics. We do not see the point in putting her through a risky treatment that has no real purpose other than to make her go - which it is no longer doing consistenly. I'm not sure why I even called it a treatment - it was never supposed to fix anything, only keep her comfortable. There are too many risks, C. Diff infection... antibiotic resistance.... thrush/yeast problems... I even read that erythromycin use has been linked to development of pyloric stenosis (which scares me with all the vomiting she's been doing recently). We can manage her with irrigations which are effective, work every time, and don't have any side effects (other than really messy gloves!)
This conversation started because I called our doctor and explained that Addison is starting to go less frequently on the antibiotics.... we've had to irrigate/use suppositories because she was uncomfortable twice in the last week. I explained that the vomiting started almost immediately after we changed her routine in Columbus. I also wanted to know what our long-term plan was for a diagnosis - more testing? The doctor told us to just 'keep increasing the dose' of the erithromycin until she is pooping regularly.
I did some research and learned that the standard 'motility dose' of erythromycin is 1-3mg per Kg of weight. Addison is 5kg so she should be getting 5-15mg. 10mg = .1ml (I'll spare you the math, but basically...) She is on .5ml already and they want us to increase to .7 THREE times per day. Why don't the doctors say things like "I'm going to give your kid 5 times the normal dose -gee, I wonder why she needs so much?"
I'm not usually one to ignore the doctors but I feel that I have several valid concerns about antibiotic use (Why such a large dose? How long do you plan to have her on them since you ARENT looking for a cure?) The doctor also informed us that she wanted to 'check-in' via phone in 4 weeks, and see us after TWO MONTHS. You haven't told us anything! We came all the way there for what.... A prescription for something that she doesn't even have?! Adam is furious and while I don't share his anger, Id o share his disappointment at what was supposed to be 'the best' care. We have not once been explained what she thinks Addison has (because she was sure it was MSPI, allergies - now we know it is not). No explanation, no testing, no timely response to my questions.. I think we are pretty much done.
I do not even remotely understand how a doctor can just stop looking for the source of the problem, especially in a teeny infant. So what happens to her if she never outgrows it?! NOTHING about her case indicates anything that shows she can be expected to outgrow it - in fact, its gotten worse with age. Her best bowel movements occured when she weighed less than 4 pounds.... now she's vomiting, has urinary problems too, and can't even go with laxatives.
Things have just been rough lately - Adam had no work Monday through Thursday because of the weather and we are all just exhausted/stressed - she has been waking up alot at night....crying all day the past couple of days... we are so drained... worrying about her, losing sleep trying to make the best decisions for her care. The kids and Adam and I all are snapping at one another. Everybody is off their schedule and cranky. Brooklyns birthday is this week and I am trying so hard to pull myself together to give her a great birthday party and spend some quality time with her. She's the oldest and I feel like because she's so independent, she's the first to wait when everyone needs something. I really wish she was old enough to understand that her sister is sick and why her care takes up so much of my time.
Anyway, that's where we stand for now. I am writing a letter to a doctor is Boston, explaining everything we've been through and asking for advice. They have a great motility program there and I am curious to see if he agrees with our GI in Columbus or if he has further ideas about an actual diagnosis.
Oh and I wanted to share that I was ready to quit pumping breast milk today - even went 15 hours without pumping, but the encouragement of a few friends lifted me up and I am going to try and stick it out since we don't know for sure in the long-run if the Neocate is necessary. However, she's growing better on this than anything ever before so as long as that continues I don't see why we would change anything.
Thanks for listening, I am one exhausted and stressed-out mommy... Please say a prayer for me - specifically that I get the wisdom to seek the right care, the strength to keep getting through the days when I'm sleep deprived, patience for dealing with the girls, and if there is a tiny little sliver of hope that Adam and I will ever go back to having a 'normal' marriage - that would be nice too. I'm sure some of you parents whose kids have different needs or long-term illnesses know what I'm talking about... The only time we even see each other is when we're asleep.