I have heard many horror stories from other FPIES and PI moms about doctors and hospital visits. We have been blessed with a fantastic pediatrician who sent us right away to a fantastic GI, and so we have had very minimal bad experiences. Just to make sure I can relate to those other moms, we were allowed to have a couple of those experiences this month.
The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?
I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?
We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. 'Well...no not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'
'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.
her: 'Oh. OK. Is she on any current medications?'
me: 'She is on albuteral in a nebulizer.'
her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'
me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'
her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'
me: 'Is her diagnosis even IN her file?'
her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'
OK not really. That was only going on in my head.
her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'
me: 'what should it be?'
her: 'oh, 100.'
me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'
OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.
her: 'The doctor will be right in.'
And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.
Dr.: 'Sounds clear.'
Elianna: *cough. hack. gag*
Me: 'OK. So it is not a bacteria or a virus?'
Dr.: 'Uh...no normally we see other symptoms with virus or bacteria.'
me: 'so this is a side effect of her reflux?'
Dr.: 'I don't know. You should follow up with your primary care.'
And he exited.
Clearly I chose the wrong profession, because he got PAID for that!