Questionable urgent care & the response

Last Wednesday, Zadie's fever just wouldn't quit, even with regular doses of alternating Tylenol and Motrin.  I called her pediatrician and the soonest appointment was 6:45 that night.  I didn't want to wait for her to be seen, and since there was a good chance that her ped was going to want her to get an xray, I decided just to take her to the new urgent care place that I had been to twice recently, once for Zadie and once for Jonathan.  It's a really nice place, and they can do xrays there, so we can avoid trips to the ER.  I really liked the place the other two times we'd been there.

However, I'm not so sure about the care Zadie received there this time.  I pointed out Zadie's gunky eyes to the doctor, but she didn't say anything about them, and didn't prescribe anything for them.  I figured that meant they were junky just from her congestion.  That night, after the bloody eye incident, her pediatrician immediately diagnosed her with conjunctivitis and prescribed drops.  And, two days later, the eye doctor confirmed the infection.

Then, later on Wednesday night, Zadie's nurse questioned the prescribed dose for the oral steroid.  The doctor at urgent care had prescribed 15ml every day for five days.  It seemed like a lot.  When we looked back at the same medicine she was prescribed about a month earlier, the dose at that time was 3.5ml every day for five days.  Very big difference!

On Thursday, I called both the pediatrician's office and Zadie's pulmonologist's office to ask them about the dosing, since the urgent care wasn't open yet.  The pediatrician said 15 ml was way too high a dose for her, and said it should be 4 ml.  The pulmonologist said she could have a dose of 7.5 ml, but she also said the 15 ml was way too high.  Later on, I spoke to the doctor at urgent care who saw Zadie.  I asked her about the dose and she said, oh, that's way too high.  She apologized profusely and said that the correct dose should be 3.5 ml.  Pretty concerning that such a big mistake was made.  I then asked her about the conjunctivitis and she said she did look at her eyes, and didn't feel that it was conjunctivitis.  She continued to profusely apologize for the mistake in dosing.

Yesterday (Monday), the medical director of the urgent care called me.  He asked how Zadie was feeling, and then he told me he was made aware of the dosing mixup and he apologized profusely.  He said because of this mistake, a new policy was in effect at the office to avoid this happening again.  Apparently, they generally go by kilograms for weight, but someone wrote down Zadie's weight in pounds, and that's where it went wrong.  Zadie's only 10 kg, but that's 22 lbs.  So someone read her chart as if she weighed 22 kg.  Their new policy is to only record weights in kg so there are no more mixups.

What's scary about this is that there's no real way to know, as a lay person, whether a dose you've been prescribed is correct.  I'm not sure if the pharmacist should have picked up on the mistake, but it wasn't picked up there.  If Zadie's nurse wasn't the one giving the med, I'm not sure it would have been picked up at all.

Good news is, Zadie is feeling much better!

Eye doctor visit

We took Zadie to see the eye doctor today to follow up on the bloody eye incident.  He checked out her eye, looked at the picture we took, and was still a little puzzled.  He said it was probably just from the infection (conjunctivitis) in her eyes.  He was puzzled especially because her eye wasn't bloodshot at all.  But, the good news is that her eyes look great.  Since Stickler Syndrome, a condition that involves eye problems, is often associated with Pierre Robin Sequence, she was due to have an eye exam.  Like all of the other doctors who have looked at her, the eye doctor didn't suspect Stickler Syndrome for her, just based on her physical appearance.  He dilated her pupils and checked her vision, and it's good!  She's feeling much better and her pink eye is improving!

Zadie's bloody eye

Zadie likes to keep things interesting.  After visiting urgent care with her yesterday afternoon for her respiratory issues and fever that wouldn't quit, we went home.  Her eyes were gunky and I mentioned it (and it was obvious) while talking to the doctor at urgent care.  She didn't say anything about the eyes, though, and didn't prescribe any drops.  Later on in the evening, while we were eating dinner, Zadie must have gagged on something and started throwing up.  For some reason the milk/Carnation she had been drinking for about an hour was a huge chunky disgusting mess that was practically choking Zadie as it was coming up.  As she was struggling to vomit it up. a blood tinged tear ran down her face.  Very shocking, to say the least.  I wiped it away and more blood appeared.  By the time she was done, she had a bunch of blood all around her bottom lashes and she had bloody tear stains down her face.

Sad baby crying bloody tears

I called her pediatrician, and even though it was 8 pm and I expected to get the answering service, they were still in the office!  After talking to her ped, he said he wanted to see her.  Meanwhile, I was frantically paging Dr. Google, looking for something to quickly tell me this was normal.  I couldn't even find anything close to what just happened to Zadie.

The pediatrician called a pediatric ophthalmologist, who was pretty puzzled himself.  He even said that it was odd and he'd never seen it before.  He wanted to see her in her office, and we're going tomorrow morning.  Zadie's pediatrician also said she had conjunctivitis (pink eye).  I'm not sure why the doctor at  urgent care didn't diagnose that.  He prescribed drops and said to irrigate the eyes really well before using the drops.  When I did it later, Zadie was really upset, crying very hard, and she had some more bloody tears.  Both times it happened, it was only from her left eye.  It hasn't happened again, thankfully.

After a lot of googling, BJ found the term haemolacria.  Most of the pages that come up when you search that term are only talking about how rare this condition is.  Wikipedia mentioned that it's sometimes caused by bacterial conjunctivitis.  So we'll see what the doctor says.  Never a dull moment, that's for sure!

Airway Clinic

Zadie and I drove down to CHOP today to see Dr. Javia, her ENT.  He only sees airway patients once a month, and he's not seeing patients in March, so even though I knew we weren't really prepared to go back and see him, I didn't want to have to wait another two months to see him.

There were a LOT of trach babies in the waiting room!  It was very exciting for me.  Zadie didn't really care.  We've seen one or two in the waiting room at other appointments, but today was like a convention.  I've still never seen a trach baby in the real world!

Since the last time Zadie saw Dr. Javia in November, we were supposed to have been working on getting her to wear the Passy Muir valve all day.  She's been sick on and off since then, so we weren't working on it while she was sick.  And she's just really a little stinker when it comes to wearing it.  I've gotten her to keep it on for 15 or 20 minutes at a time, a few times.  But most of the time, she pulls it off after a few minutes.  It's frustrating because we need to get her tolerating the PMV all day and then we can move on to the cap.  She needs to be tolerating the cap all day and pass a sleep study before she can lose the trach.

So today, Dr. Javia said to come back and see him in six months.  My heart dropped, because since the last appointment, I've had spring in my head as a possible time for decannulation.  But, since we haven't really made any progress with the PMV, we're not really any closer.  I am disappointed in myself for not pushing her harder to wear it.  But all I can do is look forward and be tougher with her.  I keep reminding myself that she WILL get decanned one day.

Early Intervention Annual Review

Zadie had her annual review yesterday for Early Intervention.  Early Intervention is a state program that is designed to help kids with developmental delays catch up in time for school.  She's been receiving services through EI for over a year now.  She gets speech therapy and occupational therapy.  We had two meetings to update things yesterday.  During the first one, a test called BDI (Battelle Developmental Inventory) was administered.  The therapist asked me a bunch of questions about different things that Zadie could or couldn't do and gave Z tasks to try to do, like stacking blocks and using nesting cups.

Little Z did great on the test!  She improved greatly since the first test was given over a year ago.  All of her scores improved.  In fact, based on that test alone, she does not qualify for EI.  However, since she has the trach and the related speech delay, they used a clinical assessment to determine that she is still eligible to receive services.  She'll continue receiving speech therapy once a week and occupational therapy will be reduced to once a month.  She babbles a lot and she is starting to say words.  The three big ones right now are mama, dada and baba.  She is starting to mimic sounds we make, and she said "duck" yesterday with the therapist while looking at a book with ducks.  She's still signing pretty regularly and still picking up new signs, so all in all, she communicates pretty well.

Plastic surgeon follow up

Zadie had another follow up with the surgeon who repaired her palate. It's hard to believe that it's been more than 8 months since she had the surgery!  He said she looks great, and in particular, he remarked on how good her lower jaw is looking. He said that he's glad we never did anything surgically to it.  Her lower jaw was recessed when she was born (a hallmark of Pierre Robin Sequence), and it was a major reason she had trouble eating and breathing. If she had been born in another hospital, she might have had jaw distraction right away, and she might have avoided the trach. But, she was born where she was and they don't really do jaw distractions at St. Barnabas. So, she ended up with the trach. A plastic surgeon at CHOP later suggested a jaw distraction in order to get rid of the trach, but we weren't positive that it was completely necessary, and we decided to wait and see what her jaw did on its own.

It's possible that she will still need some kind of jaw surgery in the future, but right now, she's looking good! We're hoping to get rid of the trach in a few months and just keep moving forward.

Knocking on wood....

Zadie's been really healthy!  (knocking on wood).  Her brother has been feverish on and off for the past two days, so I'm afraid of her catching whatever it is he's fighting.  But meanwhile, she's been great.  I've been trying to work on the Passy Muir Valve (speaking valve), but she's such a little stinker that she doesn't want to keep ANYTHING on her trach at all.  When we're out of the house, I'll manage to get her to keep the HME on most of the time, but she still pretty much takes it off constantly.  And when we're home, she pretty much downright refuses to wear one.  So when I try to put the PMV on her, it's the same issue.  She'll keep it on for a minute or two and then pull it off and hand it to me.  I talked to the ENT's office today to get suggestions on how to get her to wear it longer, and they just suggested distractions (like TV, iPhone, etc).  Any trach moms have any other suggestions?