Therapy

Since we’ve ruled out a laryngeal cleft, Lala’s primary care physician has recommended swallow therapy. Now that she is nearly four, perhaps she can be taught to swallow.

Our local school district offers such therapy – for free! – and is currently looking for children to add to their program. Lucky me, I knew exactly who to call to get more information. Hopefully on Monday we can start the process to get the therapy. I’m quite sure there will be tons of paperwork, but maybe it will distract me from fights over juice boxes and why we don’t take drinks from any else’s cup.

Nothing

Since returning home on Wednesday, it’s been a bit of whirlwind. Work is very, very busy and we have guests this weekend. I haven’t really had the time to sit down and really think about what to write regarding the test.

I guess I would have to say that my main emotion is annoyance. We went through that whole process – hours of driving, hours of sitting around and waiting… all for nothing. The doctor was able to confirm that Lala is aspirating thin liquids (including her saliva), but did we really need to spend what will probably be in the tens of thousands of dollars? Were we too quick to jump on the Laryngeal cleft bandwagon?

Even more important, where do we go from here? Is there anywhere to go? It’s not like this is a huge problem for Lala. She’s healthy and growing and on target developmentally. Why do we need to fix this?

Laryngoscope

As I write this, Lala is under anesthesia (thank the lord for spell check) getting all checked out.

The procedure should only take about 15 minutes – but the prep and recovery will bump that total to five hours. That does not include the hours without food for the both of us. I’d go grab something, but I’m too afraid that I’ll miss something.

She did great right up to point where we were separated – in fact, she got a little bored with the waiting.

Hopefully, the doctor will find that it’s simply a stage one cleft – easily fixed and we’ll be on the road in a couple of hours. That’s what I’m keeping foremost in my mind.

 

And… it’s over! Well, she’s still in recovery waking up, but it’s done. He found nothing.

Appointment?

We may have an appointment finally… although the “legal department” has not fully examined the adoption documents. Since I kept calling, they finally just scheduled the laryngoscope in a couple of weeks. I think the receptionist figured that if a problem arose she could do a quick change without any complaints of tying up the OR for nothing. Heh.

Hospital Rules

We still have not been able to schedule Lala’s Laryngoscopy. Apparently, the updated documents from her swallow evaluation (done at the same hospital!) were not appropriately entered or are sitting in a pile somewhere. I was not able to schedule at that time, because they didn’t believe that I had the legal right to do it. OK, fine.

A week later I call and am told that they can’t locate the documents. Can I fax them?

I sneakily use the fax machine at work. We are not allowed to use the machine for anything but school business. The secretary watches everyone closely – I do it after she has locked up and hope that the log monitors assumes it was for school related.

Their fax machine is “busy” all weekend.

I call on Monday to inform them of this. They don’t have access to email – the hospital does not allow anyone to receive emails from outside of their system. They suggest that I “drop the documents off at the front desk”. A four hour car trips (and a day off of work) because they can’t receive documents? Seriously? Finally, someone admits that there is another fax machine in the hospital (yes, it covers four city blocks, but only has one fax machine? They stuck to that story for a long time).

I scan the documents. I create .PDF files of the documents. I fax them one at a time using a free online fax program. I attempt to call to find out if the documents were received, but alas, the office is closed at 4pm. They also get an hour long lunch. (And teachers are overpaid lay-abouts with too much free time?)

Finally spoke to a real person yesterday. They did receive the documents, but they have to be examined by the legal department before I can schedule the appointment. Told I may need a court order. Really, I am too befuddled to respond.

Adoption it would seem is too complex of a concept for our medical industry to comprehend. Exactly who would I get said court order from?

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How we used a village to make a diagnosis

Although I’ve told the story of Lala’s “special need” many times to several people, I’ve never actually written it down or posted it here. I put “special need” in quotes, because, of all of things that children can be afflicted with, Dysphagia is not that bad. In Lala’s case, she just needs an thickener in liquids.
Within a week of being placed with me, Lala began a loop of ear and upper respiratory infections. We would see the doctor, get a prescription for an antibiotic. Ten days later, the prescription would be finished. Twelve days later, we would be back in the doctor’s office, getting stronger/different antibiotic. This went on for a couple of months.
Then Lala stopped drinking. She would literally toss her bottle across the room. Remember, as an infant, she is still getting a majority of her nutrition via formula. If she won’t drink it… well, I was more than a little freaked out. Luckily her doctor has a calming personality and we came up with a plan. Ear/respiratory infections stop. She continues to cough and sputter seemingly at random. Is this a problem or just a kid learning to eat solid foods?
While this is going on, the manager of the daycare tells me a story about another child who had recurrent respiratory/ear infections. Eventually, his doctor discovers a kernel of popcorn lodged in his lungs. Apparently he had either been fed or found and ate a kernel of popcorn at his home before being placed in foster care.  I started to wonder if perhaps there was a french fry particle stuck someone where inside Lala – french fries being a food she regularly ate (at 4 months!) before she was placed in foster care.
A couple of months later, Lala’s cough has gotten worse. Yet again, we visit the doctor. I tell the doctor the story from the daycare. We get a chest x-ray. This time she is diagnosed with a “tiny spot of pneumonia”. There are, however, no french fries.
Two weeks later, ear infection again. This time, in addition to the antibiotic, we get a referral to a major children’s hospital in a nearby urban city for a “swallow test” and a pediatric ENT. Maybe she’ll need ear tubes, maybe something else is causing the recurrent infections… the story has Lala’s doctor thinking of a variety of possibilities. A week later, the ENT rules out the ear tubes, cystic fibrosis and a variety of other possibilities.
We waited a month and half for the swallow test – they were very, very busy! Finally we got in and there is a lot of muttering amongst the techs, speech pathologists and doctors. Dysphaia. When Lala drinks any liquid, she is actually aspirating/nearly aspirating the liquid nine out of ten swallows. No wonder the bottles were flying! Besides the constant illness, I imagine that drinking was painful, as well. To counteract this, we thickened all of her drinks so that they are just a hair above pudding thickness.
She hasn’t had an ear infection since!
Long story short, if the daycare manager hadn't told me the story of popcorn boy, and I hadn't told Lala's doctor, who knows how long it would have been before we discovered the cause of her illnesses? She might have even gone through surgery to put tubes in her ears and still been getting sick. We were all needed on this one.