Tuesday, November 20, 2012

Swallow study results!

Miss Tara completed her swallow study yesterday and passed, so no G-tube or Nissen fundiplication surgery. As if I had any doubt! As expected she has been aspirating milk this entire time, because the barium swallow did show "penetration." It is not severe, so they are able to thicken her formula to a nectar consistency with 1 tsp rice cereal per 1 ounce of formula.

I'm so happy to finally have an answer to the questions of what has been going wrong this entire time that kept putting her back in the hospital, and to confirm that it is what we thought it was. I'm still frustrated this couldn't have been identified earlier in India, but even if I'd been more sure it was the issue and pushed harder I'd be willing to bet they still wouldn't have given us the swallow study I kept asking for.  It sucks when you don't have the power that you do here. It is hard not to beat myself up, because I wonder if I should have just thickened it with the rice cereal I brought for that purpose on my own and realized the doctors were wrong. It just seems so much more obvious  now that was the problem all along, but then again hindsight is 20/20.

I'm also more certain with each passing day that she was always a little tachypneic and they didn't see the respiratory rate as so much of a problem as they do here. I've been watching old videos of my babies and counting their breathing by studying their chest and necks, and the rate is often 20 breaths above what is considered normal despite high oxygenation levels. They shouldn't have to work that hard to get there, and perhaps that was why she always slept so much...she was exhausted. When this is all over I plan to write a long email to Dr. Kothiala explaining Tara's complications since discharge and recommending that they take a harder line on respiration rates and recognition of feeding issues. Dr. Kothiala I know will listen, but trying to say something to Sir Ganga Ram I know would be futile.

She has had two bottle feeds today, one of which I was able to give her! She did great but they are giving her a 10 minute time limit because she tires out due to her respiratory status and that can affect her ability to regulate swallowing and sucking and breathing. She can finish 1/2-3/4 of the bottle in that time before they give the rest via her NG tube, and from what I can tell so far it helps her not to gulp like she was before. They will keep with the bottle feeding and see how it goes, and if there are no signs of aspirations she will get to feed more and for longer periods of time. As an added bonus the nectar consistency flows at a perfect rate through a standard flow nipple...which we have a ton of and is the same type my son uses. So no worries now about buying more nipples and getting them mixed up with each other by accident!

Everyone is still non-committal on discharge, but I'm starting to think that it is unlikely she'll be home by Friday but maybe over the weekend. I have to have the prescriptions in hand before I can take her and I'm sure they'll be impossible to fill Thanksgiving day and hard to fill the day before. They have to do some exit counseling stuff, and possibly a car seat study. I also need to carve out time to talk to the social worker about filling out Early Childhood Intervention paperwork to get them in the program for developmental therapies. Plus the home health folks have to do a home visit to train us in the breathing treatments, and that scheduling could be a factor.

But after I've had a few hours of sleep it doesn't seem so bad. I'm just happy to have her home soon. Also someone awesome at work took the bullet and took my overtime mandate Thanksgiving Day, so that extra pressure is off! But the biggest reason I have a smile on my face is NEKKID BAYBEE!!! I walked into a sponge bath scene tonight and was thrilled to snap a few photos that she will hate me for later. She is 7lbs and 13oz now, and working an excellent little muffin top.
Vivek is doing well and his daily colic episodes at 1:45 am are beter some days than others. His feeding habits have shifted but my pediatrician's nurse line tells me not to worry and every month I will notice feeding changes. He will totally refuse a bottle now if he is really sleepy, and at least once a day seems to prefer a four hour nap before his bottle. He mostly makes up for it at other feedings.


Interesting news in India below. As developed as India is, it just goes to show how backwards things still are there. Every day now I have such a deeper appreciation for the sense of justice and belief in civil rights that is part of American culture, thanks to the protections of our legal system and the Bill of Rights. It ain't perfect, but it is a far cry from getting arrested for liking something political on Facebook!


In India, the world’s largest democracy, civil rights are running up against the world of social media. On Monday police in Palghar, some 100 km north of Mumbai, arrested 21-year-old Shaheen Dhada for criticizing a traffic shutdown in a Facebook status update, the Mumbai Mirror reported. Another woman was arrested for merely “liking” that status update. Both women expressed their discontent with Mumbai being shut down for the funeral of leading Hindu nationalist Bal Thackeray, who passed away on Saturday at the age of 86 — an event that brought India’s financial hub and most populous city to a virtual standstill. The two women questioned whether the bandh, or shutdown, was necessary. Dhada quickly deleted the comment from her Facebook page and apologized for it. But that didn’t stop a mob of about 2,000 Thackeray supporters from ransacking her uncle’s orthopedic clinic in Palghar, according to the Mirror. Thackeray, founder of the extreme right-wing Shiv Sena party, has been widely criticized for inciting religious hatred and violence.
In America when even small things go wrong, you have a power here to do something about it that you don't have in India. It's not just because of the law, but because of the cultural belief system in justice that stems from it. My co-workers told me that they were surprised to read about stuff in my blog and told me "The Emily I know would have throttled the nurse for doing that!" But I didn't because I knew it wouldn't do any good or change anything for that individual, and trying to go up the chain would have even less effect. I used to think mostly negatively about our liability obsessed culture, which bears the fruit of too many frivolous lawsuits. But I took a lot of positives for granted. I appreciate more now that people do the right thing in America more often than they would otherwise because they are afraid of legal consequences that don't exist elsewhere. But I also now think our laws contribute to a culture that believes in integrity and makes us people who make better choices as individuals and a society, even when adverse legal consequences are not really practical to the situation.

I am thankful that this extended trip out of my country gave me a deeper love for my homeland, and a renewed dedication to my chosen field of law enforcement.

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