Whoa, I'm how old?!
Little Miss Clarity is exactly 5 months old today and she had her big visit to get an echocardiogram and visit the pulmonary clinic at Children's Hospital. The pulmonary clinic is kind of the CDH clinic where they address all of the questions we and the pediatrician come up with that are rather unique to her condition so we've been counting down the days. Our last visit was almost exactly 2 months ago, when they said we could take her off her oxygen.
The great news is that her echo looked great with almost no indication of pulmonary hypertension, big news to confirm that she's doing great off of oxygen. To officially get off oxygen at night (although she doesn't wear it very often anyway, although she's hooked up to a pulse oximeter all night to I can administer it as needed) we're going to have an overnight room air test soon. The bring a special pulse ox that records the data all night.
They also got an xray and did a couple of blood labs just to get some more current results for her, partially to track progress and partially to have a healthy "before" snapshot in case she gets sick this winter and we need to compare her lung situation to what is normal for her. Knock on wood that we make it through winter without getting sick. She got approved through insurance for the insanely expensive RSV shots from November through March and will get her flu shots. The girls and I live in fairly quiet self-imposed exile at the house so, fingers crossed. The longer we go in her life before she gets a respiratory virus, it will be that much less likely to require hospitalization. We're praying for 2-3 winters ideally.
The big question we were bringing to her appointment was feeding.
- She miserably failed a gastric emptying test about a month ago and spits up A LOT.
- Her stomach is basically always full to capacity as we strive to get enough calories in her, even with her breastmilk fortified to 26 calories (from 20), which is really as dense as they like to get or it puts too much strain on her intestines. She has been gaining weight but only at 3-4 oz. a week and I couldn't foresee any way to get more food in her as she's been getting bigger.
- The gastric emptying test also showed that she's having severe reflux quite a ways up her esophagus, suggesting that her Nissen isn't really doing anything. This could be a good thing with her slow gastic emptying because she could have been in a lot more discomfort if her stomach isn't emptying into her intestines and a tight Nissen was preventing the excess food from coming up. That would have been a lot of pressure in that little tummy.
- Some of you also know that she apparently retched enough last week that she got a tear in her esophagus, known as a Mallory Weiss tear, resulting in a trip to urgent care because she was spitting up dried blood and had a whole bunch coming out of her g-tube as well. It hasn't happened again and they put her on Prevacid to hopefully protect her esophagus by making her stomach contents less acidic.
Oh, the joys of CDH. It's a birth defect that just keeps on giving in so many varied ways. We're awfully lucky though. She's clearly smart as a whip, always looking alertly around her and soaking it all in. Her therapists are also thrilled that she's pretty much meeting her developmental milestones, especially if you consider her adjusted age (born 1 month prematurely). We are so, so thankful. Everything else along the way is small stuff.
Glad to read an update. Lots going on for her these days. She's a gorgeous girl!
An adjustable bed can be a good buy if you need to sleep with your head raised. Doctors sometimes recommend elevating the head to help people with COPD breathe easier, or to prevent nighttime heartburn from GERD.
However, a successful professional in this field will understand the numbers behind every thought and every implementation. Another important prerequisite is that you have to be a people-driven person and love interacting and building relationships with people.
Company and industry perspectives can be incorporated into Corporate MBA courses. Elective courses and advanced study options can be chosen to complement the needs and interests of the company.
cheap web design services
which is really a immature share of the problems a lot of people unrecorded with sect now, but but making improved lives for group that is direction on feat them much , getting them punter aid and making certain their kids get enlightened.
Greetings from Florida! I'm bored to death at work so I decided to browse your website on my iphone during lunch break. I love the information you provide here and can't wait to take a look when I get home. I'm amazed at how quick your blog loaded on my phone .. I'm not even using WIFI, just 3G .. Anyways, superb blog! Singapore business marketing
Hello. magnificent job. I did not expect this. This is a fantastic story. Thanks!
Hi! Someone in my Facebook group shared this site with us so I came to look it over. I'm definitely enjoying the information. I'm bookmarking and will be tweeting this to my followers! Wonderful blog and brilliant style and design.
car excess insurance
I appreciate, cause I found exactly what I was looking for. You've ended my 4 day long hunt! God Bless you man. Have a nice day. Bye
ecommerce online shopping
Greetings from Colorado! I'm bored to death at work so I decided to check out your site on my iphone during lunch break. I love the info you present here and can't wait to take a look when I get home. I'm shocked at how fast your blog loaded on my cell phone .. I'm not even using WIFI, just 3G .. Anyways, very good site!
Leverage optimization tools
Does your site have a contact page? I'm having trouble locating it but, I'd like to shoot you an e-mail. I've got some ideas for your blog you might be interested in hearing. Either way, great site and I look forward to seeing it improve over time.
event space Singapore
Post a Comment