Okay, let’s get back to this. Lots of things to update about since the last post in May, and this will start off being all text and later I will add the pictures. Sometimes going through all the pictures is what makes the post publication take so long (several hours) and I don’t like tasks taking a long time, especially when they don’t need to get done, hence why I haven’t written a post in 14 weeks. Oh man, that means I haven’t posted anything about her 3rdbirthday either! That is going to need its own post though because we did a bunch of photo shoots. But here is one I did two weeks after her birthday before the big 3 balloon got too deflated:
Emma abdominal scan that her GI doctor told us to get done at the beginning of June in the hospital since he told us that her liver and stomach area felt bigger than he had felt on her before. When we got to the hospital on Tuesday, June 9th, before going through the security area, there was a woman who was asking everyone the Corona Virus questions and used a thermal scanner to take our temperature. Medical masks were available for people who did not bring their own face coverings. (Michael and I have to wear masks all day at our jobs too.) In the Radiology waiting room they had the “6 feet apart” stickers on the floor, but Michael noticed and complained to me quietly about how a lot of the parents took their masks off, or just had it around their chin. Come on, people!! We watched Mickey Mouse Clubhouse –an episode about Donald Duck finding an egg and having to figure out which animal it belonged to –until we were called back.
In my phone notes I wrote that the abdominal scan only took 15 minutes (the female technician rubbed the wand around Emma’s stomach like a pregnancy ultrasound), and she took 59 pictures. Her liver measured 8cm long, the kidney was 6cm x 2.5cm. But now I’m not sure if that is right though.. centimeters are so small! She had to be fasting for this, so I turned her formula milk off at 4am. I got the results three days later, on her birthday, from the GI nurse who said everything looked good and normal.
That same day, at the end of September, we will also have her see ENT again (Ears, Nose, and Throat), but this time we requested to see a different ENT doctor. The doctor we were seeing before, who shall remain unnamed, rubbed us the wrong way two years ago when she said, “Dr. Green must not be that great because I haven’t heard of him and I went to Harvard.” ……….Yeah, we definitely haven’t seen her since then. Neither Michael nor I said anything in response to that, but I’ve always wanted tell her, “Dr. Green is someone who you, and every ENT in the world, should definitelyknow about! He invented the idea of 3D printed dissolvable airway splints for kids like Emma with severe tracheobonchomalacia. He saved her life with those. She probably wouldn’t be alive right now if it wasn’t for him! I don’t see you coming up with incredible medical inventions like that.”
And if you don’t remember or haven’t read this blog before, Dr. Glenn Green is a pediatric otolaryngologist who works at C.S. Mott Children’s Hospital at the University of Michigan in Ann Arbor, Michigan where we stayed (and lived) with Emma from December 11, 2017 to February 21, 2018. Michael and I were so fortunate to be able to sleep across the street at the Ronald McDonald House for free that whole time! Definitely donate to them if you are wanting to help a really great charity!! Also, Scott Hollister should be mentioned who led the team of engineers to design the 3D splints.
One of Emma’s main big things lately has been learning to stand with assistance. We have been using her AFOs again more recently. AFO = ankle foot orthosis, like little plastic support boots. They are big on her, but they are the smallest size the physical therapy company was able to make. She originally got these made back in October and November last year. Two weeks ago I thought of the idea of Michael making a pull up bar for Emma so she could do some standing on her own, with our help of holding her knees. They bend out to the sides without support there because she does not have knee caps.
This photo ^^ shows how her legs go out to the side (Genu Varum/ bow leg) if we aren't holding or wrapping them. We have not seen her Orthopedist doctor since last year. We had an appointment scheduled in April, but cancelled it because of Corona. She may get new splints that cover more of her legs next year.
She has also gone back to leaning forward with her head tilted back when we make kissy noises. Michael and I both love that so much and missed it a lot since she had been on a “voluntary kiss hiatus” since the beginning of the year. Michael said the other day she even leaned forward for a kiss without being prompted for one!! But back in April, she learned how to give really good hugs, so that was a fair trade!
Emma has not been taken on any vacations or day trips, since we haven’t planned any family stuff because of Corona. I can’t even take her for a walk because it has been sooooo hot in Orlando and she gets heated very quickly. The last walk was in July and in one loop around the neighborhood (less than 10 minutes) her cheeks were very pink, even with the portable fan blowing on her and the stroller cover giving her shade. However, we are currently planning to take her to the beach for the first time ever next month!! Michael does not seem super confident with how it will all work out, but we are making sure we pick a beach that cars can drive on and that has packed sand. Can’t have sand blowing all up in her trachea and ventilator! But I know a lot of the parents in the Trach Moms group on Facebook have taken their kids to the beach without any big issues.
For the 4thof July we simply bought fireworks and Michael set them off at the end of our driveway. We were outside for maybe a total of 30 minutes. Now I tend to watch her reaction half of the time instead of watching the fireworks myself. Unfortunately, even with bug spray, there were lots of pesky mosquitos flying around. But Michael had a yummy dinner ready when I got home from work of hamburgers, beans, and macaroni and cheese! During Emma's photoshoot we were even listening to patriotic kids songs like "Yankee Doodle Dandy" and "God Bless the USA" by Jump 5 (my favorite).
On July 21stwe had a little bit of outside time in the driveway, sitting in the shade together. And a few days later I gave Emma her first bubble bath. She had gotten two regular baths in the tub before, but Michael thinks it is a lot easier to give her a bath in the “baby tub” that we can put over the kitchen sink. I thought the bubble bath was fun, she seemed to think it was just okay, and Michael wants me to never do that again. Even though I was inches away from her the whole time and nothing bad happened at all, he worries too much about her falling back or slipping down and instantly getting tons of soapy water down her trach (the actual trachea opening in her neck, called the stoma) or in her mouth/ choking, etc.
She has not been sprinting very well or very much the past few months. Back in February her sprinting was up to an average of 6 hours a day- 3 hours at a time, twice a day. There were even a couple days that she got to 8 hours, and one day at 9!! That is incredible!! And now she cries after only 20-30 minutes, so Michael was wondering if the 3D splints have started to dissolve and they are not holding her airways open as strongly as they were before. We were told they dissolve between 2 to 5 years, and this December will be 3 years since she got the surgery. I’m reading the original article from 2013 now that says they are made using a biopolymer called polycaprolactone, which is that material that makes it able to be dissolved into the body tissue over time. That article does not mention the dissolving time frame. I have been meaning to email Dr. Green’s assistant about it anyway.
At the most recent GI appointment from August 13th, he wanted us to start Emma on bolus feeding. That means giving her a bigger amount of formula at once, rather than a lower amount continuously throughout the day. For the past several months she had been on 43ml per hour, for 21 hours a day. Now she is currently at 80ml/hour, for one hour, three times a day (from Noon-1, 3-4pm, and 6-7pm) and then her usual 43ml for 12 hours at night (9pm to 9am). Sometimes we don’t get her in bed until 10pm, meaning the night feeds only last 11 hours, so those times we bump the feeding up to 46ml. The bolus feedings started at 60ml, but we bump it up by 10 every Thursday. So she will be at 90ml in a couple days. This will continue increasing a few more weeks until we reach GI’s goal of 120ml, three times a day, and keeping at 43-46ml at night. She seemed to not like it the very first few days (we started on August 20th) as her tummy stretched out and she did her silent cry with big alligator tears a little more than normal.
***Update from 9/14/20: She has been having a lot of gagging with thick saliva thunks coming out of her mouth, especially once her bolus feeds were at 90ml, so to even it out, but make sure she's still gaining weight, yesterday we began sticking to 80ml during the day and upping her night feeds to a continuous 50ml.
As for sign language, Emma has been really good and consistent with “all done” (as shown in the picture above) and I swear she even actually verbally tried to say it last week!! But that could just be my hopeful mom ears wanting her to be able to talk eventually. She does make a lot of sounds though, and we especially love her verbal laughs. I have also been trying to teach her clapping, but she tends to get it confused with all done. However, the way I tell the difference is her “clapping” is done with a happy face as we say, “Yay, Emma! Good job!” and all done is usually with a sad face because she is tired of something (being outside if it’s too hot, sprinting, bath time, us cutting her fingernails, etc).
We took a break on attempting to feed her by mouth, but I gave that another shot last week with a squeeze tube of baby food. When I did it, I am fairly certain she didn’t eat (swallow) any of it, as there was a ton on her bib, but she was doing a really good job of leaning forward to let me put the spoon in her mouth. When my mom visited the next day, she thinks Emma did swallow some because she not pushing as much out with her tongue and also because she was coughing a little bit.
Last month Emma learned how to put her suction catheter down her trach!! That is not something that we ever taught her. And it’s not good for her to do, especially when it just sits there and she isn’t actively being suctioned because the catheter blocks the airway and the puff flow from the ventilator. Michael discovered this one day when he saw she was crying (again, her cries rarely make noise), but he saw her legs kicking a lot, which she does when she is unhappy. He also told me that her skin was turning a little bit purple (I was at work when that happened) and when he pulled the catheter out she took a big breath. I haven’t had an issue like that when I’ve been home, but have seen it partly in. Sometimes I will wrap it around her ventilator tubing so she can’t push it down her trach. It is cute though when I do go to suction her, and right when I turn on the suction machine, she starts pushing the catheter down her trach. That’s the only time it’s good for her to do that.
Most importantly, we have all been staying healthy from the Corona Virus. I did get tested at the end of June because Alex, my best friend at work, was around her sister who had a good chance of having it because the sister’s husband and daughter both got it. She didn’t know that before spending time with her sister though and was mad about it. And since Alex and I hang around together a lot at work (I think that was before everyone at work became required to wear masks at all times), she was worried that maaaybe I could have gotten it and she definitely did not want me passing it off to Emma or Michael. Luckily Alex and I both ended up being negative!! At the last Pulmonology appointment, I had to fill out a form asked about Covid and if anyone in the household had been tested for it (whether or not they had symptoms, which Alex and I did not). I even wrote in that it was at the end of June, but the front desk lady was freaking out and told us that she wasn’t sure if the doctor would still want us in for the appointment. When the nurse called for us, I saw the front desk lady whisper-yell to her, “Wait! Look at this!” but after a few second the nurse luckily replied in a tone that sounded like she was trying not to roll her eyes, “Yeah, but she was negative and it was from 2 months ago anyway. It’s fine. Let them back.” At that office (and it was the same day as her GI appointment, in the same building) only one parent is allowed to go back, so since Michael is “the mom”, he went back and I walked around outside for an hour, until I couldn’t stand the heat. And then waited a little bit longer. Oh and her weight then was 19 pounds 6oz (up a pound and a half from June) and her height is 27 inches!! It was 25-26 for a long time.
Emma also had an appointment with the eye doctor later that day (again that was on August 13- we try to cram all the doctor appointments into one day so Michael can work more and then he earns more money to help pay our bills), and everything was good with that too. However, I need to call and cash in the “free second pair of lenses for the year” because hers are pretty scratched up.
Last update is that we have been only letting Emma take 20-30 minute power naps now, as of a week ago. After the night where she was awake ALLLL night- maybe she took a nap during the night, but she was awake at 1:30am and 4:45am, just laughing and playing and pulling on her probe, which alarmed and made us get up and check on her. Even with the power naps she sometimes is still awake until 11pm. The days she doesn’t take a nap at all are the best because she falls asleep within 30 minutes of being put in her crib and then sleeps until 8 or 9am.
OH!!!!! I also did trach care by myself for the very first time on August 21st. That was huge accomplishment for me. Emma was a good helper and sat up or laid back on the Boppy pillow again when I told her to. The Boppy is big enough to keep her neck back and the area open for easy cleaning. Michael has done it many times on his own when I take mini trips to visit my family and I’m gone for two nights. I think I did a really good job and only needed Michael to adjust the trach ties around Emma’s neck because I knew they were too loose. He was not gone that night, he just had to work longer and came home late. He has not gone on his own mini vacation yet to clear his head, but hopefully one day!!
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