Strong and Courageous

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” - Joshua 1:9

If I could sum up the last two weeks into two words it would be: strong and courageous [and humility... my courage came with a BIG helping of humility!].  Let's see if I can explain.

First, it takes a lot of courage for me to write about our journey, knowing how many of you are following and how many of Claire's nurses and doctors (who know far more than me about all of this!) are following as well is quite intimidating! We had a rough and very emotionally-charged week last week and every time I sat down to post an update, I felt vulnerable and decided not to. Over the weekend, several of you who had no idea what was going on in my heart and mind told us how much they enjoy our blog and how it has encouraged them [a big THANK YOU to those special people] ... so here we go!

Shall we start with the good news?  Claire had her first appointment with the eye doctor, so far so good!  She is far-sighted but she is too little (and too young) for it to warrant glasses, we will check this again when she is older. No cataracts and her optic nerves look great! She does cross her eyes but they will give her a little longer to outgrow this before it becomes worrisome. Our next visit with him will be in December.

Now onto the not-so-good news. Claire has started to have trouble breathing. Her breathing is very fast and she has chest retractions that show that her body is having to work hard in order to get air in. We took her to the ER last Thursday and she had an X-ray that showed "hyperinflation" and that her bowels are still very full of gas/distended but they couldn't find any reason why, we went home with lots of questions. We followed up with her pediatrician on Friday who didn't have many answers for us either. Over the weekend, I was still worried and felt like I needed answers but wasn't sure where to go. We had a playdate with a [very strong and courageous] friend on Tuesday who suggested taking Claire to see a pulmonologist. Even after she left, it took me a couple of hours to get up the courage but I called Claire's pediatrician and advocated for a referral. I am so glad that I did! 

**It's scary [at least for me] to talk to doctors, especially since I know that I still have so much to learn, but what I AM learning is that what I do know well is Claire!  Talk about a crash course in courage [and humility!]!!**

So, back to the breathing ... we went to see the pulmonologist yesterday and I was right to feel like something was wrong, her airway and lungs are inflamed and have "junk" in them. He believes this to be caused by one of two things: the beginnings of congestive heart failure or aspiration (or micro aspiration), both of which are very serious. We will be seeing the cardiologist again tomorrow to have her heart checked on again just to rule that out and are working with the feeding therapist and GI doc to work on safe(r) swallowing and management of the GERD (since reflux can be aspirated as well). In the meantime, we have started a steroid/breathing treatment in order to treat the inflammation. It is important that we figure this all out as soon as possible, not only for the long-term health of her lungs but also because she is working so hard to breathe that we are again struggling with her weight gain and eating - she is down to the 2nd percentile. He also went over all of the differences in the airways of children with Down syndrome for me (wow, there are A LOT!) which I found helpful just to keep in mind as we're working through everything. 

As far as the Hirschsprung's disease ... all is pretty good! Her stool is "a little looser than [the surgeon] would like" and she's much gassier than we want her to be but, overall, she isn't showing any signs of enterocolitis or stricture. She has increased our irrigations to twice/day in order to help with the gas/distention and we will continue to do her dilations 3 times, twice/day. 

We are also trying (and almost done with) Flagyl which is an antibiotic to see if "decontaminating" her intestines might help with the gas/distention. I am still on a pretty bland diet and no dairy/gluten/soy. We have also started "fortifying" her breast milk, something that I've been fighting but we're at the point where we just have to, at least for now until we can get her eating again. We have started discussing the possibility of putting in a feeding tube, this would mean another short (couple of days) hospital stay but would help with protecting her lungs and gaining weight.

We also escalated her reflux therapy to yet a stronger medication (Lansoprazole), she is still really struggling with the reflux, even to the point of having pure white boogers :(. Today, she had an "Upper GI series" which is a barium x-ray "video" to check to see if she has any kind of obstruction or webbing, she had to fast for this so she was pretty upset and then she wasn't able to swallow fast enough for the study so she had to have a feeding tube put in, she did NOT like that and it ended up being quite the traumatic morning. She squeezed my fingers hard with both hands during the entire thing. It did help a little that our X-ray tech is one that we've had a few times, it was nice to see a familiar face. Claire has now had over a dozen different ones and quite a few ultrasounds too. 

Admittedly, I'm emotional and just feeling discouraged after all of these long appointment days and TWICE while holding Claire today, I've smiled at her and she's instantly smiled back at me with her big, bright-eyed, tongue-sticking-out grin. Coincidence or not, that girl is touching my heart [and making me bawl like a baby] <3. Talk about strong and courageous.