Tuesday, January 3, 2017

2016 Wrap Up


June wasn't sure about Santa so her turkey had to come along
I'll start this update with the positives because they are always more fun to write about than the challenges. The day after I posted June's last update, she said her first word: "Da-Da". She puts a lot of emphasis on those two syllables, and bobs her head up and down when she says them with a big grin. I think she will be able to get anything she wants from Jason for the rest of her life :) She hasn't learned any words since then, but she is mimicking words we say. She uses a lot of her sign language (her favorites include "please", "more", "music", "want" and "eat") and pointing to communicate with us as well.

June hit another big milestone this month: walking. She still is mostly getting around by crawling, and only walks when she is venturing from one piece of furniture or person to another, taking at the most 10 steps at a time. We love her adorable Frankenstein walk - she doesn't really bend her knees - and how excited she gets when she gets about two steps from her destination. Her eyes light up, she opens her mouth really wide, scrunches up her nose, lets out a squeal, and dives forward.

June is also getting lots of new teeth. Up until now, she had just her two bottom teeth, but over the last month, she is up to 10!

Although June was very ill over the holidays, we enjoyed celebrating Christmas with each of our families along with our own. Although, I can't say June was enthused about waking up early (9 am) to open presents - I see noon wake-up calls in our little bug's future :)

Right after our surgery appointment in November, June started vomiting once to twice a week. It was always around 3 am and (this is a little graphic) was the contents of her undigested dinner. We let our doctors know but knew that we weren't going to get any kind of solution. The next step is surgery, and while they don't like that she is vomiting as often as she is, they don't want to rush her into surgery until exhausting all the options.

As I mentioned, June was very sick this month, but we were able to avoid the threat of hospitalization, which has been hanging over our heads for the past week. The second weekend of December,
we noticed June was developing the nasty, barky cough that has been plaguing so many this fall and winter. Unfortunately, with June's tracheomalacia, respiratory infections hit her a little harder than most children. We immediately started breathing treatments of Albuterol to relax the muscles in her airway and open the passages to her lungs. When we didn't notice an improvement to her breathing, we added in Budesonide, which is a steroid and decongestant. We have both on hand since our pediatrician always likes us to start with inhalation medicine first because June gets so much oral medicine. (Writing oral medicine always seems ironic to me since she doesn't take any of it orally.)

After four days, we still weren't seeing an improvement. In fact, June was getting worse - she could barely breath without coughing to the point of vomiting. June's early morning vomit sessions were now daily. Our first stop was our pediatrician. We ended up with an oral steroid over five days. The oral steroid would help her for about six hours after given, but as we started decreasing the doses, she began to get worse again. By day four she wasn't improving, and we were headed into another weekend. Our pediatrician decided we should try an antibiotic for five days, along with the inhalation steroid twice a day and Albuterol every four hours.

After the antibiotic, June was still very sick and struggling to breath. She was exhausted from being up all night coughing and vomiting (as were her parents). A couple nights we just held her upright in a chair. We continued to decrease her food until we could find a rate she could tolerate for at least three to fours hours at a time. We ended up decreasing feeds to 25 milliliters an hour (about 1.5 tablespoons worth of formula), when she was use to getting 70 milliliters an hour (about 4 tablespoons). June had also stopped eating for us - when she had been up to eating three meals and two small snacks a day. Naturally, with the drastic cut in nutrition, June's weight was beginning to drop. She got put on 24 hour feeds at a rate of 25 milliliters to at least make up the amount of calories that she got during her nightly tube feeds. Every week, June was dropping about half a pound - she went from 20 pounds to 18 pound, 3 ounces. We were almost to a point of breaking out her 9 month clothing again.

The Friday before Christmas, we took June in to see her pediatrician again. It was the first time I have seen him concerned about her since March. We never got a definitive diagnosis but he mentioned walking pneumonia. Between her weight loss, and the fact that she was now wheezing/breathing with a heaving chest, he wasn't sure we were going to make it through the weekend without her ending up in the ER. He didn't want to issue her another oral steroid because multiple doses of the drug within a short time period can affect her growth hormones, stunting her growth. In the end, he decided to give it another try in hopes that we wouldn't end up in the hospital. We made a plan in case she got worse over the weekend. He gave me his cell number to text him so he could make the preparations to airlift her to Chicago if we ended up in the ER over the weekend.

Luckily, we made it through the weekend, and got June in to see her pediatrician first thing Tuesday. He was very pleased with how she sounded. He did want to talk to our surgeon about one more inhalation medication to help June avoid the hospital. Later that afternoon, our pediatrician called us back after talking to June's surgeon. We were headed up to see the surgeon the next day so they wanted to discuss the medication with us then; however, they asked our pediatrician to let us know that we should pack an overnight bag - they were concerned about how long she had been sick. We were blessed with two nights of June not vomiting, and we were able to work her feeds up to 60 milliliters an hour.

Another bird to love :)
On Wednesday, December 28, I took June up to meet with her surgeon. She was looking and sounding much better within the 24 hours, so we escaped being admitted to the hospital. However, it now looks like another surgery is definite for the year 2017. Dr. Rowell, June's surgeon thinks that her stomach is starting to function with the help of the antibiotic she takes before every meal and bed. However, the constant vomiting indicates that June will need another fundoplication surgery to re-stitch her stomach up around her esophagus. Since June's GI track is a straight line from her mouth to her stomach, essentially when she gets too full, it is easier for the food/formula to go up instead of work itself through the rest of her system. There is a definite risk of complications since this is the second time she has had this surgery. We haven't started to discuss all the specifics yet - our surgeon is hoping we can hold off on the surgery until at least the spring, if not summer so that with the warmer weather, June would less likely to be sick heading into surgery.

Unfortunately, the two night reprieve from vomiting ended Wednesday night. Since December 28th, June has been vomiting multiple times a night. Her surgeon believes she struggles with feeds while lying down (even though she's propped up at a 45 degree angle). We have tried to break up her feeds, giving her some during her nap and some time off in the middle of the night to help her system digest the nutrients that she needs. At this point, the variations of feeding are not working, but our surgeon also wants us to attempt bolus feeds in her stomach after each meal. We will start off slow - a half an ounce in a sitting and work up. The hope is that we can eventually reduce feeds at night. We know that June's body cannot tolerate more than three hours of feeds in one setting. We will continue to work with surgery and our feeding therapist to find a happy medium for our June Bug.

2016 presented us with many challenges, but we have enjoyed witnessing June's major milestones and accomplishments. June has the most amazing spirit encompassed in her little body. No matter what she is going through, she tackles it with a smile, scrunched-up nose, and giggle. She helps keep us strong when it feels like we cannot handle another medical demand. Sawyer has been amazing through this adventure as well. Sadly, he is use to being left to his own devices as we tend to June's needs. He keeps tabs on his sister's health, letting us know when we need to take her to the doctor because "she has a bad cough". It's amazing to witness how two little people who seem so dependent on you can be the ones to carry you through some of life's biggest upsets. Here's to 2017!