Posted (Tina) in All Posts on May-12-2011

So much has been going on since we last posted.

Unfortunately, Ella has continued to have problems. Mostly, she is experiencing nausea and lots of retching. We’ve had this problem for years. Feeding has always been a challenge. We got a respite from it for Nov and Dec last year. It was the same time we switched to the blenderized diet, so we thought it was the answer. Unfortunately after her surgery, all the symptoms came back. The latest theory: Ella’s colon is situated differently than our bodies – hers is mostly up high near her stomach. When we fill her stomach, it creates pressure on her colon. If she needs to empty her colon at all, gas or otherwise, it creates pain and discomfort. This leads to nausea and retching. Looking back, last Nov and Dec was also when she re-herniated her diaphragm and her colon moved into her chest. This created more room and less pressure on her gut. That is the only time that she has not retched. As soon as they put everything back in place, the symptoms returned. Without the surgery, she was obviously uncomfortable for other reasons, but it was the first time that Ella was not retching constantly.

When we’ve gone to the GI doctor and pulmonologist, we’ve also described the excess of mucus and phlegm that she is producing. It seems like more than normal. We’re not really sure why her body seems to be producing a lot of it. So when she retches, we get lots and lots of clear, egg-white mucus coming up. It is worse in the morning after she has been laying down all night and seems to improve throughout the day. When she wakes up, you can hear her coughing to try and clear her airways. The good news: her nissen is working – she is not retching up food. But the other part: her nissen closes off or tightens when her stomach gets filled to prevent reflux. But at the same time, this thick mucus can’t drain into her tummy either. So it collects in her throat and she tries to manage it, but eventually it comes up.

The GI doctor doesn’t really have any good solutions. As in the past, he suggests a GJ tube to completely bypass the stomach (it has to be placed surgically, plus you have to use a slow drip food pump and be attached nearly all hours of the day). Ella has never done well with a food pump. Plus, there is no guarantee that this would actually fix the problem. Otherwise, the GI doc talked about how her esophagus (structurally) is pooling her secretions and this could be the reason for the increased retching. Maybe with the constant coughing and retching, it is creating more mucus. The only fix for that is potentially open up her nissen to hopefully allow more drainage for the mucus into her tummy. There are two main issues with that approach: distending or extending the nissen does not change the anatomy of her esophagus and it may not even fix the issue PLUS then we have increased risk of aspiration of food into her lungs which is a HUGE issue for Ella. So, compromising the integrity of the nissen doesn’t seem like a good option when it is doing its job (keep in mind she’s already had 2 nissen surgeries).

Since I don’t like the aggressive nature of the suggestions from the docs, we’ve tried everything we can think of to see if we can reduce the amount of mucus: elevating her bed, humidifier, using the food pump with a slow drip of food, changing bolus feeds to increase the number of times she is fed, temporarily feeding just water/pedialyte versus any food, changing the blenderized diet (no dairy, no MCT Procal or DuoCal, thickness of food, types of ingredients), Claritin (maybe mucus was from allergies), etc, etc, etc. We consulted the pulmonologist via phone: he prescribed a 5 day burst of Prendisolone (a steroid) to see if the mucus production was due to any inflammation. Boy, that was NOT fun. The steroids have such horrible side effects: fussy, hyper-activity (which presents strange in a child with no speech), interrupted sleep patterns, etc. The first few days was HORRIBLE – it actually seemed like she created even more mucus – was that possible? Then by Day 5 of the steroids, it seemed less. She would still retch and cough to clear her throat and manage, but it sounded dry. So not 100% resolved, but much more tolerable. That lasted for about 3 days and then everything returned. When we visited the pulmonologist in-person, he actually commended us on the creativity of all the variables we have tried. Finally, he said that he really wasn’t sure but that we could try a low dose of steroids (small dose every other day) to see if we felt like that helped. This way, we don’t get any of the harmful, long term side effects of steroids but all the benefit. I explained that we are desperate for reprieve from this horrible, daily regimen.

Throughout the 2 week trial of steroids, we’ve once again had mixed results. First, it seemed worse again. Based on the last experience, that didn’t surprise too much. Then, it seemed better for a couple of days and then (BAM!), it would return with more force than ever. So we’ve come to believe that this will not go away 100% and that a combination of different approaches used can make it more tolerable. Here are some of the tips/tricks we’re using right now: taking low dose steroids every other day, not feeding any food for the first 3-4 hours upon her awakening each day and only giving water, making blenderized diet without any dairy, reduced the volume of food intake each day, used more calorie enhanced powders to make up for the lack of volume intake, once feeds start for the day, giving less volume via bolus several times per day (once every 2 hours until she goes to bed). Once again, I always feel like we are tweaking here and there every other day to try things to see what works best. Heck, we’ve only been implementing these exact tips for about 3-4 days. When we deviate (like I gave her a feed with blenderized diet about 1 hour after she was awake), and we had a major episode. She felt really sick, had nausea, sweating and retching for 1.5-2 hours. We still pray for healing for her little body.

For those of you are are blessed to not endure this type of thing, it is like having your kid have the flu or dry heaving every single day, multiple times per day. The nausea and pure discomfort that you see your child experience is torture. And yet, there is nothing you can do to fix it. And at the same time, you have to feed your kid. In all honesty, it is one of the worst things that I have ever dealt with regarding Ella. It is heart breaking and makes you feel completely helpless as a parent.

In between the feeds, you would never know that she experiences anything like I’ve described. Like when I take her picture and post it here, you would think she is doing fantastic. And if I did not have to feed her, she would be 100% fantastic. When she is physically feeling good, she is the happiest little girl you’ve ever seen. She smiles so much and so often. My heart is so warmed by it; I’m convinced it’s God’s gift to me during this journey of motherhood.

Along with that smile, she is making great strides with her therapists that visit nearly every day, multiple times per day. Unless she is feeling sick, she is usually in a great mood. They are pushing her to try new and different things and I think that she is getting to be more and more tolerant. Also, they bring in new items to play with and she seems to adapt better. The independence of walking around and exploring on her own terms is making her more open to new things. It’s just so good to see. And I know that her therapists that have worked with her for 2+ years can see the HUGE strides she has made. Remember, this is the same infant that could only lay on her side or back, not even sit upright on her own or hold her head up, and would hold her arms close to her side and not want to touch or experience anything new or different. It’s just amazing the little things that she is doing. Including this little stunt on a frequent basis (the video is blurry but you get the idea):

On a fun note, we have been busy getting the RV prepared for the warm season. We don’t have any trips planned right now, but had extensive engine work completed. In addition, the generator was not working so we had to get that fixed too. Then, we also decided to make a cosmetic improvement: new carpet. Josh is still in the process of removing the old carpet and getting it prepped for the new to be installed in the next couple of weeks (the carpet has to be original which would make it 22 years old)! Needless to say, we are looking forward to using our house on wheels this summer for short getaways!

Another work in progress: trying to get our house put back together. We had leaking in our house last summer on the Fourth of July. The builder honored their warranty and has been working to repair the leak in our home since last summer, which included having scaffolding on the back of the house for months on end! The scaffolding recently came down and the interior and exterior repairs have commenced. We’re looking forward to having our outdoor space back!

One bit of bummer news: our respite care provider is quitting. She has been nice enough to watch Ella for us 1-2 times per month since last November. She is having surgery on her leg and will not be able to walk for several months. We’re really bummed that we’re going to lose her. There is one other person we found that might be interested in helping us out. We’re praying that it all works out.

I’ve been really enjoying baking this spring season…cupcakes, cheesecakes, cookies! Not good for the waist line, but yummy!

Continuing on the health front, I mentioned in a prior post that Grandma Eusey was diagnosed with cancer in late January. She had surgery on March 16th and subsequently found out that it was Stage III (had gone into her lymph nodes), so she is getting ready for chemo & radiation in the coming days. Also, Ella’s Grandpa Snyder had a stroke on Easter Sunday. He was at the hospital briefly and then stayed with us for a week (along with his two mini dachshunds) to get on his feet again. But he got a pretty strong wake up call: a stroke, learned his carotid artery is 90% blocked on one side, high blood pressure, early stage of congestive heart failure, a urinary tract infection and diabetes. He had not been to the doctor in about 11 years and got hit all at once. Although he had numbing on the left side of his body that is slowly getting better, he is very fortunate that the incident was not worse. Now, he is focused on his health! Please lift up Ella’s grandparents in prayer as they walk down their respective paths of recovery.

Besides my parents, it just feels like health issues are everywhere. A lady from the neighborhood recently lost her husband to illness while another neighbor found out that she has cancer in both lungs that is not curable. One of Ella’s therapists came to a session and then subsequently came to another wearing a wig (she was recently diagnosed with cancer too). It has felt overwhelming. And just like the past four years with Ella have taught me, there is nothing you can do…except humble yourself, lift up in prayer and learn to accept what the Lord has planned for your life. Saying that sounds easy, but when it is you or someone you love, accepting illness is a tough thing to swallow.

Psalm 105:4 (NLT)
Search for the Lord and for his strength; continually seek him.

A Christian artist released a song she wrote recently after her and her husband have struggled with his health issues. She explains (definite paraphrasing on my part) that she always grew up thinking that blessings had to do with health or prosperity. Her and her husband were praying for healing and God wasn’t answering their prayers the way that they would have wanted. So they had to ask, was He still blessing them? She wrote a song all about redefining blessings and investigating this idea: could God possibly be blessing us by NOT giving us what we are praying for? Either way, the artist explains that there is one thing she is confident about: There is a blessedness that comes through waiting on the Lord. There is an intimacy in our walk with the Lord that comes from walking through that valley. There is a reliance on His Word that we only know when everything else in life fades away.

Below is her song that has really touched my heart….especially when I reflect on the valleys in my own life.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise