On Tuesday night, January 13th, Ruth Truth took an ambulance to the ER.  I'll come back to that and how she's doing a little later, but first some background information. It's been several months since I last shared Miss Roo's News. 

Since Ruth's birth, she hasn't been able to eat by mouth. For the first few months of her life, she depended on an NG tube. At nearly three months old, she "graduated" to a G-tube. It took three more months for her to recover from that surgery, but it was the best decision for her in the long term.

While we give thanks to God for using modern medical technology to keep our daughter alive, we still pray that we will one day see her free from all feeding tubes. To accomplish that, she needs weaned.

Of course, this isn't something we can do ourselves. It's a delicate process for a little girl with so many built up aversions, and we need guidance. Thankfully, there's an organization (Growing Independent Eaters) that specializes in helping children with this. Their service seemed well worth the price, and late last fall we moved forward, with their consultation, to not just wean Ruth from G-tube dependence but to give her the freedom of eating at our table.

There are several steps to a successful wean. At each step we would reduce the volume of Ruth's tube feeds by 25%, attempt to feed her by mouth, and watch. Our team said each step of the process would look like, "Nothing, Spike, Plateau." 

The first spike we saw was one of the most exciting: Ruth stopped vomiting daily. That was an answer to a year's worth of prayer! That is one of the most common first "wins" tube-fed kids experience as they begin their wean. We suspect this is because it's so easy for them to be overfed.

Ruth followed the steps predictably, growing in oral motor skills and in the pleasure of eating. As the process continued, through the power of prayer and the guidance of our wean team and therapists, Ruth slowly took more and more by mouth. Eventually she was able to take upwards of 4 oz of milk in one sitting and lots of soup from an open cup. 

But our team gave us a warning: Some children are simply not ready to fully transition to oral eating, and this shows by their inability to maintain their weight throughout the wean. To keep kids safe, they're given a weight-loss threshold. If they lose more than 10% of their starting body weight, the wean is stopped. As we neared the end of the wean, and the final step in tube reductions (no tube feeds), we knew Ruth was nearing that threshold.

On December 16th, Ruth went to Iowa City for an ear tube surgery. She needed one placed (it had fallen out just two weeks after being surgically placed in August) and the other replaced. It was a short procedure—the wait for surgery was longer than the surgery itself. We were home by early afternoon.

During that surgery the endocrinology team also wanted to get a sample of blood for labs, if possible. It took them a few attempts, but they got it, and Lauren received a call to go over the results a few days later. It turns out that Ruth has has an adrenal insufficiency (which is common for individuals with Smith-Lemli-Opitz syndrome). Depending on the situation, that can be a serious problem.

According to the lab results, Ruth's body produces adequate cortisol for daily function, but when she's sick or undergoing surgery, she needs a hydrocortisone steroid to support increased cortisol production. If she doesn't have that, she could become unconscious, go into a coma, and die. All of which could happen quite quickly. It's so serious that if we take her to the ER, they have to take her to a room immediately. No waits for her.

Last week Lauren received training so she could administer hydrocortisone when Ruth needs it—through her G-tube or, in emergencies, by injection. That just happened to be God's perfect timing.

On January 13th, Ruth woke up around 9:00 PM vomiting in her bed. Considering that she was in a calorie deficit due to the wean, she was vomiting for an unknown reason, and she had a fever, this was a severe stress situation for her body. This was a situation the endocrinologists warned us about.

We immediately tried to tube feed her with the hydrocortisone medicine, but within five minutes she vomited again. We were out of options. She was under severe stress. I could see her eyes rolling. I told her to stay with me as I tried to keep her awake while Lauren hurriedly prepared the hydrocortisone injection. In the meantime, our friend Seth Anderson, who was with us that night, called 911.

Ruth gave a loud wail when we put the needle into her leg for the injection. We joked later that we weren't sure how it didn't come out the other side of her leg—it was that long. In mere minutes, it appeared that the injection began working: Ruth became much more stable. By the time the paramedics arrived, we weren't worried about her losing consciousness.

We decided to have Ruth go by ambulance to monitor vitals and be in a safer place in case she began to lose consciousness again. Thankfully that turned out not to be an issue. But Lauren did get motion sick from riding in the back of the ambulance with her.

And so it was that we found ourselves back in the ER. It's definitely not our favorite place to be, but we had to take Ruth for two reasons:

We had a good team taking care of us that night. One of them even recognized Ruth—though I'm not sure if that's a good thing. 

They ran their tests, and sometime around 1:00 AM the doctor let us know that Ruth tested positive for COVID. Considering we were anticipating much worse news, this was somewhat of a relief. But it was a grim reminder of just how immunocompromised our little girl is. Somehow she had made it until January 13th without catching any sickness. We made it home with Ruth in the earliest hours of January 14th.

Ruth is still sick, and it's been a couple of hard and stressful days caring for her. We are ever vigilant as we labor to keep her from requiring another trip to the ER. 

Yet we are ever grateful too. Not only that Ruth is still with us, but that even in this God is directing our steps. He used this serious situation to make it abundantly clear that it was indeed time to stop The Great Wean of '25. Surprisingly, this comforted Lauren's heart. She has eagerly sought God's will and wisdom throughout this journey with Ruth. It felt like confirmation, because that very same day Ruth’s weight dropped below the 10% threshold.

We didn't reach the goal we wanted with this first weaning attempt. But it's still progress. It's not for nothing. Our team reminded us that it's not even a failure. We'll give it a few months before attempting another wean, but Ruth can still have food by mouth if she wants it. Now it's time for her to recover, heal, and gain some weight. This takes the pressure off.

It was Lauren's hands that administered the hydrocortisone injection, but it was the LORD who saved Ruth Truth's life. Once again, she has been redeemed. Once again, we get to keep her with us in the land of the living. Bless the Lord.