what would be next

I was scared to start Friday. With seeing the steady decline every day, what more could be taken away from him. And how much longer till an answer was found. Something had to give! I just feared that it would be me or JD.

The morning rounds were a bit earlier. I was told we would see the neurologists again, and they had a plan. But we also should expect a visit from a speech pathologist. It would then be determined what we were going to do about JD's eating. He hadn't had anything of sustenance the entire week. His meals went without tasting. He would try, and spit it out because it wouldn't go down. The doctor said she wasn't worried about him not eating. She thought it could be that with him not feeling well, you sometimes just don't want to eat. But I tried to explain that it wasn't he didn't want to. He couldn't!

So the deciding factor of what we would do was left up to the finding of the speech pathologist. If she found he had no physical limitations limiting his ability to eat, then we would wait a bit longer to do something. But if she found any issues, then we would talk about placing a nasal feeding tube.

Which the idea of a speech pathologist in and of itself was another learning curve for me. I had to learn that speech deals with the larynx and swallow muscles as well. Well, wouldn't you know, I can learn something.

So we waited!

Mid-afternoon the neurology team were back. Another round of checks. He was showing more weakness on his left, even though his facial paralysis was on the right. It all was peculiar. They even found it odd that it seemed to switch sides. It was determined that they wanted to get an MRI scheduled for as soon as possible. It was going into the weekend, but it would get done by the next morning.

More tests! But maybe, just maybe, we are coming to the end of the tests. Just maybe, an answer is within. We can hope!

A short while later, the speech pathologist came in. She asked to raise JD's bed. He refused! We had slight behavior issues with this. With all that JD had going on, he never lost who he was cognitively and emotionally. Even though his body was regressing and losing it's ability to function. His temperament remained intact. JD had emotional lability, so these behavior issues and a desire to maintain his own equilibrium was by far the norm. A slight comfort to see he was still being himself. However it was upsetting when we were all stretching to find the best way to help him.

So the speech pathologist found another way to work with it. She asked if he would just take a sip of something while laying down. We had brought different foods and drinks into the hospital throughout the week to entice him. JD had a stockpile of gum drops, candy corn, sparkling juice and more. (It was always amusing to doctors and nurses that JD would sleep with his bag of gum drops, dreaming of the colors and flavor he so wanted to eat again.) So we mixed him up some juice to try. Though he would only try one very small sip.

We held our breath!!

The doctor listened, and the results were not what we hoped.

The muscles in JD's throat were not working correctly. She could hear them being very sluggish. She also could not hear his epiglottis closing over his wind pipe. His tongue was also not working correctly, and protruded out more then it should. Between that and his facial paralysis, he was not able to form a good seal and force the muscles to work correctly. She immediately called for him to be NPO, or no food by mouth. She feared he would choke on anything, especially liquids. She gave me some different tricks to work with him.  She also ordered for the nasal tube to be placed. She warned me that she wasn't to sure if the muscles would return soon or not, and to possibly look at longer termed feeding options, including a surgically placed feeding tube. But she'd come back after the weekend and she would do some more checks to see where we were at.

So the verdicts were in. JD couldn't swallow on his own. We had been right. AGAIN. Again, the doctor didn't listen when I mentioned something was needed. I am sure she had her reasons. But at some times a parents concerns should be addressed!!

The worst was yet to come. We had to place the feeding tube. JD was not in full agreement of this idea. And fought us. We explained the importance of the tube. He understood it, but he didn't like the placement. I sat with him through it. He cried through it, but we got it placed and taped. The feed was started. However, a couple hours after it began it was determined we had to shut it off for the night as JD was going for an MRI in the morning and he was going to need to be NPO (or tube) for the procedure.

Seeing a tube in your son is not what any mother wants to see! But it was a slight sign of comfort. For now I knew my son could finally get nutrition. Nutrition he was badly lacking since getting sick. How is a child expected to get better and battle whatever is attacking him, when he has no ability to build up his strength. Just maybe we were going to turn the corner!