Thursday, August 16, 2012

Master, the Tempest is Raging

Master, the tempest is raging,
The billows are tossing high!
The sky is o'ershadowed with blackness,
No shelter nor help is nigh.

After Noah's diagnosis with c. difficile a week and a half ago, we've tried three seperate medications. The first one, Flagyll, made him horribly sick, and he wasn't able to hold anything down all day. My poor baby laid on the couch almost all day with me, refusing to engage in even the most gentle play, refusing even Pedialyte and popsicles. I'd never seen him like that before, and before the day was out, I knew he could not continue on this medication. So our doctor called in another prescription, one that is not commonly successful with treating c. diff but much gentler on the body. The vomiting stopped, but the new medication still affected his appetite enough that he showed no interest in eating all his familiar, favorite foods. The only food we could consistently get him to eat was Cheerios, and the only drink he would readily accept was water. Further, the medication did not produce any results, even after a week of trying it.

When our pediatrician heard my report about his appetite, she insisted that we get him eating some higher-calorie foods, worried that the lack of nutrition would impede his recovery. I tried pushing him to eat some of his favorite fatty foods--avacados, chocolate rice milk mixed with coconut cream, and wheat bread spread with sunbutter. Whenever we presented these foods to him, he would mostly pick a little at them and then reject them completely. All our coaxing and all the healthy options we tried to present him with only won out about half of the time. He won the other half, and he got his Cheerios.

We got his medication switched again, and this time we started seeing results almost instantly. His appetite improved, though he was still extremely picky and resistant to the higher-calorie foods. Our pediatrician became worried enough that she decided to call the gastroenterologist himself, and they decided that we should try Elecare and Neocate, two formulas designed for children who have suffered severe trauma to their digestive system and are unable to process food correctly. On the plus side, these drinks are high-calorie and easy to digest. On the downside, they taste awful, despite the manufacturer's effort to make them more palatable with flavors such as tropical and chocolate.

So I went to the doctor's office on Tuesday to pick up a bunch of samples of this formula. While I was there, they basically told me that I needed to get Noah to drink 20 ounces of this formula daily, or else we would need to put him on a feeding tube. They gave us a rough deadline of two days to meet this goal. Suddenly, the main issues at stake changed from Noah's battle with c. difficile to Noah's failure to eat enough and gain weight.

I left their office with a heavy, worried heart. Noah doesn't even drink that much water--his current beverage of choice--on a daily basis. And lately he's become more and more resistant to accepting new drinks, even if he likes the flavor well enough. How was I supposed to get him to drink 20 ounces of some nasty, chalky formula?

However, the thought of putting him on a feeding tube scared me to death. So we started giving it our best shot. I offered him the drinks every chance I got, and always kept his cup close at hand. We tried buying new cups, hoping that the novelty would help him accept the drink. We even tried mixing the formula in a very thick, concentrated amount and giving it to him via syringe. Noah met each new effort with the most stubborn resistance. At best, he would take sips of the beverage here and there, and then lose interest completely. He began resisting the syringe violently, even when it was the new medicine, which he happened to like. Meanwhile, our two days were flying out from under us.

Carest Thou not that we perish?
How canst Thou lie asleep
When each moment so madly is threat'ning
A grave in the angry deep?

Tyler took the day off work yesterday to give me a break, and I enjoyed a quiet afternoon in Salt Lake shopping and trying not to think about the imminence of Noah having a feeding tube. I'd hoped that Tyler could do a better job of convincing Noah to drink while I was away, but when I came home, I found that nothing had improved.

I won't try describing the emotional journey I went through last night. Putting your child on a feeding tube is far from the end of the world, but when you start thinking about all the implications--the discomfort it causes the child, the daunting task of learning to put it in and take it out, weaning the child off of it when it is no longer needed--it becomes a very scary thing. The more Tyler and I thought about the prospect, the more we noticed the gaps in our doctors' reasoning behind the feeding tube, and the more we realized that they might not have enough information to make this decision correctly. We knew that before we put Noah on a feeding tube, we needed to sit down with our doctors and have them explain all their reasons for thinking it is necessary, and we needed to be convinced that they were right. If they couldn't convince us, then we would seek another doctor's opinion. I decided that if Noah hadn't magically decided to love drinking the stuff by tomorrow afternoon, I would call and set an appointment to discuss our questions with our doctor.

As I tried to go to sleep, exhausted from a lot of crying and worrying, I thought about the formula, thought about all our prayers and efforts to get him to drink it. I said in my mind to Heavenly Father, "There is nothing more that I can do. I've tried everything I can think of. We need you to take over." 

Master, with anguish of spirit
I bow in my grief today.
The depths of my sad heart are troubled.
Oh, waken and save, I pray!
Torrents of sin and of anguish
Sweep o'er my sinking soul.
And I perish! I perish! dear Master.
Oh, hasten and take control!

This morning, before I even got out of bed, I knew that there was one more possibility. I remembered that there used to be another drink that Noah would chug down as eagerly as if it were water, something I hadn't made in a long time. Before Noah got sick with c. difficile, I used to make him "green drinks," smoothies made out of spinach leaves, bananas, juice concentrate, ice, and water. I stopped because I was worried that the juice concentrate would make the diarrhea worse. However, I thought that maybe if I tried mixing up the formula in the style of a green smoothie, he might accept it more readily.

We didn't have spinach, but we had the rest of the ingredients. I dumped a bunch of formula in the blender cup with a banana and lots of juice concentrate. I whizzed it up and poured it in Noah's cup at breakfast. He didn't touch it, didn't show any interest in trying it whatsoever. I felt my hope slowly evaporating as Tyler left for work.

As soon as the door shut behind him, Noah realized that the cup was there. He picked it up and drank. He drank for a long time. He put it down, and then picked it up to drink some more. I could see that several ounces were gone from his cup, gone within a matter of seconds. I could hardly believe my eyes--yesterday, convincing Noah to drink that much would take an entire afternoon.

His interest in the drink, though sporadic, was enough that he had finished the entire cup by noon. I quickly whizzed up another batch and offered it to him before putting him down for his nap. This brings us to the current moment--Noah is still napping, and I have a newfound hope. He's already had a quarter of the formula that he needs for today, according to the doctor's recommendations. Again, this is much, much more than every bit of formula that he has drunk willingly over the last two days put together. I feel optimistic that we can get him to drink at least two more cupfuls, which will put us close to that 20 ounce mark.

Even if that doesn't happen, and even if our doctors are still pushing for a feeding tube, I feel much better about things now. I feel like my idea about the green smoothie was a gift from heaven, a merciful gift that is the start of everything really getting better. I feel calmer with the realization that it is perfectly within our rights as parents to ask to sit down with our doctors and make sure they have all the information they need to really make a good judgement about this issue, and that we have all the information we need to feel that their judgement is, indeed, correct. This has been an exhausting, scary process, and it's not over yet. But the tempest is, at least for now, gone.

Master, the terror is over.
The elements sweetly rest.
Earth's sun in the calm lake is mirrored,
And heaven's within my breast.
Linger, O blessed Redeemer!
Leave me alone no more,
And with joy I shall make the blest harbor,
And rest on the blissful shore.

The winds and the waves shall obey Thy will:
Peace, be still; peace, be still.
Whether the wrath of the storm-toss'd sea
Or demons or men or whatever it be,
No water can swallow the ship where lies
The Master of ocean and earth and skies.
They all shall sweetly obey Thy will:
Peace, be still; peace, be still.
They all shall sweetly obey Thy will:
Peace, peace, be still.

Master, the Tempest is Raging:
written by Mary Ann Baker,
as found in the LDS hymnbook.

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