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.

Monday, August 6, 2012

The night is darkest just before the dawn

Before I launch in to today's story, let me just say that I'm not writing about all of these things because I want to be a Sally Sob Story. A big part of my reason for writing this blog is to be better at journaling. These last few weeks have been difficult, and I've learned a lot as a result. I'm writing this stuff down partly so that I can remember it and continue to learn from it. Thanks for putting up with me!

So, to start where we left off last time: Noah's wheat allergy test came back negative!!!! His reaction to wheat on the blood test was only slightly elevated--definitely not enough to be causing all those poopy diapers, and not enough to start buying gluten-free bread. Naturally, I was relieved that he doesn't have a wheat allergy, but that still left us with no answers about what was making Noah's body so sick.

The next step that our pediatrician advised us to take was to see a gastroenterologist. I took the first available appointment, and on Thursday morning I got both of us up early and drove in to Salt Lake to see what they would have to say. I met with their nurse practitioner, and we discussed the possibility of Celiac Disease based on certain things that made him a candidate. She ordered a blood test for it, but she thought that a bacteria called Clostridium Difficile (c. diff) was more likely to be responsible, and ordered a test for that as well. All of the antibiotics that Noah took for his ear infections killed all the good bacteria and thereby gave this c. diff. bacteria--normally dormant in most people--an opportunity to grow, eventually growing enough to cause this nasty diarrhea that has been plaguing Noah for over a month now. So we went to their lab, got the tests done, and went home to wait for the results to come on Monday.

As if all of this--the blood tests, the possibility of Celiac disease, bad diaper rashes, and Noah's increasingly poor and picky appetite--weren't wreaking enough emotional havoc in our lives, Noah had a rare complication from the month of constant diarrhea on Sunday morning. I was alone with Noah when it started, and I had no idea what to do about it. I'm not going to go into details here, because it really was an unpleasant business. All I'm going to say is that it was NOT life-threatening (thank goodness), but it was still scary, it put Noah in a lot of pain, and it was all very upsetting. After trying to handle it myself (with the help of my mom and mother-in-law over the phone--thanks, moms!), I called Tyler home from his church meetings and started trying to decide how we were going to make this better. It was evident that we couldn't deal with this problem on our own, but it also happened to be Sunday--a day that our normal pediatricians' offices aren't open. And, from our internet research about this particular issue, it appeared to be rare enough that your average pediatric Instacare wouldn't know how to handle it. We decided to give the Kid's Instacare a try anyway, and drove 40 minutes in order to get to a location that opened an hour sooner than our local one. Although the nice nurses and doctors at the Instacare recognized that this problem was not life-threatening, they didn't know how to handle it and told us that we either needed to take him to the ER at Primary Children's, or wait until our normal doctor's offices opened on Monday.

We didn't want Noah to have to suffer any longer, so we decided to go to the ER. Not only did they show us how to handle the problem and gave us pain meds to make it easier on Noah, they also had the results of the c. diff test, and told us that it was positive. The gastroenterologist on call--who also happened to be from the same office as the gastro nurse practitioner we saw last week--gave us the prescription we needed to start treating the c. diff, and since the hospital's pharmacy was open on Sunday, we were able to fill it right away and start giving it to him.

Even though it took a trip to the ER to get it, I felt very relieved that we finally know what's been causing Noah's illness a day early, and that we could get the medicine to treat it right away. A phone call to the gastroenterologist's office this morning confirmed that he does not have Celiac disease, and that it's just this nasty, stubborn bacteria that's making him sick.

Unfortunately, things still aren't simple and easy. This c. diff bacteria is very hard to get rid of, so Noah's road to perfect health may be long, and we might need to try several medications before we get there. The medicine that Noah is currently taking makes him nauseous, and while I'm hoping that his body will adjust to it and that the vomiting won't reach a severe level, we might need an anti-nausea medication to counter it.

Despite the many, many roadblocks we've encountered in this process, I'm so glad that we finally have answers. We know why this illness started, we know how to treat it and how to prevent it in the future, we know that he is not allergic to wheat and that he does not have Celiac Disease. Most of all, we know that he will soon be back to his normal, healthy self very soon.

Especially over this last weekend, I've been reflecting on the steep, steep learning-curve the first year of my motherhood has given me. I've become acquainted with the worlds of ear-infections and food allergies. I've learned creative ways to help pack some pounds on an underweight child who is allergic to dairy. I've learned the importance of taking a good probiotic after taking antibiotics for a long time (VERY important, folks!). I've learned that I can deal with things I never thought I could handle--things I never wanted to handle.

More importantly, I've learned how to enjoy my son. I've found a wealth of joy in the way he wrinkles his nose and sets his lips, the way he cuddles with stuffed animals and romps right before bedtime, the way he loves to look at books and carry my purses around. My child's vitality and curiosity and smiles enrich my life and causes me to say that I am truly blessed. I thank the Lord every day for a life so full of joy and love.