Forward and Back Again

Isaac had his aero-digestive clinic appointment one week ago. I went to the appointment not knowing what to expect; even so, I could never have imagined it would go the way it did. We met with the GI doctor, then the pulminologist, and then the ENT. The ENT wanted to pull out Isaac’s feeding tube and put a camera through his nose to watch his throat and airway while Isaac took a bottle. I wasn’t convinced Isaac would accept a bottle (and i didn’t have one with me) but the doctor insisted it had to be done this way. I asked if it could be done while breastfeeding but that idea was shot down and I had to pump milk while sitting in the exam room. None of the doctors were very conscientious about keeping the door closed as they came and went. Isaac was taken for the camera and I was told I needed to stay in the exam room no matter how hard Isaac was crying down the hall or else I would be sent to the waiting room. He asked if I was “OK with that” and honestly, no, I wasn’t OK with it but I would do it. Less than 10 minutes later, the nurse came to get me, saying that Isaac was refusing the bottle and the doctor was willing to try the camera while breastfeeding, something he’s never had to do before. Isaac did well on camera. Afterwards, he wanted to continue nursing and ended up choking three times, twice in front of the ENT. Regardless, the doctor felt that Isaac was “safe” to eat by mouth because he was indeed coughing and a little aspiration shouldn’t lead to long-term lung issues.

The pulminologist had a much kinder demeanor and suggested we try all oral feeds and if it doesn’t go well, reinsert the feeding tube and try again in a month. I left the appointment fighting tears. My gut was telling me he’s not ready yet, regardless of what the doctors say. But I will give it a shot and see how it goes. The rest of Friday wasn’t bad and Saturday went better than I expected. Saturday morning, I received a phone call from the pulmonary office, checking in to see how he was doing. I told them that if he stays like he is today, I don’t think I’ll have to put his tube back. But by Sunday evening, Isaac was struggling again. He would choke while nursing, choke while trying a bottle, and his reflux was 10x worse than before we  pulled his tube out and he was choking on that too. Monday I couldn’t stop crying every time he struggled. I paged the on-call pulminologist and was advised to reinsert the tube and switch Isaac back to continuous feeds. I felt heartbroken to have to put his tube back in and I felt heartbroken watching him struggle. Neither option appealed to me. Later that afternoon, the visiting nurse stopped by to help hold him down so I could put his feeding tube back in. It was an almost instant improvement. He stopped refluxing and choking.

So now it looks like Isaac has a volume issue. When he started getting more at once, his reflux worsened tremendously. I don’t know what to do for him. The feeding tube helps to protect him from choking when he eats but could potentially worsen his reflux and lead to oral aversion, the continuous feeds help minimize his reflux but cause him to feel hungry all the time and could possibly be contributing to his issue tolerating volume, and feeding him by mouth satisfies his need to nurse and avoid developing oral aversion but causes him to choke and reflux. I don’t know where to find a balance for him. I feel like I’m trying to balance a stack of china tea cups on my head while riding a unicycle and juggling four monkeys trying to eat bananas.

I brought up the idea of getting a second opinion in Boston at his 4 month check-up. She didn’t see what they’d do differently at this point and feels it would be a waste. I agree for now. But if there is no improvement in the coming months following his current doctors’ plan, I will seek a second opinion.

Just like Job

“So I have been assigned months of misery,
and troubled nights have been allotted to me.” – Job 7:3

Today’s first reading and homily resonated deep within me. It was the story of Job, an old-testament man of God who faced horrible hardships and losses and yet remained faithful throughout his trials. His story and the homily today addressed the question of “Why do the righteous suffer?” I have had many a weak moment as of late, wondering “Why me? Why my children? What is wrong with me? Why have I failed to produce a healthy child? What have I done to deserve this? Why do things keep happening?”

Why do bad things happen to good people? Because the devil only wages war with his enemies. God does not punish His faithful with bad things, He is there in the midst of them, offering strength and comfort to endure.

Mother Theresa once said “I know God would never give me anything that I can’t handle, I just wish He didn’t trust me so much.” With every trial you are faced with in life, God offers the grace to overcome it but YOU have to turn to Him and accept this grace. I don’t think I will ever fully understand why bad things happen to good people. Why God allows this suffering. I mean, He’s God right? He doesn’t have to allow this; He could stop it if He wanted to, right? This is where trust and faith in God are so important. Despite the suffering, I need to trust that God does have a plan beyond my understanding and have faith that He will give me the graces I need to prevail. Like the Footprints in the Sand poem: “During your times of trial and suffering, when you see only one set of footprints…it was then that I carried you.”

Trial and Error

Just when you start to get the hang of something, things change. One of the most frustrating things I’ve found trying to cope with Isaac’s feeding difficulties is that every child is unique and unlike any other child, which means that you can only guess how they will tolerate an intervention until you actually try it and not everything will work for everyone. I learned this lesson long ago, when faced with my first son’s diagnosis of gastroschisis. I could get a general picture of different potential scenarios but there was no cookie-cutter way to know his prognosis and treatment path. “In general…but we won’t know until…” was usually how any question was answered until we were in the moment and making decisions about that moment. Children are unique and in most situations, that translates to treating them medically too. It’s very different from, say, ear infections, where an antibiotic is prescribed and in most cases, that clears up the infection. There is a lot of trial and error when it comes to treating the digestive system. There is no way to tell what a child will and will not tolerate until you try it and see.

I have now changed Isaac’s NG tube twice. It is incredibly traumatic for both of us. He sees me just cutting the tape and he starts to scream and cry which breaks my heart. The pain you feel when you know you are hurting your child, even if for their own good, is the worst pain I have felt as a mother. They don’t understand why you are doing it and the look of betrayal in their eyes just cuts you apart.

These last two weeks, Isaac has been having more difficulty tolerating tube feeds. His reflux has begun to worsen and he has been choking and aspirating during feeds and even after them. His wheeze has also returned. Up until now, I thought his main issue was with swallowing but you don’t swallow during a tube feed; his pediatrician and I both think his issue is twofold: difficulty swallowing, resulting in aspiration, and reflux, also resulting in aspiration. It hurts me that I can’t seem to feed my child without hurting him.

It took me 6 days and a little pushiness before I was able to relay his feeding intolerances to his GI doctor and receive suggestions on how to proceed until his aero-digestive clinic appointment on the 13th of this month. Talk about frustrating! His GI told us to stop any and all oral intake and gave two suggestions: either decrease his bolus amount from 135mL to 100mL every three hours OR switch him to continuous feeds at a rate of 30mL/hr for 24 hours a day. Currently, he was receiving a minimum of 810 mL/day. When he was first admitted to the hospital, he was started at 100mL every 3 hours and lost weight at that rate. That would only give him a maximum of 800mL/day. Switching to continuous feeds at 30mL/hr would only give him a maximum of 720mL/day. Because I couldn’t discuss this with his GI doctor, I called his pediatrician and talked it through with him. His suggestion was that if the 100 per 3 hours didn’t work, try 35mL continuous. That would at least give him 840mL/day.

I made the decision to try decreasing his bolus amount first; it was the least different from what we were already doing. He tolerated the first few feeds alright but by the end of the day, wasn’t tolerating them as well. I switched to continuous feeds at 35/hr and it was soon evident that he wasn’t tolerating that amount either, so I had to decrease him to 30/hr continuous.

Continuous means Isaac will always be attached to the pump, which can get tricky. I had one doctor joke that this is his new umbilical cord. And in a way, he is completely accurate. Isaac is attached to me and sustained via this feeding tube and backpack. Give a whole new meaning to “the fourth trimester.”

The home health nurse stopped by for a weight check and Isaac has lost 6oz in the last 5 days. She will be back on Monday to recheck and I’m praying this trend doesn’t continue. I’m anxious about how his appointment at the aero-digestive clinic will go on the 13th and praying we can come up with a better game plan than what we’re currently doing. Unfortunately, the NG tube itself will make reflux worse, as it keeps the stomach sphincter open and acts like a wick. I just don’t know…I have ideas and hunches about what may work but it is ultimately the decision of the doctors. I’m beginning to trust myself more and more. A few months ago, when I was struggling to nurse Isaac one evening and he kept choking, my husband was feeling as helpless as I was and asked me what Isaac needed to help him; I was blunt and told him “honestly, he needs an NG tube”. Intuitively, I knew…and having a medical background has definitely been beneficial. At Isaac’s last appointment with his pediatrician, his doctor told me “I’m glad it’s you. I’m not glad you are having to go through this but I am glad it’s you. So many other mothers would be freaking out by now and not know how to handle all of this and get this far.”