The Thomas Family: September 2013

There I was, stuffed up underneath a wall-mounted counter top with a fluorescent reading light beating down on me. There were two white hospital towels neatly draped from the even smaller wall-mounted counter top above. They were secured with two piles of dirty laundry in a vain attempt to shield the light from flooding the entire room. The laundry pile, in recent days, has had a way of growing in such a way that at times, I wondered if it might be alive. But now that dirty pile lies still, not an item added to it since 8 o'clock last night. And the silence in the room was so beautiful, that I found myself typing as softly as I could, so that I didn't break it.

One of the 14 doctors we had seen during our hospital stay had just tiptoed in the room. She whispered the same routine questions that all of the other doctors had asked, but she had a propensity for thumbs-up gesturing. As I answered her, I began to get the feeling I was winning at some game. "How is Ben eating?" Just fine. (thumbs up) "How do his incisions look?" They look great! (thumbs up) "Is he in any pain?" I glanced over at his bed, his eyes were tightly shut and he was snoring - Doesn't look like it to me (thumbs up) "Are you feeling better now that he can eat" I paused for a moment. The question irritated me. How should I answer that? No, I liked it better when he was clawing and screaming and wanting to eat and you told me that his condition was not emergent enough to bring in a surgical crew until the morning. I felt better when I was rocking him and kissing his sweaty face as he coughed and gagged as he vomited repeatedly over the last 11 hours. I felt better when I was begging for comfort and peace and sleep for him and strength for me. What kind of question is that? But I managed a "yes" instead and got another thumbs up. It occurred to me that 3 days ago I had no idea what was coming - if you had told me on Monday that by Wednesday I would be checking email from the 11th floor of the west tower at TCH, I would have called you a liar.

The Beginning

Monday afternoon I was getting the boys' supper ready. They were at the table impatiently playing with their place mats and already bargaining with me about how much supper they would have to eat in exchange for sweets. Ben was in his swing and getting restless. I decided since he had just eaten a bit ago, I had better go get him first and then finish getting the boys' plates ready. I don't move around very fast these days because 2 weeks after I gave birth to Ben, I broke my foot, neat. And then a few days later wound up with a clot in my calf vein and was started on meds to fix that problem. Just when you thought it couldn't get crazier, a whole new problem emerged.

While I was doling out pecans and raisins I had Ben slung up over my shoulder. Without any warning, he threw up across my shoulder and onto the stove behind me. The noise was as unsettling as the volume. The boys at the table both panicked. But I kept my cool. In my head I thought, well I guess that is what I get for putting him in the swing to soon after he ate. The next bottle I fed him only half of his volume, 2 oz. We had our glorious night time routine (bath, swaddling, rocking chair, and bed) and Billy and I resigned ourselves to the couch for some downtime and football. At about midnight we heard Ben squawking. It was a very disturbing sound. We both ran in and found him lying in a puddle of vomit. He was soaked. There was so much - my heart started to pound. When I laid him on the changing table he vomited again and this time choked on it. He turned blue and then a little gray and I told Billy to call the neighbor to come over and turn on the car. I suctioned his mouth and waited for him to pink up ... which he did thank the lord. But by then I knew ... something was wrong. We threw things in bags and ran him out to the car seat to load him up. We dashed off to the ER and checked in with only 3 other people waiting (a total relief to me as I had envisioned us waiting for hours to be seen). We were sitting in triage and I told the nurse my story. They took his temp and weighed him and then said they will call you back as soon as they have a room and we will get to the bottom of this "spitting up." I wanted to correct her, but I didn't have to. Almost on cue Ben vomited again. This time he was in Billy's arms and it went all over Ben's face and chest. They rushed us to the back and did a saline wash on Ben's eyes and then directed us to a room.

Answers

The nurse and doctor both took turns coming in and hearing out my story. And then I got the speech. I knew it was coming and I was dreading it. Mostly I was dreading my reaction to it. The speech started to roll off the doctors tongue and it was dripping with condescension. " Babies spit up, and you probably think it was a lot, but really it takes very little fluid to look like a lot." As I reigned in the disdain I suddenly felt for this man I reminded myself that getting upset does no good. I politely reminded him that I was a nurse and that I knew about this speech, I had even given it before. But that this was no spit up. This was exorcist-style projectile vomit. He basically told us it could be reflux, pyloric stenosis or a stomach bug and his money was on the latter. There were apparently no radiologists available to rule out the first two and so he told us to go home with a zofran prescription and slow down on feeding him so much. Furious, I gathered up our stuff and took him home. I called the pedi at 630 am and told him what was going on (by this time Ben wasn't even keeping down pedialyte and he was sleeping way to much). Our pedi (who I LOVE by the way) directed us right back to the ER. We were evaluated and sent to radiology immediately. Ben had had nothing to eat since 2am that morning besides about 2 collective ounces of pedialyte spread out over several hours. When the ultrasound tech showed me his stomach, I was completely floored. It was full of fluid. She took a few pictures and slipped out of the room. The doctor came bursting in - "well, he has pyloric stenosis, we called you an ambulance and we need to get fluids running - surgery in the morning." Billy and I looked at each other and both picked up our phones to start making plans for a trip downtown.

We rode downtown in a shoddy ambulance and took the Hardy which basically feels like you are driving on railroad tracks. While we were driving I kept thinking to myself, really? Have a baby, and then break your foot, really? and THEN find out you have a DVT in your calf - really? and THEN your newborn needs surgery - really?" And just when I was ready to kick off a big fat pity party - we arrived at Texas Children's ER. All of a sudden all my worry and disappointment with my circumstances evaporated. I was here with a sweet baby boy who had an unfortunate condition that was totally curable. I have a husband and two darling boys at home who are all completely healthy. I had no business having a pity party. The things I saw waiting in that ER horrified me. Its like all of these awful things are happening to children everywhere but in your daily life you escape the sadness of it because you don't have to see it. Here it was for me to see - raw and heartbreaking. A little girl with no hair crying and vomiting. A little boy they rushed in to the burn room who was moaning and his mother was screaming.

After the usual questions they ushered Ben and I to a room to wait for the surgery team to come talk to us. I felt guilty that I was grateful to escape the scenes in the ER. Those people didn't have the option to escape it was their reality. Their terribly sad, hideously unfair reality.

Misery

By this time Ben had been without food for an absurd amount of time. He was screaming and sweating and coughing and gagging and I was on the brink of meltdown. After 3 hours of him crying he finally exhausted himself fell asleep. Literally 4 minutes later, they came in to have me sign paperwork and transfer us upstairs. My heart sank. He would wake up for sure and I would be faced with consoling him with a pacifier which wasn't working and I didn't know if I could take it. I knew it was 4 minutes because I had begun to watch the clock religiously - counting down the hours, the minutes until surgery. I pleaded with them (in whisper voice) to give us 30 minutes so he could at least get some rest. They graciously agreed. I won't go into details about the rest of the night - it was more of the same. I don't really want to relive it - it goes against everything that is good and natural about being a parent to not allow your baby to eat. Every time I start to think about it, I try not to let my brain go there. Once was enough.

The Fix

In the morning they came to do labs at five and told me that they would add Ben on the surgery schedule today and hoped to get him in before noon. I came unglued. I had been surviving all night on the auspices that we would be first in line and that I would be feeding Ben by nine. After my outburst our nurse went to call the surgical team. They came to get us shortly thereafter. Relief is not the right word, it is not big enough. I met the surgeon who told me about the procedure and showed me to the waiting room. I was given a tracking number for Ben and there were monitors all over the waiting room that showed the status of your tracking number. So, at any given time you knew where your little one was. Brilliant. When I was not watching the monitor intently, I was taking in the sadness around me. It was almost as though I was forcing myself to be immersed in it, to stockpile the support I needed to keep my pity party at bay. In walked a little girl in pj's and a mask. She had a pink bandanna to cover her bald head. She was clutching a panda that looked like it had helped her through more than one surgery. She sat with her parents and they talked and laughed. Oddly enough the thing that struck me as the most sad is that when she was laughing you could only see her eyes (because of the mask) and I thought how sad for her parents that they don't even get to enjoy her laugh fully. In some ways I wish that we all had t-shirts in that waiting room that told our situation. "my child has cancer and my stress level is maxed out" "my child has bilateral cleft lip and palette and this is our first of many surgeries and I have no idea what to expect." I was so curious about every one's story. I decided mine would say "my child is, overall, pretty healthy and for that I am immensely grateful"

They called me back to recovery and just like that it was over. Ben's problem was fixed and we were on the road to recovery. I became acutely aware of how lucky I am to live in a time when an otherwise fatal condition was repaired with a routine 30 minute laproscopic surgery. Three tiny incisions and some surgical glue and all of our worries completely disappeared. 100 years ago, Ben would have continued to vomit and lose weight and then eventually his electrolytes would have been out of balance there would have been no hope. Again, so thankful to have landed at this point of the timeline.

When it was time to go home we unceremoniously collected our things. We gathered up our peaceful baby and took our quiet ride down the elevator to the parking garage. Our adventure was over and it was time go back to our life as we knew it. Our totally delightful, largely uneventful life. Again relief seems too small of a word for this moment.

Thanks to everyone who has helped us through this - our parents especially and our friends and families. Billy and I continue to be amazed by how giving our friends and family are. I have hardly cooked a meal in 3 weeks. We have had no trouble with arrangements for our other boys.

My littlest boy is home and in his bed. He is soundly asleep and that delights me. And with my cast propped up on the coffee table and all three monitors humming quietly behind me, I am racking my brain for a time that I felt more blessed - and I am absolutely drawing a blank.