Which of all these does not know
that the hand of the Lord has done this?
In his hand is the life of every creature
and the breath of all mankind. – Job 12:9-10
The first sign of what was to come was a single cough -- a junky cough from Trent that got my attention on Tuesday, August 5. I noticed it and knew it was the first sign of something coming on. Probably a cold he picked up at church. That night, he cried out in the middle of the night. I heard a croupy sound while I was going to him. He said “I had a bad dream.” I picked him up and laid back down in our bed with him. We both went back to sleep.
Wednesday morning, he woke with a fever. I gave him medicine and after a while, he was up and running around. I noticed he didn’t seem to be feeling 100%, but nothing unusual. Just a cold coming on, I thought.
Wednesday night, he fell asleep during his bedtime story. I held him and rocked him longer than usual. He felt hot. For some reason, I had a hard time bringing myself to put him in his bed that night. Mick put the vaporizer in his room to help him sleep through the night. He did.
On Thursday morning, he woke up crying at 7 am. I could hear the barky cough while I was going to him. When I saw him, I stopped in my tracks. He was gray. Completely gray complexion. Gray lips. It was shocking. I immediately thought it had something to do with his breathing. He was getting sick, so his breathing was probably more shallow during the night. I remembered reading that a sign of respiratory distress was blue around the mouth. There was no blue here, just gray.
With 8 kids and a lot of experience with croup, I usually felt pretty comfortable handling illnesses. Our doctor once told me “Most of what we deal with is viral. It will go away by itself.” So, I often went the conservative route and only took a sick kid to the doctor if I suspected strep throat or an ear infection that wouldn’t go away.
But this was different. I’d never seen gray. I took him outside for cool air – it was foggy, overcast and chilly. We sat on the porch and he calmed down. I could tell he had a fever, so I brought him back inside and gave him some medicine. I opened a big window and laid down with him on some pillows underneath the window. He fell right to sleep, still gray. It’s hard to think back to that without feeling incredibly guilty about not taking him immediately to the ER. But in the midst of it, I felt like I was trying to take everything into consideration. I typically don’t have knee-jerk reactions to the kids’ sicknesses or injuries. I try to think things through and make careful decisions on how to handle things. Doctor visits are rare for us; hospital ERs even more so. And he had calmed down quickly and fallen asleep very easily. I didn’t notice any signs that he was struggling to breathe.
For the next two hours, I stayed busy with the morning routine, but kept checking on him while he slept. I thought about calling Kelly for advice, but never got around to it. I wrestled with whether or not I should take him to the hospital. I didn’t want to wake him. I was concerned, but I knew he was sick and needed sleep. Sleep was good.
At 9:00, Claire came to me and said “Trent just woke up crying. I took him outside and he was so cold he was shaking and his lips were purple.” That did it. If my 8yo could see a color change, he needed to go to the ER. I started rushing around, getting ready to go. By now he was awake, but very lethargic and quiet. Rachel begged to go, too and at first I said no, but then changed my mind. We took him out to the car and put him in his car seat. I ran back inside the house to get my phone and when I got in the van, turned around and looked at Trent. He looked completely normal. Perfect. Normal complexion, pink lips. I said “Are you OK?” He said “Yeah,” very matter-of-factly. This made me stop and think again. Do we really need to go the ER? He looks perfectly fine. I remembered past trips to the ER for breathing treatments and one of the respiratory therapists telling me “Yeah, it happens all the time. Kids wake up with croup, parents panic and stick them in the car and race to the ER. By the time they get here, they’re fine. The combination of cold air and sitting up is all they needed.” Maybe putting him in his car seat, upright, fixed everything. Do we really need to go to the ER? Probably not. Should I take him anywhere to be seen? He looked fine; he said he was fine. Then I thought about how he’d looked that morning. Gray. That was weird. And the fever never left, in spite of the ibuprofen. So, I decided to go to the urgent care clinic just to have him checked out. But since he looked perfectly fine to me now, I wasn’t too worried. On the way, I told Rachel I thought the doctor would probably tell us it was viral and we’d be sent home.
The clinic was not crowded, but we ended up waiting 45 minutes to be seen while people came in for shots. The whole time we waited, Trent sat quietly on Rachel’s lap, not talking, not crying, just sitting. Sometimes he dozed. He looked fine to me; I wasn’t worried. At one point, I mentioned how much cheaper our clinic co-pay was than the ER (boy, that one came back to bite me). We kept an eye on the clock and wondered whether we would be able to get everybody up to Lafayette in time for our 1:00 dental appointments. I thought about just leaving. Trent still looked fine. He dozed. A lot.
When we were finally called back, the nurse weighed him, then we went back to the exam room, chatting about everyday things. In the exam room she asked me to tell her what was wrong with him. Then, she began taking his vitals. She started with his temperature – it was low-grade, about 99. Then she put the little thing on his finger -- what was the name of it? Pulse ox? I wasn’t exactly sure what it checked. It read 78. As soon as she saw the reading, she said “That can’t be right. This thing doesn’t work right sometimes. I’ll get another one.” She came back in the room right away with another one and put it on his finger… 78. “I’m going to get the doctor,” she said and raced out of the room. While we were waiting, I was wondering what 78 meant. What was that? His heart rate? Was it low? High? I looked at Trent. He was still sitting on Rachel’s lap quietly. I didn’t have much time to think. The doctor came in quickly and started asking questions. He didn’t sit down. He listened to Trent’s breathing then put another pulse ox on his finger. 78. He turned and looked at me and said, incredulously, “Didn’t you think about taking him to the ER?!” I was completely caught off guard. “Yes, I did. But then he looked better.” “He needs to go to the ER right away! Do you want to drive him, or do you want to take an ambulance?” This seemed crazy to me. I looked at Trent, sitting quietly. I didn’t see what the doctor saw. I thought he was completely wrong about it all, over-reacting in a major way. But he seemed very urgent. I said “What do you think I should do?”
“I’m afraid if you drive him to the hospital, he’ll go into respiratory distress. And then what will YOU do?”
Respiratory distress?! I hesitated, and looked at Trent, trying to see what I was missing. The doctor was tense and waiting for an answer. Against my judgment, I agreed to the ambulance. It seemed so unnecessary, but as I learned throughout this ordeal “the eye doesn’t see what the mind doesn’t know.” In Trent’s case, even the nurse didn’t seem to notice anything unusual until she saw the reading on the pulse ox. The doctor ordered a breathing treatment for Trent while we waited. People started rushing around. He was still getting the treatment when the paramedics arrived. The stretcher was brought just outside the exam room and a big medic came right in the room and took over. He checked his vitals, then held out his arms and lifted Trent up. “C’mon, buddy.” I couldn’t believe Trent went to him, but in spite of everything, he was still quiet and calm. The medic pointed toward the stretcher “Have a seat, Mom. This works better when he sits on your lap.”
They wheeled us down the hall and right out into the lobby we’d been sitting in earlier, oxygen mask on Trent. Rachel followed behind. I couldn’t believe it was all happening. It seemed completely unnecessary, almost embarrassing. I figured the breathing treatment was all he needed; that by the time we got to the hospital, they’d just send us home. As they were lifting us into the ambulance, Rachel asked for the car keys. I looked at her; she looked nervous. I frantically checked my purse, found them in my pocket and tossed them to her.
It was a short drive to the hospital. During the drive, Trent was quiet and still. The medics stayed busy trying to keep the pulse ox from slipping off of him and the oxygen mask on his face. There was no small talk. I was thinking how crazy it was that I was riding in an ambulance. An ambulance! Mick wasn’t going to believe this.
At the hospital, things spiraled even faster out of control. A nurse told me to get on the bed first and they set Trent beside me. People crowded into the tiny exam room and were rushing around us. My head was spinning. Within just a couple of minutes, the ER doctor calmly told me that Trent was very sick. “We need to put an IV in him to start antibiotics and he needs to be intubated.” No! And then, in that same calm voice, he said
“We’re going to need to airlift him to a children’s hospital, which one do you want?”
WHAT?! “Is this necessary?” was all I could get out. “Yes, it’s necessary. Which one do you want?” I couldn’t believe he was asking me this, but there he was, waiting for me to tell him which children’s hospital to airlift our son to. The nurses were already quickly gathering the supplies for the IV and putting them on the bed beside us. I said, “Do you have to put an IV in him if he’s going to another hospital? Won’t they need to do this again?” A nurse was already swabbing the back of Trent’s hand and smacking it, trying to spot a vein. Poor little guy just sat there; he had no idea what was coming. The doctor, still completely composed, said “Yes, we need to put an IV in him. Can we call someone for you?” “No.” Why did I say that? I think a small part of me felt like this was still just some mistake, that they were all over-reacting. I wondered if I should stop this. I’d heard stories of parents who stood up for their children in medical situations and just said “No. Stop.” Should I do that? The thought seemed too dramatic and out of character for me. I stayed quiet. Thank God I stayed quiet.
Three attempts were made at putting an IV in him. His left hand, left foot, then right foot, one by one. Several people hovered around the nurse while she was trying to get it in. The needle sticks made him cry. For the first time since we’d left the house, he cried. I held him tight and kept my eyes closed. Suddenly, without warning, we were wheeled into the next exam room – a larger room. So many people swarmed around us. Somebody told me to get off the bed. I backed up to the wall and just watched, not believing what I was seeing.
The anesthesiologist was standing at the head of the bed, looking directly down at Trent, holding the sides of his face. He was the only one in the room who was still. A nurse was sitting at a desk with paper and pen, writing down numbers, words, amounts. I heard people calling out questions like “When did he eat last?” “What’s his weight?” “Does he have any allergies?” They were shouting out numbers: decimal numbers, kilograms, milliliters. I hoped these people were good at math. Please don’t get these numbers wrong.
At this point, there were so many people around him all I could see were his feet. Then I saw it. A long, bright-red line of blood trickling down one of his little feet onto the white sheet. It was from one of the failed IV attempts. My heart lurched and the mama in me wanted to take care of his foot, wipe it off, cover it with a Band-Aid. Why are none of those nurses wiping the blood off his foot?!
I don’t know why, but that’s when it hit me. This was the point when it really started to sink in.
That’s how bad this is. He’s so sick, his foot -- that blood -- that’s the least of their worries! Someone asked again if I wanted them to call anybody and this time I gave them Mick’s phone number. She called him and told him what was going on, that Trent was going to be flown to a children’s hospital. He asked her “Is this necessary?” She came to me and said he wanted to talk to me, so I went out to the desk to take the phone. Several of the staff were standing around watching me, everyone looked serious. Sympathetic.
Mick said “WHAT IS GOING ON?”
“I don’t know; they say he’s really sick.” My voice was shaky. From the front desk, I could see into the exam room and could watch them all working frantically.
Then Mick said “I’m on my way to the dentist. Should I still go?”
I hesitated, then said “I don’t know.” Looking back, this was really the only funny part of this whole story. Our three-year-old was about to be airlifted to a children’s hospital forty-five minutes away and we were discussing dental appointments! I was trying to process everything, to think clearly, then: “Wait -- No, you need to come here. I need a ride to the hospital!” Everything was happening way too fast to think rationally.
A few minutes later, I heard “the chopper is 12 to 15 minutes out.” The chopper. I still couldn’t believe this was happening. The chopper was coming for our little boy. A few minutes later, I could hear the sounds of the helicopter and someone said “They’re here.”
The 3-person crew quickly came in, all dressed in black. They took over and spent about 10 minutes with him preparing him for the flight. I’ve never had the slightest desire to ride in a helicopter, but I heard myself asking “Can I ride with him?”
“No, there’s not enough room.”
By now, Trent was intubated and completely sedated. Mick came rushing in and we stood in the doorway of the room, watching. I still couldn’t believe it. They wheeled him past us and stopped so we could say good-bye. He was surrounded by so much equipment that we were afraid to touch him. I think I rubbed his hand, but I don’t remember if I could even say good-bye. Just before they rushed out, one of the flight crew looked at us and said “Drive carefully and don’t try to beat us: we always win.”
* * *
The first dream: I’m riding in the passenger seat of a speeding police car, lights and sirens blaring. The car is being driven wildly by someone I can’t see. I’m learning forward in the seat, tense and gripping the dashboard.
The drive down to the hospital was crazy and frustrating. There were wrong turns, missed turns and rapid-fire texts between me and Kelly, who was already at the hospital with Mom and Dad. By this time, I was sick with worry and couldn’t get to him fast enough. When we got to the hospital, we didn’t even know where to go in and ended up at the wrong hospital entrance. When we realized our mistake – that we were at the exact opposite end of a very big hospital – I almost just took off running to get to him. It was awful. So stressful.
We finally made up to the PICU, only to be told we couldn’t see him yet. They were getting him “settled in his room.” The resident came in and quickly began firing off questions:
“Does he have asthma?
“No, he’s always been healthy. Probably our healthiest one.”
“How long has he been sick?”
“Just since Tuesday night.” (Less than 48 hours, at that point.)
“Could he have choked on something?
“No -- wait, I did see him put a toy tire in his mouth the other day, but he took it right back out when I told him to.”
“Has he been coughing a lot?”
I had to think about this one. “No -- I don’t think so.”
Kelly, Glenn, Mom and Dad were all quiet. At one point, Mick asked “Could he have brain damage from lack of oxygen?” This was something I hadn’t even considered, and I wasn’t sure I wanted to hear the answer. The resident just said “That’s a very good question.” (Not really the answer I was hoping for.) “The good news is that his heart stayed strong the whole time he was monitored.” I thought back to the two hours at home, the 20-minute drive to the clinic, the 45-minute wait, when he wasn’t on any monitors. The knot in my stomach got tighter.
* * *
The second dream: I’m watching Trent sleeping. He looks so peaceful, almost angelic. Suddenly, a very small, almost transparent spider crawls out of his nose and across his cheek.
The Ear Nose and Throat doctor came in next and asked similar questions, then told us we needed to sign a consent to do a bronchoscopy so they could try to find out why he was having so much trouble breathing. If he aspirated anything, they could pull it out. They’d let us back to see him once he got “settled” and then they’d do the bronch. “The procedure should take about 20 minutes.”
After nearly an hour of waiting to see him, we were finally told we could go to his room. Walking back there was one of the scariest things I’ve ever done. I literally thought I was going to throw up. I wasn’t sure what I’d see, but tried to brace myself. When we came in, there were maybe a dozen people in his room, working and moving quickly around his bed. Dr. Williams stood near the foot of his bed watching him closely. I took in the scene quickly as I went to Trent and just broke down when I got to him. All the stress and worry and racing and fear just came rushing out. I leaned over him, crying and put my face up against his. In spite of all the commotion, from somewhere in the room I could hear soft lullaby music. The music was such a stark contrast to what I was seeing and feeling – all the strange tubes, wires and machines and seeing Trent in the middle of it all -- that I distinctly remember feeling angry and irritated by hearing it. It was just so out of place with what was going on. This was not “Rock-A-Bye Baby.”
Mick took this minutes after we saw him for the first time.
After a tense 30-minute wait during the bronchoscopy, the ENT came back out to tell us a pulmonologist would be taking over. “We need a longer, more flexible scope to get to the lower part of his lung.” More waiting.
Once the procedure was over, about an hour later, both doctors met with us in a private room. The pulmonologist did most of the talking. She was leaning forward in her chair, very serious, urgent. “The airways of his right lung are very red and inflamed – very angry – and filled with secretions. There are lots of thick plugs of mucus.” Then she described the secretions she had pulled out of his right lung. “They were very, very stringy, snapping off and taking the shape of the bronchial airway.” She said this was called “bronchial casting,” which is seen in a rare condition called Plastic Bronchitis. Then came the questions: Is there a history of Cystic Fibrosis in your family? Asthma? Lung disease? Could he have aspirated something? Has he had recurrent infections? Is he sickly? Does he bounce back quickly after he’s sick? Did I have a normal pregnancy with him? Delivery? Any complications? Any hospitalizations or surgeries? Pets in the house? Is he around smokers? No. No. No. The answer to every question was no. He has been healthy – completely healthy. Perfect. The pulmonologist seemed puzzled. She said that it looked very much like Acute Bacterial Pneumonia, but not only that. “I have been doing this for over 20 years and have never seen secretions like that in an otherwise healthy child who has been only mildly sick for less than 2 days. He is very critical right now, so the important thing to focus on is getting him better. Once he is better, we really need to look into the possibility of some underlying lung disease.“ Critical. As in critical condition? Our son is in critical condition? The word “critical” stuck in my head, even though I couldn’t imagine being able to say it out loud. She’d said it twice. “He is critical.”
Telling our family everything back in the waiting room was so hard. I was numb. It was just all so unexpected and unexplained. It seemed that if he had been in a car accident, choked on something, or nearly drowned this would all make more sense. Not that it would’ve been less traumatic, just less baffling. He had seemed so mildly sick. I couldn’t connect in my mind how we’d gone from that to this so quickly.
But he was sick. Very sick. That was repeated to us many times, by many different people in many ways. From his first nurse, who told me they’d start morning rounds with Trent because he was “the sickest patient in the PICU,” to the RT who hinted several days later that we “could’ve easily been planning something else right now…,” to the pediatrician who, on our first night there, said “It’s a good thing you brought him in when you did or he’d probably be dead by now.”
Finally around midnight, I found my way to the Parents’ Sleep Rooms, down the hall. I was completely exhausted and had a tight tension knot in the middle of my back. It was hard to leave him, but I knew I wouldn’t be able to sleep through the loud breathing treatments (one of the machines sounded something like a helicopter taking off) and the beeping monitors. I was worried I’d collapse if I didn’t rest.
Sleep was a necessary evil. I’d lay in the dark room for a while before I fell asleep, feeling tense, expecting to hear someone rushing up to the door and knocking on it, saying “Mrs. Worley, we need you to come quickly.” I never slept more than 5 hours at night.
The next morning, like every morning, started off early, around 5:00. I spent the first few hours sitting in his darkened room, with the frequent company of his nurse, the x-ray technician, and the RTs for his breathing treatments. While I was by myself, I just watched him breathe and thought about everything, going over and over it all from the beginning. All the sudden, I had a new thought: our nebulizer. Last winter, we got a nebulizer for Grant’s croup episodes. I had only used it once, but we did have it, plus the Albuterol for it. Why didn’t I think of that when he was gray? I was really beating myself up over this, because it seemed like it would’ve helped somehow. Could a breathing treatment have prevented all this? When his nurse came in, I told her about it. Right away, she said “It’s a good thing you didn’t think of it. It wouldn’t have helped his oxygenation, it probably would’ve opened up his airways just enough to let the infection spread even more, and it would’ve given you a false sense of confidence that you didn’t need to take him in after all, that you’d done everything you needed to do and he would be fine.” She was right, that’s probably what would’ve happened – I wouldn’t have taken him in. It was hard to even think about that.
I started to become obsessed with watching the monitors. The number I learned to watch was the oxygen saturation number. Anytime it dipped below 90, the machine began beeping every second until it got back up to 90. The lower the number got and the longer the machine beeped, the faster the people around him worked, usually by flipping him over on his left side and pounding his chest and back to break up mucus. It was frightening and awful to see all this, and yet it happened over and over again. At some point, it dawned on me that this was the same reading that was 78 in the doctor’s office. Now I understood why he panicked.
There were daily chest x-rays. We were told that on a healthy child’s chest x-ray, you want to see a lot of black. Black is air. An RT showed us Trent’s first x-ray, saying “Trent’s right lung was completely white. It looked like someone laid a piece of paper on it.” The white was from the swelling and all the mucus. The lack of any black showed us that there was very little, if any, air moving through his lung.
1st x-ray
There were tests, lots of tests. He underwent two different echocardiograms so they could get a close look at his heart, he had another bronchoscopy, they monitored his kidneys, they checked his pupils for dilation. The chloride sweat test for Cystic Fibrosis was mentioned several times. An infectious disease specialist came in every day and ordered tests for bacterial, viral and fungal infections. Everything came back negative. We were asked about where we lived, how old our house was, if we’d ever checked for lead paint or had our well water tested. They considered environmental factors. They were all like so many detectives, trying to crack a tough case.
* * *
The Third Dream: A nurse is standing in front of me holding a notepad. She’s reading something from it, something very important about Trent. I know I need to hear her and understand, but she’s whispering. I can’t make out what she’s saying. I lean forward to hear her better but she backs up into darkness. Each time I lean closer, she is further away, until I can’t see her.
Evening of Day 3, looking “improved”
On the second day, we were in the waiting room talking with Mom and Dad. One of the things we talked about was how, during trials, God often gives us signs that He is near and to trust Him. We shared stories we’d heard of others and our own experiences. Right after this conversation, we headed back to his room. As we came up to the main doors that led into the PICU, we noticed a helium balloon stuck to the ceiling. As Mick reached up to get it, we both noticed the Cars character “Lightning McQueen” on it. Cars is Trent’s favorite movie! We looked at each other and Mick said “Do you think this is for us?” As we walked back toward his room we stopped in the doorway of each of the patient rooms to see if we could figure out who’d lost it. The last room before we got to Trent’s had several people and a young boy in it. There were lots of balloons in the room and we thought for sure we’d found the owner. “Is this your balloon?” we asked. They all shook their heads no. OK, so this balloon was meant for us! We took it into Trent’s room and put it in the corner of his room, where he could see it when he woke up. It felt good to imagine him waking up and seeing it; it gave us hope.
By day 3, we were getting reports that he was showing little signs of improvement, but we were still worried. The chest x-rays hadn’t changed much and even showed a slight worsening in his left lung. He was still fighting a persistent 103 degree fever. So, we weren’t expecting to see Dr. Abraha stop by late in the day with a big grin and a thumbs-up. “You haven’t seen me very much today and that’s a good thing. He’s getting better!” We were surprised to hear this. “He is?” “Yes! Don’t you think he looks better?” We looked at Trent, with all the tubes, wires and machines surrounding him, his hands in wrist restraints. I thought Uh, no. This isn’t anything like what Trent looks like! He’s usually smiling and chattering and running around. No, he doesn’t look better. But if you say so, we believe you! I think what we actually said was something like “Oh! OK. Good!” We really did feel encouraged by this news and things seemed more hopeful. After he left, the nurse came over smiling and said to us “See? He is getting better! Now, we just need to hurry up and wait!”
There were other signs of improvement. He seemed to be more aware, squeezing my hand and turning his face towards the sound of Mick’s voice. A respiratory therapist noticed him trying to breathe on his own while she was bagging him during the breathing treatments. The chest x-rays started looking better. By Sunday, they were predicting his lungs may be healthy enough to be extubated on Tuesday. On Monday, the infectious disease doctor stopped by and said “He looks so much better – a million times better!” With all of this progress and good news, I finally felt like I didn’t need to watch the monitors so closely.
Each day, we would ask about the test results, which kept coming back negative. Various theories about the cause of all this were still being discussed. It bothered me that we didn’t have firm answers, but his nurse could see the big picture and said “We may never know what caused all this. The important thing is, he’s getting better!”
And then Tuesday. I’ll never forget Tuesday, August 12. The day Trent was finally extubated and the day we met Dave. Dave was one of the RTs who treated Trent the day he was brought in. Up to that point, we had only heard bits and pieces of what it was like when Trent arrived at the hospital, and what we’d heard sounded scary. When Dave came in the room, he casually sat down and said, “Hi, I’m Dave. I was the respiratory therapist who treated Trent when he first got here.” Then he pointed to Trent and said, “He scared the living [daylights] out of me.” [1] OK. He had our complete attention. He went on, “When they brought him in, we had no idea what was wrong. We could not get air in him; we were trying everything.” He explained “Your lungs are supposed to be soft, like a squishy grape. Trent’s right lung was like a rock.” He went on and gave us more detail, scary stuff that made us all the more grateful for the people God placed over his care. Mick asked him what he thought the turning point was. He didn’t hesitate “It was Dr. Williams. He wouldn’t give up. He kept trying different things.” So we thank God for Dr. Williams, the doctor we saw standing at the foot of his bed that first day. And also for Dave, who worked so hard to save our boy.
Shortly before extubation.
A short while after this conversation, things were just about ready for the extubation. Extubating requires careful timing. Trent would need to be fully awake, but as soon as he was awake, they would need to take the tube out or he would probably start to panic and gag. Before he was fully awake, RT Jackie turned the ventilator completely off as a test of his lungs. We watched closely for signs of him waking up, waiting and watching nervously. Then I noticed his breathing. Oh wow. It was so ragged and labored; his shoulders hunched up with each breath. His body shook when he exhaled. I was confused and told Mick “His breathing looks worse. Now he looks really sick!” Then it dawned on me: this was just him breathing! All those days of watching his chest methodically rise and fall, rise and fall -- we were seeing the machine breathing for him. This was Trent breathing! And this is much better? “A million times better”? Wow. It gave us a new understanding of how sick he’d really been. In fact, a couple of doctors described the infection as an “assault on his lungs” and said it would take them a full six months to completely heal.
Finally, it was time. Two doctors, the nurse and the RT were in the room. The extubation went very quickly; the RT counted to 3 and it was done. He lay there on the bed while the 6 of us stood around him, watching anxiously. I was looking for signs of our Trent. He looked so small and vulnerable just lying there in the huge bed. Dr. Sichting asked him if he wanted a blanket. He nodded. They covered him up. It was so good just to see him respond to a simple question like that. We watched him a little bit longer. Then Dr. Sichting said “Trent, how old are you?” We waited for a moment while he lay there quietly. Please respond, Trent. Please know how old you are. Suddenly, the blanket began moving a little and I realized he was trying to get his hand out from under it. Three little fingers came poking out the side of the blanket. I was so happy and relieved – he knew how old he was! Dr. Sichting was smiling and said “No, Trent. I want you to tell me how old you are.” I think she was trying to see if he could talk, since the tube had been in for so long. He whispered “Fwee.” Yes, three -- that’s right! These little signs were huge to us - all so reassuring that he was back.
A couple of hours after taking the tube out.
His last 3 days in the PICU were anything but boring. Hours after the extubation, he came dangerously close to being re-intubated because he was still struggling quite a bit to breathe. So, they increased the oxygen he was already getting through the nasal cannula. He also had the feeding tube put back into his nose, and two speech therapy evaluations for temporary swallowing issues, which were a result of the breathing tube. He still had de-satting episodes which made the dreaded monitor start beeping, but now we could tell him to cough and the numbers would slowly go back up. Coughing was good, they explained, so we did everything we could to get him to do it. On Wednesday, the nurse told me I’d be able to hold him – finally! I hadn’t been able to hold him at all since this whole thing started – 7 days! It felt great and he just curled up on my lap and we cuddled for a long time. I read Stellaluna to him twice and he loved looking at the pictures. On Thursday, he finally walked for the first time. His first steps were very hesitant and shaky, almost like when he first started to walk! But he ended up walking all the way down the hall! I joked that he was trying to find the Exit.
The first time I got to hold him. Best medicine ever. ♥
We finished out the tenth and eleventh days up on the regular Pediatrics floor, in a fun Indiana Pacers/Fever theme room. By his last night in the hospital, he was starting to like this game of picking out his meals from a menu, getting pulled around the floor in the hospital wagon and having our undivided attention. While sipping ice water and watching the Colts game on Saturday night, he looked around and asked “Is this MY room?” Mick said “Yes, but we’re going home tomorrow. Do you want to go home?” Trent shook his head no. Mick said “When do you want to go home?” and Trent said “Maybe in a couple days.”
* * *
Through it all, we learned so much. We learned a lot about how God designed our amazing respiratory systems. We learned that people who work with sick kids want to work with sick kids; they are dedicated, motivated and inspired by them. We learned a lot about respiratory distress (gray = bad). We learned there is “wisdom in a multitude of counselors.” (Pr. 11:14) We learned that we have such an incredible support system of friends and family – those who provided meals, let our kids spend the night, sent cards and email, came to visit us or even just came to the hospital lobby to pray. All these people, and even strangers who were praying -- they were our “Aaron and Hur”, holding up our arms when we could no longer hold them up ourselves. (Ex. 17:12). Most importantly, we learned to have a deeper trust in our Great Physician, who can overcome negative test results, baffled doctors, scary x-rays, microscopic bacteria, panic-stricken parents, collapsed lungs, and critically-ill children … and all for His own glory.
The fourth dream: In my sleep, I hear a familiar beeping sound -- the dreaded monitor beeping again. I sit up quickly to look at the oxygen sat number …
… and I realize it’s Mick’s alarm clock. I look beside me and see Trent sleeping soundly, breathing deeply. We are home.
A few more pictures …
[1] This is a family blog. Some quotes have been slightly altered.
Aunt Heather gets hugs from Trent. Not to take anything away from Heather, but this is an unusual display of affection from Trent. We think he temporarily thought she was me. :-D
Ahhhhh … asleep at last. 
Cameron
Monica, Sarah & Rachel during "Family"