Monday, April 12, 2010

The hardest part

I’ve always wondered how they do it - the parents of sick and hurt kids, the guardians of tiny bodies undergoing big procedures, sitting by hospital beds and making huge decisions. I always wondered how they managed because I clearly couldn’t and was so grateful I didn’t know. And while it could have been much worse - now I do. The answer is you have no choice and try as you might to regain control, it all just spins wildly beyond your finger tips. And you just manage.
Its been a month since this all started, and tomorrow will mark 2 weeks since we were finally released after 3 hospitalizations and two surgeries and hopefully the end. When I first sat down to write this out, after we were released the very first time, I had so much to say. And I want to have everything down so I can explain to Caden when he gets older just how he got the scars that now litter his belly. Little did I know we were still facing a long road ahead of us and here is the short, but still very long version.

Friday March 12th started out like any other day. I smiled at the routine we had established around here and in the morning Caden and I decided to make necklaces out of froot loops. We played and he went down for his nap and everything was as normal as it could be. Caden woke up from his nap and everything was still normal - he ate a granola bar and played with his toys while I put dinner in the oven. Shortly before 5:30pm I took Caden into his room to get him dressed so we could run to the store and as I buttoned his jeans he whined “Mommy, my belly hurts”. My first thought was that his pants must be too tight and we’d be heading into 5T sooner than expected but I checked and they seemed okay. He did, too, and ran out to the living room to play. I sat down to nurse Parker and Caden grabbed his belly suddenly again, “Mom, my belly!” and then seemed fine. Steve came home a few minutes later and I told him that Caden seemed to have a belly ache and then Caden cried out again. Caden is a tough little guy - of all the tumbles and bumps and bruises, and there have been some nasty ones, he has never even been one to cry so I knew something was wrong. He said it again and I could tell he was in pain - I told him to lay down but he just jumped around.. And then he was fine again. Steve thought maybe he was just really hungry, and he hadn’t ate much for lunch, so he dished out food. I hoped Steve was right but at this point I knew something was very wrong. We sat down and Caden refused to eat and said his belly hurt once more. At that point it was enough and with dinner still sitting on the kitchen table we threw the kids in the car and headed to the hospital. It had only been an hour since the first “my belly hurts” and the decision to run out the door and I knew - I knew it was something serious and I was confident he was going to need surgery. I didn’t know for what but I could tell by his cries that this wasn’t something that was going to go away.

We checked into the ER and Caden was crying at this point saying over and over how his belly hurt and it was getting worse. I started shouting to get someone and do something as I tossed out his information and my ID - they had a nurse there right away and we were brought into a room. At that point Caden was screaming and rolling on the floor he was in so much pain and I just paced the room not being able to do anything for him - he didn’t want to be held, he didn’t want to sit down and there was nothing we could do. Each minute that passed I paced and panic welled up in my chest, begging for someone to realize that he wasn’t throwing a fit, that he was hurting. The minutes passed like hours until finally they got nurses and the doctor into our room. And then he started throwing up. At first I thought maybe the fact that he was crying so hard made him throw up… but then a few minutes later he started to throw up bile.

I told the doctor of the nights event as quickly as possible while trying to comfort my little boy as he wiggled and cried out in pain. The doctor made mention of a possible intussusception of the bowel and I just begged them to help him. Nurses came and phones rang and I just looked for support where ever I could find it. I’m not a deeply religious person but I called out for prayers for him. Parker sat in his car seat staring out at the flurry of activity around us, quiet and calm, as Steve and I draped ourselves over our little boy to help multiple nurses hold him down for the IV. He screamed in pain from the needles, in pain from his stomach, in fear of it all. I placed my cheek to his and whispered to him, terrified but calm. They finally got the IV in his arm and he was so tense that it blew and we had to do it all again. Finally they got the IV in his hand and he was given Zofran for the vomiting and morphine for the pain. He finally had relief and fell asleep from the pure exhaustion of the past two hours.

My mom came to help us after she had just got off a flight hours earlier from California. She came just as it was time to take Caden into ultrasound. She and I stayed by his side while Steve waited for us in the ER with Parker. I walked along side that big hospital bed carrying the exhausted body of my sweet little boy and I was numb. We went into a dark room and the tech would hardly even speak to me and I just wanted to know - please, please tell me if you see something, anything - a nod, wink, I won’t tell I promise. I could tell by her face she did, I could tell something was wrong. She left and got the radiologist who didn’t have the best bedside manner when dealing with distraught mothers but finally he spoke up. Caden did have intussusception of his bowel. There were xrays done and we were taken back to the ER room and I nursed Parker while we waited for the next step. Looking down at my sweet little baby as he nursed gave me peace if only for a few short moments.

The doctors came back and told me they were going to do a barium enema on Caden and that often this resolved the intussusception in most cases but first they did a regular enema to try to clear him out to give the procedure the best chance of success. They gave us a percentage - was it 85%? 70? In the end it wouldn’t matter. My mom had taken sleeping pills before this all happened and tried to throw them up as she left to come but couldn’t. It was late and we told her it was okay to go home and my mother in law was on her way.

People came back to the room, Steve stayed with Parker and I went with Caden again - I was alone now. First there were more xrays and then we were brought into another xray room for the procedure. Everything would be done under live xray so that the radiologist would see immediately if the procedure worked, or if there was a perforation of the bowel which was a risk. I maneuvered around the xray equipment and cradled his head the best I could and he was just so, so uncomfortable. I prayed, I begged and I pleaded to please, please let this work. But as the minutes passed and the conversations regarding what was happening went on I knew it didn’t.

The intussusception was in Caden’s small bowel and the enema usually worked when it was in the large bowel, where intussusception most commonly occurs. Intussusception in a child Caden’s age was already rare enough, to now see it where it took place was even more so. The procedure failed and there was only one option left.

Shortly after we were wheeled back into our ER room the surgeon arrived to talk to us. He took a detailed history of everything from Caden’s health (which wasn’t much, he has never even gone to the dr for anything other than well baby exams) to my pregnancy with him and aspects of my health history. And then in a blink of an eye we were winding our way back through the halls of the hospital and up to surgery.

The time was 1am and we were the only ones there so we were allowed to stay with Caden while he was prepped. Everyone was so kind to us. The nurse, an older woman who would cross our paths once more, let Caden call her Grandma. All too soon the time came to say goodbye to my son. Every kiss I gave him led to one more, I didn’t want to let go, I wasn’t sure if he knew enough how much I loved him, but then I don’t think he’ll ever know just how much I do and that’s okay. When Caden was a baby every day I woke up I was always amazed that I loved him even more than the day before. And when I thought I couldn’t possibly love anyone or anything as much as I loved him, I’d wake up the next day.

We were led to the waiting room and given warm blankets - everyone was cold but I was sweating. I paced the halls a few short minutes and then grabbed my keys and ran to the car. We only live 5 minutes from the hospital so I ran home to grab the things we’d need - Some extra diapers for the baby and his detachable bassinet top, Caden’s blanket, clean clothes and toiletries for us. I made my way through the halls of the empty hospital, twisting and winding past locked doors as I tried to make my way back to the ER. I ran into a nurse in the hallway who offered to escort me through all the locked points - She asked if it had been a long night and I made mention of my three year old son. “Oh, you’re Caden’s mom!”… everyone was already beginning to know who we were.

The streets were empty and it was raining. I turned my stereo up as loud as I could manage in an attempt to try and drown out all the voices in my head. I raced around the house to gather what we needed, tossed everything in the car, and raced back. By the time I made it upstairs I had just missed the call saying surgery hard begun.

We waited.

The lights of the family waiting room had all been turned down, the large television hanging on the wall was off, rain fell quietly on the windows. No one walked by, no one was there. The ventilation system hummed and seemed to echo in the halls and we made small conversation. The phone rang again - they were just finishing up and someone would be out to talk to us soon.

Doors opened and the surgeon walked out and smiled at us. I stared at him… at the man who just finished cutting into my child’s small body and I wondered, did he know? What did he feel and think as he did it? Did he know just how much that little boy meant to me? How special he was? How loved he was? Of course he could never fully know, but I prayed those thoughts crossed his mind.

Caden had something called a meckel's diverticulum. I could explain it but at this point it is easier to link, and that was the lead point that lead to the intussusception. The surgeon explained this to us down in the ER, that he had suspected it due to the location of the intussusception and Caden’s age and we were all relieved to find an answer, a reason… it was removed and thus the intussusception was less like to reoccur. They also removed Caden’s appendix since they were in the neighborhood I suppose is the best way of putting it.

Before long we were beside caden’s bed again, walking through the locked doors of the pediatric unit and into his room, one we would know too well. MIL had gone home as it was 3am and she had work in the morning. I sat and watched my little boy sleep, I held his hand, I kissed his face. I went over papers and intake with the nurse, Amy. We had made the decision earlier that evening that it made the most sense for Steve to spend the night at the hospital with Caden and for me to go home with Parker since he needed me to eat and his own bed, but oh did it hurt to walk away. And for the next several nights it was our routine - I’d tuck Caden in and wait for him to fall asleep, sneak down the elevator and out the front doors of the hospital, get home in time to try to clean up some of the damage from running out so quickly that Friday night, do a bit of laundry, and try to sleep a few hours before getting back before the doctors made their rounds.
That night I got home at 4am. Parker slept peacefully while I started into the darkness - every word from multiple doctors replaying in my head over and over until I finally drifted off.

Caden went into the ER Friday night and the surgery was around 1am Saturday morning. There was hope we could go home by Monday afternoon but there were set backs. When he was started on water he eventually threw it up. When he made it to soft foods, he eventually threw it up. There was a diaper filled with blood after his first bowel movement. We walked the halls a lot and played in the toy room. Caden had plenty of visitors and his room filled with toys and balloons. On Monday he was even able to go down to the lobby to see Raleigh, one of the therapy dogs. The routine continued and we made sure he was never alone. Steve was there all night and we were both there all day except the few times Steve ran to the office for a few hours. Our family helped us out, staying with Caden while we’d run down to the cafeteria to eat. Parker stayed with us and I know it helped Caden that he was there - he would ask to see Parker in the morning and snuggles with him all day long. People commented on how well we held it together and only once did I really break down. Saturday night after Caden started to throw up again - We turned on his Curious George movie and as the music started I flashed to images of him at home, where he should be, and excused myself to the bathroom and cried and cried. After a minute or two I composed myself and joined everyone else.

Sunday was rough - Caden woke up wiggling and crying out in pain. I demanded he have another ultrasound and just as I did the surgeon called to say he wanted testing just to be safe. I sat in the wheel chair and Caden crawled into my lap and placed his head on my chest and despite how big he has grown he fit perfectly in my arms, just as he did when he was a baby. We were wheeled into Xray and images started flooding my mind - him as a baby, with his big gummy grin smiling back at me from our front lawn. His chubby thighs and bright eyes, his bald little head. Image after image they kept coming and I silently cried.

Everything looked fine on the xray - in the end we believe the pain was from Caden holding his urine in and his bladder pressing on everything. The surgeon told us that after abdominal surgery sometimes kids did that - associated the pain with anything going on in that general area. He finally went to the bathroom and everything was okay.

Caden slowly got better, kept liquids then foods down. He was happy and loved to play and walk the halls, saying hello to everyone he met. Late in the afternoon on Wednesday, March 17th we were released. And for 5 days everything seemed back to normal. We played, we had fun. We moved to put this all behind us.

Monday, March 22nd
Once again the day started out completely normal. Morning turned into afternoon into evening into night and I tucked my boys into bed. Steve was out and my neighbor had come by and we chatted. She headed home and then around 11pm I heard a cry from down the hall. Please be the baby, please just be a hungry baby. Parker was fast asleep in his bassinet beside my bed.

I walked into Caden’s room and he was tossing and turning as he whimpered in his bed, “My belly hurts”. Three little words that will strike fear into all of us for a long, long time. I crawled into bed with him and scooped him into my arms and rubbed his head as he fell back asleep. But after a few minutes the wiggling would start again and he’d cry out once more. Again he’d settle down only for the pain to return and as it did I could hear his stomach gurgling and churning. I got up and stepped into the hall and paced nor sure what I should do and he threw up all over. My first thought was to take him to the ER so put Caden in the tub and called my neighbor. She heard Caden crying in the background and came running over.

Once Caden was cleaned and in new jammies he seemed to be doing better. I placed a call into the pediatrician and when the on call doctor called back he thought what I was hoping, a stomach bug, and suggested I watch Caden for 24 hours. Caden started to cry out in pain again, not as bad, but hurting. And then he threw up once more.

I buckled Caden into his car seat and showed my neighbor where my frozen milk was and how to thaw it so she could stay with Parker. Steve was on his way home and instead would just be meeting us at the ER. When we got there they were in the middle of a shift change so we waited. And Caden threw up more, and cried out more, and they brought a nurse to bring us in immediately.

Once again Steve and I found ourselves draped over our sons body as the placed another IV in his left hand this time. Once again he was given zofran and morphine and Caden perked right up! He laughed and played and was happy as could be. Steve and I even giggled at how silly he was being.

We were originally told they would be doing a CT but they later decided to use the CT as a last resort due to the increased radiation. We found ourselves back in an ultrasound room and for my xrays - if they showed anything then we’d continue with the CT. Everything looked okay on both exams but Caden was admitted anyway for observation. Seeing how great Caden was doing now and that those images were all clear I started to think it was just that, a stomach bug.

None of us slept that night. Steve went into work straight from the hospital, I went home, showered, grabbed Parker, and headed back. Caden woke up in a terrible mood after only a few hours of sleep. His white blood cell count was up so they wanted a urine analysis and had a collection bag on him. He refused to pee in it - he’d rather let his bladder explode before he was going to pee with that thing on him. He was in pain because his bladder was so full again and the surgeon was talking of the CT. I was scared of the radiation after what I’d been told and asked if they could promise me nothing bad would happen due to the radiation, “we would like to avoid a CT if at all possible” was the only response I was given, not reassuring in the least. He would also need to be sedated.

I told them to take the urine collection bag off and they did since they would just cath him while sedated. They took it off and caden emptied his bladder and all was right with the world. He was calm, pain free, and wanted to watch George and asked for a popsicle. Since he was doing so well I asked that we hold off on the CT and just observe him, see if the pain returned or if he threw up. Everyone agreed. In the end I wished we had done the CT right then, but hindsight is 20/20.

Caden did great - he ate Popsicles, he played, he bounced off the walls and ran around the floor. He drank and ate popsicles. Wednesday morning the surgeon rounded and laughed at how energetic Caden was as he jumped up and down excitedly and played with his monster trucks. “sometimes we never know why these things happen and they resolve themselves - he looks great and I see no reason he can’t go home as long as he eats and keeps it down”.

Caden asked for Mac and cheese and excitedly ate it all along with a banana at 11am and around 1:30am with him still completely normal, we were released. We thought it must have been the stomach flu and we walked out of the hospital.

As we walked out of the hospital into the beautiful spring day, Caden gripping the stroller happily and Parker smiling up at me, I was uneasy. I knew it wasn’t over, something wasn’t right even though Caden seemed perfectly fine. The drive home I went over everything in my head - how could it be the stomach flu? He had no other symptoms, nothing. I didn’t call anyone to tell them we were home, I didn’t update face book or another site I’m on. I said nothing because I just had a feeling.

We were home an hour and the phones were ringing and that is when I told people he was home. At around 3pm he said those three nasty little words… My belly hurts. He’d say it, then would be fine and play. He wanted to go outside, he wanted to watch George. And then he’d say it again.

I called the pediatrician and they suggested that I just bring Caden in with me in the morning since Parker’s 2 month well baby was then anyway, a rescheduled appt after the first surgery. I talked to our family about it - maybe its just gas, maybe its just attention. Maybe, maybe, maybe… I tried to believe but I knew. Us moms, we always know and should there be a lesson to be learned in all this I fully believe it is to trust your intuition.

Steve was at work and was about to head home when I told him. The tone in his voice dropped. When he got home Caden was still saying his tummy hurt, but it wasn’t like before, not as bad. Steve got home from work and made us a quick bite to eat. Caden crawled into my lap and fell asleep. Eventually he crawled to the other side of the couch and slept for an hour or so, I wish I could say this brought any of us relief but I could see his face wince even as he slept. I placed a call into the surgeon on call and he called me back at 7:30pm and we talked. While we were talking Caden woke up and he could hear Caden cry out in the background. At that point the surgeon suggested we bring Caden back to the ER for the CT scan - it was still early in the night and if nothing else we’d have some peace of mind.

Steve put Caden in the car and took him back to the hospital while I got my neighbor and settled her in with Parker. Steve called telling me to bring some clothes and something to clean up the car - Caden threw up all over.

I raced back to the hospital to meet them there in disbelief.

I was immediately led back into the ER to Caden and Steve - everyone there knew us. Even the doctor, who hadn’t been involved in Caden’s care, was aware of him due to the meckel's diverticulum - I guess word got around. At one point I paced the hall and saw a familiar face - I recognized her but couldn’t remember from where. Thinking about it we believe she was the woman who performed the 2nd ultrasound and was much more kind and helpful than the first. She smiled and said hello and then realized where we were and just walked up to me and wrapped her arms around me.

Once again Steve and I were draped over Caden as they placed another IV in him - this time in his arm as he still had the holes in his hands from the pervious IVs. He was given zofran again as he was continually throwing up bile and then they sedated him for the CT, expecting him to fall asleep. The nurses were all shocked when he never did. Steve and I held his hands and kept him calm during the procedure and we got the images that were needed. When we made it back to our room in the ER Caden was up and happy - he seemed fine and asked for drinks he couldn’t have.

I paced the hall as I talked on the phone, keeping concerned friends and family updated as to what was going on and the glances on the face of the ER staff grew more concerned. Our main nurse walked into the room and I asked if they had read the CT and she said yes. I knew she couldn’t tell me anything but I asked anyway. She knew we had been through the ringer and wasn’t going to make us wait and told us - Caden had a bowel obstruction and the surgeon was on his way.

The ER doctor came in and explained everything to us but of course his answers were limited. Before long the surgeon walked in and explained everything to us - he would try to do everything laparoscopically and his hope was that it was a simple adhesion that would just need to be snipped and that would be it. I signed the forms stating that but with notes and knowledge that he could have to be opened up this time and that there was the possibility of a bowel resection. And then we began to wind our way back up to the OR.

Caden’s 2nd Surgery
It was like a terrible nightmare replaying itself. The same nurse from the 1st surgery met us in the hallway and Caden remembered her and greeted her with a friendly “Hi Grandma!”. Again it was the early hours of the morning by now and the OR was empty so we were allowed to stay with Caden in pre-op. Despite being awake and alert this time Caden was calm, like he understood. The time came to say goodbye again and I found myself holding and kissing him, hoping, praying it was enough - for him and for me.

Instead of going to the waiting room this time we went to our cars - I was becoming engorged and needed to pump and Steve would move the other car to the accessible entrance from pediatrics. I raced home and checked on Parker and pumped. My neighbor assured me not to worry about her and to just get back to the hospital. I raced back on the empty streets, the music up once again but this time it didn’t work and my mind wandered to images of my child’s body on an operating table.

The elevator doors opened into that familiar waiting room - the lights once more turned down, the halls empty, the hum of the ventilation system… Steve had turned the TV on this time though. Steve told me I had just missed a nurse not even 30 seconds before giving an update… we had hoped the surgery could be performed by lap again but they had to open him up. I can’t remember if it was then or later we were told, but they also had to remove part of his small bowel. It was 2:30am.

Steve laid down on a chair and I paced the halls, changed the channel on the TV, sat in chair after chair. Finally I sat and rested my head against a window and peered out at the cars below as it started to rain. I then laid my head down on a chair and stared at the OR doors, begging them to open with news, only glancing away to look at the clock. Surely by 3:30am we’d have another update.

Every noise jolted me - a door opening, Steve coughing. 3:15am came and nothing. Then 3:30am. I sat up and shifted in my seat, the anxiety was building inside of me. Finally 3:45am approached and nothing - I frantically paced the halls, looking for someone, anyone, and nothing. I sat back in my chair and I under the weight of everything I just broke and started crying hysterically, gasping for breath. Steve raced over to me and wrapped his arms around me but I was inconsolable, I just needed to let it all out. I regained composure, caught my breath, and the doors finally swung open.

The surgeon sat down beside me, took my hand, and smiled as he spoke. “the first thing I want to tell you is that Caden is okay, he is fine and did great”. He explained to me what happened, that as the bowel healed from the first surgery a closed loop was formed. He was able to untangle it laparoscopically but did not feel comfortable leaving it - the bowel was so inflamed he was sure if he left it we would find ourselves back in for a 3rd surgery so he made the decision to open Caden’s abdomen and remove that section of bowel. He told me that Caden would be fine and would continue on with his life just as he did before surgery, nothing had to change. And he promised me that this was the end of it, this was the last surgery, and that we could see him soon.

A few minutes later the nurse from pre op, Grandma, came by on her way out to see us. She was so kind and we were so thankful for her - Caden felt safe because she was there. She told me I needed to sleep, I must have looked a mess. She told me to get home and get some sleep before Parker needed to eat but I couldn’t leave without seeing Caden. She smiled and said okay, lets go. She brought us through the locked doors and told the recovery nruse we were coming even though we weren’t supposed to be back there, and everyone was okay with it. We walked around the corner and there was Caden sleeping on that hospital bed, monitors beeping and a kind blond nurse standing watch at his side - I smiled in gratitude though I don’t know she realized how important she was to me. She stood by my baby’s side and watched over him when I could not.

I wanted to be strong and I didn’t want to cry even though Caden wasn’t awake. I laid my head down and rested my face on his warm, soft cheek and just breathed him in. He was okay and that was all that mattered but it was so hard to see him like that. I whispered to him over and over again how much I loved him, how proud I was of him, how he was everything to me. I lifted my head off his and wiped away the pool of warm tears I left on his cheek. Steve grabbed my hand and as we walked away I saw the recovery nurse wiping tears from her face. It helped to see that, to see that Caden was just as special and cared for by all the people around him. That he wasn’t just another body cut into. And that he was truly cared for when we were not allowed by his side.

Overall recovery was easier the 2nd time around though slower. He never threw up, no blood soaked diapers. The first day was so much harder through. He was on Morphine and slept most of the day away and because he was on the morphine he was on extra monitors that he didn’t have before.
We went much slower this time with introducing food and liquids, giving his bowel plenty of time to rest. By the time Saturday rolled around he was a little beast and understandably so. The constant blood draws and poking and prodding and being tied down to IV poles - but really he was so hungry. One of the nurses felt so bad she allowed him to eat 5 cheerios and his attitude completely changed. Caden was the only patient on the pediatrics floor for a lot of our stay so he got all sorts of extra attention. The nurse offered to take him on a walk one day so I could grab a quick bite to eat and he went to the lobby and got to play the piano. All of the nurses were absolutely fantastic and we would have been lost without them. I only hope they know just how special they were to all of us and how much they all helped us get through this.

Monday he was finally allowed to eat regular food and got breakfast, lunch, and dinner and kept all of it down. By Tuesday morning his white blood cell count had returned to normal and we were discharged that morning.

It has been almost two weeks now since Caden was released and he is currently climbing the couch and sliding into a pile of pillows he stacked up with a proud “tada!“ followed by skipping down the hall to play with his toys. He lost a lot of weight in the hospital but as started to gain that back. When we first got home you could feel his ribs through his shirt when you rubbed his back but already he has gained some weight back. Things are normal, but I know that doesn’t mean much. Leaving the hospital that last time, it did feel right though. Steve and I took the boys on a walk, Parker’s first finally, and just enjoyed being home, together. We’ve celebrated Easter and played with toys and are settling back into that sweet routine I smiled at in the morning hours a month ago.

The best part of all is that Caden is on his way to making a full recovery. That he is back to his energetic, playful self. I couldn’t have asked for anything more. And while we still are watching him with a close eye and late night whimpers and the words “my belly hurts” brings on anxiety like steve and I have never known, we are moving past this and I am, without question, forever grateful, thankful, and blessed.


Deidre said...

Oh, Carrie, I am so sorry you had to go through all of this. Thank you for sharing your story.

Mandy said...

Oh my goodness Carrie, how horrific! :( I'm so sorry you guys all had to go through this. Poor little guy... although I have to say, I don't know that I have EVER seen anyone look so cute in a hospital gown!! Those pictures totally melt my heart!! I'm so glad he's recovering now!

Elizabeth said...

I couldn't keep from crying while reading this story - what an incredibly traumatic time for you all. I'm so glad he's recovering well.

Anonymous said...

The tears rolled while reading about this journey. I can't even imagine how hard it was for all of you but I am so happy to hear that Caden is doing better and healing well - what a blessing!


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