On Wednesday, 5/12, Chase and I took Cash to Cook Children’s downtown for a scheduled procedure to close the stoma left behind from Cash’s trach.
A little back story… in March, I stayed 2 nights with Cash in the PICU at Medical City Dallas Children’s hospital where Cash’s trach was removed. The coolest part, Chase was able to remove the trach and our ENT, Dr. Patel, placed a bandage over the hole to allow it to close and heal. He was monitored overnight and deemed safe to go home. Over the next several weeks, Cash thrived. He ate better and even seemed to sleep better without the trach in place. Fast forward to the last week of April. We took Cash in for a follow up visit with Dr. Patel. We discussed surgically closing the stoma as it hadn’t completely closed on its own and was still leaking some air. The size of the hole that was left was smaller than the end of a q-tip, so very tiny. However, Chase and I agreed it would be better to proceed with surgically closing it now versus waiting until further into the summer to give him the best opportunity to heal before swim season began.
Surgery day came, we arrived at the hospital and began the pre-op process. Unfortunately, we are pretty familiar with the surgery process as this was surgery number 15 for our brave boy. We were very grateful that Covid restrictions had been modified because now Chase and I were both able to be with him for the procedure. Cash went back to the OR with Dr. Patel about 8:30 am that morning. We had planned to stay the night for observation as a precaution. The surgery went really well, and Dr. Patel planned to check in with the floor nurse in the morning and let us go home. We planned to see him in the office on Friday for a check of the surgical site. Throughout the day on the surgical floor, Cash was doing really well. He was complaining of feeling pretty sore, but he was playing, eating, and being his typical resilient self. Things were going so well that I left to take Charlee to practice, and Chase stayed with Cash.
Around 6:30 pm, Charlee and I headed back to the hospital so that Chase and I could switch shifts. I was going to stay the night with Cash and Charlee was going to go home with Chase. I called Chase a little before 7:00 pm and he mentioned that Cash was in a lot of pain and breathing weird. He also noticed some blood coming from his surgical site. He said he had mentioned it to the nurse, but they weren’t alarmed. I talked to him again right before parking in the parking garage and I could hear a bit of panic in his voice. He told me Cash was working really hard to breathe and he kept trying to get some help from a nurse, but no one was available. As I walked into the main entrance of the hospital, I heard a med alert called over head for Cash’s room. I hope you have never had to experience this with a loved one, but if you have, you understand the amount of sheer panic that rushed through my body.
I literally had seconds to make some really tough decisions. They wouldn’t allow Charlee into the hospital because she was under 18. I couldn’t leave her unattended outside of the building and I was sure she was scared, too. I wanted to stay with her and hug her, but I knew an emergency was happening upstairs. I had to leave her with a security guard while I quickly called one of my best friends to come get her and take her to my mother-in-law.
Upon entering the room, Cash was surrounded with health care workers doing everything they could to stabilize him. Chase was laying in the bed next to him doing everything in his power to keep him calm. He was struggling to breathe like I had never seen before. He was so scared. I pushed my way to the bedside where Cash could see me as I began asking questions to understand what was going on. Several things were done to stabilize Cash, and finally, about 45 minutes later, Cash was resting quietly and breathing comfortably with a nasal cannula providing 2 liters of oxygen.
Around 10:00 pm, Chase and I decided we would both stay because what happened several hours ago left us feeling pretty unsettled, so we got comfortable in the room. Both of us began to doze off, but we were abruptly woken up by Cash struggling to breathe again. He had pulled the nasal cannula off of his nose and was no longer holding his oxygen saturation. By this point, Chase and I knew there was something wrong. Chase demanded to call the surgeon for some answers. Upon explaining everything to Dr. Patel, he decided to come back up to the hospital to take Cash back to the OR because he agreed, the bleeding and respiratory distress were signs that something was not right.
About 1:00 am we very carefully rolled Cash down to pre-op and back to the operating room with Dr. Patel for an emergency procedure. Chase stayed in the bed with Cash to ensure that he would stay asleep and stay comfortable. When the doctors were ready for him, Chase and I slipped out of the room quietly and waited in the parent waiting are. Here we were, in the middle of the night, scared to death, enduring surgery number 16.
I was crushed and terrified. Chase and I sat in silence for about 2 hours until Dr. Patel came out to update us. He explained to us that one of the muscles he sutured had a vein beneath it that was bleeding. The blood congealed and collected causing a hematoma which ultimately obstructed Cash’s airway. Dr. Patel was able to cauterize the venous bleed and control the obstruction. Chase and I were relieved to know that there was a solution to the problem, but those two hours were very, very dark for us. We shared with each other some of the dark thoughts that Satan was trying to get us to believe. We both felt like we were going to lose Cash. Typing that sentence physically makes me ill. Cash has endured a lot, but we have never felt like we were going to lose him.
Post operatively, we agreed to admit Cash to the PICU in case things were to get funky again. We felt more comfortable with their ability to respond and stabilize him in the PICU. I was a little discouraged when he woke up Thursday morning and sounded like a squeaky toy. He was making an awfully familiar sound that both Chase and I are scarred by… stridor. Cash was stridorous when he was upset and when he laid flat. We both became increasingly concerned as we expected him to wake up from his second procedure without any respiratory complications once the hematoma was resolved. We were reassured by the PICU team and Dr. Patel that we shouldn’t be too alarmed because his airway suffered quite a bit of trauma over the last 24 hours. We stayed in the PICU another night to continue monitoring the stridor as the PICU team treated the inflammation of his airway with IV steroids. As the day went on, Cash was running the show in the PICU. Literally… he was racing the nurses in their office chairs as he “ran” in his wheelchair. They were having a blast with him. He was happy, playful and beginning to feel much better.
Finally, Friday evening rolled around, and Dr. Patel encouraged us to stay one more night on the regular floor just to ensure that everything was headed in the direction that we expected. Friday night came and went. Cash slept great! We didn’t hear any stridor or wheezing, and he appeared to be breathing very comfortably. About 10:00 am, we were given the okay by Dr. Patel to head home.
Home we went! And it felt amazing to be back at home as a family again. Our church family delivered lunch and we went on about our day enjoying one another. As nighttime neared, Cash appeared to be exhausted and winded easily. We decided to lay him down for bed. Both Chase and I watched him like a hawk with the pulse ox hooked up to him so that we could verify he was okay. About 1:30 am, Chase and I became super uncomfortable with the stridor and the retractions Cash was having in his sleep. We woke him up and attempted to get him comfortably breathing again. Both of us became panicked when Cash began telling us that he couldn’t breathe. We started oxygen and ended up calling 911. Chase and Cash rode in the ambulance downtown to be evaluated. At this point, I began packing my bags because I just knew they were going to admit him again. However, after the ER doctor called Dr. Patel, they decided to image his neck and determined that he was actually safe. The noisiness while sleeping is still thought to be from the inflammation and trauma that he endured after two procedures on his airway. Chase and Cash were discharged home about 6:00 am.
Today, Cash is still stridorous at night. None of us are sleeping well because it is incredibly scary, however, yesterday afternoon we saw Dr. Patel in his office and came up with a game plan. He wants to give Cash more time to heal and expects that this will get better over time. However, if by Monday we are no better, he will take Cash back to the OR Tuesday morning to visualize his airway and potentially correct any narrowing or injuries that he may have endured.
What a week! Chase and I are really struggling to see him so noisy and restless at night. We are feeling like our faith is really being tested and we are completely exhausted. However, we are clinging to His promises and praying that the Lord heal Cash’s little body. This kid is one tough and brave little fighter who continues to amaze us. This too shall pass!
-Carly
Our marriage was struggling. My patience was wearing thin. I was snapping at Charlee. I wasn’t enjoying the job that I love so very much. I had no desire to do the things I loved anymore and even then, I didn’t seek help.
In December, the four of us went on our annual ski trip, but this time we went to Winter Park, Colorado. Honestly, mom gut told me this was a bad idea. A very bad idea. In my head, fear was winning. I didn’t know how to tell Chase that I just didn’t think Cash was ready for this because this is his favorite trip of the year. I kept thinking about all the things that could go wrong, I was a nervous wreck and tried to drum up an excuse as to why we shouldn’t go. After sharing my concerns with Chase and receiving the go-ahead from his pediatrician and pulmonologist, we went. We hauled all of Cash’s medical equipment up to Colorado and had the best time. I will never forget the time we had together and in the end, I am SO glad we went. The four of us needed really needed that time together. Chase and Charlee skied their little hearts out. We explored the town and made s’ mores. We laughed, shopped, and enjoyed each other’s company.
Watching Cash and Charlee together day and night melted my heart. Cash lights up when he is with Charlee. His eyes sparkle and he totally doesn’t mind that she is in his face, yanking his arms around, and squishing his chubby little cheeks, in fact, he thinks it’s hilarious. Charlee assumed the big sister role just as I imagined. She is very protective of Cash and will snap at you in a heartbeat if you aren’t doing what she thinks you should be doing with her “baby brudder”. She has no problem telling you that you are too close to his face and need to wash your hands! Watching them together is the definition of happiness.
Fearfully & Wonderfully 