Entering the next chapter of our lives…
Ellis was discharged Tuesday afternoon on October 4th after a 9-day stay at the hospital. From the moment she woke up from the anesthesia in the ICU, home was the first thing on her mind. With a raspy voice she told me to get her stroller from the car so she could go home. I told her she needed to get stronger first, get all these lines and tubes removed, and then we could go home. She looked at me and said she was already feeling better, so please tell the nurse to remove her IV lines.
I wish she would have just let herself go and cried like an average four-year old child; instead she would look away holding back her tears mouthing “let’s go home.” The only thing I could do was sympathize with her and tell her I would be scared, sad, and missing home too if I were in her shoes. Those comments made her feel worse, so instead we started thinking about all the new toys we will buy when we go home.
After the surgery, Ellis’ voice became hoarse and developed a loud hacking cough. In the beginning the nurses encouraged the coughing because her body needed to expel gunk that accumulated in her lungs. But when the coughing persisted, the occupational therapist was called.
After some swallow tests and observations, the therapist said that Ellis was having difficulty swallowing clear liquids, which I learned is called dysphagia. One of her laryngeal nerves may have gotten nipped or still be swollen from the breathing tube used during surgery. Since she could get pneumonia if liquid enters her lungs, all her drinks had to be thickened to honey consistency from a food thickener gel. When I first saw it, it reminded me of the consistency of hand sanitizer.
The gel makes her liquids thick and gooey. It changes the smell and texture of her water, and just looking at it makes her angry and frustrated. I’ve cleaned up many overturned cups and bore the wrath of her anger. She constantly asks for “regular water” and cries when I explain that this special water is important for her health and that I am not willfully denying her of it. I’m not sure how much she understands, but it makes me sad to know that she is missing out on that refreshing feeling when you drink a cold cup of water. It seems like a basic thing to be able to drink liquids and not have a problem with it. But I’m painfully learning that none of these body functions can be taken for granted.
(note: My explanation is derived from my understanding of various conversations I’ve had with therapists and nurses who came to explain Ellis’ condition. I’m learning, so to speak, on the job. Please understand if something is off. If you have an easier way of explaining these complex functions, please share it with me!)
This is the second time she’s had this vocal cord issue. She had this happen right after her first heart surgery as a newborn. Her cry was hoarse and strained similar to her voice now. It healed on its own after three months. I’m hoping for the same outcome. In the meantime, we will meet with occupational therapy and ears, nose, and throat (ENT) specialists to find out more.
Till it heals, thicken those liquids.
In all, my fear leading up to this experience was greater than the actual days we spent at the hospital. On several occasions I would hold back my tears when I saw Ellis crying because she wanted to go home or when seeing her little legs tremble whenever needles were involved. Other times I couldn’t allow myself to turn inward or to let down my guard; if I did, I’d become useless to Ellis during her recovery.
Many concerned friends have asked me how I’m doing – not about just general things but about me, personally. My pre-recorded answer was “good” or “I’m doing ok.” But that question made me think more introspectively long after the conversation was over. How was I doing with this medical disruption in our lives? How were we coping with the anxiety and exhaustion? How was Elliot coping with all the changes in his daily life? To get to those answers, I needed to mine through layers of emotions.
When I felt scared, restless, or depressed, the drill sergeant in me came out telling me to stick it out and to stop whining. I became harsh towards myself, minimized the difficulty of my experience, and assumed that everyone else in my situation would be doing a better job than me. I smiled and shrugged off emotions during the day. But all the suppressing didn’t make the insecure feelings disappear; my dreams told me otherwise.
Some of my dreams turned into nightmares. My irrational thoughts, fears I couldn’t articulate, my nervous state – these were all playing out in my dreams. I was in danger or threatened with danger: a cloud of bees chasing me; my teeth falling out; living in a glass house with trees falling around me; swimming in dark water, climbing through rocks, ice, cliffs; and scariest of all, running from a dark moving glob that tried to grab me. The last one actually made me cry out for help in my sleep; Elliot woke up from the sound crying and got mad at me for scaring him like that. He had no idea what I was running away from…
Currently I’m trying to figure out life that doesn’t revolve around a future surgery date. There will be new challenges as we navigate heart health and life together with a chronic medical condition. For a few months, she will get frequent blood draws for an anticoagulant medication she’s taking. We’ve gone several times and it doesn’t seem to get better. Her arms are bruised up from wrist to elbow, and the lab technician finds it hard to find a good vein. Today, she had a collapsed vein during the first draw (whatever that means), and Ellis got so nervous on the second poke that she threw up all over herself.
I’m relieved Elliot didn’t join us for this appointment. He doesn’t even like to hear or say the word “blood,” so I can imagine how he’ll go nuts too. The next few months should be interesting as the kids and I incorporate these lab visits into our daily homeschooling lives. I’m not sure how to make these visits educational without getting traumatized, but I will have to integrate some lessons about blood, health, and occupations, etc. with these guys. I’ll have some false starts or it may flop altogether, but the process of planning and exploring together should be fun.
My hope is that I can look back years later and remember these special times: times when we were unexpectedly refreshed with new hope, opportunities, joy, friendships, surprises, detours, blessings, and rest. They will be great reminders of how God worked miracles, directly and indirectly, in myriad ways.
Four days after discharge, she had 24 of her chest stitches removed. There’s no doubt that she’ll have a remaining scar, but the site of her stitches is healing beautifully. I never thought I would use that word to describe stitches. But the surgeon or resident who did the final sewing took much care and precision. It wasn’t obvious at first when it appeared red, raw, swollen, roughly sewn with blue thread tied off at each end. Now that the stitches are out, the skin is healing over the symmetrical and tight scar.
These doctors have serious sewing skills in addition to the surgical magic that they do in the operating room. Then, there is the other magic that happens outside the operating room. In the intensive care unit and recovery floor, there are those doctors, nurses, and other specialists who diligently work to keep the scar healing beautifully.
Their workmanship is great! But I can’t help thinking how much greater is God’s workmanship in creating the complex yet harmonious system of the human body and giving people the potential and capacity to do awesome things in all kinds of different ways.
“Thank you for making me so wonderfully complex! Your workmanship is marvelous – how well I know it.”
As for Ellis, she reminds me of the popular saying you find on wall art these days. Googling it, I found that it’s a quote from Shakespeare. It fits her perfectly: “And though she be but little, she is fierce.”
Pretty soon… Ellis will be ready to leap over mountains in her life!
Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!