It’s been awhile since I posted an update. Strangely, I have more time to post when Becky is in the hospital and I’m sitting long days at her bedside. I love to write mostly because I love to think. I’ve been keeping this blog for over a year now. What started as a way to handle Covid quarantine took an unexpected turn with Becky.
It has been a life saver for me.
I need the challenge of forming complete sentences and making sense of this time in life. While it’s good for my brain, it’s essential for my soul. Generally speaking, when I can’t get around to posting, it means that I am home. And running ragged trying to keep up with the barbarian horde. Which does little for my brain but contributes greatly to my soul. For these 8 children are my life’s work. Hour floats into hour. Day crashes into day. When I wake for Becky’s 6am feed, I often lay in bed momentarily, trying to figure out what day it is and what is on the calendar. And if it isn’t on the calendar, it doesn’t exist.
I am blessed that my calendar is so full. I don’t always feel that. But I know it.
Becky is doing well. A few days after her discharge, her incision became infected. It was frightening as I rushed her back to the hospital, knowing there was a real possibility that she would need to be hospitalized again. Based on the pictures I had texted to the team, the nurse advised me to pack a bag. As I rushed to get out the door, a late season snow storm began dumping sleet and thick, icy sludge. With the roads uncleared, I was concerned that I might not be able to get to the hospital. But, like the Little Engine that could, I kept going. A friend talked with me the entire way which kept me calm.
Dr. V, Becky’s primary surgeon, and the Heart Failure team met us in the clinic to examine her. While the wound was swollen and angry, her sternum, held together with three wires, felt stable. They felt the infection could be treated with antibiotics. Thankfully, this was the case and the antibiotics did their job. I appreciated all the texts from Dr. V and the team during the following days.
By the way, I am done calling it the Heart Failure team. I’m going with Heart Fabulous. I’ll be sure to let Dr. K, the lead cardiologist, know of the new nomenclature. Becky had another follow-up with her last week. Which meant another trip to the hospital. Becky’s x-ray continues to show signs of pulmonary edema and atelectasis. As I understand it, there are still pockets of fluid in her lungs which show up as dots (edema) and streaks (atelectasis) on the x-ray. Dr. K increased Becky’s diuretic and advised me to do CPT to break up these fluid pockets.
I send her videos of Becky’s breathing when I am concerned. I also monitor her pulse-ox and weigh her. I count her breaths, look for signs of respiratory distress, and continue the medication carousel. It’s a lot of work but I am more confident in what to look for this time around. This knowledge replaces some of the fear. But not the worry. I also text pictures of Becky as the Heart Fabulous team likes to receive cute shots of their little patient. Which touches my heart. If these people didn’t feel so much like family, this whole situation would be unbearable.
Becky is now enrolled in the Early Intervention program through our state. We are beginning the evaluation process with developmental, occupational, physical, and nutritional therapists. Becky and I attended a Zoom evaluation with the developmental and physical therapists last week. They were both impressed with her social skills and much of her physical development.
A child loses development when hospitalized for long periods of time. The fact that Becky is showing skills for a 4-5 month old baby is encouraging. Her upper body continues to be extremely weak. Her cardiac surgeries have contributed to this deficit as much, if not more, than her Down syndrome. She has weak shoulder, arm, and core muscles due to the open heart surgeries and chest tubes. But she should begin regaining upper body strength as she begins weekly physical therapy. The nutrition piece is complicated and somewhat on hold. For most of her life, Becky has chosen breathing over swallowing, which made the G-tube placement an absolute necessity. Now that she is breathing better, hopefully she will begin making strides towards the normal mechanism of food intake.
So, Becky is holding steady on the medical front. I never tire watching her smooth, rhythmic breathing. Sometimes I hold her and just watch her breathe. It brings me to tears when I remember what she went through to achieve what I always took for granted with the Rowdy 7. She is a delightful baby who loves video chatting with her grandparents and relatives. She babbles and smiles, seemingly pleased with all around her. She loves watching the mobile that Josephine’s high school robotics team made for her crib.
Greta and Angela returned home last week to obtain their second Covid vaccine. While they were only home for 24-hours, it was great to have a full house again. Becky loved all the attention.
Many of you continue to follow Charlotte’s story. I had a chance to see Maggie briefly during one of Becky’s appointments. Charlotte is doing well but has a long road ahead of her. Her team is focusing on feeding and physical therapy. Charlotte will need one more open heart surgery before she can go home for the first time. Maggie and Tim continue to shower their little one with attention and love in the PCICU. Maggie sent me this recent picture of Charlotte. Look at her giving her Mom the side eye. This kid is a fighter.
This week is spring break for my grade school kids but not my high school kids. Michael and Josephine are trying to concentrate on their schoolwork via Zoom while Johnny is looking for a companion. For Lego building. Or baseball. Or water guns. I’m not sure the high school kids are producing quality work but they are learning life adaptation skills. My neighbor told me she saw Johnny flying down the sidewalk on his scooter. No helmet. No shoes. Uninhibited joy on his face. Well, I can’t control everything. He is already talking about his Easter basket and favorite candies.
Which reminded me to put it on the calendar.