Déjà Vu
Mia looked amazing when I saw her post surgery, considering the massiveness of what she just underwent.
All of her beautiful hair was perfectly intact in the four mini ponytails I had placed, in an effort for her surgeon to use her old incision. I was pleased to see they did. Her epileptologist came by to examine her before they took her to a followup MRI. She woke up briefly, and showed no apparent signs of any deficits, as she reacted to touch, reached for the instruments, and tracked my voice. This was very pleasing to her doctor, as I was told that any major deficits would be apparent shortly after surgery, but Mia would need time to rest and heal because it was such a big procedure.
Mia was taken to MRI a few hours after surgery to get imaging. Normally, this is done a few days after, but since her surgery had taken place on a Friday, they did not want to miss the window and wait until Monday. This was the perfect time for me to update my family. They were all so thrilled that she had made it through surgery and was anxious to see her.
I was told that Mia would remain in the PICU for a short while, and once she began showing signs of returning to baseline, she would be able to transfer to the surgical nursing floor. I slept on the couch, which was so foreign to me as we always spend time cuddling at night or when she’d wake in the mornings. My sister text me, instructing me to sleep, as it had been a long day and I needed my rest. It is hard to sleep in the PICU. They do their best to make you comfortable, but there is no comfort in the PICU. Vitals are checked once an hour, and the entire entryway to the room is glass. However, that night, I slept. I was so relieved she made it thought surgery, I crashed.
Morning came, and I quickly rose to make up the couch bed as rounds would be starting soon, and to check on Mia. I could not believe I had slept all night. I was told by the nurses that Mia did well, and the plan for the day would be to get Mia to drink some fluids. Sure enough, Mia drank some water and before I knew it, she was cleared to go to the nursing floor. By the time my father arrived to visit after his shift at work, we were packing up to get transported upstairs. Beforehand, the inpatient therapists for occupational therapy and physical therapy came to do an evaluation on Mia so that goals could be set to help her return to baseline.
We arrived on the floor and got our things settled. Mia was still very out of it, and I was oriented by one of the nurses. Much, if not all of the information, I was able to recall from our time before. We discussed what the plan would be for the night, and what was likely for the next several days. This is when I began to spiral, asking a series of questions I already knew most of the answers to; “What are the signs of infection? What is the likelihood of infection since she has had one before? How long will it take her to reach her baseline?” I explained Mia’s history to the nurse that may not have been told in nursing report to help convey my fear and anxiety that had been creeping in. We ran down many case scenarios, and that I could talk with the doctors more the next day. She spent a great deal of time with me that evening. In her doing so, I felt heard and ready to take on the days ahead.
Over the course of the weekend, Mia remained lethargic, and slept most of the day.
Her neuro exams came back fine, and the plan was to get Mia off the IV fluid, eat and drink by mouth, and participate in therapy to help her get to a place well enough to go home. As the days passed, I grew concerned that she was nowhere near her baseline. She could barely hold herself up, slept majority of the day, would fall asleep in the middle of feedings, and vomit after every feeding attempt. I felt as if I was receiving conflicting messaging from the staff. Some would ask if she was presenting near her baseline and that she should be getting closer to that. Others, felt that she was just recovering from major surgery, and just needed time. Monday morning arrived and I was told that Mia could go home the next day as long as she kept improving. The problem was, she wasn’t. She would show some motor function and awareness such as reaching for her favorite toy that I had brought along with us, or attempting to eat and drink during meal times, but she wasn’t behaving as herself in the least bit. Mia’s physical and occupational therapists came to for their Monday session. She slept through both therapy sessions in the entirety.
Not only was she lethargic, vomited multiple times a day, and had weakened motor skills, she presented no emotion. Her affect was completely flat. She did not smile, laugh, cry, or whine.
I voiced my concern that she was not herself, so she was rushed to a CT to get quick imaging to make sure all looked well post surgery. I was frightened at how rapidly the test was ordered and we were wheeled down. Mia’s surgeon came by later to inform me that her imaging came back normal and that her surgery was performed successfully. They reassured me that by no means were they rushing us home, and that we could stay until I felt comfortable leaving.
The very next day, Mia was more alert, remained awake and participated in therapy, AND, she whined! That groggy whine was music to my ears. The fact that Mia demonstrated some expressive communication was all I needed, and confirmation, that she would return to her old self! She continued to make progress throughout the day and we were discharged the next day.
Early Thursday evening, I noticed drainage from Mia’s incision site.
Drainage was one of the signs to watch out for when I reviewed her discharge summary. I felt myself spiraling. I consulted with family before ultimately calling down to the hospital. I spoke with a resident on call, and due to the fact that it was a very small amount, I was told to just “watch it” and to call back or come in if things worsened. So, I continued to monitor and wash the incision site as instructed. That Saturday, Mia vomited and presented with a low grade fever. I gave her medication, and both the fever and vomiting ceased. On Monday, the drainage had exponentially increased to the point that I could feel the fluid from simply touching her hair. I called and spoke with pediatric neurology, and we were instructed to go down to the hospital. We were in the Emergency Department waiting room for about two hours prior to being seen. Mia had gotten labs drawn and an MRI, with the potential of a spinal tap the next morning. Roughly six hours after arriving, we were finally admitted into a room, and it was confirmed that the fluid was CSF (cerebral spinal fluid). Shortly after I was informed that the resident had spoken with Mia’s neurosurgeon from two years prior, and the new plan was for surgery that morning. A brief moment of calm came over me. This surgeon does impeccable work, has excellent bedside manner, and my fullest trust in their abilities to care for Mia.
That morning I signed consent for surgery. When Mia’s last set of vitals were checked before surgical prep, Mia had a fever of 104.5°.
At this moment, I knew this was a sign of infection, but I kept calm. Luckily, her nurse administered Tylenol immediately. In the amount of time it took for the surgical unit to call for report, Mia’s fever had gone down. Upon arrival to the PACU, the surgeons and anesthesiologists felt comfortable proceeding with surgery due to the fact that her fever continued to decline, and the mere necessity of the surgery. The surgeons inserted an EVD (extraventricular drain) to drain the accumulation of spinal fluid (hydrocephalus), and to monitor and relieve her elevated ICP (intracranial pressure). The EVD uses a combination of gravity and ICP levels. The drainage rate is set by the surgeons, and placed alongside Mia’s temple at all times. Additionally, Mia’s incision had to be re-opened to view and washout the area in case there was in fact n infection present. Samples of tissue and fluid were sent off to be tested for infection as the fluid under the dura and incision were cloudy. Additionally, a section of Mia’s bone flap was removed and tested because it essentially looked “dead” further solidifying my concerns. I did my best to remain in the present and not spiral down the roads of what ifs and past trauma. We waited to hear back from the lab, and infectious disease was now on Mia’s service.
Déjà Vu
Déjà Vu. All of this began to feel oddly familiar. From morning rounds with the same attendings and fellows from two years prior, to being placed in a room only two doors down from her original PICU room, I began to feel like I was living the same nightmare all over again. Family, staff, and nurses tried to reassure me, and that we needed to wait to hear official results from the lab. The plan was to watch for any growth in the lab, and monitor her vitals and daily labs. That night after surgery, Mia was battling a fever on and off so we had to keep the room ridiculously cold. She also had elevated white blood cell count, the CSF draining, but no bacteria was growing in the lab. Early the next afternoon, Mia’s nurse came in with contact precautions and my heart dropped. Luckily, it was only because of another patient. A few hours later, her nurse came in again, but stopped and asked if anyone had spoken to me. The contact precautions were now for Mia. Two infections were found growing in the lab from her CSF. Mia had pseudomonas and klebsiella meningitis growing in her CSF. I sank. This meant an extended hospital stay, aggressive longterm antibiotics, contact precautions, and long, never ending days. As time went on, antibiotics became more specific to her infections, and her EVD would be adjusted almost weekly, in an effort to see if she would be able to regulate her CSF on her own or need a shunt. Ultimately, Mia was unable to regulate her CSF on her own and had a final surgery to place a VP (ventricular perineum) shunt. We were discharged about two weeks later. Unfortunately, Mia’s PICC (peripherally inserted central catheter) that was placed to allow for home administration for antibiotics stopped working. We are readmitted to the hospital over the weekend as her PICC line had clotted, and moved out of place by several inches. Her line was replaced and we returned home three days later. Mia remained on IV antibiotics for an additional three weeks, until her PICC malfunctioned, again. Back at the hospital after several attempts to declot the line, it was determined that since she only had one week of antibiotics remaining, the line would be pulled, and she could finish her course on an oral substitute.
Despite a sequence of events similar to her first hospitalization, this time was different. Mia had started to return to her baseline. Her smile was contagious and lifted my spirits tremendously. For someone who has been through so much in her short tiny life, she had an overwhelmingly joyous spirit. Nurses were fighting over their assignments to get to care for Mia! Many of whom, were Mia’s nurses from before. Being back in the PICU sucked, but it was familiar. Unlike before, the environment was less terrifying because I was not surrounded by strangers, and lost in medical terminology. I was familiar with the ins and outs of the what to expect. We were surrounded by nurses, therapists, doctors, and staff whom we had developed relationships with. These people knew Mia. They knew me. It is a great feeling to know your child is being cared for by professionals who know your child’s history without reading her chart, as well as personality and experiences that are not documented. I had the privilege of boasting to them about Mia and all of the progress she had made. Progress, they had all hoped for, but never knew she’d be able to achieve. Many of these talks were therapeutic for me because I was able to speak freely about and process and emotional state I was in those years ago. It was necessary for me to hear how they perceived the situation, how some shielded me from information, and the amount of growth they were able to witness in me from those few months to now. Many sat and spoke with me for hours! Some even expressed how they think of us, and approach patient and family care differently now because of us. Not only did they take excellent care of Mia and aided in saving her life, but they loved Mia. They listened, encouraged, and helped me navigate out of the darkness. They touched our lives way beyond medicine. I never knew we had done the same for them. I never knew I needed to be back in the PICU, but I did.
And because Mia was so much stronger as a two year old versus a two month old, she was able to have several experiences which made her stay more enjoyable.
One of Mia’s favorite nurses from this time around took us outside. Mia loves being outside, and this was something we never did during her first hospitalization. Watching how much Mia enjoyed those fifteen minutes in the sun for a couple times a week was amazing, and I feel, was instrumental in her healing. She was able to actively participate and engage in therapy, visited music therapy on the rooftop, and got her toenails painted for the first time! She had visits from all her (and mine) favorite nurses, therapists, doctors, and hospital staff. They made her smile and treated her with he utmost care.
I do not regret Mia’s hemispherectomy. Mia has not had a single seizure since the surgery. She is back to her normal self and doing better than ever. Despite reliving history our positivity, resiliency, and strength carried us through.