I could tell that Mireya was not feeling her best today, she sounded stuffy and had a bit of a runny nose. Overnight she got up, because she was hot, and jumped in the bed with us. She felt a bit warm, but her temperature was normal. Today she’s been a bit out of sorts and very fatigued. It is not uncommon for her to take a nap, but today she stayed in the bed for several hours and when she woke up she complained that her throat and head were both hurting. I took her temperature and she had a low grade fever. I know how these things can shift on a dime and it’s normally on a Friday about five minutes before the office is closing for the weekend, so I decided to call the pediatrician’s office to have her seen. Typically I also call Hemoc to keep them abreast of any concerns or issues with Mireya’s health, and they have been working together to ensure Mireya’s care is well managed between both offices. After speaking with the medical team at Hemo Clinic, we were asked to take Mireya to the Emergency Room. The biggest concern was that she had just come off of an antibiotic days ago and really should not be exhibiting signs of an infection. Her fever was just below the threshold of 100.4, but they wanted to take labs and ensure we were not dealing with any issues associated with her line.
We’ve not been down to the VCU E/R since just before Mireya’s transplant and as a result we were there for about 24 days. I told Mireya we were going to the hospital’s Emergency Room and in that moment, she very calmly told me I needed to pack her some pajamas and make sure I had an outfit for her in the morning. She also asked me what room she was going to live in. I laughed to myself because she easily went back to our ‘routine’, but it also made me a bit sad that the ‘routine’ was so engrained in her mind. I didn’t think we needed to be concerned about an overnight stay, but I pulled together out hosptial bag anyway. We used to keep that thing packed, so we could just add a few essentials and hit the road when instructed. It seemed like everyone had a ‘moment’ of reliving the impact of Reya’s illness over this last year. Jalen was concerned for his sister and curious as to when she would be back. Tears filled Makinley’s eyes as she asked me not to leave her. We are at VCU Children’s Hospital in clinic, several times a month, but this ride felt different. I started to have feelings of anxiety thinking back to the many times we made this trek and all the nights we stayed there waiting and wondering. Each time we arrived we were admitted, but I knew this time would be different. She probably had a cold or virus and once they saw her we’d be examined and on our way home.
When we arrived it looked like there was a convention for sick children going on. I’d never seen so many people there. Fortunately they were expecting us so we were taken back to a room as soon as we arrived. The intake coordinator told me whatever you do, don’t take that mask off of her. Tis the season. It’s that time of year that breeds, coughs, colds and infections that can very easily become ‘more than you bargained for’ madness. We did all the preliminary tests, cultures, checks and balances. I had given Mireya Tylenol before we left, so she was no longer registering a temperature. Negative for strep, no fever, counts look consistent to where they were when we were last in clinic. I had not heard Mireya cough in over a week. When the Dr. asked about a cough the answer was no, but within minutes of us being there, out of nowhere she begins with a pretty rough sounding cough. A chest x-ray was ordered and it showed a pretty significant lung infection. What I heard was ‘infection in her line’ and I was immediately devastated. I’m the one that primarily does her dressing changes and line care. I was so upset that somehow a infection was introduced through her line. It is not uncommon that a infection can occur in the line, but we’ve avoided any issues for over 9 months now. Roll back the tape…oh you said ‘infection in her lung’ ok I can now lay aside my guilt, but what does this mean? It meant we would likely be admitted to the hospital so Mireya could be treated with antibiotics via her line and be monitored for progress. We had been there for several hours before Mireya asked to put on her pajamas. The attending physician did his assessment and expressed surprise that Mireya was not more visibly ill or on edge based on how the x-ray looked. They administered the first dose of her antibiotic and within minutes she starting hollering that she was itching. We’d had this experience while on the Transplant Unit. They quickly gave her a dose of Benadryl intravenously and within about 10 minutes she was resting peacefully. Through the night, Quentin and I did the ‘wonder #TeamBolton powers activate’ switchroo. Jalen and Makinley were super excited to see Mommy at home the next morning.
Mireya was moved up to the 7th floor for treatment. Once they realized she was post transplant, they were a few order changes to ensure she was not on the Main Floor with so many sick little ones and that she was not sharing a room or bathroom. A few of the Nurses and Care Partners remembered Mireya’s sweet face. They had to connect the diagnosis and chemotherapy dots when didn’t see all that hair I was usually brushing or pulling back, but were happy to know that she had been doing well overall since we were last there. Child Life stopped by, remembering that Mireya loved everything princess, they brought her a doll and some awesome activities to do while she was there. I heart the Child Life Center. They bring smiles to the faces of so many children whether they are there for the short or longer term. During rounds we discussed plans with the Hemoc team for Mireya. She has been placed on a super nuclear antibiotic and if there was no fever within 24 hours she could be discharged. The fever never resurfaced, but I thank the Lord for that slight elevation in temperature because overall, that was the indicator of the underlying issue. One of the greatest exchanges during that conversation was that Mireya is cured!!! There is no evidence of Aplastic Anemia and at this point she is simply being treated as a transplant patient. Glory to Glory to Glory to God. We’ll continue the course of care for the next five months at which time we should be released from care and only have to come back annually to complete bloodwork and counts.
The Nurses remarked on how awesome and easy Mireya is as a patient. We’ve heard this many times before and we’ve said it before, God knew which child had the strength to bear this. Despite the circumstances and not feeling her best some days, she’s still manages to be a joy. We found ourselves back in a familiar situation, but you can’t keep a Warrior Princess down and you can’t keep a family prayed for my many, solely relying on the will of God down either. God’s love and grace continues to keep us. The prayers of the righteous are powerful and effective. Thank you for your continued thoughts and prayers.