Super Stella

A TinySuperhero’s story from a Super Mom’s perspective:

This girl is my hero. Before I ever had heard about TinySuperheroes, I had been calling Stella my hero. (Truth be told, it is because I overheard my mom say to Stella, “You are my hero,” while she lay next to Stella in the hospital bed one of the first nights).

Stella was 8 years old, and it was finally summer! We were having lots of fun. We took a few trips to the beach and a first-time trip for her to Busch Gardens. All the while, she was suffering from what we thought was her allergies, turned into a cold or possibly a sinus infection.

As her symptoms worsened and the fever didn’t go away, we began becoming more concerned. We went to the emergency room the first time shortly after our trip to Busch Gardens. She said she had a pain in her side, and she didn’t want to walk almost at all since we had gone to Busch Gardens, which was by this time 3 days later. Upon examination the doctor felt that she had strained herself on a roller coaster causing the side pain, and the walking for a long time would be the reason for the refusal to walk now. That night she began having severe leg pain which would continue each night (what the heck, we thought, growing pains now?) And, it was also the night the fever first showed up. About two weeks after that is when the fever was still raging and the side pain and lack of walking turned into no eating, no moving almost at all and sleeping for most of the day every day, hair loss, and a very disheartening state of mind. So, we decided to go back to the emergency room. During our second visit to the emergency room, we were given the news that they had a clear diagnosis now, she had enterovirus. We were advised that she could continue to have a fever for another few weeks and would potentially start vomiting and the muscle pains that were keeping her up screaming in the night and all the other symptoms were caused by the enterovirus.

After another two weeks passed, we were referred to an infectious disease doctor who was sure it was Epstein Barr. After those results came back negative and then another week the fever didn’t go away, we made one more trip to the ER. As we were packing up our home to prepare for hurricane Dorian to make landfall in Central Florida, at my husband’s urging, we decided we were going to go back to the emergency room. He, we, did not feel we could go another day with her in this condition, let alone ride out a hurricane. We arrived at the hospital and stated that this was our third trip to the emergency room at Nemour’s children’s hospital and that my child was not getting better, the fever was lasting all day long all night long, her mental state was declining, she refused to eat much of anything, she definitely would not walk, and that none of us had slept or smiled for quite some time by this point. We were desperate. We need help.

The doctor came in and examined her. They did some blood work, and he felt that she was dehydrated and that she had been suffering from a very severe case of “Florida allergies” which may have caused a bacterial infection. I asked him, “But why is she going bald, and why is her nose swollen or has a lump in it? (later the nose would be explained.) Why has she lost 10 lbs? Why is she not herself? Why does she whimper and cry but say nothing hurts?  How is that allergies?” It was decided that they would give her some fluids intravenously and check her levels again to see if the dehydration was solved, prescribe an antibiotic and treat her for allergies. After what felt like 12 hours had passed, (it was probably about 3), shift change had occurred and a new doctor walked in the room that we had never seen before.

The new doctor clicked a few times on the computer, looked at my daughter, asked me if her color looks right to me, and stated that he would like to admit her because he doesn’t like the way she looks. We were very confused… We were told it was allergies, we were told she was dehydrated, and now she is being admitted? We finally got up to our room and contacted our family, while still very confused as to what was going on. The next day, there were plans for testing to begin. The amount of blood they attempted to take from this small child’s body is extreme. It would be an extreme amount even for a healthy adult. She had already been suffering for so long, and now we watched her suffer as they attempted to get blood that her veins did not want to give. They tried and tried and tried and tried multiple times, only to either fail or get very small amounts. This 1 day deserves an entire chapter in our story, but it is too long for right now. Each time they would send the blood off for testing and come back with a new idea of something to take blood for. The infectious disease doctor came in and spoke with us and told us that we were looking at something called fever of unknown origin. After that doctor left the room, maybe 20 minutes later a woman doctor came in covered in the yellow gown and hat and told us that the child was in renal failure. We were so confused. my mother began to ask if they were sure they had the right patient’s results. The doctor at first argued, and said, “No one told you what was going on?” We replied, “No nobody told us anything.” The infectious disease doctor told us not to lose another 30 seconds of sleep over this and that everything was going to be okay. And now you’re telling us my baby is in renal failure? Nobody told us anything. After the doctor stopped, explained slowly, pointed out the blood work results and what the levels mean. They mean that her kidney function had declined by 50%, and that means renal failure. Through her thick accent and our pain, confusion and lack of sleep and worry, she tried to explain to us that there is some sort of inflammation causing the fever and causing the damage to the kidneys. The doctor kept saying it’s vasculitis, and we have to “find its last name.” We didn’t understand what that meant.

At some point, someone came in and said that they would be doing an ultrasound of Stella’s heart. After that test was performed, we were called into a conference room. Nobody wants to be called into a conference room related to their child’s health. A bunch of doctors that I did not know, my mom, (my dad stayed with Stella), and my husband all sat in the room with me while they tried to explain to us what was going on. They said that she has some aneurysms in her heart. They said she has a leak in her heart. They said that she is in renal failure, and she has vasculitis, but we don’t know what kind. Then they said that we’re moving her to the ICU and that we would be staying for a while. In total shock, we couldn’t ask all the questions. There were questions that we didn’t even know we had yet, nor did the doctors have the answers to most of the questions that we likely wanted to ask. Selfishly, we did ask them if she will have a normal life. One doctor, possibly the cardiologist, remarked that “considering you told us that she is a dancer, dancing several days a week, I don’t know about that, but there is a chance that she will be able to have a mostly normal life.” They said once we do the CT scan and see where all of the inflammation is, we will have a better answer. Of course we wanted to know if she was going to get her personality back. See, her mental state had declined so far over the course of the previous few weeks that we were very concerned that we had lost our Stella in spirit, her “Stella-ness.”

To add to it, the hospital was preparing  to enact its lockdown procedure for the pending hurricane, and we were advised that only one parent would be able to stay with her in ICU. Now we had to decide which one of us would stay and which one of us should go. If I am honest probably, neither one of us wanted to have to stay, and neither one of us wanted to have to go. Thankfully that night the lockdown was lifted before we had to make the decision, and we were both able to stay with her.

Our first night in the ICU was very scary and strange. Stella had never had any medical procedures done before this situation had occurred. She was about to be sedated, injected with radioactive dye and have a PICC line inserted. (The PICC was to make everything easier for her moving forward with the blood work and meds to be given). The time while she was under sedation and away from us out of the room while we waited for her to return was horrible. We were left with only our minds, but thank God we also had each other. When the doctor came back to the room, she told us that Stella’s brain looked perfect on the scan and there shouldn’t be any damage there. She said, “We don’t have any definitive answers right this moment, but we have this scan we need and the PICC line is in. So at least she shouldn’t have to struggle as much with the blood draws for the foreseeable future.” (Again another chapter or two later and we will be devoted to just the PICC line, affectionately, defiantly, named Fred).

The next day we were told that it would be best if she has a renal biopsy. It is not often recommended to have this procedure done, but considering the results they received from the lab along with the scan, it was indicated that this was the next step. They had narrowed down the diagnosis to a few possible things. After the biopsy we would have to wait 24 hours for the results to come back, which should give us the official diagnosis. The day the doctor came to the room and told us that what he had suspected it was (which was very rare for children to have) is what in fact Stella has. This vasculitis now has a last name. It is Wegener’s (except now they don’t call it that anymore.) The new clinical term for this disease is granulomatosis with polyangiitis. What a mouthful! On top of the fact that she had this horrible disease to contend with now, the aneurysms in her coronary arteries are not normally associated with vasculitis of this kind. (However, they do feel that it is related and caused by the same disease in her case). They told us that children don’t get this disease, people who are diagnosed with this specific disease are often older and already have been on dialysis. So, now we had an answer that we didn’t want.

This next thing I am about to say is very unpopular, and I feel guilty for thinking it or saying it, but it is real and I only share in hopes that another parent wouldn’t feel as shameful as me for feeling it… At some point during all this, I thought that as long as they didn’t come back and say it was cancer that I would be happy with the answer. I even tried to reason that whatever it is if it is not cancer, I will take it. So once cancer was ruled out earlier on in the diagnosis phase, we really thought that everything was going to be okay, and I feel guilty about that especially now realizing that there are things that are just as bad and worse. So now she has a lifelong condition that she has to live with and deal with after 9 years of living in perfect health with nothing but hope for the future. So now what? It is not cancer, so we can do this right? Being real again, another thought that I have still today that I feel guilty for having is; maybe it’s easier for kids who are born with a medical condition or had it when they were so young that they don’t remember what it was like before they had it. I am such a bad person, ugh, for even typing that. I don’t want to have to tell our perfectly healthy beautiful baby that after 9 years of blissful childhood she has to deal with this burden for the rest of her life…

The treatment began immediately right there in the ICU. They hit it hard and heavy with infusions one of the drugs they have to use is very similar to chemo therapy it was so terribly scary.

The day they told us we had to stay in the hospital was just as awful as the day they told us that we were able to leave. The nurses and doctors would not be at home with us to help us and guide us through each day, nor would the life saving equipment in the facility where we had lived the last 15 days. We were on our own with this Wegener’s guy, and we didn’t even like him! It has been an adjustment since we came back home on Sept 17th.

Recently, like a week or so ago, Stella showed me all over again why she is my hero. A few days before I heard of TinySuperheroes, Stella told me that she had been thinking about the time in the hospital and reflecting on the weeks we spent there. She remarked that maybe it wasn’t so bad being in the hospital. I explained to her that it was bad, and she’s allowed to feel that it was bad. She explained to me though, “Mommy, I got to spend every single day with you and Daddy and Mommom (my mom), and I made a lot of new friends who are grown-ups.” She told me, “and now Mommy, it’s a new year already, and I feel better now.” At that moment I realized even though I already knew she was stronger than me, she was certainly exponentially stronger than anyone I had ever met. Because at 9 years old, having to stare down the face of a lifelong disease and the restrictions that have been placed on her and the things that have been taken away from her (like dance and roller coasters, two of her passions,) she, despite all of that, decided to choose joy! She was going to power through and be strong and brave and fearless like I knew she was, only now I am almost certain she knows it too! I hope that you also will find joy in reading the little pieces of our story that I have and will share as posts and comments on our Facebook page “BoogieFever.” Thanks to my mom for seeing through the fog and giving me the most powerful advice while I was in one of my worst moments. We have embarked on a journey to find our purpose, to learn what it is that God is trying to use us for and how we can give Him the glory through this terrible situation.

 

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