So, I finally started my blog and can I be honest? I have no clue what the hell I am doing. I did not even know how to navigate back to my blog to try and figure this crap out. I am certain I will get the hang of it eventually. Until I do, bear with me, laugh at me, but subscribe and follow along. Join me on this oh so fantastic voyage called life. As time evolves, so will my blog performance. For now, you just need a good sense of humor, about 2-4 minutes of time, perhaps a glass of wine if you are like me, and you are ready to sit down for LOCTAILS AND MOMOSAS. Random musings of your newly discovered nurse and mommy. Oh, and I have also recently embarked on a loc journey. For those that already know exactly what I mean, carry on. For those that have no clue what the hell I am talking about, I will explain later. xoxoBESOS
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Honey, why did you do that? What did it feel like before you did it? How do you feel now? These are questions I started asking Sydney back in June when I first noticed that she was exhibiting abnormal movements and behavior. Her eyes would VERY momentarily fixate on a spot, she would slightly tilt her head down and then came a head/shoulder/upper body jerk. It looked like a tic, which was initially what I thought they were. At first, I just watched her doing it. It was intermittent at best, but then it rapidly increased in frequency. By the end of June, she was doing it almost all day. We went in to see her PCP and based on one of the videos we had captured of the activity, her PCP referred us to neurology. Because of the long wait to get in to see a neurologist, her PCP went ahead and ordered an EEG exam because she was slightly concerned about some eye movement she saw in one of the videos we captured. She told us that it was more likely to be tics than anything, but she was not 100% convinced and did not want the wait to get in to see neurology to delay figuring this out. The EEG was abnormal. ABNORMAL. To be honest, I was not expecting this. At all. I was prepared to go in and be told her EEG was normal and that Sydney was experiencing some random tics (that can still be problematic but that would resolve on their own). And it wasn’t that at all.
Fast forward to going to see a neurologist in the Texas Children’s Hospital (TCH) system. We were fortunate enough to get in to see a neurologist right after her first 45 minute EEG. By this time her abnormal movements and behaviors had decreased dramatically and she was hardly having any of her staring spells. We saw the neurologist, we showed her the videos we captured on the phone, and she took a detailed history. After all was said and done, the neurologist told us, “I probably wouldn’t have even ordered an EEG based on what I am seeing and hearing today.” While I understood what she was trying to say, that statement really irritated me. She also told me that “you or I could be walking around with an abnormal EEG.” Again, I really did understand what she was getting at but her delivery was insensitive and unappreciated. I was too annoyed at the time, but I should have asked her to tell me what the exact incidence of “false abnormal” EEGs is worldwide and in her practice. But regardless of what she “would have done,” we were beyond that. An EEG had been done and it was abnormal…so it needs to be addressed. *insert eye roll here* The neurologist ordered an MRI and told us based on the results of the MRI we would need to start anti-seizure medication after seeing the results. Fast forward (because I am trying to get this all in for you guys) and the MRI was completed and we were told it was negative/normal. When I called to follow up with her neurologist about starting medication, she told us that she did not think medication was required and again repeated that “anyone could be walking around with an abnormal EEG and not know it.” I am particularly annoyed at this point because in her office she said that we would need to start medications if the MRI did not show anything and now I was getting a different story. She also said we would need to have a 24 hour or longer EEG. So, TCH scheduled her for their first available inpatient EEG…..January 2020. There is not an eye roll significant enough to convey how dismayed and annoyed I was at this broken system. I just want to know if the ordering neurologist would be willing to wait 6 months to find out if her child was having seizures or not. Somehow, I kind of doubt it. Remember, people…I am a nurse. I work in this broken system and it is heartbreaking. When I tell my patients I can relate….I mean it.
Because in the ridiculous delay in treatment through TCH, I decided to see another doctor through Memorial Hermann/Univ or Texas System (MH/UT). I found an epileptologist, had an appointment within a week and an inpatient EEG was performed at Children’s Memorial Hermann within a 2 week time frame.
Fast foward more. The in-hospital 24 hour EEG performed was abnormal. There was that part of me that hoped the first neurologist was right…that the initial EEG was a fluke and this one would be normal. Not the case. The epileptologist was ready to start medication based on her history, symptoms, and EEG. I was not ready to start medication. I am not anti-medication, but I do not take starting anti-seizure medications lightly. I have seen the side effects of these medications. I want to make sure if we start, we are starting for the right reasons, with a game plan in mind and not just starting to figure it out as we go along. I cannot and will not gamble with my baby’s health that way. The epileptologist with MH/UT was extremely patient and understanding and she told me she understood my hesitation with not wanting to start medication. She ordered a 72 hour ambulatory EEG which meant the EEG would be done with video monitoring at our home. More stuff for Sydney to get hooked up to. YAY. NOT! She was not going to be happy when she found this out. The EEG was set up, completed and we followed up with her epileptologist. The EEG was abnormal. AGAIN. 3 strikes, Erin. 3 STRIKES…YOU ARE OUT. No more denial. No more pretending this is not happening or that this is a mistake. It is happening, so buckle down and prepare to deal with it. This is my pep talk to myself. I feel sick to my stomach…not because it is something life shattering. Her life will continue and she will go and be great. But because there’s a new world of unknown that I have to try to navigate. Because my daughter will now have to deal with things she would not have had to deal with otherwise. Just disappointed. But I am always SO encouraged by my baby’s resilient spirit. For everything she has gone through, she is the toughest little cookie. She has handled everything so well. Perfect, no. But with as much grace as one can expect from a 4 year old.
So, here we are. 3 abnormal EEGs in the process, one negative MRI and a diagnosis of epilepsy. She has most of her abnormal discharges coming from her right occipital lobe, but also has abnormal firing midline frontal lobe. The doctor suggests she is having complex partial seizures also known as focal seizures. The video monitoring has not been able to be correlated with certainty because she did not have any of her abnormal behaviors during her EEGs. But based on other things we have reported her to be doing, the doctor feels strongly that she is likely actively seizing and we need to start medications. And I STILL do not want to start her on meds. I am struggling with medicating my child. I know it is something I have to get over. I want to see another epileptologist to confirm that they would initiate the same medication, but I would also like to further explore causation. I have SO many questions, but what I don’t have is time. I don’t know if my delay in starting medication will cause more harm than good. Right about now, I don’t know much at all. I’m just doing what anybody else would do and that’s hang in there as positively and best as I can.
I am sharing Sydney’s story because I know others out there can relate. I searched endlessly for stories like hers. So I could compare her story. So I could see if something else experienced the same things. To find other experiences with medications. I searched because it helps to know you are not alone. Although at times, it can feel like a big bottomless pit of loneliness…
Over the course of 2018, there were multiple times Sydney required the use of a rescue inhaler for some wheezing. It was periodic, but Sydney’s PCP gave us a heads up that if she reached a certain number of occurrences requiring the rescue inhaler, a diagnosis of asthma would be appropriate.
Sometime in early 2018, a few months before Sydney turned 3 years old, I noticed she had started to snore. No biggie, right? The snoring intensified over time and by the time Sydney turned 3, she literally sounded like a grown man snoring when she slept. It was insane and we would laugh and joke about it quite a bit. My husband has severe sleep apnea and her snore decibel rivaled his. LOL. I mentioned it to her PCP at her 3yr well visit, but she was not concerned. She asked me if I had noted any apneic periods (which I had not at that time). She told me to continue to monitor and let her know if it worsened or she developed apnea. Christmas 2018 we were in the Emergency room for some respiratory issues. It was at that time that I first saw signs of apnea. I remember being so frustrated in the ER. My baby could barely breathe, was having apnea, and the Dr is telling me she sounded normal. I literally took video of the noises she was making while she slept and played it back for him and said to him, “I just want to be crystal clear; you are telling me THIS sounds normal to you?” After this, he turns to me and asks, “do you want me to give her a nebulizer treatment?” I’m looking at dude like he’s flipped his shit. Do “I” want you to give her one? No, what I want you to do is tell me wtf your medical expertise believes she needs. I’m annoyed and I am a nurse. Some providers need to do better. I often feel so bad for patients who go in seeking care and have absolutely zero idea what questions to ask, so they end up missing on our scores of information or not getting what they need because certain professionals do the bare minimum. I’m getting off track, so let me step off that soap box real quick (you’ll find I do that quite often, I am a work in progress).
We took Sydney in to see her PCP in January 2019 and reported the most recent ER visit requiring rescue inhaler therapy and the new onset sleep apnea. Sydney was diagnosed with asthma and referred to an ENT. We went to the ENT and SURPRISE (not really), her adenoids were HUGE. The specialist was shocked at how enlarged they were. Her airway was extremely obstructed due to their size. Surgery was scheduled and she had her adenoids removed in February 2019. She handled it like a champion. She did so great and I was extremely proud of her. After the surgery the snoring stopped and she rested a lot more comfortably. For a few months, that is.
Her asthma was another story. Between January and May, I estimate we were probably in urgent care, her PCP’s office, or the ER a total of no less than 10-12 times due to asthma exacerbations. So, in May, she as placed on a twice daily maintenance inhaler (QVAR) for better asthma control. She has responded nicely to the therapy and it has cut down on the number of dr’s visits we have had to make.
In April 2019, we noticed that the sleep apnea had returned. It was not as prevalent as before her surgery, but she was having some periodic moments which concerned me. Back to the ENT we went and he scheduled us for a sleep evaluation. The sleep study is scheduled for next month, so we should have more information then.
So, Sydney, my sweet sweet love, I am going to need you to get that airway together baby. We can’t have sleep apnea and asthma lol. Momma needs to not be worried about you breathing all the time. Sheesh little girl. To her credit, she has handled this all like a champ. She takes her inhaler like a champ and even goes to rinse after her daily steroid inhaler without me having to tell her to do it. She knows how to put together her rescue inhaler and spacer on her own and administer her rescue puffs as well. She knows to shake the rescue inhaler but not shake the steroid inhaler….her absorption of all this information is amazing to me at just 4 years old. I probably do not give 4 year olds enough credit. She is amazing and you would never know she struggles sometime just to breathe, because this child is ALWAYS on 100. ALWAYS and asthma does not stop that. She may be sucking wind, but best believe she’s sucking wind while she’s on the move. LOL. And for resilience and great attitude, I am grateful.
My name is Erin. My name is Erin and my plate is full. My cup runneth over is an understatement in my case. I honestly do not even know where to start with my chaos, so just bear with me. I am going to do the best I can to make it all make sense. I am new to blogging, so I am sure we will go through growing pains together. The truth of the matter is that sometimes I feel bad when I want to complain because there are so many people out there that have it way worse than me. What I am coming to realize and accept, though, is that, while my suffering may be small in comparison, it is still my story to tell. I am allowed to feel. I am allowed to have my moments. I do not allow myself to wallow or stay down, but it really can get to the point where you feel stretched beyond capacity. 2019 has been a year full of stretched beyond capacity.
I. AM. SPENT.
Why am I here? I am here to share. I am here to help. I am here to be an example. I am here to vent. I am here to be a resource, a shoulder. I am here to unload my frustration to anybody kind enough to to listen (read). I know, quite possibly, that no one may be reading at all, but sometimes just saying something out loud lifts a huge weight and provides much needed relief. THAT is why I am here.
What do I do? I have been a registered nurse for almost a decade. It is a 2nd career. I was a pharmaceutical sales representative in a former life. I am currently in school for my Master’s Degree in Nursing, which I should be earning in the Winter of 2020. This past Summer 2019, I earned my Bachelor’s degree in Nursing and I will be earning my Associate’s degree in Spanish in December 2019. So, I currently hold a Bachelor’s in Biology, an Associate’s in Nursing, a Bachelor’s in Nursing, and soon to be an Associate’s in Spanish with more degrees on tap. Yea, so I really don’t love school, despite what it appears. HAHA. I am over school; however, I am committed to be in it until I complete my Doctorate degree in Nursing. Oh yeah, I work too. I am a part time PACU nurse and full time caregiver for my husband.
What’s my story? I am married to an amazing man. When you talk about good people….genuine, salt of the earth, good people…he is who you’re talking about. He is a retired combat veteran of the US ARMY after serving over 25 years. He suffers from debilitating PTSD and a host of physical issues that prevent him from living life the same way a lot of us do, but he makes the best out of the hand he was dealt. We have a 4 year old daughter who is the center of my entire world. When I tell you, she is my everything…my goodness, sometimes I just look at her and get overwhelmed by the amount of love I feel. There are other times I look at her and wonder who replaced my sweet angel with the Tazmanian Devil. You get what you get. Haha. I am just trying to figure this mom thing out. So, I started this blog a while back because I wanted to talk about mom life and my locs, thus the name “loctails and momosas.” Life got in the way and I neglected doing anything with blogging. Fastforward to now and we have been dealing with some serious medical issues that have been causing me a great deal of unrest, conflict, and turmoil. I am hopeful that sharing my story will help anyone else out there going through the same or similar. Sometimes it helps to hear and feel you are not alone.