Disclaimer: This is definitely my longest ever blog! I apologize for any redundancy, but I feel I need to keep Jaylyn's story alive in hopes that someone will finally hear us and see just how much the healthcare system needs to change for special needs children! It is also my outlet and not a cry for attention or sympathy, merely a vent. The only thing I look to gain from this is the unloading of my busy mind and to raise awareness.
When my older children were younger, we collectively went to a Family Practice. A one stop shop for routine medical care, vaccines, etc. I decided it was time to find my children their own pediatrician when one too many times I was told to take them to the ER for things such as asthma flare ups and pink eye because there were no openings. I was disappointed because I still see the doctor at the family practice myself, and find him to be superb across the board. It was the office dealings I had issue with. He himself was disappointed but understood and still often asks about them, gives them hugs and high fives when they accompany me for an appointment. I couldnt ask for a better, more personable doctor.
And so I found a pediatric practice that I found to be more than adequate for what I was looking for. If my kids were sick, they were seen in a more than reasonable time frame, and I found that even the nurse practitioners were on their game when it came to diagnoses and treatment for illness or injury. I was more than satisfied with them caring enough to call and follow up if my children were seen in the emergency room or admitted to the hospital.
So when I found out I was pregnant with Jaylyn, I had no reservations in taking her there as well once she was born. After all, despite the many red flags, I was assured all was well and "normal". So why then, if being so satisfied, would I dare switch pediatricians now you ask? In the 15 months that Jaylyn has been a patient there, it has been one thing after another and it has finally escalated to the point of switching for her safety, well being and yes even privacy.
Let me rewind for a moment to my last ultrasound appointment before delivering at 37 weeks. Not 1, not 2, but 3 ultrasound techs saw "something" that the doctor brushed off as "nothing to worry about" that turned out to be ventrculomegaly, and it was in fact noted on the ultrasound report as such. Of course I found this out many months later from an attorney reviewing my records to see if I had a case. The next day, I began contracting to the point of warranting going to the hospital. My pre admission blood work was done in anticipation of me being in labor. I had an alkaline phosphotase level of 1100. A definite red flag that something was wrong. The contractions had stopped and I was discharged with instructions to follow up with gastroenterology because that particular lab value COULD mean my gall bladder was acting up. Mind you, I had none of the symptoms of having anything wrong with my gall bladder and my immediate fear was that I possibly could be suffering the effects from the vinyl chloride exposure I was subjected to from a train derailment where I live. After all, liver cancer is one of the major things vinyl chloride causes. I received a call after 5pm that day instructing me to return to the hospital because the doctor that discharged me decided to consult the specialists that were following me and that particular lab value could very well be the early signs of placenta abruption which is an emergency. Cue the labor induction. All seemed to be ok until it was time to push. Jaylyn's heart had slowed and stopped. The doctor said we need to get this baby out now. And so I pushed with all my might and within 2 minutes, she was here! Along with a team of neonatologists to make sure she was ok. I noticed she was covered in bruises and petechae. Her feet were so bruised that they resembled an eggplant in color. I also noticed that the sclera of her right eye was filled with blood. All from such a rapid delivery, I was told and assured. This wasnt my first, or even second rodeo, but seemed plausible. I myself began having issues and required iv meds to stop the pain and bleeding, so Jaylyn was taken to the nursery until the pain meds wore off. Once I was ok, I had asked my nurse if I could have my baby. She began acting strange and quickly came out with a response I immediately saw as BS. She told me that Jaylyn was a little chilly after her bath and had to be taken to the special care nursery to be warmed up. Again, not my first rodeo, warmers are kept in the regular nursery too. With my heart in my throat, I walked down two long hallways to where the special care nursery was. It was a locked unit that required being buzzed in and a procedure to scrub prior to entering. Instead of being buzzed in, a nurse poked her head out the door and seemed annoyed that I was there. I felt as if I had showed up early to my own surprise birthday party and ruined the surprise. Something told me I wasnt going to like it anyway. She checked my bracelet, grabbed her scissors and had cut off the yellow bracelet that said " FALL RISK". She said they annoy her and are not necessary. Ummm yea they are if you have menieres disease you dummy....Ihad been symptom free and hadnt gotten dizzy or lost my balance in a while, so I kept my thoughts to myself. Jaylyn had ivs and the nurse was dipping a pacifier in a medication cup with a peeled back foil seal. The nurse told me Jaylyn was getting glucose because her blood sugar was low because she was not allowed to eat. " why not" I had asked. Her response was that I shouldn't have been there and that I should have waited for the doctor to talk to me. I gave her back the same attitude she was giving me. I told her what my nurse had told me and she just huffed and puffed her ass over to the phone to call the neonatologist to come and talk to me. I got devastating news at 4am and had noone to talk to. Noone at home answered the phone. I had to process that my daughter was diagnosed with something I never heard of and knew nothing about. Neonatal alloimmune thrombocytopenia. Hense all the bruising, petechae and her not being allowed to eat due to risk of bleeding. That wasnt the only place we had to worry about her bleeding. Her brain as well. An ultrasound was ordered, and in the meantime, so were transfusions of iv immunoglobulin and platelets. Makes me wonder now,if that ventrculomegaly that was brushed off as nothing was related (it was later discovered that it was). I also wondered if those elevated lab values were related (according to all of the research I have done, it also was) So all those red flags that this little pediatric lpn put together were missed by "experts". Jaylyn's platelets didnt respond satisfactorily to the transfusions and so she had to be transferred to a children's hospital. The brain ultrasound was found to be negative. After talking to other moms of nait babies and doing my own research, ultrasound often misses bleeds and mri is strongly recommended. The children's hospital said that was in the works, yet after a week of being there, Jaylyn recovering, we were discharged without it and the newborn hearing screen. We were discharged with the notion that Jaylyn would have no further issues. I was nervous regardless and waiting out the results of her follow up lab work was excruciating.
All seemed to be well. Eating, sleeping, pooping and peeing like newborn babies are expected. At around 5 or 6 weeks, I noticed a little difficulty dressing Jaylyn due to her right arm being a bit stiff. I also noticed that she seemed to have hand preference and that her right hand was always in a fist. To be on the safe side, we mentioned it to the pediatrician. I myself know that infants should not have a hand preference. That happens closer to age 18months to 2 years of age...unless something was wrong. It even states this on one of the most trusted of websites for medical information (CDC). I mentioned this at every appointment up until Jaylyn was 8 months old " wait and see", " hmmm thats strange", "its a newborn reflex" were what we were told. At around 3 to 4 months we noticed that when Jaylyn's eyes should have began to set normally, her right eye tended to wander out. We were sent to a pediatric opthomologist. At 4 months we also began to notice a size discrepancy in Jaylyn's legs.
Our intial appointment with the pediatrician regarding this issue led to everything but a flat out accusation that Jaylyn's leg somehow were broken. Xray was negative, cue the suspicion that it was lymphatic in nature and all of the specialists, tests, etc involved in ruling that out. Of course it turned out that the left leg was normal (not swollen) and that her right leg was under developed. YET no alarms are going off in anyones head but mine. Add in more and more missed milestones, concerns, and seizure like activity along with a reccomendation to call early intervention. Early intervention found that Jaylyn was "not delayed enough" and that was good enough for the pediatrician to run with the idea that Jaylyn was normal and I was nothing short of crazy. They seemed to placate me enough to refer me to neurology. The EEG was normal (of course because Jaylyn wasnt exhibiting seizure activity during the 20 minute test). However he did say that her delays were a concern and suggested a reevaluation by early intervention and thankfully the reevaluation and MRI results were timed perfectly and she was found eligible for physical therapy . I again begged and pleaded for them to put the 2 and 2 together that I had when Jaylyn was just a few weeks old. Considering her history of n.a.i.t. and everything on her right side being affected, I was sure she had had a stroke and/or cerebral palsy. A pediatrician in the practice that had never even seen Jaylyn had called me, gone over my months of concerns and actually listened to me and agreed that all of this had warranted a brain MRI months ago.
Mind you, as if all of this wasnt frustrating enough, I had received a few calls regarding another "Jaylyn Martinez" that not only was a male, but 12 years old with a completely different birthday. Hello patient privacy act that everyone signs? Are you there? I had also had a few encounters with the triage nurse and other staff refer to Jaylyn as "he" or "him" and often wondered how many times our information was shared with this other Jaylyn's mother. After the first time, I was assured it wouldn't happen again. Unfortunately, it had. Again and again. My only solace and this practices saving grace was that one doctor that had listened! And so the MRI was ordered. The results were so devastating, alarming, and complicated that a specialist had to be called to interpret it for the pediatrician. Not only had there been a missed bleed, a stroke, ventrculomegaly, but also 2 rare brain abnormalities. Schizencephaly and polymicrogyria and a bunch of other stuff Im still teying to comprehend. Im not going to get into great detail explaining all of the findings but as a result Jaylyn has epilepsy and cerebral palsy. And being a pediatric nurse that has worked exclusively with special needs children for the past 15 years, I know all too well what is in store.
Jaylyn's 1st cold led to an ear infection which led to antibiotics and allergic reaction to said antibiotics. She was put on another that had worked well. Cue the dreaded 15 month vaccines. Jaylyn immediately spiked a fever within 24 hours of receiving them. Stopped eating. Developed cold like symptoms and we were told it was just that. Thats right, I do not know my own child well enough to know that she went from eating everything that started with "F" and ended in "OOD" to absolutely nothing for a week straight. We made an appointment, "just a cold" but put on an antibiotic for an "ear infection ". I had asked if Jaylyn could be put on the one we knew had worked and that she wasnt allergic to. We were assured this one would be ok. Once we got to the the pharmacy, the pharmacist said he didnt fill it and had called the pediatrician thinking this was some sort of mistake. He informed me that the antibiotics prescribed had at least a 10% chance of causing the same reaction as the one she was allergic to. I called the pediatrician from the pharmacy and spoke to the nurse that had rudely replied with "the doctor still wants her to have it". The pharmacist shook his head and reluctantly filled it and said to make sure we have benadryl on hand, which we did. So status post over a week of continued fevers and "cold symptoms" we called the pediatrician again. I had asked to speak to triage. "Let me see if they are can take your call". A 3 hour back and forth phone event that led to being advised to take Jaylyn to the emergency room where it was determined that her symptoms were related to a reaction to the vaccines, but her ears looked fine. The next day Jaylyn began breaking out in a rash from the antibiotics so we stopped them, called the pediatrician and started her on benadryl. No follow up to check and see if she needed another, how she was, or anything of that sort. I was rather relieved that they put the final nail in the coffin of our relationship. After talking to the parents of patients of my own, I have found a practice that has experience with special needs children and the knowledge and bedside manner that should be of any pediatrician. My 11 year old was transferred as well since her 2 month on going ankle sprain may in fact be a broken bone. We are in the process of seeing specialists etc to make that determination.
Throughout all of this, life has continued to jip me of good karma. Not that I do good deeds for the purpose of getting something back in return, but we really could use a break! All of the illness, injuries, Jays surgery and job screwing him right before the holidays is too much! Jay was released to return to work after his surgery as of December 1st and we planned on playing catch up on the mounting bills and still having enough to give our kids a Christmas. "We will call you with your schedule" they say! And now they are waiting on someone elses departure in a week or two before putting him on the schedule. So how its looking, the biggest gift under our tree this year will be the gift of disappointment. I have never felt like such a failure to my family in my life! The demands of work, managing all of Jaylyn's appointments, therapies and care, household issues are taking its toll on my own health and emotions. I have put off my own appointments due to the countless appointments, copays and over the counter treatments for colds, pain, fevers, etc to the tune of what most people pay for rent a month. How could I possibly be in the holiday spirit? Even a song as light hearted as "I want a hippopotamus for Christmas " has me on the verge of tears. All of the "it will work out", "we will get through this" and "youre so strong" comments mean nothing when you know that youre failing your children. Yes they have a roof over their heads, food in their bellies, and clothes on their backs, but thats only because we are behind on so many other things to make that happen. I have done all I can to get out of my insurance plan that sucks up a third of my paycheck. I had emailed the head hancho and my pleas have been ignored. I have spent countless hours doing anything and everything I can to get much needed help but with Jay in limbo as to when he will return to work, we are stuck and ineligible for anything! Jaylyn is expected to be without health insurance for 3 months in order to receive NJ FamilyCare YET my 20 year old INSURED son was sent cards and a welcome letter without question. When I called to inquire, "I dont know how that happened". The system sucks and NEEDS TO CHANGE! Local politicians capable of making the much needed changes to the health care system for special needs children are only good for blowing sunshine up people's arses during election time because we all know children like Jaylyn grow up to be adults that cannot vote. The expendibles. The innocent victims of a corrupt world.
My mother's words resonate in my mind to just breathe and take 1 thing at a time. I wish it were that simple when youre getting hit with 5 things at a time, trying to feel better, doing the very un-nurse like thing of taking someone elses left over antibiotics because I can neither afford the time or money to get the care I need. I have too many people depending on me and it still doesnt seem to be good enough! I do not, nor am I looking for anyone to blame for Jaylyn's condition but there are some power points in both my prenatal care and her early months that have delayed her treatment and care. So in Mama bear fashion, I do intend to investigate possible causes such as my vinyl chloride exposure and the water contamination prior to, throughout and after my pregnancy as well as the many oversights by various medical professionals that were so blatant to me right away, and to others in hindsight.
