I’m writing this is in stealth-mode because my little Avie J is fast asleep next to me in my bed tonight. We’re having a little impromptu sleep-over these next couple of days because my grams, who usually takes care of her, is staying out at the hospital with my little niece, Emma. The poor thing has been sick since Christmas Eve and her useless mother finally got around to making an appointment for her to see her pediatrician this morning. They did chest x-rays and found some spots on her lungs that the pediatrician–who’s also useless, by the way–initially took for pneumonia. He ran blood tests as well and her white blood cell count came back unusually high–well over 28,000–which was particularly concerning. Initially, they were going to transfer her by ambulance out to Albany Med, but my sister suggested they bring her out to Golisano’s Children’s Hospital in Syracuse instead–in part because it’s closer for us out here and also because the last few times that Emma’s had to be admitted to Albany Med, they’ve essentially gotten nowhere. One of the twinnies, Jakey, was sick back in November and had to be admitted to Golisano’s for a few days and the staff and doctors were exceptional–so we figured Emma would get far better treatment there than she probably would at Albany Med. So my grams–who has pretty much been Emma’s caregiver since she was born because, like I said, her mother is too selfish to give a damn about either of her children and therefore totally useless as a parent–rode out in the ambulance with Emma. My sister–who has always been especially close to Emma and sees/treats her like she’s one of her own kids–had us drop her off to be with my grams and Emma at the hospital on our way to get Ava from my aunt so we could bring her back with us. After she was seen in the emergency room at Golisano’s, they said they were admitting her for, at the very least, two or three days. The doctors there looked at her chest x-rays and voided the pediatrician’s initial diagnosis that it’s pneumonia due to the fact that the spots aren’t towards the bottom of her lung–as they normally present in pneumonia cases. Instead, the spots are towards the top of the lobes, signifying some different infection/problem altogether. Taking that finding into fact and her alarmingly high white blood cell count, they decided to bring Infectious Disease into the case. They’re running tests to try and find out what it is that she has, but so far, they still aren’t sure what kind of infection it is or if it’s something else entirely. They’ve given her a couple different antibiotics in the meantime and plan on doing another chest x-ray in the morning to see if her lungs have cleared up any. They also ran a new set of blood tests when she got to the ER at Golisano’s and found out that her hemoglobin was really low, meaning she’s anemic again…which meant she’d have to have another blood transfusion. It’s not the first bout she’s had with anemia. She’s been hospitalized twice in the past year and a half with severe anemia (at Albany Med both times). Neither her pediatrician or the doctors there could give us a definite explanation as for what’s causing the anemia. Prior to those instances when she was hospitalized, she’d been coughing up brown sputum that only after the blood tests saying she was anemic and her being admitted did they finally realize that it was actually blood that she was coughing up. They ran tests and did GI scopes and claimed it was some kind of esophageal reflux issue…but it was more of a guestimated diagnosis than a definite one. They merely observed her for a few days, then sent her on her way with a prescription for some kind of reflux medication…yet ANOTHER med to add to her already long list of medications. They didn’t really do anything…and they seemed just as in the dark about the cause of the blood loss and anemia as we are. Like I said, those doctors were pretty much useless.
The poor honey just can’t catch a break, I swear. From her premature birth and weighing in at a mere 3 lbs. 14 oz., she’s had to face struggle after struggle. Being a preemie, she had to spend the first month of her life in the hospital NICU. She had a umbillical hernia that caused a long delay in her mobile development because unlike most babies, she couldn’t be put down on the floor for the typical tummy-time. She also had to have surgery on her eye before she was even a year old. And that’s just to start! umbilical hernia aside, she’s had serious developmental delays, both physically and intellectually. She just turned 9 this past November, but developmentally, she’s on the level of a 4 or 5 year old. From the start, her pediatrician would blame her delayed development solely on the fact that she was born prematurely. Whenever we voiced one of concerns about it, he’d just tell us not to worry and that she’d eventually catch up in a few years. Then, when she was just over a year old, she had her first seizure. I can’t even tell you how terrifying that was for all of us. It was horrible. Unfortunately, it wasn’t a one-time occurrence as we’d hoped it would be. After that, she began having these sudden high fevers that, more often than not, were a precursor to another seizure. After the first few panicked-911-calling-emergency-room-visits for a seizure, the doctors basically told us there was no use in jumping to concern when she had a seizure because they claimed the seizures were nothing to worry about and that unless she was having a Grand Mal (really serious) seizure, there was really no point in us even calling 911 or bringing her to the ER because there was essentially nothing they could do for her. Her pediatrician basically told us the same thing. He told us they were febrile seizures (a type of seizure that’s accompanied and preceded by high fevers) and that it it wasn’t necessarily uncommon for young children to have them. He claimed that she would grow out of them on her own by the time she was 5. He was wrong, by the way. It wasn’t until she was two years old and WE demanded further testing and answers to the seizures and delays (she didn’t start walking until she was 3) that he finally did something. He ordered genetic testing, the results of which showed that she has a rare chromosomal disorder that while they don’t know a great deal about it yet, they have found it to be associated with developmental delays and epilepsy, among other medical problems. After that (she was almost 3 by then), she started the necessary therapy regimens (PT, OT, Speech) that should have been ordered long before that point, but weren’t because her dumb ass pediatrician didn’t know his ass from a hole in the ground, as the saying goes. If he hadn’t dismissed our concerns so easily and for so long, she might not be as developmentally delayed as she is now. But he was a doctor who, of course, thought he knew it all…only he didn’t have the first fucking clue (I apologize for the crude language, but it’s true!).
From there, she was put under the care of a whole slew of specialists. She’s got a neurosurgeon, cardiologist, endocrinologist, orthopedic specialist, ophthalmologist…well, you get the picture. It’s insane how many different doctors she has to see. They diagnosed her with epilepsy and she’s been on meds for that for well over 5 years now. She still has the occasional febrile seizure here and there and also what they call absence seizures where she’ll sort of zone out for a few minutes, but not as often these days, thankfully. It’s sad because at this point, we’ve gotten the seizure routine down pat. The moment she gets a fever, we immediately start her on a back-to-back regimen of Tylenol and Motrin and cool baths to bring the fever down. Usually we’ll wrap her in wet, cool towels or one of us will sit in the bath with her and try to get the cool bath to bring her temp down. No matter how proactive we are, it isn’t always successful and sometimes she’ll still have a seizure anyhow. My grams still freaks out each time she has one. I, on the other hand, have seen her have so many of them that I’m pretty much the only one that isn’t fazed by them and can therefore stay calm and level-headed about it. Which is why when Emma had one, my grams would usually call me down to help. Basically what I’ll end up having to do is to hold Emma and make sure she doesn’t stop breathing (she’s turned blue a couple of times–super scary that is, by the way) and track how long the seizure lasts…all the while my grams stands there silently freaking out, and phone at the ready in case we have to call 911.
Aside from the seizures, the poor thing is constantly getting sick because she has such a weakened immune system. If it’s not one thing it’s another. You don’t even want to know how thick her medical charts are…it’s that bad. And now she’s sick again with we don’t know what. And her good-for-nothing mother–where is she you might ask? Not in the hospital with Emma, that’s for sure. The bitch didn’t even bother to leave work and go with Emma once she found out she was being transferred out to Golisano’s. She didn’t go out after she got out of work either. She claims it’s because she called and only 2 people are allowed in the room with Emma at all times–and with both my sister there spending the night and my grams, she wouldn’t be allowed. That pissed me off two-fold. One, because while I realize my sister cares deeply for Emma and wants to be there for her–especially in times like this–she tends to forget that she has two children of her own to think about. Not that I mind taking care of the boys in her absence, but it’s the principle of it all. She’s not Emma’s mother. And by her taking charge and stepping in, she’s essentially allowing Emma’s actual mother to shirk on her motherly duties and responsibilities. I keep telling them that they need to stop making it so easy for her to get away with doing nothing. My grams has let her do her own thing for years now and it’s absolutely ridiculous. I get that my grandmother doesn’t care what she’s doing or where she is as long as the kids are home with her and she has them, but it’s not right. She needs to face the fact that she has responsibilities…and at this point, that’s only going to happen if they force her to. This instance, for example, my sister should have left for the night and come back home and she should have been told to go to the hospital to be with Emma. But that didn’t happen. She claims she’s going to come out after she gets out of work tomorrow, but I doubt that’ll happen. It’s New Year’s Eve and she has plans to go down to New York City with this new loser she’s been seeing…and she’s so much of a selfish bitch that just watch, she won’t cancel those plans. Hell no. It’s all about her and what she wants…to hell with what’s best for her kids or the fact that her CHILD is so sick that she’s been admitted to the hospital. She could care less. That’s her. That’s ALWAYS been her. Honestly, I think it’s absolutely pathetic. She shouldn’t even be allowed to keep these girls. My grams or my sister should have gone for custody of Emma and Ava years ago. They keep saying they’re going to…but they never do.
It’s unreal. Seriously.
Well, I should stop here. I’ve got a long day ahead of me with the boys AND Ava tomorrow.