Well, here we sit, AGAIN!!! Emmy Faith loves the hospital! HA! Monday she had kind of a rough day! She woke up to what seemed to be leg pain, every time I tugged on her legs for a diaper change, or to put her in her car seat she would literally flip out! Most of you know, Emmy never cries. EVER!! She is the happiest, easiest baby on the planet!! So, I was a little concerned. I had a Dr.'s appointment myself, so we went about our day, and she only seemed to cry when I touched her legs, but she had no other symptoms. For those of you that aren't sickle cell anemia experts, SC children have what are referred to as pain crises. This is the most common problem with this disease, and when I say pain, I don't mean ache, I mean these children get admitted for a intravenous morphine drip! It's bad! With that said, Emmy is only 4.5 months old, the only pain crisis that is typical at this age is dactylitis, which is swelling of the hands and feet. So, I kept watching for her hands and feet to swell, and they never did!! Well, at 7:30 pm Monday evening, I woke her up from her afternoon nap to find that she had a 102.5 temperature. UGH!!! You know what fever means, an automatic admission!!! So, I called Aflac, they called our children's hopsital to let them know we were on our way, and then our fun began!! They got her in immediately, and the IV team was actually in her room waiting on her, they got an IV started on the 2nd try, PRAISE THE LORD!!! Usually, it is a minimum of 8 tries! They got all of her blood cultures started, and then immediately started her IV antibiotics! WIthin 2 hours, we were admitted and in our room!! Gotta love that if you have to be here 5 times in 4 months, that at least you move through the hospital very quickly!! Sorry, trying to find the positives!!
By 4:30 am, we all decided the pain in her legs was unbearable for her, and they started her on Lortab, which seemed to help!! So, she started on Lortab every 6 hours, and seems to be doing well! Her doctors also decided that she was having tibia pain, which is unusual at 4.5 months old, like I said earlier usually it is pain in the hands and feet until the age of 1! I guess we are just lucky like that!
So, here we sit on Wednesday morning...yesterday, her labs were dropping some, so they were keeping an eye on that, she may need a blood transfusion today or sometime this week! Waiting on the doctor to come in and make that decision for us! Hoping we can hold off a little longer, a blood transfusion this early scares me, well, they scare me period! But, I know this is part of sickle cell, and that I better get used to it!! She has been sleeping a lot, and I am sure that has a lot to do with her pain meds, but she seems to be sleeping comfortably!! She is the best patient ever, she never cries, she gets a breathing treatment and her little nose cleaned out every 6 hours, and she is so BRAVE, no crying at all!! She didn't cry for her IV at all!! I think that is pretty impressive!!
So, anyway, that is what is goin' on with Miss Emmy!! She is hanging in there, but we are both ready to go home!!
Now, for the rest of when it rains, it POURS....Aidan had an MRI 3 weeks ago. As you know, he is epileptic. We had noticed a change in his seizure patterns, or so we thought!! When you have a child with epilepsy, I think any new behavior that is out of the ordinary immediately makes you wonder if his seizures are evolving or getting worse! So, he started having what we classified as a generalized seizure, a drop seizure to be exact, they started in March!! He would literally fall to the ground for no reason, he didn't trip, he just falls, and then he will urinate or defecate on himself, which he only does when he has a generalized seizure, typically a grand-mal! So, naturally, we called his neurologist, they got us in right away, and immediately they want to repeat an EEG and do a spinal MRI!! A SPINAL MRI? WHY? His brain causes seizures, not his SPINE?????? Well, they went onto inform us that she wanted to check and see if he had any spinal abnormalities, or even a tumor on his spine. I thought she was CRAZY!! Surely, if something was wrong with this child's spine, we would know it, right!!
His EEG was first, and as always, it was abnormal!! He still has epilepsy!! The MRI was scheduled for a few weeks later, and then we didn't get the results until YESTERDAY!!!
Mind you, I am in the hospital with Emmy, and frankly, I am a little overwhelmed with medical things as it it!! :( They call to inform me that is MRI is abnormal. Not only is it abnormal, but we need to see a neurosurgeon!! UGH!!! I don't like the word neurosurgeon in relation to my 5 1/2 year old son!!
So, I will keep you updated!! Waiting to hear the word from the neurosurgeon, from what we understand, he may need surgery to repair his spine, but I am not going to go into great detail, until we speak to the experts!!
Please just keep Emmy Faith and Aidan in your prayers!! I will give you more info as soon as I know! Thanks!!
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