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Ok so I know I’ve been off-line for quite a bit but man I am not in no way shape or form going to even entertain the idea of being able to get caught up on everyone else!!! So you all get to be updated on me but please understand if I seem really out of the loop, because well I am. And sorry if you end up on the bad side of one of my Faux Pas’s!! I make them all the time even if I am in the loop!!:shock:
Good news #1
I have had my baby, It’s a Boy, born on Wednesday September 05, 2007 at 40 weeks 5 days. Named Khym Sean Tyler Mikail. Weighing in at 9lbs 7 ounces. and with stupidly good lungs!!! Owwie!! He is completely and perfectly healthy. well almost.Bad news #1
Khym had a stroke around the time of labour and delivery, this caused bleeding into the cavities of the brain that they call the Ventricles. Blood completely filled the Left Ventricle and half filled the right, this cause pressure in the brain. The pressure caused Seizures. When we were still in the hospital after he was born I kept telling the Nurses “He’s having Seizures” The kept saying “No no no, that’s just perfectly normal baby movements, nothing wrong with him” Sub text “you are first time parents and suffering from Parentanoia” (Parent Paranoia- Common to parents but most especially first timers who don’t know what’s normal or not) There in by because I had 5/6 medical professionals telling me that I was over reacting I forgot to mention this to the Dr. when she came to release me. However hindsight being 20/20 I believe that my poor little Khym was actually having a seizure when said Dr. was doing his initial exam, because at first he was having head-posturing seizures(Which are definitely far more noticeable in a newborn than the more advanced Grand-Mal, due to the fact it results in the baby seemingly able to hold their head up/in a position already) The Dr. had said (and I could see he was looking the way I eventually saw his seizures affecting him) “Oh look he’s so strong he’s already turning his head and holding it well enough I can’t turn it back” Even I know a newborn should not be able to hold it’s head up for a minute and a half and look in one direction and not move it’s head no matter how you turn him!!! So once it had progressed to the Grande-Mal it did look much like normal baby movements of their flailing their arms and legs, though the rapid and rhythmic eye movements still seemed wrong. 5 hours after release when he was having seizures every 2 hours my mother finally saw what we had seen, and agreed that that wasn’t normal, Khym is now almost 48 hours old, and so off we go to the Emergency room….
The emergency room was pretty busy and they also thought we were suffering from Parentanoia, in spite of the fact that my Mother was with us, and you would expect that some one who has raised at least one child them self and is over half a century old wouldn’t be so likely to do so. They came to put us in the Hallway to be looked over (probably to just brush u off and send us home) Just as he was starting his next seizure, I saw it coming and told the Nurse (who ignored me) and Khym realized it was coming, and started to cry, really really loudly. She knew she couldn’t just put us in the hallway so when back to talk to the charge Nurse. Still ignoring us that he was seizing. 😯 So we followed her back to the triage counter and tried to politely tell them he was seizing. That failed so my Male Yelled at them, the Charge Nurse looked over, then came over asked to see him, then went “Oh Shit, he is Seizing, follow me” and then she bloody well near ran around the corner and by the time we had made the 15 steps into a room there were 8 nurses and 4 Dr.’s working on him. I also scared the nurses due to the fact that I was step for step behind her after just having him. My baby was not going to be out of my sight and needed to know that I was near.Proceed to my next post….
Good news #2
Because we had been so attentive and got him in when he hadn’t been seizing that long we may have prevented him from serious damage. They say that there is little/to no brain damage, from either the stroke/Bleeding/pressure or from the seizures themselves Note when he had the seizure that they had finally seen and believed Khym was almost exactly 48 hours old, he’d been born at around 2:30am. And that since he was so young that any damage that it would probably all repair itself, and or he would end up being able to compensate for it so well no one would know the difference. And the only possible expected side effect was that the blood would clog the natural drainage tubes of the brain as it was being reabsorbed.
Bad news #2
Apparently Infantile seizures are so rare even his nurses in the NICU didn’t know what they were looking for!!! 😯 😯 (Thankfully we/I did, and they were willing to trust me) And we will have to go specifically to a pediatrician and to neurologists constantly.
Well, huge congrats on the baby. 😆 I’m glad that he is doing okay and hope that he has no lingering affects. You must have been terrified. *Hugs*
Not so huge congrats to the doctors and nurses that wouldn’t listen 😥
Oh wow….I hear so many stories of nurses who brush off the concerns of patients, and because they did so it resulted in serious injury or death! I am so glad that when they finally believed you your baby hadn’t suffered any brain damage. My heart almost stopped while reading this! It kinda scares me for when I have my baby.
Oh Lupin first off Congrats on having your baby. I’m sure he’s a cutie. I’m sorry that your doctors and nurses didn’t listen to you about your son having seizures. Those are scary to deal with.
My father has epilepsy that is drug controlled so fortunately my mother knew what seizures could be like. When I was about 18 months old I had a seizure and was on a phenobarbital until I was 4 or 5. I’ve never had any other seizures to this day.
Hopefully those seizures will be the last for your son. Good luck with everything!
Good news #3
The anti-seizure meds workBad news #4
The anti-seizure meds work….This is bad news because a seizure would have been far easier to recognize than what they call “Sunset eyes”.Bad news #5
The blood clogged the drainage tubes and his poor little brain was filling with fluid, He now had secondary Hydrocephalus.Bad news #6
At less than a month old Khym was rushed into emergency brain surgery, to place a shunt from his brain down into his belly.Bad news #7
They had had to recall a Neurosurgeon in from Calgary 6 driving hours away, and driving at that hour would be faster than flying. In order for him to have his surgery.Bad news #’s 8, 9, & 10 & I’m stopping counting…
they expect him to have his Shunt infected at least once in the first 3 months, and it will most likely be a permanent part of him, however he will have to keep going in constantly for surgeries to have it repositioned as he grows, and they will most likely never know why he had the stroke in the first place since it usually only ever happens to very small or premature babies(those under 37 weeks)!!! And he will now be seeing specialized Medical professionals every other week or so to monitor everything about him and his development. Oh and in between we have to keep going to and from the Public health nurses!! and they had to starve him twice in his first month of life!!Good news #4
After nearly being starved to death Khym has finally started putting on weight and growing!!:D 😀Good news # 5
I got a Rainbow Young for my birthday!!!Good News # 6 (for me at least 😈 )
My male has a new job which will soon allow us to high gear our Windstone Collections!!Umm I think that’s it…
Don’t you just love it when the professionals tell you you don’t know what you’re talking about? Grrr…
Glad you didn’t back down and made them listen, stubborn fools. And very glad your son is going to be okay. How scary. We just went through a life threatening situation with our daughter a month ago, and man, I tell you, don’t ever want to do that again.
*hugs* to you and yours.
Glad to hear from you.
Kyrin
Thanks Guys!!
And yeah the Pheno Barb is what Khym is taking, they hope to take him off of it when he’s 6 months.
Congrats to you Eaglefeathers I believe this is new news since I’ve been on last.
And to those of you who are currently waiting on your babies just remember that there is Parentanoia but if something really really really reads wrong to you listen to it!! And don’t forget to mention it to your Dr. when they are releasing you even if the Nurses have brushed it off. And besides this is more proof that Khym is my child he’s a freak of nature!! 😛 😛 😛 Everything should be fine for you!!
OMG! Lupin, congrats on your baby! Post pics when you can. I am so glad you were on top of things. FAR better to be laughed at for being paranoid than to ignore something and be right… eek. I know it’s tough on nurses, but one of mine told me she became far more sympathetic after having her own kid.
Love & best wishes to you and your family!
😀 Congrats on your baby.
Don’t despair and keep your streight up, stick to your guns when you think there is something wrong. Noting is stronger then a mother’s intuition.
I was at 29 weeks when my son was born. (Thanks to the nurse that let me have my contrations all day instaid of doing what she was suposed to do, contact the doctor at the first sign of my contraction starting over.) He had to stay 2 months in the incubator. That cause some after-effects. He was not holding his own bottle at the age of 6 months and he was nowhere near to sitting up. I got concerned and when to see his doctors. They said it he was just late but I did not beleive them. At 1 year of age he went back to the doctors and again I told them that he had not improved they started to get woried and sent me to a specialist, done test and it was confirmed at almost 2 years of age that my son would be hadicap probable for the rest of his life. He has something called: Quadri Paresie Spastique (I think it is spastic quadri-paresis)sorry I only know it in french. It is a form of celebral paralesy. At the age of two he had his first seizure boy did I panic inside, on the exterior I managed to stay calm (don’t ask me how) anyway I had never seen anyone do a seizure before yet I knew that was one. It lasted 30 minutes. By the time we arrived at the hospital he snaped out of it. he has been on medication ever since that day and yes he did have more. The longest was 40 minutes and he had stoped breathing. Scarry!
He has had several surgeries ever since he was born for different things.
Now he is in a wheelchair and goes to a normal hight school but in a special class. He is doing well and finaly learned to read and write. He is good at drawing even with his handicap (that surprised alot of people and doctors) I’m very proud of him. I am raising him on my own since he was a baby, he is now 18 years old. He goes to a foster home every second week-end to give us a break from each other. His father was never there for him and the guy I’m living with, that is suposed to be my boyfriend , is never here (gone every night and day that he as off), so I’m still alone with my son. But at this point I like it better that way.
I hope evrything will turn out fine for your baby and your famillyI don’t mean to sound sue happy but I WOULD SUE THE CRAP OUT OF EVERY ONE OF THOSE DOCTORS! How in the world could they miss what was going on with your baby?! That is just horrible that you had to go thru all the but I’m happy he came out so well from it.
dudette, that story made my heart acke, I am a sucker when I even hear about children suffering or being sick 😥 especially since I became a mother, you get all my symphaties, hope he gets well
Well, congratulations and hopefully you’ll get only good news, for you and your little one!
Big hugs!
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