He also insisted on a 3D baseball cake!
That he got I managed to jungle that in somehow, don't' ask I have no idea.
I don't' even remember doing it really..
2 days after his party he had a very lengthy type of generalized type of seizure, once I realized what was going on and had 2 drs on the phone, yelled for a neighbor to help and had to get rid of all the kids that were in my backyard, call 911 and stay with the DR s on the phone telling me what to do and not do... while waiting for 911 response to show up. When the fire Dept & ENT showed up he was just coming out of it and becoming semi cautious, thank God it was well into 10-15 minutes by then at least! It seemed like ALOT longer....
the DR also sent him home with an EEG attached to him for the entire week...He's had way to much seizure activity and the machines battery packs kept running out within hours.. I guess apparently he's been having clusters of them 50-100 per day which we have no way of catching.. How could anyone.. (still beating myself about that one)\
I did managed to get these socks done for him, which HE LOVES! He wants to wear them all the time. Pattern from Vintage Socks Child's French Sock, I used Trekking XXL size 0 needles.
Now he cant' wear socks without shoes on at all because it can create static electricity and give his brain shocks...
The DRs don't' understand and seem to think it's another form of epilepsy then originally diagnosed with back in March of this year.. It's definitely not an easy one to deal with and also effecting his entire brain now not just partial as I was told in the past.
Not sure how to treat yet eitehr.. I'm so frustrated and have had to deal with the school NOT meeting his needs and saying he shouldn't be in school, even though the DR wants him to be.. So The superintendent has allowed me to be his shadow in school because they don't want the responsibility or liability of him while in school, so now I have no time in my life for anything else...
EDITED TO ADD:on top of this on Friday late morning I had to leave the school for another emergency with my niece She went in for a routine surgery like I had last year on sinus's and deviations of her nose.. well after they brought her to the OR her mom left for a while, the DR said about 4 hours or so.. We never expected after she was put under for anything to go wrong..Well after about 1/2hour to an hour into getting her asleep and preped in the OR,etc. They tried several times to incubate her but totally unsuccessfully. Then did an immediate pedi scope etc.. (she's 24 y/o) and still unsuccessful so they DR couldn't go forward with her surgery as planned and called immediately.. Well they believe that her tracheal is smaller then the inside of a straw..Normally it should be about the size of your thumb... Extremely narrow and very serious., She was moved to the ICU unit which I seen her between leaving the OR recovery room and before getting up to the ICU.. I walked with her, she tried to talk to ask about my son... She's so sweet but I was more concerned about her at the moment..
I'm helping her mom to get her up to the Boston area hospitals and the appropriate care and treatment plan. Possible totally reconstructible surgery with prosthetic trachea..or whatever they recommend but most likely not a good candidate for any stents ..All her life the DR keeps getting on her about her breathing that it's Asthma.. Now the hosptial is convinced that she probably doesn't have asthma yes on allergies ...
Also that anyone in the family that has been diagnosed with Asthma, premature at birth, underdeveloped lungs at birth, hmm oh and RSV an an infant as well would all be reason for this problem or even a cogentital birth defect.
Hmm yep my son will get reevaluated as soon as we get through the next few weeks with the seizures again and back to a normal dull roar around here. He was a premie, RSV, immature lungs at 40% at birth, has moderate to sever asthma...
She's out of ICU and home now on all liquid medications, including antibiotics pending further treatment plan until then she get afford to get ill.. Tough time of year with that one...
All and all Today has been a better day for all of the family.. Now to educate ourselves before all the appointments & meetings start up this week.
6 comments:
Aren't they legally obligated to provide whatever services he needs, including his own nurse?
Good luck. You have a lot to deal with, right now. I hope they figure things out with your son soon. :)
I would think the school system is legally required to meet all of his needs. Did you get one of those parents' rights handouts? I think they're on line at the state DOE website. You and your family are in my thoughts. What a time.
I'm so sorry! I hope they figure out for certain what is going on with him. That's the worst, the not being sure... Thinking of you and your son, your niece... hang in there!!
I am so sorry to hear about your son and neice. I will say some prayers for them.
This is just scary. I'll be thinking of your son and your niece and hoping and praying that they feel better soon!
If he's been having that many seizures that were too small to be noticed, it's a good thing the DR had the presence of mind to send him home with the EEG device! That's the only way they'll ever figure out what's going on, by keeping a constant eye on him and not giving up until they've figured it out.
I see you too have had more than your share of medical scares lately. I do hope that all will go well and you will get the answers you need quickly. How frightening, for both you and your son. I also wish the best for your dear neice. Best wishes to all of you.
Take care. :)
Post a Comment