Sunday, May 06, 2007

Some updates

First I'd like to thank everyone for their concern and the supporting comments left on the previous post. Much appreciate all the support prayers & well wishes.. Certainly am becoming a true believer of prayers!! It's sad but nice to read..Of course I'd love to call you Amy or Mandy.. I do have free call plan on my home when... When I'm home for a conversation. feel free to email me!

Well it's been a while since I've been able to sit at the computer for anything. this is breif on what my life has been, To say the very least I've been HIGHLY stressed to say the very least not sure if I'm coming or going half the time, walking around in a trance yes sir no sir state and can't even remember what yarn/fiber feel like anymore..
My sons EEG went ok. I got an immediate call from the neurologist to tell me that in fact yes he has a seizure disorder and that is effecting his entire brain more so on one side then the other. It wouldn't be surprising to see a few different types of seizures based on the findings and we're scheduled to have a MRI on Sunday Mothers May 12th to see if theirs any structural damages. He has been started on anti seizure medicine twice a day to prevent future occurances. Now the other thing is that the type of seizures he's been experience that have been witnesses by both his pediatrician and myself and a few others are not consistent with his diagnosis and the DR has no explanation or answers for this. We are going to be having a second opinion during the summer with a completely different set of eyes.

Over the past several weeks both my younger children have been blue.. My little girl got very DK blue through her wrists, hands, fingers, and my son's mouth face chin.. I almost broke down at the pediatricians office both my little ones looked like smurfs and freaking me out!! The DR kinda laughed a little to lighten up the situation for me, made me feel so much better and told me exactly why...phewwww! The feeling so helpless and seeing them like that has to be the absolutely one of the worst feelings a mother can experience... My daughters heart rate was racing because the heart had to pump more and harder to keep the flow of oxygen going though her body. She was put on antibiotics and back to school. My son on the another hand has asthma flare ups so badly that the combination of drugs hasn't' been to effective, he turned blue 3 or 4 times since my last post at least anyway that I could tell maybe more grey at times as well. He's out of the woods with the asthma still on very high dosages for a 5 y.o double of what I'd be using. Steriod shots daily has helped tremendously!! Hate them but what a wodner drug for him. only 3 hospital stays over the past month or two.. Of course he also developed phenomena & croup 3 times as well, virus's etc. Non specific viruses I can't stand..
My son has been in/out of the hospital for sometime now. He's been currently sick with all kinds of issues and difficult to treat
Now I'm questioning c-diff (because of all the different antibiotics he's been on/off the past couple months) he's been at the hospital this past week or so, my DH came to relief me yesterday afternoon and is still with him.. Thank God I needed a break, certainly LONG overdue!. Poor little guy is so petheitc too with the IV and getting blood work all the time. He's been hanging in their like a tropper though. He wants to come home so badly....He's lost about 7 pounds over the past couple weeks since not eating alot of getting his nutrition though the Ivs.
My daughter had emergency surgery on her tonsils & adnoise because in result of the racing heart rate and blueness she was quickly becoming septic because of her tonsils....The DR & OR nurses couldn't believe how LARGE they actually were could tell from examinations . they we're alot larger then golf balls they kept telling us and on the septic scale or something #2.....She's home resting comfortably, SO I had enjoyed a nice quiet evening with her last night and sleeping in my bed.. oh WOW!!! The little things you miss....!! WOOHOO! a few days ago at a different hospital about 45-an hour away from each other (of course the way) It's been difficult to be at both hospitals, since both kids keep whining for mommy all the time. and we've had my 19 y/o daughter around alot more helping so we can trade places with the little ones being alone at any given time.
another HUGE worry is the thousands of dollars that unexpectedly are needed for co-payments, scripts, not to mention the bills that will be rolling in soon!!


When my son comes home we have so many appointments to try to keep up with in between hospital visits that my life has been totally insane.. Of course my daughters follow ups. My daughters will be home for the next couple weeks from school. Still on frozen pops will be graduating to ice cream later today or tomorrow, she's still having difficulty swallowing. She's also a trooper! With our son the DR did mention that their been be a question of an un-operable brain tumor on the MRI which wouldn't be too surprising but treating systems and prevention is the key to have him live a normal kids life.. Now how is that normal?? Poor kids doesn't have a clue and doesn't remember any episodes.... I guess from the DR we should be seeing some stroke like symptoms if they last more then 2-3 minutes to get immediate medical attention.. I guess it's time to make nicey nice with the fire dept......The fire chief did tell me to make sure we're all certified in CPR & first -aid which I am and my oldest daughter is. DH learned over 20 years ago in the service and thinks thats good enough...errrr! He's also still in some denial too according to my mil. I even had the DR put everything in writing for him too...errrr! Frustrating and a whole other story another time... Last night has been the first time he was even willing to stay over at the hospital with him...


On another note I'm looking forward to joining the next Knitters Tea Swap Suzie is hosting again. (thank you for the invite) Defiantly something fun to look forward to when my life slows down and both kids are home.



Also a huge Thank you Laura for the beautiful book and letting me be part of it.. Woohoo!! Way to go Congrats on yet another wonderful sock pattern book. 'Friendly Socks A-Z Book 2' So many neat patterns....Wish I had time to knit, my needles miss me, I touch them in passing...

9 comments:

Jo said...

Wow - you are a stronger person than me - I think I would have been catatonic after all that happening to my child

kris said...

Thanks for posting an update! I missed you! Keeping you in my thoughts and hope everything settles down soon!!!

cpurl17 said...

I miss you too! You're going through so much--my thoughts and best wishes are with you.

Zonda said...

We miss you!! Sorry so much has been going on! Wish you and your family well! You are in my thoughts! ((hugs))

Maureen said...

My thoughts have been with you. Glad you posted to up date. I hope things get back to a calmer state of normal for you very soon!

Batty said...

You're a very strong woman. I'm sending good thoughts for both of your little ones. I hope the MRI went well and brought encouraging results, and that your daughter is enjoying the ice cream. I remember loving being able to eat ice cream several times a day instead of full meals, it was great!

Hang in there. We miss you!

Cheesy Knit Wit said...

You know how many times I have thought of you?! I pray that all will settle down in your family, and that your son will get better with the proper medication and treatment!

Take care!

Annie said...

I'm thinking of you all!! PLEASE keep us posted- I know seizure disorders can be extraordinarily frustrating to diagnose and treat- hang in there!! BIG hug to you!

Margene said...

Oh my...you have been put through the grinder! I do hope your children are soon feeling better and life gets a little less hectic for you. If I could stop over with some tea and treats I would! But, as it is I'll be sending you some (I'm your swap pal!) and sending good thoughts, too!