I don't want to be posting this...

[Deena]

But I am currently awaiting for a phone call from Tristan's neurosurgeon:waiting:....

He has been a bit "off" for a while now, yesterday he was really tired, and especially moody, today seems to be worse and while he was laying on the couch half asleep he started "jerking" I have a feeling he may have had a seizure. I know you all probably think I am crazy for not running him to the ER, but if we can get into the office or at least have them call the ER ahead of time, it will be MUCH quicker and with a 2 yr old in tow, quicker is definitely better! Plus we will see his actual doctor/PA so they will know him, rather than the person on call.

He is currently resting on the couch and I am watching him closely, he is complaining his belly hurts, and such, so not sure what all is going on it very well may just be viral and he had some muscle spasms :)

Just say some prayers for us!!

[YvetteSanders]

oh no! update us as you can Deena, you're both in my thoughts today

[KimberlyGiarrusso]

Oh no, I hope you get some answers. I am thinking about you both.

[Charla]

How awful. I'm praying for him (and you)
:hug:

[ajoyfulheart]

((Deena)) I hope you hear back soon!! That poor little baby :(

[sinead]

Oh Deena! I hope to hear that he's ok. He (and the rest of your family) has been through so much!

[Deena]

We are currently in watch and wait mode... we get that A LOT with him:break_everything:

See Tristan does not present with the obvious and traditional shunt malfunction symptoms, and to make things even easier on mom and the doctors... His shunt malfunctions do not appear on the best and easiest diagnostic tool which is a CT scan! :rolleyes: The other way to diagnose shunt malfunction is to test the pressure by doing a lumbar puncture... doesn't that sound fun?? NOT.... So wait and see it is. And apparently Tristan's doc had the nerve to go out of town for the holidays :winking0071: Although if there is an emergency I am quite confident in at least one of the back-up docs, he sees quite a few of the other spina bifida patients in the area, and he is an awesome doc from what I hear :smile2:


I also put a call into the urologist, because it is very possible some of this is due to a bladder infection (the fatigue and moodiness) which I have suspected he might be developing.

Oh and about the "jerking" according to the PA he thinks that Tristan may have just had some muscle spasms, since he came to so quickly, which that was kind of my hunch but since it was so pronounced it concerned me a bit, he says during sleep, some people tend to have a lot of muscle spasms.

[chloe]

Hope he'll be fine! Sending lots of good vibes your way!!

[Priscilla]

((hug)) I hope everything turns out okay!! That poor little boy (and momma)

[Deena]

Ok heard from the Uro, They just want me to take him to his ped tomorrow and get a Urine culture done... His ped will probably start him on an Antibiotic as well, which is fine :) But then depending on how the Urine Culture comes back the uro might change the Antibiotic to a more specific one.

I just wanted to clarify to, that the wait and see with the Neuro is a wait and see if things get worse, we will take him in, or if they improve, I will remain in phone contact with his doc's office tomorrow and over the weekend if need be. They are pretty good about that. He is just a tricky case, he did take a long nap and is now downstairs playing with his brother LOL :) So that makes me feel a lil better.

[kresta]

Hope everything turns out okay. Will be thinking of you guys.

[jessie97]

Hope you are able to find out what is wrong soon. You are in my thoughts and prayers.

[annscraps]

Oh my goodness - I can't even imagine how you are feeling! I would rather be ill myself than worry about my kids. Just follow your instincts - mother knows best!!!

[paperboutique]

I hope that everything is okay and that you get a call from your Dr. soon! The waiting is always agonizing!

Is he running a fever at all, even low-grade?

My DD started having febrile convulsions when she was just about a year old - right when she started cutting her molars. She would spike a high fever really fast and then go into convulsions.
It was painless for her, but really scary for us. They came off and on for the better part of a year, until she finished cutting her 2 yr. molars. She hasn't had a fever or a convulsion since and she's perfectly healthy (she's almost 6 yrs. now).

Anyway, I hope it's nothing serious. Have you tried Tylenol or Tempra??

{{hugs}}

[Paula]

Deena, how is Tristan today? I do hope and pray that everything is ok.

[Deena]

Leah, Tristan has Hydrocephalus and Spina Bifida in the last 6 months we have dealt with several hospitalizations and 3 surgeries 2 were for his shunt which drains fluid away from his brain. He is almost seven years old now, and this is something he was born with, and will always have. He is not really running a fever, that is the first thing I checked since he has been known to spike a fever in the past! It was 100.5, which according to his specialist is not clinically even a fever, something I never knew until I called him in a panic to days after his surgery saying he was running a fever and he laughed at me when i told him how much it was.. He explained to me that until it get to be over 101, it really is not something to be concerned about.

You can read more about Tristan by going to my blog, there are post about him and his fun stuff there LOL, plus a link to his care page :)

[Angela]

Hoping everything works out. Many prayers and hugs for yoU!!

[ccouch]

Oh sweetie! How scary for you guys! Praying for strength for you and that everything's okay w/ your guy!

[sinead]

It sounds like he's doing a bit better, Deena. LOADS of prayers for you guys. I hope that the antibiotics take care of the problem and that he's on the road to recovery in no time. (((hugs)))

[meems]

hugs for you and Tristan, Deena! hope he is doing better.

Is he enjoying the Wii?

[Valgal]

Everything still going well?

[Paula]

Yep Deena, any news for us?

[annscraps]

I'm hoping that no news is good news!

[Deena]

Is he enjoying the Wii?
OMGosh YES!! That thing was the best money spent ever!! The first thing they ask to do when they get up is play that thing, and they would play it all day everyday if I'd let them!


Everything still going well?


Yep Deena, any news for us?


I'm hoping that no news is good news!

Thanks everyone for asking, Sorry I have been away a bit, been getting the house ready for our new years eve party tonight :)... Tristan Started on his Antibiotic on Friday, and it has been helping a TON, so I totally think the problem was a Urinary Tract Infection!! Simple! Thankfully...

[tamra]

I'm so glad to hear that he is doing better! Being sick is not a fun way to start of the new year (or end one)!

[Priscilla]

Glad all is well since I've been out of touch for a few dasys.

[Paula]

I'm so glad to hear that!!

[chloe]

Glad he's ok!!

[Vania16]

I'm glad he's doing better (((HUGS)))

[jmama]

Glad to hear he is doing better!

[Rynonut Mom]

Oh - so glad that he's doing better and that it was something relatively simple, Deena!