Sunday, October 28, 2007

New Meds Follow-up

So the medication seems to be working wonderfully! He has had no pukes/pass out episodes since we have started taking it! We are so very happy about that :) He did have one giant puke at school but who knows what that could be from. It is hard to distinguish between his pukes sometimes. The first day we took the trileptal it made him sleepy but he has been fine since.

Halloween is around the corner and Riley will be superman and Miles will be batman. They dressed up yesterday for the It's My Heart 'Boo'l-a-thon. They were so super cute! The whole event went really well! We had about 100 people (we could have had up to 220 in the center, but 100 ain't too bad). The costumes were great and everyone seemed to really enjoy themselves. Sean and I did not dress up but alot of the other grown ups did. Corrie and her husband were Al and Peggy Bundy, Sharon and her husband were Homer and Marge Simpson. They looked great! Since I didn't celebrate Halloween as a kid I never think of dressing up. I have done it a few times over the years but not this year. I think the last time I dressed up I was cat woman, Sean was Robin, Riley was batman (same batman costume as Miles) and Miles was cat baby. By cat woman I mean black outfit and ears...not like Halle Barry or anything.

I got to see a glimpse of the It's My Heart Cookbooks yesterday. I can't wait to get mine! They are only $10, not bad. If you are interested go here to check them out or order your own. These are definitely going on my Christmas list this year! :)

Monday, October 22, 2007

Answers to Questions...

Recently the puking and getting tired (seizures) have been more frequent but I personally think he has been doing it since he was 6 months old. He had a day where he had 6 episodes of puking and passing out. Then on the 6th one he stopped breathing, pretty scary. The EEG then was normal.

I think it is a product of his CHD because it is a vessel, I don't have the cardiologists opinion yet.

Wednesday, October 17, 2007

We have a diagnosis...

Epilepsy. Interestingly enough it is a 'product' of his CHD!!!!! He has a congenitally underdeveloped vessel in his right temporal lobe where the seizures are originating from. I guess because it is part of his vascular system it is CHD related. (that is how the Nurse Practitioner put it). An incidental finding is that he also has a very small cyst next to this vessel but they don't think has anything to do with his seizures. He will start Trileptal tomorrow (the pharmacy has to order it). His seizures are on both his left and right side which (she said) goes along with epilepsy - something about if it were only on one side it wouldn't be epilepsy...I don't know. Anyway, the meds should take 2 wks to work but will make him drowsy and possibly dizzy. It won't interact with any of his other meds but we will need to monitor liver function I believe (as with most epilepsy meds). I just realized that because it is caused by a congenital defect he won't ever grow out of it...that sucks.

So I guess I have to get him a new medic alert bracelet...

Saturday, October 13, 2007

Never a Dull Moment at the Suggs' House

So we got the results of the EEG but are waiting to talk to Neurology to get some answers so we know what the results mean. We have an appointment on Wednesday of next week - the 17th - with the nurse practitioner. (an MD wasn't available until Nov. 1) After we have this appointment we will hopefully have some answers and then I can spill the beans.

This week has been fun, well not really unless you are into kidney stones. Tuesday night Sean comes home from work and said his stomach hurt which is pretty common given his GERD and such. Then he says he can't stand up and he has a fever of 101.7. The pharmacy recommends pepto so he takes some of that. He is literally shaking from the chills and hot to the touch. While he is hanging out on the couch and I am checking my email I start to feel a familiar pain. I think - oh, I know what this is...kidney stone...ouch! So I go potty a couple of times and out it comes, it was a small one (only 2mm). Whew, all is better! Off to bed for me and Sean sleeps on the couch.

The next morning I take the kids to school and Sean stays home. He said he didn't get off of the couch even once and didn't even turn the TV on, he felt so bad! I called, he didn't answer. A friend at work asked how he was doing and I said "He is probably dead on the couch, he won't answer the phone" But he said he was in too much pain. When I got home from work he said take me to the hospital. So I did. We got right back in a room which is amazing! They took some blood and urine and we watched Family Guy (it seems the only time we get to see this show we are in the hospital! It is the only good part!). So the results come back - he has a severe kidney to Cat Scan. He's got 2 kidney stones! They gave him some good drugs and sent us home after midnight. (the next day I worked 12 hrs after only 4hrs of not used to that!) He saw the urologist on Friday and he thinks Sean passed a stone on Wednesday. So one down two to go!

Things calmed down after that. So now Sean has two kidney stones in his right kidney and I have 'several' in my left...but none on the right, well not anymore :)

The boys are doing great pukes this week at all for Miles!!! Thank God!