Tuesday, April 10, 2012
Not a whole lot happened today. Austin is officially diagnosed with myoclonic tonic seizures. He is sleeping a whole lot so isn't having as many seizures as he has on a typical day. Still about 10 or more a day here. We are coming off of 1 of his meds because it actually doesn't have high success rate with his type of seizure. The other 2 he is on are great for what he has. They want to start depakote but some blood work is required first that takes a few weeks to get back. So we talked about adding a night dose of zonegran till we know if he can take that drug. For now they are testing blood levels for the meds he is on to see what needs to be increases or decreased with the other 2. We talked some about VNS (vagus nerve stimulator) but we are not there yet and it doesn't always work. That is something we will let Dr. O decide if he ever needs it. Today to biggest thing that happened is the Neurologist sat down with me and showed me a few of Austin's MRI's and CT scan. She showed me things I have never been shown before. Where his brain is damaged, the wider dips throughout the brain, the enlarged lobes. She also explained that these seizures that he is having does not cause or has anything caused more brain damage since the scans he had at 6 months old. For now, more EEG monitoring, coming off 1 med, possibly starting another or going up on the other two. May know more tomorrow. Austin did get out of the bed today. Went to the play room twice in his walker. Oh, the Dr also said we will probably be here at least 2 more days. :( I guess I was hoping for a miracle by wishing to be here 2 nights.
Monday, April 9, 2012
The hospital here is about a 4 hour drive from home. I was also told we are not is a very good part of town so we stopped in Germantown for gas AND Starbucks!
The Fex Ex Family house was so nice and gated. hahaha. I will definitely have to send them a thank you card and donation. We had to be here at the hospital bright in early at 5:30 am. When we got here Austin had a CT scan with no sedation (He was a champ!), then we met several nurses, got his EEG put on, had a PT and OT consult, and slept a lot in between. I did get him to eat a little lunch. The food actually isn't too bad. Then this afternoon we met his Neurologist (Dr. Amy). We talked for about an hour and that is unheard of in a hospital. I am impressed. She had lots of questions but I had more. She had seen him seize on EEG and watched him on video that is in our room. He has had several today. Tonight we are going down on 1 med. We will see what is EEG down tomorrow. If no change we know we prob need to just come off of that one. If it is worse, that means that one is working. For Austin, seizure control (per Dr. Amy) would be maybe a few very short ones in the morning and possibly 1 or 2 randomly during the day that is very short. That probably sounds awful to some but great to me. Sometimes he would have 30 a day. Then we talked about VNS, Ketogenic Diet, and lots more. This doctor was so nice and asked if I had ever seen his MRIs, wanted to print them and show me tomorrow, wants to research why his muscle tone is so low (she was expecting him to be tight). Lots of info for 1 day. After she left the nurse came to stay with Austin so I could get his stuff out of the car. I brought his walker and some toys and got him OUT of that bed. He loved it. Well, I will post again soon. Prayers for Austin are always welcome appreciated.
Last week was a little emotional. My mind has been going crazy with worry for my little Austin. As you saw from my last post about the seizures. On Tuesday last week, Austin's nurse at Special Kids called me and he had a seizure. Nothing out of the ordinary except for this time I has number. Oxygen level numbers and heart rate numbers. Something I have never heard before. After talking to my therapist (aka best friend Jessica) I think this is where my emotions started. Knowing something in the back of your mind and actually hearing it are totally different. My heart is breaking because I cant fix this. Of course I call Dr.C and then call his Neurologist. Dr. O decided we would go up a little on his meds and do something we had talked about in the past. That would be referring us to a epilepsy specialist in Memphis TN and the LeBonheur Children's Hospital. I still had no idea what she was talking about really. Dr. O is off on Wednesday but said she would make sure she got the referral over and sometimes it can take a while to get it all set up. Okay, Now what? I get a call THURSDAY from Memphis saying that they received Austin's referral and had a cancellation for Monday. Well alright. We will be there. I am thinking this is just some kind of appointment or a long day of testing. Boy was wrong. The lady goes onto explain that this is a hospitalization and the study has 4 Epiletologist (???) that go to special schooling just for epilepsy and 14 Neurologist. We are assigned our own Epilepsy Neurologist let's just say and Austin's will have some test and around the clock EEG monitoring. Okay, Next. Then she tells me they will not know the treatment plan till he gets here and we see his EEG. They could want to wean him off of some of his meds and try different things. Basically we could be here a few days up to a week. :( Austin's seizure have been getting longer over the last few months. Nothing happened BAD so say that we had to come right away. It was just timing. Basically our Neurologist has tried several meds and doses and Austin needs some long term EEG monitoring while changing meds around to see what is going to work best for him. They told us we will leave when we have a good solution. Then she tell me when we get here he will need an MRI. Guess who can not have an MRI? Basically I spend Thursday and on the phone trying to get things in place. Therapy evaluations, finding a place to stay Sunday night since we had to be here at 5:30 Monday morning, and trying to find an MRI solution. His cochlear implant surgeon said it would be a best to come pick up his last MRI and CT pictures from Vandy and get a CT scan instead. So off to Vandy I went. As you can imagine I was a little overwhelmed. Scared about going by myself. Crying every time he has one of these dumb seizures. NOW, Something I was VERY sad about was Sunday was Easter and I had to leave at 10:00 am. (They got is in the fedex family house which was very nice) I love Easter, waking up early and the kids seeing Easter baskets, going to Church, then out to eat some yummy food. Not this year. We found the solution of going to the World Outreach Service at MTSU on SATURDAY. It was great. Great music and a great service.
Thursday, April 5, 2012
Last night I posted that I bought a new stove and Marshall had no clue. Today I was BUSTED. The whole 5 minutes my phone was in the car unattended- the Lowes delivery called, left a VM, then called the secondary number- MARSHALL. Of course while I am in the Starbucks line Marshall calls me and say- "Did you buy a stove???" HAHAHA. He didn't care a bit and I knew he wouldn't. I LOVE the new convectional oven. Many meals will be getting made in this baby.
Wednesday, April 4, 2012
Well, first I must say THANK YOU to all of my sweet friends and family who text, emailed, called, and facebooked me. It was just ONE OF THOSE days. A few things are hard for me to do. 1- ask for help (even when I need it) and 2- show my feelings when I am upset. Something that is EASY for me is shopping though. LOL. We are in the middle of several little projects around the house so today I went to Lowes to get some white rocking chairs for the front porch. I left buying them AND a new stainless convectional over. haha. Best part is Marshall has NO IDEA. They will deliver and install it tomorrow. Now don't think I just go buy big things like that all the time. We have been talking about an over since before Christmas. The hubby has told me several times to find the one I want. So tadaaa. They had the one that matched out fridge and dishwasher. Oh Retail Therapy. I also have a hard time 3- keeping a surprise a surprise. I always give gifts early. It is taking all I have to not tell Marshall I bought a stove today. LOL. I will let you know his reaction tomorrow night. Stay tuned. :-)
Tuesday, April 3, 2012
Epilepsy- I HATE YOU!
Seizures- I HATE YOU!
Yep, It has been one of those days. I look at my baby boy (who just turned 5) and cry. Why? seizures- that is why? About 2 seconds after it starts till it ends- tears roll down my face tonight. I have to pull myself together. My boys think I am insane and I would never want them to know how much my heart is breaking because something is wrong and I can't fix it. Just one of those days? Maybe. So with that being said I talked to Austin's Neurologist tonight and we will be going to a specialist in Memphis soon. Till then I will put on my happy face and pretend my heart isn't breaking.
Bacterial Meningitis- I HATE YOU TOO!
Please keep praying for Austin.