Friday, May 29, 2015

What a week this has been. Tuesday we went in to see his neurologist so they could put the electrodes on his head to do a 24 hour at home EEG. Wednesday we went back into the office to have everything taken off and found out our followup appointment is not until August 4th. Because Dr. Maller is out of town for 3 weeks and that puts her behind. And it's ridiculous that no one else in the office could speak with me regarding Logan's test results.  I asked them to have the test results mailed to me and I should have them in 2 weeks.
After that appointment we headed on over to see his cardiologist.  It was a follow up visit from his hospital stay. His heart is looking good, his heart valve has a mild leak, so thankful it has not gotten worse. 

Thursday we went to see Dr. Ahad who is a neurologist to get a second opinion.  She consulted with us for an hour, what took the longest was Logan's medical history which I provided all of his records for her. I was telling her that I am tired of seeing him drugged up and I was honest with her and told her that Thursday morning I did not give him his seizure meds he was so happy and playful that day even his therapist notice the difference. I also said I don't follow up with Dr Maller until August 4th.  Dr. Ahad said I will consult with Dr Maller when she comes back in town and that they will work together to get Logan's seizures under control. Dr. Ahad also mentioned she does not want to take any patients away from Dr. Maller and that they have consulted many times in the past regarding other patients. So for now until we see Dr Maller she is slowly lowering Logan's dose of the Trileptal from 7.5 ml twice a day to 5.0 ml in the morning and 7.5ml at night. Then after one week do 5 ml in the morning and 5 ml at night. Then when Dr Maller comes back she will take him off of it completely and possibly put him on Depakote. And we also talked about having surgery and putting a VNS in but most likely would not be able to because he has heart disease. She said depakote does have strong side effects and the major one is liver damage so he would always have to have blood work done. And because it is a strong drug it would outweigh the Lamictal. I asked her if it causes Liver damage then why take it at all? Her answer is it works and very well.
So we have to take the good with the bad and just get his blood tested all the time. She also recommended that Logan see a geneticist again. The last time he saw one was when he was 11 months old. And since there is only one geneticist in the state of Nevada it is over a year wait. So we are on the waiting list. Logan does have a follow-up with Dr. Ahad on Oct. 1st

Monday, May 25, 2015

Saturday morning Logan woke up tired like any other morning. He had therapy at 9am. When we get to therapy for some reason he wants the stroller in the back of the car to take inside therapy, I said no and he starts throwing a tantrum. Threw himself on the ground and was very upset. I bring him inside therapy and he just lays there crying on the floor rolling around. He has never acted like this before and I don't know why. It was so bad at the end of therapy his therapist had to carry him to my car.
On the way to my moms house he finally calms down and I am looking at him through the rearview mirror and his eyes start to flutter and he is having another seizure. I pull up to my moms house and I call 911 his lips did not turn blue this time but his body was just lifeless.
Since he was not in immediate danger I asked they take him to Sunrise Hospital. So we spent the day at sunrise they gave him an IV with fluids and did a CT scan of his brain, only because while he was in the trampoline at therapy he fell and hit his head on the mat and then before we left he banged his head on the ground twice and after his seizure he would not stop throwing up so they wanted to cover their bases and the CT scan came back fine.
I did get a call from his neurologists office and moved his EEG up to tomorrow. So I am happy with that.
He is back to his old sweet self :-)

Tuesday, May 19, 2015

Logan has been seeing an immunologist for a few months now. Thanks to the referral of his cardiologist. The doctor ordered a complete blood work up of his immune system. The results showed that his immune system was a little low so we went back into the office and Logan had a pneumonia shot. Three weeks later went back to labcorp to get blood work done. Last week was Logan's appointment with Dr. Wilson at University of Nevada School of Medicine. Let me start by saying he is an amazing doctor and I highly recommend him. The pneumonia shot worked it boosted his immune system!  Now he is less susceptible to getting viruses and the shot will last a very long time.
They also did a functional Cilia biopsy test and everything came back normal. Next was a environmental allergy test on his back, found out he has no allergies.

I was telling Dr. Wilson about Logan and everything that has been going on with him neurologically and that I wanted to get a second opinion and if he knew anybody that could help. He said he knew a neurologist in Henderson and she's a very good doctor she studied at John Hopkins.  Her name is Dr. Ahad and that she is very hard to get into, over a four month wait. I got home and he personally called me to tell me that he made an appointment for Logan for next week I couldn't believe it. I am so excited!!

Logan does already have an appointment with Dr. Maller to go in and have a 24 hour at home EEG on June 3rd.  We went this morning to LabCorp to have blood work done to check his seizure levels. 
His medication still needs to be adjusted and or changed. After he gets his meds in the morning he is so tired and wants to take a nap everyday. And some days after he has his meds and g-tube feeding he gets up and is very unstable and then throws up and is extremely tired and I have no idea why. With this EEG I am hoping to get some answers or at least with seeing this new doctor.

Tuesday, May 12, 2015

What a great weekend!

We had a great weekend! Saturday morning Logan had Occupational Therapy.
Then we headed to Henderson to the yogurt festival. Logan had such a great time playing on the jump house and riding a few rides. It was so nice to see him smile and enjoy himself.

I came home dropped off Logan and I went over a friend's house for some me time and did some stamping and card making for 3 hours, it was so nice.
Richard took the kids out for a few errands and dinner 😆

Sunday Richard spoiled me by making me breakfast in bed with some beautiful flowers. And the kids made me a beautiful card it was so sweet.
My parent's came over for a barbecue and Richard cooked everyone dinner. I am such a lucky girl to have a wonderful husband who takes great care of me and a beautiful family. I am truly blessed.

Friday, May 8, 2015

I was hoping to post that Logan has been seizure free for 7 days but that is not the case. He had an absent seizure wednesday night before going to bed. His neurologist has changed the dose of his medicines again. It is so heartbreaking to watch him go through all of this and there's nothing I can do for him. For some reason he woke up this morning and threw up just once but no fever.

This morning he had physical therapy and speech and he was so tired. Then we had to go to labcorp to get his blood drawn. Logan has been seeing an immunologist because he has been sick alot. They gave him an pneumonia shot 3 weeks ago we went in today to get the bloodwork done we go back to the doctor next week and see if the shot helped boost his immune system. Logan will also have a allergy skin test to see if he is allergic to anything.  

Here is hoping we (Logan) has a good weekend and stays healthy.

Monday, May 4, 2015

This is what Logan's mornings have been like for the past two weeks. An hour after he has his g-tube feeding he falls asleep for about two hours. We don't really get any school work accomplished because he is so drugged up. After his nap he does feel alot better. The Doctor has been changing the dose of his seizure meds constantly. 
I spoke with the nurse today and they changed his dose again so now he is on 7.5ml twice a day of Trileptol and 150mg of Lamictal in the a.m. and 200mg at night. We will see how it goes in the morning. We will have his blood taken in two weeks to make sure his levels are good.

We had a great weekend! Saturday we went to my Brother's girlfriend's and her daughter turned 10. It was a fun birthday party. Logan did so good, it was so nice to see him having a great time with his sisters laughing and playing.

And Sunday we went to see Avengers age of Ultron. My parents watched logan. The movie was sooo good, I can't wait for the next one in 2018.

Friday, May 1, 2015

It never ends.....

Logan had another seizure this morning...

I had to take the girls to the orthodontist this morning then I dropped them off at school at 9am. We then head on over to therapy. I get him out of the car and he is pail, clammy and can barely walk. I walk inside tell his therapist what is going on and then we leave.
Since my mom lives close by, I drive to her house so he can sleep, we are almost there and he throws up in the car. When we get to my mom's he falls asleep while I am trying to change his clothes. And he sleeps for 2 hrs.  When logan wakes up he is fine and acting like himself again.

I called Dr. Maller and told the nurse what was going on. She said they are going to have a at home 24 hr EEG done and to increase his meds to 10 ml twice a day. I told the nurse that I was reading something about sodium levels being low when taking high doeses of lamictal and it also causes more seizures. He has had 3 this week. I am waiting on a call back to see if they want to order lab work.
I really think they need to change his seizure meds but I don't think she will do anything until after his EEG is done.

I am beyond frustrated and mentally exhausted. I am hoping to have answers soon.