Tuesday, April 28, 2015

Today was Logan's Doctor's appointment with his Neurologist. I was telling her about all of the seizures he has been having and how he has been sleeping so much since he came home from the hospital last Tuesday.
The doctor on call at the hospital did increase his seizure meds but by only 50mg in the morning, so I was not sure why he was sleeping so much.
Dr.Maller told me it's because he had really bad, long seizures and it will take him a little while to recover. Day by day he is feeling better and acting like himself again. I asked her if she could do an at home 24hr EEG, She said let's wait and see what happens and if he has more seizures then she will order one. His last at home EEG was November of last year.

She did increase his Trileptal from 7.5 to 9.0ml twice a day and his Lamictal to 150mg twice a day. We go back in 3 months for a check up.
Amazingly when he had blood work done to check his levels they are still a little low meaning she could have increased his meds alot more. But she said she wants to do it slowly.  Because the last increase was on April 14th.
I asked her why??? Why all of a sudden he is having more seizures and they're getting worse and they're changing??
She said sometimes that happens, sometimes they increase as the child gets older or they get better and in Logan's case they are getting worse.

Dr. Maller and the hospital agreed that he had some kind of infection they just don't know what kind that caused the seizures to happen.  He has had many infections in the past and no seizures. I wish there was a crystal ball I could look into and find out why?

Saturday, April 25, 2015

More Seizures

This past weekend has been so rough. After going to the E.R. on Friday the 17th. Logan woke up Saturday the 18th very lethargic so I called his doctor and he said bring him into the E.R. and they will check him out and give him fluids. 

We were there for 6 hours they gave him an IV with fluids and a suppository with milk and molasses and did xrays. He was so constipated it really helped him. 

Right before we were getting ready to leave he had a slight temp of 99.5. After that we were discharged and left the hospital at 5pm as soon as we pull in the driveway he starts to have another seizure and turns blue. His seizure lasted 25 minutes. I gave him Diastate rectaly and called 911.

They took us to Summerlin Hospital and while in the ambulance his temperature jumped to 106.5, when we got to the ER they gave him Tylenol rectaly which brought his fever down to 105.5 then gave him more tylenol and ibuprofen through his G tube. Slowly his temperature started to come down, they gave him an IV with fluids, drew his blood and did more xrays. I told them I was not leaving this hospital and that they are going to admit him. 

The ER doctor called Logan's doctors and they all agreed that logan be transferred to Sunrise Hospital because of his heart. So we get to Sunrise around 12am and they admit him there. Logan was there for 2 days. They gave him a ton of IV fluids and monitored  him. He has no seizures and no fever so they release us on Monday afternoon. Also while in the hospital he develops a respiratory infection.  

I am happy we are home and Logan is doing great. He has been so tired and just worn out. He has been taking naps every day this week. His poor little body has been through so much. They did increase his seizure medicine so I am really hoping he does not have another seizure for awhile.

Friday we went to see his gastrologist, I told him about the constipation and that the ER doctor found 2-3 lbs of poop in him and he said just give him 5 capfulls of miralax with water and that will help. While waiting in the room for the doctor to come in logan fell asleep. He is just so exhausted.

Thank you so much for all of the prayers and love you have given our family.

Friday, April 17, 2015

Another Seizure

Logan woke up this morning throwing up and continued all morning long. He had a slight fever of 99.1, gave him some Tylenol and he slept on the couch. Later in the afternoon he woke up and I let him watch some T.V.

He was laying on the couch and all of a sudden he just rolls right off. I looked over and he was having a seizure and was so blue it all happened so fast. I gave him 20mg of Diastate rectaly and called 911.

We were at the E.R. for about 4 hrs.

They did blood work and that came back fine. They gave him an IV with fluids and did a chest, bladder and abdomen x-ray. X-ray showed alot of poop and severely constipated.  They have no idea what is causing the seizures I will call his neurologist on Monday and get him back in the office we were just there Tuesday of this week and she increased his meds apparently it is not working. I would really like his seizures to be under control. They are happening more frequent. This is the first time he turned blue. His saturations were 73. We have Oxygen at home so I gave him some while waiting for the ambulance and that really didn't help at all. At this point I am just so frustrated and heart broken that logan is having to go through this.

Thursday, April 16, 2015


What a week this has been. So glad it is almost over....

Monday, Logan had to go to Labcorp to get his blood drawn for his Lamictal Levels for his Seizures. 
Then we had to head over to the Immunologist to get a pneumonia shot. Logan has been seeing an Immunologist because he has been sick alot and his Cardiologist refereed us to Dr. Wilson he is an amazing Doctor. Our previous blood work done by Dr. Wilson showed Logan's immune system to be down so the Doctor is hoping by getting this shot it will give him a boost. We go back to labcorp on May 8th to have more blood work done to see if the shot helped him. We then managed to make it to therapy for Speech and then home to do some school work.

Tuesday, Logan went to see his Neurologist for a check-up. She increased his Trileptal  to 7.5 ml 300mg twice a day and Lamictal 100mg in the a.m and 150mg at night. It's so frustrating as to why he has these seizure's, is it from over stimulation?? Doc could not give me an answer there is just no way of knowing. But after every seizure he does bounce back. So for now, I will be happy for that. We follow up in 3 months.

Wednesday, We saw the Pulmonologist and Logan is doing FANTASTIC!!! No breathing problems. These past couple of months he has been on several rounds of antibiotics and steroids, so I am happy to report his Lungs are clear. We follow up in 3 months.

Elizabeth and Alicia are doing great! I am so proud of them and all of their hard work they put into school. The other day they stayed after school and wanted to get more information about the "Best Buddies of Southern Nevada" organization. They help people with intellectual disabilities. They came home last week and said they want to volunteer to help other kids like Logan. They meet again next month after school to get things going. They are both so excited to start helping others :)

Thursday, April 9, 2015

This morning Logan had his check up at the Cardiologist. His EKG and Echo went really good, He still has a leaky heart valve which will always be there. We just say lots of prayers that it does not get any worse. And of course the one day we go in to see his Heart Doctor his Saturation's are 96!! They are NEVER that high. I even took it at home before we left and it was the same. I take it every day and he is always in the 90-93 range. The Doctor said that is normal for him because of his heart valves. But I am so happy to hear the good news!! With him having more seizures I always worry about his Heart. YEAH for the good news :) Oh and he weighs 67 lbs and is 4'3 inches tall 

Tuesday I finally got my butt back to the Doctor. I have been having a really bad cough and losing my voice for 3 weeks now. Right before we left for our Vacation I started having a hard time breathing so I went to a quick care and they diagnosed me having Asthmatic Bronchitis. He prescribed me Albuterol Inhaler, Prednisone, Amoxicillin and cough medicine and told me to get lots of rest. haha I said I am leaving for San Diego in the morning that is not going to happen.

Still coughing all day and night and hearing the Bronchitis when I breath, I went to see my family doctor they took a chest xray and no Pneumonia. Thank goodness. He gave me more Prednisone and a z pak. So we will see what happens. If I could get rid of this cough I would be doing great. Oh and the stomach pain from all the coughing.

Monday, April 6, 2015

Spring Break is over.....sigh....time to get back in the routine of things...

Logan had his Eye Doctor appointment this morning. His vision has improved! I really don't see how since he will not wear his glasses all day long like the doctor prescribed.
He is farsighted (the only one in the family) He got these glasses in February and after only wearing them for three days they were completely scratched and the end of the frames had bite marks. So we had to get them replaced again, I told the Eye Doctor he only wears them while sitting at the computer to do school work and she said that was fine. What a relief...

We then headed over to Therapy where he had 30 minutes of Speech, his therapist said he did really good! then proceeded home to get some school work done.

Sunday, April 5, 2015

Happy Easter!!

It has been over two years since my last post, So much has been going on in my family's life. I have been wanting to start blogging again for myself and my sanity. I feel if I get things out it will help me.

We started Spring Break on March 29th, we decided to go to San Diego, CA and we had so much fun!! Unfortunately my husband got sick so I asked my Mom at the last minute to go with us and I am so glad she did.

We got to visit Legoland, Sea Life Aquarium and San Diego Zoo Safari Park. The kids had a blast.
Unfortunately our trip did not end well. Early Wednesday morning while sleeping I heard Logan coughing around 5am which is not unusual, but then I heard kind of a slurping sound coming from him. I rolled over rubbed on him (he was sleeping with me in bed) and said Logan are you ok? no response I jumped out of bed and turned the light on and noticed he was having a seizure, He had a little Cyanosis. I immediately gave him Diastat rectally and called 911. He was just laying there lifelessly and there was nothing I could do I was so scared. They rushed him to Rady Children's Hospital. It did take a few hours for him to start walking on his own again. He was released that day and we made our way back to Las Vegas. We got home early Thursday morning.
He is acting like his old self again, It just scares me so much when he has seizures. He does have alot of Absent seizures but nothing as bad as the one he had earlier in the week. His last major one was July of last year and he was hospitalized for a week, but at that time I did not have Diastat on hand like I do now. I am so thankful for my wonderful Husband for all of his Love and support and all of my family and friends. I could not get through this without them.