Surgery

I just wanted to write a quick blog post about Seth and his recent surgeries. In November we had scheduled his leg surgery for Jan 17th. In early December we met with our neurologist and asked her what she thought about the VNS and she thought we should do it because Seth will always have epilepsy so if we get the VNS and he can actually get off some medicine that could be really good for him. So Mike and I talked about it and we thought well if we could just do both surgeries at the same time that would be ideal because in the past when he goes under anesthesia he tends to have more seizures and so we thought one less time under would be better. So we contacted his neurosurgeon that would be placing the VNS and asked if they could both be done at the same time. We got word in January that both surgeons agreed to do them at the same time. 

The surgeries that he got done were:
1. gastrocnemius recession. Seth's brain tells him it is normal to point his toes. He has been doing this since he was born and over time it has shortened his leg muscles to the point where it is extremely difficult for him to get to 90 degrees. So for the surgery they made an incision in the back of his leg by his calf and went in and lengthened the gastrocnemius muscle so that he can get his foot to 90 degrees. This will make it easier for him to get into his AFO's and hopefully standing. He will be in casts for 4 to 5 weeks.

2. Vagus Nerve Stimulator. They basically inserted a device (like a pacemaker for the brain) on the left side of his chest right below his collarbone. It is set to send mild pulses of electrical energy to the brain every 5 minutes for 30 seconds. This is the lowest setting. When we see his neurologist in early Feb she will set it a little stronger. They will work up to the amp and duration that they think is needed for him. Click here for more information.

He was scheduled for the leg surgery first at 10 but it was moved back to 10:30 and then the Neurosurgeon was next with the VNS. He was in surgery for a little over 3 hours and then we got to go and see him in recovery. We were told we were for sure staying the night but both doctors said that he was okay to go home that day. It took him a really long time to come out of the anesthesia, I mean a really long time. He was still completely out of it driving home.

Both Surgeries went the best they could and we will go back to see the Neurosurgeon for a check up in Feb and we will see his orthopedic in 4 to 5 weeks to get the casts off. Here are a few pictures from friday.


Way behind...watch out its a long one!

I will try my best to get you guys all caught up. I have been really bad about updating all of this so I will do my best. They last time I updated  was when Seth was in the hospital with RSV so I am going to do my best to get you guys caught up. (side note: Right after the hospital stay in Feb for RSV he qualified with the state for nursing. So he gets 32 hours a week of nursing which has been amazing. It took us a while to find a nurse but we found her and she is amazing.)

April 2013: We had an appointment with his neurologist April 11th and we started two new medicines (ONFI and Neurontin) Onfi is a new medicine which is suppose to be amazing for those that have lennox gastout and the Neurontin we are trying because of the constant head banging.  

  • April 24 he went to bed that night completely dry and then remained dry until 3:30 the next day (25th) when we put him in the bathtub to try and get him to go to the bathroom. 
  • April 26th was the same thing as the 25th. So we got him in to see his urologist. They told us it was called neurological urinary retention and that this happens sometimes with kids that have neurological issues. But just to be safe because he has had so many kidney issues in the past they did an ultrasound to check his kidneys and bladder. Everything came back no different than his last ultrasounds. So they showed me how to give him a catheter if he hasn't gone to the bathroom for more than 12 hours. 

May 2013: 

  • May 2nd I was thinking more about his urine retention and I felt that he should randomly at almost 4 not be able to go to the bathroom. So I decided to email his neurologist and see what she thinks about it. I got an email right back and she said that ONFI can actually cause urine retention in some kids. She wanted me to keep watching him for a few more days and see if it continues.
  • May 13th Dr. Jarrar called and we have decided to come off the ONFI because of the urine retention and start him on TOPAMAX. We have tried this drug when seth was really little and it came in a capsule and you had to sprinkle it on his food and feed it to him. He was not a good eater and couldn't figure out how to swallow it so after a while of trying it we had to come off it. So Dr. Jarrar wanted to give that medicine another shot since he now has a gtube. 
  • The rest of May we were coming off the ONFI and raising his Topamax and in the meantime he was still having a lot of seizures. School was calling me to come get him cause he was so cranky and out of it after he had them.  
  • May 30th was his last day of preschool and he actually had a really good day. Thank goodness! Here is a picture of Seth getting his award from his favorite teacher Mrs. Kasey. 

June 2013:  The beginning of June was rough we had a few days with lots of seizures and still the medicine was not helping.

  • June 5th he had a seizure during speech therapy that lasted 5 min and we had to give him his emergency medicine to help him come out of it. We emailed our neurologist and she wants us to change his night time dose of Keppra so we did that.
  • June 3rd we had an appointment with Dr. Adelson a neurosurgeon to talk about getting Seth a VNS (Vegus Nerve Stimulator) the surgery for the VNS was scheduled for July 25th
  • June 12th we had a really rough day he had 5 seizures within an hour. 8:40am-8:50am-9:00am-9:20am-9:35am. I emailed his neurologist and told her what was going on. She emailed right away and told us to increase both am and pm dose of Topamax to 100mg. (FROM THIS MOMENT ON WE HAVE NOT SEEN A GRAND MAL SEIZURE) 
  • June 17th started what we call nights from HELL. Seth was sleeping less and less and we had no idea what was going on. It started out with Seth waking up at 1:30 and then going back to bed to the next night waking up at 10:30-1:30-4:30 and this continued and Mike and I were just getting less and less sleep.  While Seth was not sleeping he would hit his head and face over and over again until he would cry and then he would do it again because he was so upset. I emailed Dr. Jarrar to let her know about his sleeping and head banging but the issue was that she was on vacation in Jordan. So the only way to communicate with her was through email and we would just hope the other was up.
  • June 22nd SETH TURNED 4!!! I can not believe he is already 4 years old, what a special little boy he is and he is such a goofball. 

  • July 24th After his birthday the head banging continued and it just got worse and worse. Sleeping at night just wasn't happening. He went to bed at 7pm was up at 1:30am and never went back to sleep. When I finally got him up for the morning he had bruising on his face from hitting himself. We decided to order elbow braces so that he could not hit himself at night. We had no idea what else to do. We were so excited that the seizures were gone but the lack of sleep was making us crazy. Mike and I actually said we would rather a seizure and more sleep and yet we knew we did not want the seizures. 
  •  I emailed Dr. Jarrar the sleeping was getting so bad that he would just hit himself while he can't sleep. She did not want to change too many meds while she was out of the country so she just had us increase his neurontin and we were scheduled to see her the day she got back into her office which was JULY 10TH This helped for the night of the 25th but on the 26th he still woke up looking absolutley horrible. I felt so bad for him.  Up until our appointment with Dr. Jarrar he still didn't sleep but we did get the elbow braces in the mail on the 27th and he wore those every night until we saw her July 10th so that he would not keep hurting himself. Here is his face at its worst: 

 

July 2013: 

  •  July 8th he started summer school and he absolutely LOVED it and had a great time. He had no problems and he lasted all day. We were so happy to hear that and we believe that he was having such a hard time during school was because of the seizures. 
  •  July 10th we finally got into Dr. Jarrar and the first thing she asked was how the seizures were. We were so happy to say that he is seizure free but he was not sleeping. The medicine Topamax does cause insomnia which now makes perfect sense. As soon as he started that medicine he quit sleeping. I felt much better knowing that the medicine was causing it and that it wasn't something that we were going to have to live with forever. So Dr. Jarrar decided to give him a sleep medicine called Amitriptyline which should help him stay asleep. Dr. Jarrar mentioned that this might still be the honeymoon stage from the topamax and that the seizures might creep back in we are just not sure when. We have decided to stay on the diet for a few more months to see if he remains seizure free. The next question we had for her was, since he is now seizure free do we continue with the VNS Surgery? She said no. Lets see how long he goes without seizures and if they come back we can get back on the schedule for the VNS surgery. So that is exactly what we did.
  • During all of this he was also fighting a gtube infection and was started on augmentin for antibiotic. But the infection came back positive for pseudomonas and he needed another antibiotic to treat it. This continued to go on until July 29th when I took him into Dr. Leavitt and he said that Seth needed IV antibiotics to treat it. They called into PCH and got a bed ready for him and we stayed from July 29th-August 1st. We left on a new oral antibiotic and to follow up with our gtube surgeon in a few weeks.

August: 

  • August 14th He had his first day of school. He is now in the 4's class at Foundation For Blind Children and his teacher is Mrs. Jean.  I almost forgot to take some pictures of his first day so he was not the happiest at the moment cause he was tired but at least I got a few.

This gets everyone completely caught up until our Palm Springs trip two weeks ago. I am pleased to update that Seth is still seizure free. The next post I will get you guys completely caught up. Until next time!!! 

Getting Caught up...

Christmas Program:

Seths school, Foundation For the Blind had a christmas program and they did the 15 days of Christmas and Seth was in charge of the lights. He had to hit a switch to make the lights turn on and it was so so cute to watch him hit the switch and turn the lights on all by himself. After the program they had food for everyone and then Santa came so the kiddos could get pictures with him. Seth wasn't in the greatest mood but I made him get one with Santa anyways . 

Christmas:

We had about 3 weeks off for Christmas break and he did get sick once during the break but it wasnt too bad. We had a wonderful Christmas and Seth and the girls got spoiled with their Christmas gifts. 

Neurologist Appt:

We met with Seths new neurologist January 31st and we decided that in about 3 months we would go off the diet. In the meantime we added a new medicine and took one out. The new medicine seems to be helping a little but we still have not gotten onto his full dose yet. We are suppose to increase it each week until he is on 10mg AM and PM right now he is only on 5mg AM and PM. We have really taken our time with the new medicine because he was in the hospital due to RSV and then he just has taken a really long time to recover from it. 

RSV:

Thursday night after his neurologist appointment we noticed that he was just really congested and struggling to breath so we knew that he was coming down with something and decided to clear him out the best we could and give him some saline. He was up all night coughing but besides that he was doing okay. Friday was the same way but more congested and still up all night coughing. Saturday was a different story. By saturday evening he was retracting quite a bit and really congested. So I decided to take him to phoenix childrens urgent care where they checked him out and took him to the breathing area. They started him with an IV and did a deep suction and then did two breathing treatments and he still was not keeping his oxygen levels up and still retracting so they decided they want him to go to the hospital. So the ambulance came by and took him to PCH while I waited for Mike to bring me my clothes and then I headed down there. When I got there they already had him in a triage room and were doing some suctioning and they did a nasal swab to see what was going on with him and they also had him on quite a bit of oxygen. After about 30mins and a few x-rays the nasal culture came back positive for RSV. The mucus was so think that he just couldn't cough it up and it was so thick in his upper airways that he couldn't breathe through his nose. Finally they got us a room and started him on breathing treatments every 4 hours. 

Seth was in the hospital Feb 2-8th and honestly it was a really long time for me too. Friday when we finally go the okay to go home for the doctor and his pulmonologist we were so excited and Seth was so ready to go home. We now started treatments of albuterol and pulmocort morning and night and they ordered vest therapy as well so we  were just waiting on insurance to see what they would cover and then wait for it to arrive. After being home about a week we got his vest and he absolutely loves it. He laughs everytime he is in it which always makes it so much easier for us to do it because of how much he enjoys it. 

His first day back to school after RSV was valentines day and he got to play on the jiggle table and use his switch. It is his favorite thing. Here is a video of his cute self pressing the switch everytime the table shut off. When he presses it he starts to jiggle again. He is so stinkin cute!

Since RSV Seth has been off and on with some colds and school has just been really hard. He went from loving school to really just having a rough time. I honestly think it is the class size but there is nothing that we can do about that. He has been hitting his head way more than normal. Normally he would do it if he was bored or bugged but now he is doing it all the time even with his favorite things. He had a really good week last week and then he got the stomach bug and was puking all day friday and then sat/sun/mon/tues/wed/thurs we have been dealing with diarrhea. We started him on a probiotic but he is in a tricky situation with the diet he is on and trying to keep his ketones where they should be. Needless to say he has been pretty cranky since Friday but last night (wednesday) we got a full nights sleep which is the first in almost a week.  

The EEG

I honestly do not have a ton to say about the 24 hour EEG that we had at the end of October. Nothing really came from it. The last day (Monday) I was going to lose my mind. The Neurologist that made the rounds on Sunday as well came in and just was not the greatest. When she made her rounds on Sunday I showed her the video of Seth and what could possibly be a seizure. She said nothing and just went about her day and then when she came back in on Sunday with the team of docs and told me that he wasn't having any seizures and that she believes that he has reflux. If I knew that she was going to say that to me I would have never brought him in for that. I started crying and called Mike and he dropped the girls off at my moms and then headed down to the hospital. On his way he called Dr. Williams office and asked if he could take 20min out of his day and walk to Seth's room and tell us what is going on. I honestly did not think he was going to show up but sure enough 15 min after Mike got to the hospital he comes walking into the room. 

We showed him the video and he believed by what he was seeing that he was having a seizure and he mentioned the medicine that we were trying to get Seth off of before the diet (valporic acid) can cause breathing issues and different types of seizures. He believes that is what we were witnessing and has us go back on the medicine. He did say give the diet 3 months and if it seems to not be helping then we will take him off. If the diet does not help we can continue trying different medicines and see if any of those help, try a vagus nerve stimulator, split brain. He said that Seth will probably never be seizure free. So we have to come to a point to decide what we are okay with him having and to what point we get "no seizures" we do not want to drug him so much that all he does is lay there doing nothing but has no seizures. We want to keep as much of "seth" as we can while taking away as many seizures as we can. Seth has spasms (myoclonic jerks), tonic clonic seizures or what use to be called grand mal seizures lasting anywhere from 40sec to 2min and 30sec, and  tonic seizures which last around 20-40 seconds and it is just stiffing of the limbs. So of those we talk to Dr. Williams and we are going to try and stop the most severe ones which are the tonic clonic ones. Seth also has SUDEP (Sudden Unexpected Death In Epilepsy). SUDEP is more likely in people with: 

  1. Uncontrolled tonic clonic seizures
  2. Those who are taking multiple medications  to try and control the seizures
  3. Seizures that occur during sleep.
  4. Males and African-Americans
  5. Those who are not taking the adequate doses of antiepileptic medications

Seth fits under all of these but number 5. We have always made sure he is on the correct amount of medicine and when we forget to give him is meds we do it as soon as we remember. It is a very scary thing to think about. I have many nights where I do not even want to put him in his own bed to sleep because I want to be with him. I do not want to lose my little boy but I do what him to have the best life while he is here with us. I want him to be able to be alert and have fun not be on so many medications that he cant function. Mike and I and the doctors are still trying to figure out what the best thing for Seth is so if you think about it please pray for us and the doctors that we make the best decisions for Seth and what he needs.

Halloween.

This year we did not have anything huge planned for Halloween and Sydney really didnt feel that great so we just hung out at home. On Halloween Seth had his Halloween Party at school and he went as Jake from Adventure Time. Sydney and Ember got to come along and go trick-or-treating as well. All the kids got to go around the school and get candy and then each classroom had something different to do. There was a music room, cookie decorating and play dough, art room, dark room with different lights and stuff, story time room, and quiet room. We had a great time and all the kids loved it.
That night we just went around the neighborhood and then Seth was ready for bed and Ember just wanted the candy. After we got the littles to bed Sydney wanted to go back outside and pass out candy. It was a fun night just hanging around the house.