6/22-7/2/2009: NICU diagnoses with congenital CMV-enlarged liver and spleen-low platelets-kidney reflux-two holes in the heart ASD/VSD-severe periventricular calcifications-oxygen issues.
7/13/2009: Very first neurologist appointment with Dr. Bernes. No medicine needed at this time.
7/15/2009: Hematologist blood work
7/24/2009: First UTI needed antibiotic shot
8/25/2009: Uroligist and ultrasound still grade 4 on right and grade 5 on left.
9/9/2009: Cardiologist VSD closed ASD still open
10/28/2009: Hearing ABR hearing is good in both ears
10/30/2009: First Eye exam doctor said it was all neurological the eyes themselves are perfect.
11/3/2009: First EEG brain waves were abnormal so Dr. Bernes put him on preventative medicine Keppra.
12/5/2009: Rolls over for the first time.
2/11/2010: Circumcision and deflux gel balls in ureters.
2/12/2010: Infantile spasms started Dr. Bernes started him on Topamax.
2/18/2010: Eye Exam different doctor. Diagnosed with CVI (cortical vision impairment) and ONH (optic nerve hypoplasia.
3/17/2010: Started on the steroid Prendisone for Infantile Spasms (was having about 100+ a day) forgetting how to roll over
4/27/2010: Surgery for Tubes in ears along with ABR-hearing in right ear is normal slight hearing loss in left ear.
6/2/2010: Started to roll over again.
6/22/2010: Seth Turns 1
9/6/2010: Dr. Bernes starts him on a medicine called Sabril (Vigabatrin)
10/4-10/5/2010: Phoenix Childrens Hospital for surgery. Surgery to correct bladder and ureters which are causing the kidney reflux. (4 hour surgery)
1/14/2011: Neurologist appointment for increased spasms. Dr. Bernes started him on Klonopin.
3/19/-3/23/2011: Admitted into Cardons Childrens Hospital for pneumonia and needed oxygen. Had his first grand mal seizure while in the hospital.
4/11/2011: Pulmonologist-Albuterol as needed
4/20/2011: Gastro appointment. He told us that if his pneumonia was caused by aspiration then it will take his left possibly another time so we need to consider a g-tube for his medicine.
5/10/2011: Swallow Study
5/11/2011: Appointment with Dr. Grazino who will be the surgeon doing the g-tube placement.
6/16/2011: Crawled for the first time on the hospital bed waiting for his g-tube surgery
6/16-6/17/2011: Surgery for g-tube.
6/22/2011: Seth Turns 2
7/11/2011: Surgery for Tubes in ears along with ABR-hearing in right ear normal and severe hearing loss in the left year.
8/23/2011: First Hearing aid.
11/21/2011: Neurologist appointment Dr. Bernes put him on Depakene.
1/30/2012: One Hour EEG at Phoenix Children's Hospital
1/31/2012: MRI at Phoenix Childrens Hospital
2/1/2012: Dr. Bernes called to let us know the results from the EEG and the MRI. The EEG showed that he is constantly seizing while sleeping. So he is putting Seth on Valium 5mg at night to calm his brain down. He also said that according to the MRI Seth should never walk or talk. I asked about crawling and he said that he probably wont crawl. I told him that he has been crawling nonstop since September. He said according to the MRI he shouldn't but to keep doing what we are doing.
2/8/2012: Botox at Cardons Childrens Hospital
2/9/2012: Swallow Study
2/14/2012: Casts put on both feet.
2/28/2012: Second set of casts put on both feet.
3/12-3/13/2012: 24 hour EEG with Dr. Williams.
3/13/2012: Got his casts off his feet
5/2012: Surgery for Tubes in ears along with ABR- hearing in right ear normal left ear is still severe hearing loss.
6/22/2012: Seth Turns 3
7/5/2012: Urologist and Ultrasound
7/16/2012: MAG-3 and VCUG done at Phoenix Children's Hospital
8/13/2012: Seths First day of school
9/20/2012: Botox done at Cardons Childrens Hosptial.
10/1/2012: Started the Ketogenic Diet.
10/28-10/30/2012: 24 hour EEG study. Nothing new established.
11/21/2012: Neurologist-Dr. Williams 3 month blood check and ketogenic diet check-up
12/18/2012: Sleep Study with pulse ox at night
1/10/2013: Sleep Study again at Banner
1/31/2013: New Neurologist Dr. Jarrar appointment and she changed some medicine. Put him on ONFI and took him off Klonopin. (He ended up getting RSV the next day so we did not start the med change until he was better.)
2/2-2/8/2013: Admitted at Phoenix Children's Hospital because of low oxygen saturations due to RSV. Albuterol every 4 hours until no coughing for 2 days and continue on Pulmocort 2x daily.
2/13/2013: Pulmonologist appointment and Dr. put in orders for oxygen-pulse ox-vest therapy-suction machine to be at the home so we can avoid hospital unless it gets too serious.
2/13/2013: Received the Pulse ox and oxygen concentrator for the house.
2/21/2013: Received the Vest to start vest therapy at home. He gets 1-20min treatment in the morning along with the pulmocort and then 1-20min treatment at night along with the pulmocort.
3/4/2013: Started receiving 32hours a week of nursing for Seth.
3/12/2013: Received the suction machine for the house.
3/27/2013: Orthopedic Surgeon appointment with Dr. Segal. He wants Seth to get leg surgery (they would go in and extend the calf muscle so that he could get his foot to 90 degrees so that it would be more comfortable for him to stand.
4/11/2013: Neurologist 3 month appointment because of the ketogenic diet. Went over blood work and decided to stay on the diet for now until the meds are set then we can come off. We are to keep increasing the ONFI until 10mg BID and get completely off the depakene. (we are already off the klonopin)
4/25/2013: Hasn't urinated for 21 hours. Called the doctor and they told us to call into our urologist. They said if he continues to have urine retention and we cant get him to go then we need to take him into the ER.
4/26/2013: We got him an appointment with his urologist. The did an ultrasound to make sure nothing has changed with his kidneys. His left kidney is still enlarged but nothing different from before and there are no bladder stones or kidney stones. Dr. Bailey said that some kids like Seth deal with what is called neurological urine retention. He can come and go. They taught be how to give him a catheter so that if he goes beyond 12 hours I can cath him at home and avoid taking him into the doctor or the hospital.
5/2/2013: Emailed Dr. Jarrar to let her know what was going on with his urine and asked if any of this was from his medicine or if she thought it was just neurological. She believes it is from the ONFI she wants us to remain on the same dose for the next week and see if the urine retention goes away.
5/13/2013: I emailed Dr. Jarrar to let her know that we were still dealing with the urine retention and she decided that the ONFI is not going to work and that we need to come off of it. So we decided to go on Topamax as we are decreasing off the ONFi.
5/21/2013: Surgery for tubes in ears along with ABR-hearing in right ear normal and left ear remained the same with severe hearing loss
6/3/2013: Completely off the ONFI and still increasing the topamax
6/3/2013: Neurosurgeon appointment with Dr. Adelson. We are going to go ahead with the VNS (Vagus Nerve Stimulation) the surgery is scheduled for July 25 2013.
6/5/13: Had a grand mal seizure that was from 10:15-10:18 gave klonopin (emergency med) and seizure finally stopped at 10:21. Emailed Dr Jarrar to let her know.
6/6/2013: Dr. Jarrar emailed and she wants us to keep increasing Topamax until we get to the desired dose and increase his PM dose of Keppra from 500mg to 750mg.
7/6/2013: Noticed his g-tube was read around it and knew that he has never had an issue with his gtube site and thought he probably had an infection.
7/9/2013: Doctor did a swab of the gtube site because when pushed on green puss would come out. Put him on augmentin until the culture results come back.
7/16/2013: Got a call that the culture results came back as pseudomonas. So we were to go on Cipro.
7/23/2013: Suppose to start a second round of the Cipro.
7/29/2013: Had an appointment to see his gtube surgeon Dr. Graziano at 12:30 but my car battery died so we didnt make it to the appointment. Because of that they wanted us to go to our pediatrician. I got in at 3:30 with Dr. Leavitt and because the infection hasn't gone away he needs to be admitted. At 6:30pm the gastro Docs nurse called and said that the room is ready for him at PCH so we headed down there. They got everything they needed including all the background information and around 11:15pm they took us in the room to get his IV. Around 12:30am we finally were able to try and get some sleep.
7/30/2013: They did his first round of IV antibiotics (zosyn) at 6am and its every 6 hours. The attending came in and she thought that maybe there was an abscess and that he is going to get an ultrasound at 10:45am. We did all that and came back and just hung out for the day. Continued with the IV dosing.
7/31/2013: Still at PCH there is no abscess so we are just to continue with the IV antibiotics. Dr. Graziano came by and wants him on 72 hours of IV antibiotics and then he can go home on oral antibiotics.
8/1/2013: Continued the IV antibiotics and the doctor came and said that we could go home after his 6pm IV course if we felt comfortable and ten give him oral antibiotics. We got released that afternoon. We need to follow up with our pediatrician and his g-tube surgeon next week.
8/26/2013: Had an appointment with g-tube surgeon. She decided to change out the button. He had a mickey button and she changed it to a mini one button. She said it was a different type of plastic which seems to be better for some kids. Right now the infection is contained so he does not need anymore oral antibiotics right now. So we have a follow up in 4 weeks.
9/5/2013: We had an appointment to pick up his new AFO's orthotist stretched him too hard and he was in a lot of pain. After we got home his foot was swollen and he would cry if you touched it or tried to bend it.
9/6/2013: His foot is still swollen so called and get him into his orthopedic surgeon at 3:15. Dr. checked out his left foot and said that he tore is achilles tendon. Put him in a cast for 4-6 weeks.
10/3/2013: Got the cast off his foot.
10/18/2013: Started coming off the Ketogenic diet. Introducting small amount of pediasure for 2 weeks at a time until completely off the ketocal.
1/17/2014: Surgery for the VNS (set at lowest setting of .25) as well as surgery on both legs it is called Gastrocnemius Release.
2/3-2/9/2014: Staying at the Ryan House while we take the girls to California
2/8/2014: While at the Ryan House he starts struggling with breathing and 911 is called and he is sent to PCH went into Status for a little over 2 hours.
2/8-2/10/2014: PCH hospital stay for status (up'd the VNS 2x to .5 and then to .75)
2/12/2014: Removal of the casts from his legs following the surgery
2/20/2014: Saw Dr. Jarrar for the first time after the surgery (up'd the VNS to 1.0)
2/25/2014: Eye Appointment with Dr. Cassidy. The Optic nerves are turning grey in both eyes instead of being pink. His optic nerves are dying because of the seizure medicine SABRIL. Need to meet with Dr. Jarrar to decide if we stay on it or start coming off.
3/6/2014: Appointment with Dr. Jarrar (up'd VNS to 1.25) and wants us to make an appointment with palliative care Dr. Wendy. Coming off the Sabril medication because of the damage it is causing to his eyes. (Decrease PM dose by 2ml for a week then followed by the am dose for a week. Should be completely off around July 24th)
4/4/2014: Appointment with Palliative Care Dr. Wendy she was amazing. Wants to start him on Risperdal for the head hitting. Start at .25mg at night and after the first week increase to .50mg at night.
4/10/2014: Started Risperdal .25mg at night (noticed drastic decrease in the head hitting within the first few days)
4/17/2014: VNS adjustment with Dr. Jarrar (up'd VNS to 1.5) She said if we want we can come off the neurontin during the day since the risperdal is helping for the head hitting.
4/18/2014: Added in the AM dose of Risperdal .25mg
4/30/14: STOPPED the am dose of Risperdal because it was making him too sleepy.
5/16/2014: Appointment with Dr. Wendy.
5/16/2014: Appointment with Dr. Jarrar for Ketogenic diet and adjustment for the VNS. Need to get some blood work done for the diet. (up'd the VNS to 1.75) Next month he will be on the highest setting.