April 1, 2010
Mindanao Medical Center, Rm 310
General Santos City, Philippines
Our family is going the the most trying time of our life. At least I feel that I am. My son's been in this hospital since March 20 and it's been 12 days, the longest I've ever been inside a hospital. His seizures started when he was just 2-3 days old. I can't remember exactly because at the time, I was still in denial that something is wrong with my baby. Leon Andrei is the first boy to be born on my side of the family in 34 years. My parents bore 3 girls, with me as the youngest. Our eldest sister bore a girl, our second sister bore girl twins and my eldest is also a girl, so imagine the happiness that the whole family felt when we all found out that my second child is a boy! We were all anticipating. But having a baby boy in the family came with price. I brought him to the doctor 4 days after he was born and told the doctor about his seizure-like tendencies. The doctor was alarmed (although he didn't really show it to us) and ordered a series of lab tests. He suspected an infection passed on to the baby while I was still carrying him in my womb. I did have Urinary tract infection (UTI) diagnosed during my last trimester, but the infection could have been there way before that, it's just that I only had urine tests done on my 7th month. I should have done the test earlier so it should have been treated a lot sooner. Another factor that the doctor considered is my prolonged labor, my bag of water has leaked for about 13 hours before the baby finally came out.I gave birth at a small cooperative hospital due to lack of funds and they don't have a receiving pediatrician that will assess the baby as soon as it comes out. Then & there, the baby should have been given antibiotics to prevent complications.
5 days after giving birth, my baby was already admitted at the hospital. It was December 12, 2009. The cranial ultrasound report should that my baby had cerebral edema, meaning the brain was swollen due to the infection, or so the doctor says. Below is a photo of Eon's first hospital stay. I hated to see him being pricked by nurses. And the sad thing is, Everytime they inject his antibiotic, Forgram (Ceftriaxone) in his IV line, his IV site would get swollen, in the 10 days that we stayed in the hospital, he was pricked 9 times..
We stayed in the hospital for 10 days, but we were happy because we were discharged 3 days before Christmas, along with maintenance meds to prevent seizures from coming, and we were able to celebrate Christmas with our baby boy at home. Our eldest, who was only 13 months at that time, was ecstatic to see us come home, she was jumping up and down around the baby's crib and kept on shouting "baby!" "baby!", her very first audible word, we were surprised that she could say "baby" when she couldn't even utter "mama", or even "dada".
Adi loves her baby brother so much and we were amazed at her maturity, she seemed to understand that her baby brother was so fragile and she keeps watching over him especially when he's asleep.
A few days after we were home, the seizures came back, even if he's already taking Phenobarbital (his maintenance medication). We went to see our doctor and he ordered EEG (Electroencephalogram) to see brain activity and to find out whether he has epilepsy. We decided to go to Davao, a 4-hour drive from our city and to have a Child Neurologist take a look at Eon. We live in a small city and there are no practicing Child Neurologist around, even the EEG machine in the local hospital was not working. The EEG came out normal, relieved as we were, we were still baffled why he was having seizures when the doctor says that the edema is gone and that the EEG is normal. We were back at square one.
This is Eon during his EEG test. I was feeding him so he would go to sleep but he just wouldn't, so he was awake the whole time his EEG was taken.
Dr. Gilda Fernandez-Agbisit, is the Child Neurologist recommended by our Pediatrician, Dr. Babar, wasn't convinced that Eon had cerebral edema. She wanted me to come back after a week with the ultrasound result and hospital records during his confinement. She also ordered additional lab tests. We went back to Gensan that night, along the way Eon had another bout of seizure.
The following day, December 30, Eon had 4 seizure attacks and it was still before noontime. I called Dr. Agbisit and she advised to have him hospitalized. I prayed, long and hard. The whole family prayed, we can't afford to go to the hospital just a week after being discharged, aside from the fact that we don't want to spend New Year at the hospital. At noon, Eon slept and miraculously, the seizures stopped coming. We thanked God for his divine intervention and we decided not to go to the hospital against doctor's orders. He had occasional mild seizures for about two weeks after that and it stopped coming altogether. He was taking Phenobarbital every 12 hours. For two months straight. Eon was seizure free and we were very thankful. Although we are still financially crippled (I stopped working since I gave birth), we were able to get by with my husband's meager income and with my part-time online work as researcher and data encoder.
CHAPTER II
We had regular weekly visits to our local Pediatrician, Dr. Norman Babar and he was closely monitoring Eon's development. He was also glad to know that Eon is not having seizures anymore and advised that he can stop taking Phenobarbital by February 15. Around the first week of February, we ran out of his pills and I decided not to buy anymore because February 15 was just around the corner (My first big mistake). On March 1, the seizures came again. Eon was hospitalized in order to give him Phenobarbital intravenously. The whole time we were at the hospital, Eon did not have a single seizure attack. We only stayed in the hospital for 2 days and we were discharged.
March 18, 2010. Eon started having seizure spells again. He started having 3 seizures a day. I did not take him to the hospital right away, first because I thought it would just go away the following day, and second, we really had no money anymore. I called our Dr. Babar and he advised to put Eon on Hep-lock. it's a small tube connected to the vein so he can be given medicine intravenously without having an IV line. That way, Eon can be treated as an out-patient. I also called the our Pedia-Neurologist, Dr. Agbisit, and she strongly advised to have Eon admitted instead of just putting a hep-lock on. This is where my second big mistake came in, I decided to have Eon treated as an out-patient and decided on the hep-lock. The following day, the seizures kept coming even if he was just injected with his medicine. He had 10 seizures in just 4 hours and that was when we decided to take him to the hospital.
They had to put oxygen and the doctor ordered that no milk should be given because of the danger that Eon might choke during one of his spells.
The dosage for his medicine was increased yet it did not help in controlling his seizure attacks. The seizures continued to come, and we were asked to record the time and the duration of the seizures. The seizures would come at 15-20 minute intervals lasting for 2 minutes. In just 16 hours, Eon has had 30 seizures already. The Pediatrician, Dr Babar, ordered that Eon be given Dilantin (Phenytoin) in addition to his Phenobarbital so the seizures can be controlled, since our Child Neurologist lives in Davao, we had to ask for a local Adult Neurologist (the only one in our city), Dr. Decolongon to work on Eon. A CT-Scan was ordered to see if he has any brain tumours which might be causing the seizures. We took him to another hospital to have his Cranial CT-Scan, it was the longest ride of my life.. I was so afraid of what the results might be, what if it were positive? Would I be able to deal with it? They put Eon on Valium so he is fully sedated during his CT scan and so he wouldn't have any seizure attacks. I was already worried with the amount of medicines they're injecting inside his tiny body and what kind of side effects it would bring..
Thankfully, I was allowed inside the CT-Scan room and I took this picture while waiting for the technician and when the nurse wasn't looking
We waited for the results for 12 hours, and the whole family was praying the whole time. The night before, Pastor Sagabay with his wife came and annointed Eon with God's Blessings, there, The Pastor made us understand that it is all in God's hands and that whatever happens, Eon will be safe and secure. That same night, I prayed so hard asking God to spare Eon from any more pain and suffering, and I claimed God's promise in Matthew 7:7 that says, "Ask and it shall be given..." I asked God to give me Eon, fully, and wholly, and not as a vegetable. I asked God that if Eon were to survive this phase of his life, He would allow Eon to live his life fully, able to walk, and talk, and not allow Eon to become a vegetable after all this, I told God that I would accept it if he would rather take my baby than allow him to live a life of suffering. That night, I surrendered everything to God.
During Eon's Annoinment
Finally, the results came in, The Neurologist, Dr. Decolongon, explained that there were no signs of a brain tumour and we were so relieved. However, he also suspected Microcephaly,and we were not surprised as that was also Dr. Agbisit's suspicion when we first brought Eon to her, Microcephaly is a condition where the brain is small and fails to grow at a normal rate. But they also said that its too early to tell and reiterated that it is just a suspicion. Again we were crushed, but I was already beginning to absorb that Eon might have Microcephaly and I was already thinking of ways on how to help him as he grows. I tried to accept the fact that Eon might not be able to live a life like other kids. But then I remembered God's promise, and I remembered that I asked God to give me my Eon in whole, normal and healthy and suddenly I felt light hearted. Deep inside my heart I felt that they are mistaken. I made a mental note to have a second opinion as soon as we get out of this hospital.
The seizures continued to come and there is no improvement with Eon's condition. It was then that I mustered the courage to ask Dr. Decolongon to please contact the Child Neurologist, Dr. Agbisit in Davao and ask for her opinion. We were told to ready ourselves just in case the advise would be to transfer Eon to Davao via Ambulance, and we were ok with it, we were even considering to fly Eon to Manila no matter what the costs would be. Luckily, Dr. Agbisit advised to have Eon on Depacon, (Sodium Valproate) a seizure medication just recently approved by the Bureau of Foods and Drugs to be administered in the Philippines. The medicine was not available in the hospital where we were staying and we had to look for it in other hospitals in the city, fortunately, there were some available in another hospital and we started on the medication. 2 days later, there were signs of improvement, the seizures came less frequently and now, 5 days later the seizures stopped altogether.
It is now April 1 (Good Thursday) and we just got news that if Eon does not have any seizures within the next 24 hours, we would be discharged. I feel elated, I'm sitting here now in the hospital room and decided to write since Eon is fast asleep and my husband is sleeping beside him. A few moments ago our Ninang (Godmother), Mrs. Aspe came in and offered a prayer for Eon and for the whole family. I am so thankful, and she even left some cash to help us with our expenses. Hopefully, we would be able to get out before the week ends. But since it is a Holiday today until tomorrow we might not be able to be discharged until Monday.
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