It finally took awhile to write things down but here it finally is. Most of my friends and family know that a week before Christmas 2016 on 17 December, that day was probably one of the worst days of my life. It was a day where i felt so helpless and for a fleeting second i thought i lost my baby boy Lennox.
Warning: this is a long post!!!
The day started off as any regular Saturday. Jürgen went off for taekwondo training around 10am and i spent the morning with Lennox playing and he usually takes a nap after lunch. He had a little cough since the night before but other than that he was his usual bubbly self the whole morning.
Drowsy after a bath and lunch, i brought Lennox to bed and started breastfeeding as usual. He took awhile to totally nod off which was normal, but i noticed then that his whole body started to slightly shiver. I'm actually looking at texts that i sent to Jürgen at 1258pm that day; i told him about the shivering and that his teeth were chattering although he was sleeping. I also told him that he didn't feel warm to the touch so i totally didn't think of fever at that moment. We were even saying that maybe we should get a hot water bottle since he was shivering and feeling cold. Jürgen was on his way back from training and would be home in 15 mins.
Seizure #1
But then things started to become really scary. Lennox's eyes suddenly opened then looked up and rolled to the back of his head. Then his body was stiff and his arms (and maybe also legs - it happened so fast i really can't remember) started to shake. I carried him and got off the bed and started to call out his name. "Lennox Lennox Lennox wake up." Then i called Jürgen and put him on speaker and just told him that Lennox was shaking "what should i do what should i do he's not reacting what should i do" and i remember starting to cry but also holding Lennox and calling out his name and telling him to open his eyes. Oh man. Just typing this now gives me the shivers.
After what felt like an eternity (probably 3-4 mins), Lennox suddenly stopped shaking and his body fell totally limp, and his eyes closed. I again tried to prop him up, calling out his name but his body was limp and non responsive for another 3-4 mins or so. He was so heavy to carry the body was just listless. Finally he slowly opened his eyes and was just quiet and resting on me. Jürgen also finally got home around this time. I had composed myself by then and just kept on checking that Lennox was breathing and ok - he was just so weirdly quiet and still, although his eyes were open.
I probably sat with him for half an hour and we called the emergency line at the hospital to ask what we should do. They told us to come in so Lennox could get checked. By that time it was around 230pm. We decided to go after Jürgen had a quick bite to eat and Lennox wanted to eat and drink as well, which we saw as a good sign. Only then i noticed that he was heating up so i put a cooling patch on his forehead to try to cool him down.
Once we were at the hospital he got checked and had a fever of 40.2 degrees. He was hot to the touch and was just irritable and uncomfortable. We were told it was probably a febrile seizure which happens to kids and not to be too worried. We were told he might have a ear infection that caused the fever, so we got some antibiotics and paracetamol suppositories from the hospital pharmacy and were allowed to go home. We could give him the medicine at home. We were home around 5pm and Lennox was sleeping in his stroller so we just let him be. Jürgen and I also used the time to take a nap ourselves after the long afternoon.
#Seizure 2
Around 6pm we awoke when Lennox called out for me. He seemed like he was back to himself just abit grouchy from the fever. And he signed the word 'eat' and said "mamam". So i got him some water and started to feed him a kiwi while he sat on my lap. All seemed to be back to normal. He was also saying 'lagi' (more') when he wanted more kiwi.
Halfway through the kiwi, while still sitting on my lap, Lennox's whole body suddenly jumped (as though he was shocked by something) and i jumped and laughed as well because it caught me by surprise. 'Oh you gave me a shock Lennox' i said. And only 2 seconds later i realised that Lennox was having another seizure, this time quite a different one from the first.
His eyes were looking up and right to the corner of the room (instead of rolling to the back of his head previously). He was unresponsive again; he was not shivering/trembling but his right eyebrow was twitching. This time since the seizure was more subdued I didn't panic like how i did just hours earlier. Then we decided to give him the suppository (and i was thinking that we should have given it to him earlier, but i didn't want to wake him up from his sleep). We immediately called the emergency hospital line again as they said to call immediately if he gets another seizure within 24 hours.
We were put on hold (annoyingly) for almost 10 mins and during that whole time Lennox did not react to his name being called. Jürgen was carrying him at this time and although his left arm was moving and touching Jürgen's face repeatedly, he was still out of it and was not responsive. When we finally got through they asked us some questions about what was happening and told us to get to the hospital soonest.
I think we were back in the hospital by 730pm and that's when they told us that they want Lennox to stay overnight because 2 seizures in such a short period of time was not common with febrile seizures. Being 28 weeks pregnant it was tough for me because it had already been a long day, but since only 1 parent was allowed to stay over i was sure that I wanted to be with him that night.
Hospitalised for 2 nights
Hospitals suck. I never liked them; the smell, the lights, the sounds coming from machines etc. Since we came unprepared to stay the night, Jürgen went home after dinner (which was pizza delivered to the hospital) to pack some things for Lennox and I. Lennox was beat so he was sleeping through most of the early evening. He had a sticker with wires attached to his big toe and some other wires stuck on his chest to check on his heart rate, pulse etc. He just looked for small and helpless on that hospital bed that night :(
Every 6 hours his fever was checked and he was given a suppository which was always a struggle. The doctor also came in a few times to get the story straight about the seizure. They really wanted details of what happened, which is difficult to remember everything at that moment. They mentioned that if it happens again to record it so they could actually see what was happening.
The next day was a Sunday and it was basically a day of waiting :\ Nothing much happened other than the periodic checks on his temp and food intake. And everytime we asked if a doctor would come in they said they were coming soon and thinking of a course of action to take. Lennox was just groggy from the fever and watched the iPad almost the whole day (since he also was too weak to walk/stand and had all these wires attached to him).
Only around 4pm we heard that the docs wanted to do MRI test for him which was not possible at Flevoziekenhuis (the hospital we were at in our city of Almere) and it probably had to be done at the VU hospital in Amsterdam. But other than that we didn't get more info and were asked again to stay another night.
By Sunday night i was beat!! As much as i wanted to stay with Lennox, i told Jürgen to take over parenting duties that night in the hospital and i got a much needed rest at home that night.
Monday morning came and they drew some blood and urine from Lennox to do further tests. Still we didn't hear more from the doctor other than that it was taking awhile because they had to coordinate things between the neurology department which was different from how they do things with paediatric department. I think being in Holland really made me patient with all these things, in Singapore parents would probably have thrown a fit if things were so inefficient -_-
Lennox was feeling somewhat better and played a little with the toys we brought, but because he was stuck to the wires he couldnt freely move around which must have been so frustrating for him. I kept asking the nurse if we could go back home coz they were not doing anything in the hospital either and we could just wait for appointments for the MRI or other tests at home. Thankfully they agreed that Lennox was stable and that we could go home. We would get a call for the appointment with the pediatrician sometime during the week.
Oh man the comfort of being home. Although Lennox was sick it just felt so much better that we could be home to get better.
Pediatric check up and EEG test
On Thursday, Lennox was better. He only had a remainder cough and cold and we had an appointment with the paediatrician. She basically gave us a quick low down on febrile seizures and answered all questions that we had. She also gave a prescription for diazepam which we could administer if the seizures happened again. One always had to be with him, and other extra at home.
The biggest things i got from her about the febrile seizures was:
To be continued....
Warning: this is a long post!!!
The day started off as any regular Saturday. Jürgen went off for taekwondo training around 10am and i spent the morning with Lennox playing and he usually takes a nap after lunch. He had a little cough since the night before but other than that he was his usual bubbly self the whole morning.
Drowsy after a bath and lunch, i brought Lennox to bed and started breastfeeding as usual. He took awhile to totally nod off which was normal, but i noticed then that his whole body started to slightly shiver. I'm actually looking at texts that i sent to Jürgen at 1258pm that day; i told him about the shivering and that his teeth were chattering although he was sleeping. I also told him that he didn't feel warm to the touch so i totally didn't think of fever at that moment. We were even saying that maybe we should get a hot water bottle since he was shivering and feeling cold. Jürgen was on his way back from training and would be home in 15 mins.
Seizure #1
But then things started to become really scary. Lennox's eyes suddenly opened then looked up and rolled to the back of his head. Then his body was stiff and his arms (and maybe also legs - it happened so fast i really can't remember) started to shake. I carried him and got off the bed and started to call out his name. "Lennox Lennox Lennox wake up." Then i called Jürgen and put him on speaker and just told him that Lennox was shaking "what should i do what should i do he's not reacting what should i do" and i remember starting to cry but also holding Lennox and calling out his name and telling him to open his eyes. Oh man. Just typing this now gives me the shivers.
After what felt like an eternity (probably 3-4 mins), Lennox suddenly stopped shaking and his body fell totally limp, and his eyes closed. I again tried to prop him up, calling out his name but his body was limp and non responsive for another 3-4 mins or so. He was so heavy to carry the body was just listless. Finally he slowly opened his eyes and was just quiet and resting on me. Jürgen also finally got home around this time. I had composed myself by then and just kept on checking that Lennox was breathing and ok - he was just so weirdly quiet and still, although his eyes were open.
I probably sat with him for half an hour and we called the emergency line at the hospital to ask what we should do. They told us to come in so Lennox could get checked. By that time it was around 230pm. We decided to go after Jürgen had a quick bite to eat and Lennox wanted to eat and drink as well, which we saw as a good sign. Only then i noticed that he was heating up so i put a cooling patch on his forehead to try to cool him down.
Once we were at the hospital he got checked and had a fever of 40.2 degrees. He was hot to the touch and was just irritable and uncomfortable. We were told it was probably a febrile seizure which happens to kids and not to be too worried. We were told he might have a ear infection that caused the fever, so we got some antibiotics and paracetamol suppositories from the hospital pharmacy and were allowed to go home. We could give him the medicine at home. We were home around 5pm and Lennox was sleeping in his stroller so we just let him be. Jürgen and I also used the time to take a nap ourselves after the long afternoon.
#Seizure 2
Around 6pm we awoke when Lennox called out for me. He seemed like he was back to himself just abit grouchy from the fever. And he signed the word 'eat' and said "mamam". So i got him some water and started to feed him a kiwi while he sat on my lap. All seemed to be back to normal. He was also saying 'lagi' (more') when he wanted more kiwi.
Halfway through the kiwi, while still sitting on my lap, Lennox's whole body suddenly jumped (as though he was shocked by something) and i jumped and laughed as well because it caught me by surprise. 'Oh you gave me a shock Lennox' i said. And only 2 seconds later i realised that Lennox was having another seizure, this time quite a different one from the first.
His eyes were looking up and right to the corner of the room (instead of rolling to the back of his head previously). He was unresponsive again; he was not shivering/trembling but his right eyebrow was twitching. This time since the seizure was more subdued I didn't panic like how i did just hours earlier. Then we decided to give him the suppository (and i was thinking that we should have given it to him earlier, but i didn't want to wake him up from his sleep). We immediately called the emergency hospital line again as they said to call immediately if he gets another seizure within 24 hours.
We were put on hold (annoyingly) for almost 10 mins and during that whole time Lennox did not react to his name being called. Jürgen was carrying him at this time and although his left arm was moving and touching Jürgen's face repeatedly, he was still out of it and was not responsive. When we finally got through they asked us some questions about what was happening and told us to get to the hospital soonest.
I think we were back in the hospital by 730pm and that's when they told us that they want Lennox to stay overnight because 2 seizures in such a short period of time was not common with febrile seizures. Being 28 weeks pregnant it was tough for me because it had already been a long day, but since only 1 parent was allowed to stay over i was sure that I wanted to be with him that night.
Hospitalised for 2 nights
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| His first night in the hospital :( |
Hospitals suck. I never liked them; the smell, the lights, the sounds coming from machines etc. Since we came unprepared to stay the night, Jürgen went home after dinner (which was pizza delivered to the hospital) to pack some things for Lennox and I. Lennox was beat so he was sleeping through most of the early evening. He had a sticker with wires attached to his big toe and some other wires stuck on his chest to check on his heart rate, pulse etc. He just looked for small and helpless on that hospital bed that night :(
Every 6 hours his fever was checked and he was given a suppository which was always a struggle. The doctor also came in a few times to get the story straight about the seizure. They really wanted details of what happened, which is difficult to remember everything at that moment. They mentioned that if it happens again to record it so they could actually see what was happening.
The next day was a Sunday and it was basically a day of waiting :\ Nothing much happened other than the periodic checks on his temp and food intake. And everytime we asked if a doctor would come in they said they were coming soon and thinking of a course of action to take. Lennox was just groggy from the fever and watched the iPad almost the whole day (since he also was too weak to walk/stand and had all these wires attached to him).
Only around 4pm we heard that the docs wanted to do MRI test for him which was not possible at Flevoziekenhuis (the hospital we were at in our city of Almere) and it probably had to be done at the VU hospital in Amsterdam. But other than that we didn't get more info and were asked again to stay another night.
By Sunday night i was beat!! As much as i wanted to stay with Lennox, i told Jürgen to take over parenting duties that night in the hospital and i got a much needed rest at home that night.
Monday morning came and they drew some blood and urine from Lennox to do further tests. Still we didn't hear more from the doctor other than that it was taking awhile because they had to coordinate things between the neurology department which was different from how they do things with paediatric department. I think being in Holland really made me patient with all these things, in Singapore parents would probably have thrown a fit if things were so inefficient -_-
Lennox was feeling somewhat better and played a little with the toys we brought, but because he was stuck to the wires he couldnt freely move around which must have been so frustrating for him. I kept asking the nurse if we could go back home coz they were not doing anything in the hospital either and we could just wait for appointments for the MRI or other tests at home. Thankfully they agreed that Lennox was stable and that we could go home. We would get a call for the appointment with the pediatrician sometime during the week.
Oh man the comfort of being home. Although Lennox was sick it just felt so much better that we could be home to get better.
Pediatric check up and EEG test
On Thursday, Lennox was better. He only had a remainder cough and cold and we had an appointment with the paediatrician. She basically gave us a quick low down on febrile seizures and answered all questions that we had. She also gave a prescription for diazepam which we could administer if the seizures happened again. One always had to be with him, and other extra at home.
The biggest things i got from her about the febrile seizures was:
- the chances of Lennox getting a febrile seizure again when he gets sick/a fever is 50%. If it does happen, then the next time after that, the chances of a seizure would go up and up. Basically this means: the more seizures he has, the more seizures he will get.
- Febrile seizures do not affect the brain. Although things might look scary it doesn't do any damage to the brain
- there's no real way to stop a seizure from happening. While many parents have told me to quickly bring down his temperature or giving his meds if i feel that a fever is coming, that would STILL not stop a seizure from happening. Medical research has proven this. --> This point especially made me feel better because after the 1st seizure we were beating ourselves up for not giving him the suppository earlier, and we thought our oversight led to the seizure #2. But that is not so at all.
This was just relating to febrile seizures. But because Lennox had a second one so quickly after the first and it was a drastically different kind of seizure, they wanted to do further tests to check that it was not something else like epilepsy. The EEG test was scheduled for the next day.
For the EEG test, we were brought into a room and Lennox had to wear this funny looking swim cap (which he hated) and there were wires coming out of it. They also had to put in some sort of gel (the same gel they use on the tummy during ultrasounds for check up) on his head (which he also hated). Coupled with the fact that he was sleepy it was a real struggle to get things set up on his head. Thankfully he was allowed to breastfeed and sleep if needed, and the test could go on for the next half hour or so.
 |
| He fell asleep at the boob. You can't see the wires in the pic but there were at least 6-8 wires beside us |
I was breastfeeding him for about 10 mins and he fell asleep in my arms. The test was still going on and i had abit of a rest as well. After about 15 mins the doctor put on some sort of disco light thing which was flickering probably 100 times a minute (which was SO annoying for me haha) but Lennox slept through it. Then i was asked to gently wake him up so that they could measure readings while he was awake. It went pretty ok and soon after the test was done and we would wait for a week for the results via the telephone.
They also made an appointment for us to see the children's neurologist for 7 february. Yes only at 7 february(!!!) which was more than a month away!!! (i told you i became more patient since i came to Holland)
To be continued....
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