seth's mommy
06-22-2008, 09:14 AM
When he was three months old I noticed.
His forehead shot over to the right like it had slipped out of place, the doctors and the health visitors told us it was moulding from birth, twelve months on and I was still telling the doctors something is wrong with his forehead, and finally somene listened and refered us to a ns. He looked and told us what had happened but he didnt tell us the condition was called craniosynostosis, a word I have come to use in my everyday life. He also told us he could operate but didnt feel he needed it and to come back in a year and we would check it again, he ordered a ct scan and off we went. I wasnt happy.
later on I was reasearching fused sutures and found cranio kids, from here within a week I found that in England we have 4 specialist units that deal with this condition, Birmingham was our nearest. I went to see my gp and she immediatly referred us.
Forward a month and after the ct scan that was done in Sheffield and we arrived at Birmingham to see the consultant ns, he took one look at Seth and said he needs the op, I burst into tears, I always in my heart new he would, my husband tried to convince me he wouldnt but I knew. We were taken into a quiet room and Pete, one of the team, sat and talked us through the whole thing, and as we left I felt more at ease, these people knew what was needed and made us feel like it wasnt the end of the world.
So then we began our wait for a date for his op, we went on holiday in May (the first appointment had been in March) when we came back still no date, I emailed Pete and found out it would be the 17th June.
Right from here the hospital have been truly amazing, every last one of the staff that have dealt with us has been pleasant, informative and a pleasure to talk too. And if you reading Mr Noons,which Im sure you will be, your at the top of the list!!!
This man was a god send, he fed us all the infromation we ever could need about this op and after care and came to check on Seth most days after his op. So Pete, I thank you from the bottom of my heart.
The 16th came and we set of to Birmingham, scared shitless, is the only way I can explain, the journey was in silence apart from Seth singing in the back, bless him he hadnt a clue what was about to happen to him, and for that I was grateful he is only 2. We arrived and settled in to the ward, a busy bustling noisy place, with lots of really poorly kids, it was at this point I felt almost pleased Seth had cranio and not some other really awful disease/conditon like these poor kids did.
at tea time the aneathatist came to see us, a nice lady who explained what would happen the next day. She was relaxed and very profesional, I trusted her with my baby completely.
So, didnt sleep much that night although Seth did, he was awake early running around. At 8.30am they came and fetched us for theatre, the tears started and as I put him his gown on and carried him to theatre I could have truly carried him off and said forget the whole thing. Theatre was on the same floor so only a few seconds away from the ward, we arrived and he sat on my knee, bless him he saw the tubes from the anesthetic mask and shouted "hoover" we placed it over his face and he screamed in panic, three seconds later he hed gone to sleep, I passed him to the odp, and kissed him, I asked them to take care of him and left.
WE went for a walk into the town and wandered around in a daze, had some breakfast and went and bought Seth a teletubby, a charecter from one of his favorate programmes. Text some friends and told everyone Seth would be in surgery till 1ish. After a couple of hours wandering aimlesly around I felt the need to get back to the hospital, then we sat and drunk coffee for a few more hours and at 3.30 we went to fetch him back from theatre.
We walked in and there he was all tubed up he had one up his nose a drain coming out of his head one in his neck with lots of little ones coming off it, one in his hand and one in his foot, and of course his bandage. He didnt look too swollen although hs eyes did look very sore and bloody, his litttle face looked the same and he had his dummy firmly in his mouth, we spoke to him and stroked his hand but he didnt really respond much.
We got back to the ward and the nurses began there jobs, what amazing people they are. checking him every 30 minutes making sure he was comfy and warm, and without pain, he cried a few times but soon stopped at soon as I put my head on his tummy so he could feel my hair, then he stopped and slept. it stayed much the same the rest of the day, he had some water to drink but vomited after it three or four times the morphine they gave him made this happen.
That night I felt really strange , yes I was releived it was over, but now I had a sick nervous tummy and my heart was beating fast I felt again like I could run away, I cried, I felt useless, what could i do for him? nothing, we just had to wait till he started to improve, the nurse on duty that night was called Georgina, she made me a cup of tea and sat and talked me through this horrible feeling, after half an hour I felt a little better and thank god could see a light at the end of all this, she looked after us for four nights and became a friend, so to Georgina thankyou your an angel.
The next day the swelling in Seth's face was worse, mainly around his eyes, they were like little balls all red and shiny and shut his face had started to swell too, wednesday he was out of it most of the day, and we just sat with him constantly, just waiting for him to feel a little better.The swelling peaked and his face was really round.
Thursday was a big day for all of us, the first thing was for the little stiches to come out of his eyes, these had been keeping his eyes shut to protect them from the swelling etc, Pete came along and within a couple of seconds and a bit of crying from Seth they were out, he still couldnt open them but they did look much more relaxed. A few hours later his bandage was removed and his drain removed again he cried but it was vey short lived, he seemed much happier and wanted to scratch his head and face so we distracted him with songs and games. Not long after his morphine and drip was taken away, he had been given less morphine to wean him off it and now was taking oral medicine for pain.Once his drips had gone and he could move around even with eyes shut, he had a little walk up the ward, I held his hands and guided him around, it was funny cause when he heard some noise or other he would stop and listen turn towards the sound, later on that day his eyes opened the tiniest little bit, he lifted his head up to the light and smiled at us, my heart skipped a beat. He slept much better that night after his first bath which he loved, on his left side for the first time just like he does at home, and I slept too, by friday morning we both felt loads better, his eyes opened up more and that was it, he simply went back to normal. He walked aroound the ward the most of the day, I just followed him making sure he didnt bang into anything, and he loved it. He started eating more on friday and had loads to drink and the sickness stopped.
He did loose a bit of weight though but now we are home he will soon gain that back. on friday I knew we would be going home saturday morning because he was doing so well, its amazing how much they change in one day Its an odd feeling but everything they do for the first time after their op seems like they are doing it for the very first time, just as if he was a new born smiling for the first time, you tell eveyone!
So here we are sunday morning the first night at home was ok he woke about four times but soon went back to sleep, I left him a light on, as it was very dark and very quiet compared to the hospital, and it must have been odd for him not to be hearing all the sounds, machines bleeping etc.
He has done amazingly well my brave boy, I cannot beleive how little he fussed and just accepted everything that was done to him, he really is my little hero.
So thats it I must have missed some bits out but you get the idea, to anyone who is reading and has not yet had surgery, beleive me it will be ok, if I can do it anyone can.
It will be a very emotional journey for you and something you will never want to do again but you will cope, something just kicks in, and you manage.
Becky and my big brave boy Seth xxxxxxx
His forehead shot over to the right like it had slipped out of place, the doctors and the health visitors told us it was moulding from birth, twelve months on and I was still telling the doctors something is wrong with his forehead, and finally somene listened and refered us to a ns. He looked and told us what had happened but he didnt tell us the condition was called craniosynostosis, a word I have come to use in my everyday life. He also told us he could operate but didnt feel he needed it and to come back in a year and we would check it again, he ordered a ct scan and off we went. I wasnt happy.
later on I was reasearching fused sutures and found cranio kids, from here within a week I found that in England we have 4 specialist units that deal with this condition, Birmingham was our nearest. I went to see my gp and she immediatly referred us.
Forward a month and after the ct scan that was done in Sheffield and we arrived at Birmingham to see the consultant ns, he took one look at Seth and said he needs the op, I burst into tears, I always in my heart new he would, my husband tried to convince me he wouldnt but I knew. We were taken into a quiet room and Pete, one of the team, sat and talked us through the whole thing, and as we left I felt more at ease, these people knew what was needed and made us feel like it wasnt the end of the world.
So then we began our wait for a date for his op, we went on holiday in May (the first appointment had been in March) when we came back still no date, I emailed Pete and found out it would be the 17th June.
Right from here the hospital have been truly amazing, every last one of the staff that have dealt with us has been pleasant, informative and a pleasure to talk too. And if you reading Mr Noons,which Im sure you will be, your at the top of the list!!!
This man was a god send, he fed us all the infromation we ever could need about this op and after care and came to check on Seth most days after his op. So Pete, I thank you from the bottom of my heart.
The 16th came and we set of to Birmingham, scared shitless, is the only way I can explain, the journey was in silence apart from Seth singing in the back, bless him he hadnt a clue what was about to happen to him, and for that I was grateful he is only 2. We arrived and settled in to the ward, a busy bustling noisy place, with lots of really poorly kids, it was at this point I felt almost pleased Seth had cranio and not some other really awful disease/conditon like these poor kids did.
at tea time the aneathatist came to see us, a nice lady who explained what would happen the next day. She was relaxed and very profesional, I trusted her with my baby completely.
So, didnt sleep much that night although Seth did, he was awake early running around. At 8.30am they came and fetched us for theatre, the tears started and as I put him his gown on and carried him to theatre I could have truly carried him off and said forget the whole thing. Theatre was on the same floor so only a few seconds away from the ward, we arrived and he sat on my knee, bless him he saw the tubes from the anesthetic mask and shouted "hoover" we placed it over his face and he screamed in panic, three seconds later he hed gone to sleep, I passed him to the odp, and kissed him, I asked them to take care of him and left.
WE went for a walk into the town and wandered around in a daze, had some breakfast and went and bought Seth a teletubby, a charecter from one of his favorate programmes. Text some friends and told everyone Seth would be in surgery till 1ish. After a couple of hours wandering aimlesly around I felt the need to get back to the hospital, then we sat and drunk coffee for a few more hours and at 3.30 we went to fetch him back from theatre.
We walked in and there he was all tubed up he had one up his nose a drain coming out of his head one in his neck with lots of little ones coming off it, one in his hand and one in his foot, and of course his bandage. He didnt look too swollen although hs eyes did look very sore and bloody, his litttle face looked the same and he had his dummy firmly in his mouth, we spoke to him and stroked his hand but he didnt really respond much.
We got back to the ward and the nurses began there jobs, what amazing people they are. checking him every 30 minutes making sure he was comfy and warm, and without pain, he cried a few times but soon stopped at soon as I put my head on his tummy so he could feel my hair, then he stopped and slept. it stayed much the same the rest of the day, he had some water to drink but vomited after it three or four times the morphine they gave him made this happen.
That night I felt really strange , yes I was releived it was over, but now I had a sick nervous tummy and my heart was beating fast I felt again like I could run away, I cried, I felt useless, what could i do for him? nothing, we just had to wait till he started to improve, the nurse on duty that night was called Georgina, she made me a cup of tea and sat and talked me through this horrible feeling, after half an hour I felt a little better and thank god could see a light at the end of all this, she looked after us for four nights and became a friend, so to Georgina thankyou your an angel.
The next day the swelling in Seth's face was worse, mainly around his eyes, they were like little balls all red and shiny and shut his face had started to swell too, wednesday he was out of it most of the day, and we just sat with him constantly, just waiting for him to feel a little better.The swelling peaked and his face was really round.
Thursday was a big day for all of us, the first thing was for the little stiches to come out of his eyes, these had been keeping his eyes shut to protect them from the swelling etc, Pete came along and within a couple of seconds and a bit of crying from Seth they were out, he still couldnt open them but they did look much more relaxed. A few hours later his bandage was removed and his drain removed again he cried but it was vey short lived, he seemed much happier and wanted to scratch his head and face so we distracted him with songs and games. Not long after his morphine and drip was taken away, he had been given less morphine to wean him off it and now was taking oral medicine for pain.Once his drips had gone and he could move around even with eyes shut, he had a little walk up the ward, I held his hands and guided him around, it was funny cause when he heard some noise or other he would stop and listen turn towards the sound, later on that day his eyes opened the tiniest little bit, he lifted his head up to the light and smiled at us, my heart skipped a beat. He slept much better that night after his first bath which he loved, on his left side for the first time just like he does at home, and I slept too, by friday morning we both felt loads better, his eyes opened up more and that was it, he simply went back to normal. He walked aroound the ward the most of the day, I just followed him making sure he didnt bang into anything, and he loved it. He started eating more on friday and had loads to drink and the sickness stopped.
He did loose a bit of weight though but now we are home he will soon gain that back. on friday I knew we would be going home saturday morning because he was doing so well, its amazing how much they change in one day Its an odd feeling but everything they do for the first time after their op seems like they are doing it for the very first time, just as if he was a new born smiling for the first time, you tell eveyone!
So here we are sunday morning the first night at home was ok he woke about four times but soon went back to sleep, I left him a light on, as it was very dark and very quiet compared to the hospital, and it must have been odd for him not to be hearing all the sounds, machines bleeping etc.
He has done amazingly well my brave boy, I cannot beleive how little he fussed and just accepted everything that was done to him, he really is my little hero.
So thats it I must have missed some bits out but you get the idea, to anyone who is reading and has not yet had surgery, beleive me it will be ok, if I can do it anyone can.
It will be a very emotional journey for you and something you will never want to do again but you will cope, something just kicks in, and you manage.
Becky and my big brave boy Seth xxxxxxx