mrs j
01-08-2008, 06:47 PM
Bradley is the last and final addition to my family. Roy was serving in Irac when i found out i was pregnant with him. He'd been out there 3wks, and i can tell you, it was a big surprise, a pleasent one but a big surprise. I had a difficult pregnancy as i nearly miscarried him, and had to take daily injections to thin my blood, i hate needles. A couple of weeks after my big 20wk scan, i was having a usual checkup, they did a small scan to check his position and size, well, i can tell you i got the biggest shock, i was told there was fluid on the left side of his brain, and i was sent to another dr who did another big scan, he told me it was hydrocaphelous (dont think thats spelt right) and that if it didn't correct itselft, he would need a shunt put in and could have big problems when he was born, i remember coming home from the hospital in absolute despair, Roy wasn't here, what was i to do, i struggled over the next couple of days beating myself up as to whether i should tell Roy or leave it until he got home, well i ended up telling him, just completely broke down. He was shocked, and i felt bad for putting this worry on him while he was dealing with being away from home in such rotten conditions. I had to go back in another 4 wks to check Bradley's fluid, terrified i made the trip to hospital, i was absolutely shaking with fear, i had the scan, and was told everything was great, the fluid had gone, im thinking omg how can something like this disappear, i was told that this can happen sometimes, if it isn't a large amount of fluid it can just disperse itself, i was absolutely over the moon, couldn't believe it, id spent the past 4 wks basically in isolation, i shut myself away from everyone, terrified, and now i could see light at the end of the tunnel, the rest of my pregnancy was fine, apart from being in absolute agony as Bradley was sitting on all my nerves. Roy got home from Irac a month before Bradley was born, so that was a massive relief. Bradley was breech the whole way through my pregnancy, so my ob wanted a planned c-section, which terrified me, my other 3 were normal deliveries and the thought of them doing a c-section just scared the life out of me. Well, i was admitted a week before my due date, they did a scan and found that he had turned round at the last minute, thank god, said i, but my ob still wanted a controlled birth so i was induced the following day, after quite a difficult labour, Bradley didn't want to come out, he was born weighing 7lbs 5ozs, i was so chuffed, my little boy had made it, and i have to say, he was the first one that looked like me, as the other 3 look like their daddy. I noticed straight away that his head looked a bit squashed, i asked the midwife about it and she said it was normal delivery moulding, and that it would settle after a few days, huh, little did we know then.
Bradley was admitted to hospital when he was 12 days old, he was having severe breathing difficulties and wasn't too well, we were told that he had caught a cold and that some babies just have these difficulties if they catch a cold so young, he was on oxygen therapy for 10 days, and we were told that because he had these lung problems so young that he would probably end up having asthma, and true enough he has it quite severe. We took him home, and it felt like we were bringing him home for the first time, wonderful.
I took Bradley for his baby jabs when he was 8wks old, they were a little later than normal, but he took a while recovering from his illness, so my dr didnt want to give him his jabs before 8wks. My gp did the usual well baby check and said he was fine for his jabs, so off we went into our health visitor, she straight away mentioned his head shape and came over to feel it, she then said that his soft spot was closed, she called in our dr, who then agreed and said we would need to be referred for an xray, i thought to myself, what the hell are you talking about, the nurses at the hospital never mentioned it.
Bradley was seen by the same dr at the hospital who had looked after him when he was in with his breathing problems, now, she never mentioned about his head when he was in, but now all of a sudden, she could see that he had metopic cranio, she then went on to tell us that he would probably need surgery and if not corrected problems could occur, he was sent down for an xray, he was 4 months old.
Well, you can all remember the first time you heard those words "craniosynostosis", i couldnt get my head round it, id never heard the likes of it in my life, Roy and i went straight home and onto google, after scaring ourselves half to death, we decided to put it to the back of our minds until we got the xray results. The months passed and we never heard a thing until a letter came through the door asking Bradley to attend an appointment with a neurosurgeon, i nearly hit the floor,wasn't expecting that at all, Bradley would of been 9mths at this appointment, but the appointment was cancelled and put back, then that one was cancelled and put back, it was cancelled and put back 4 times altogether and Bradley was 18mths when he finally got to meet the neurosurgeon.
We were told the basics of it, the neurosurgeon didn't tell us anything other than it can cause some problems and that he highly recommended surgery, we were told that we needed to see all the other usual specialists and that we shouldn't book any summer holidays as he wanted surgery to be done within the following 8wks.
Well the rest is history, we never got our surgery date, i had to chase up the other appointments for a ct scan, genetics and eyes, as we never recieved anything.
We went back to see the neurosurgeon in march last year to be told that he couldn't find the ct scan results, so we were packed off again, we went back again in october last year, we were supposed to be meeting the facial surgeon as well, we were left sitting in the waiting room for 3 hrs, he didn't show up, neurosurgeon just couldnt get a hold of him.
So we went home again, feeling so angry and frustrated i went onto the net, and i came across craniokids, here i was put in touch with a different hospital in England, i didnt even know that we could go to another hospital without being referred.
So within 2wks of contacting oxford, we were given a date to go over and see the craniofacial team, and within 5wks, we were seen, i just couldnt get over the difference, we were given so much information that we weren't given before, we got to see Bradleys ctscan, they totally amazed us, we were told, that the surgeon knew that children who have metopic cranio, definately have a lack of blood supply to certain parts of the brain, and that the brain isn't happy being forced into such an abnormal shape, Bradleys eye problems were probably caused by the cranio, but surgery now wouldn't correct them, and that Bradleys ridge down his forehead was quite severe, they were very concered by the pains he has been suffering from, they aren't headaches as such, but more of a pain down the ridge on his forehead, it was just such a relief to be told all this, but devastating at the same time.
Bradley's surgery is booked for the 14th February 2008, and after nearly 3yrs with this hanging over us, it cant come quick enough.
Its been such a hard couple of years, and i feel now that im going to explode with emotion, and its Bradley that keeps me going, his smile lights up a room, and i dont want that to ever change.
I will update this when we are at the other side.xx
http://i215.photobucket.com/albums/cc319/bradleyandkirsten/2004-2005100.jpg http://i215.photobucket.com/albums/cc319/bradleyandkirsten/BRADLEY1.jpghttp://i215.photobucket.com/albums/cc319/bradleyandkirsten/BRADLEY2.jpg
Well here we are, 5wks post op, and things couldnt be better. I thought it was about time i finished Bradley's story.
We arrived at the hospital just after tea time, we were told Bradley needed bloods done to check his white cell count as he had suffered a bit of vomiting during the previous week, fair enough i thought, doing those bloods was horrible, watching Bradley being pocked and pocked was heartbreaking, they had trouble finding a vein, i was thinking to myself, how the hell am i gonna put him through this surgery when a simple blood test was pushing me to a breakdown, they finally got a vein, and within seconds Bradley was fine. We were sent up stairs to our accommodation, and what a night that was as we were told that if anything came back in his bloods, surgery might have to be cancelled. We came back onto the ward on Tuesday morning to be told his bloods were clear, and that he needed another blood test done to check for clotting and all the other things they need for surgery. He had bloods done again, and as stressfull as it was, they managed to get a vein first time.
We were taken round the hospital for all Bradleys appointments, eyes,hearing, development,and thankfully everything was fine, we were then told that his second round of bloods had shown some sort of clotting problem, they needed to do another blood test and we were also told if they couldnt get to the bottom of it they would need to cancel surgery, so, yet again, we were hanging in limbo, meanwhile we had our chats with the clinical nurse, who, i have to say was amazing, she asked us did we tell Bradley much about what was to happen, we said we had tried but he wasnt interested, so, she had a chat with Bradley, he wasnt very interested, she showed him a doll that had everything on it that Bradley would have when he came out of surgery, they use this doll for older children who can understand a bit more of whats going on, the doll was a big shock for me and Roy, as this was the first time we could really visualise what Bradley would look like, Bradley didnt like it much, he played with the drainage tubes but the one thing he didnt like was the catheter, funny thinking of it now, typical man i suppose. We also had our chat with the surgeons, it was extremly difficult, i couldnt even sign the consent form and poor Roy had to sign it as i got myself into such a state, i just couldnt sign the paper work. It was a very difficult day, emotionally i was completely drained already. His bloods came back, surgery could go ahead, he had the same conditon i have, his blood was thickening too quick, this is why i had suffered several miscarriages and why i had to take injections to thin my blood while pregnant with Bradley. They said it meant slightly more risk during surgery, but they would allow for it and would be more vigilant during surgery. Things were finally given the all clear, what else is gonna go wrong, thats what was going though my mind. We were sent to our accommodation for the night before surgery, Bradley was kept on the ward as they wanted to moniter him throughout the night, so i stayed with him, i didnt sleep much, but Bradley slept like a log.
Morning of surgery.
Roy came down to his room around 6ish, he couldnt sleep either, Bradley woke in good form, and wasnt really asking for any juice or anything to eat thankfully, he was given another dose of his steroids, he had been given these over the last 2 days to help with swelling. We just sat around waiting for the staff to take Bradley, i was staring into space, my husband was finding it very hard, pacing up and down the room, he said, "i just want to grab him and run all the way home", i felt the same, but just gave him a hug, its all i could do, as at this time i felt quite numb. The nurse came in around 8.20am, we walked the walk to the anesthetic room, Roy sat Bradley on his knee while he was put to sleep with a mask, i just stood and watched in absolute despair, i gave him a great big kiss and told him id see him soon, Roy and i just held each other as we walked out of that room, my Bradley was fast asleep.
The hours passed quite quickly, we just walked around the hospital in a daze, talked very little, just didnt want to talk to anyone.
The clock was passing quickly, it was 1.30pm and we hadnt heard anything, Roy went and asked 1 of the staff was there any word, she said they would be finishing up in about an hour but we wouldnt see him for another couple of hours after that.
We waited in Bradleys room, his bed was wheeled back in around 4.45pm, i completely lost it, just wasnt expecting him to brought in, 1 of the nurses had to take me out of the room because Brad was actually awake, she didnt want him seeing me upset, i just completely broke down, my boy had made it, wow, my boy was here, Roy was standing staring at him with his hand over his mouth, i just looked at Roy for a few seconds, i felt so sorry for him seeing his baby boy like this, Bradley fell back asleep, he looked perfect, so comfortable and peaceful, his head looked so strange, it looked like Brad from the nose down, but from the nose up he looked like his big brother, it was funny cause we had never noticed how alike his big brother he was, his beautiful flat round noggin. He slept for the rest of the day, he woke up a few times for a drink, he kept feeling all around his drains, i suppose he didnt feel right, we were told the surgery went very well, although they did have a few hitches, he had lost far more blood than expected, in fact he had lost more blood than what is usual, they were concerned about it, but hoped he was a big enough fella to be able to cope with it. The first night was a tough night for him, he needed another transfusion as his blood levels were too low, his blood pressure was high and his heart rate was too low, they actually had to stimulate him a few times during the night, but by they morning he was fine, we were told that usually older children have a slightly more difficult time after surgery.
Friday, Brad was in a really weird mood, he was still on the morphine, but was sitting up eating and drinking was fantastic to see, he didnt want to look at me or Roy, just kept giving us dirty looks, oh my, that was so hard, but one of the nurses had to keep reminding me that it was probably due to the morphine, as i was finding it very hard, Brad slept the majority of the day.
Saturday, he was in even worse form than yesterday, he hated everybody, we were told this could happen, so we were prepared for it in a way, he just didnt want to look or talk to anybody, when i tried giving him a kiss he would pull away, he seemed to be really depressed, horrible thing to see, he was really starting to swell now, he had 2 wee small black eyes, he was able to get his drains out, catheter out and 1 of his canulas. This made the world of difference to his mood, he still had a canula in his groin so walking was a bit difficult for him, but at least he was trying, i could see my boy again, i bent down to give Brad a kiss, he burped in my face and he thought that was hilarious, he let out quite a cheeky wee giggle, that when Roy and i knew he was on the mend, i cried my eyes out, in the toilet off course. With his drains removed his swelling started to peak, his wee body blew up like a balloon, i couldnt get his slippers on, and his eyes seemed as if they were shut but he could see through wee tiny slits at the bottom of them, this swelling only lasted about half a day, then it went down bit by bit quite quickly. I got my first proper cuddle too when the drains came out, my goodness, that was the best cuddle i have ever had.
The next couple of days went quite slowly, but Brad made amazing progress, the staff were so pleased with how he was doing, he just seemed to bounce right back after the 3rd day after surgery, he was very content on his meds, he was a bit sore at night time, but during the day he was fine. The last 5wks have gone by so quick i cant believe it, he is my little hero, such a strong little boy who doesnt let too much fase him, he is doing so well its unbelievable, i just cant believe myself how well he has done, i am sooo proud of him, and his cheeky wee smile is just the same.
It has been the most difficult thing myself and my husband have ever had to go through, but i can quite honestly say, im glad a have a cranio kid. xxxx
I also would just like to add, that the hospital staff were amazing, really really genuine in the fact that they cared about Bradley, 1 nurse in particular helped myself and my husband tremendously, i am so thankfull for this site cause without the people on here, Bradley would probably be still be waiting around for surgery.
http://i215.photobucket.com/albums/cc319/bradleyandkirsten/Picture017.jpg
Bradley was admitted to hospital when he was 12 days old, he was having severe breathing difficulties and wasn't too well, we were told that he had caught a cold and that some babies just have these difficulties if they catch a cold so young, he was on oxygen therapy for 10 days, and we were told that because he had these lung problems so young that he would probably end up having asthma, and true enough he has it quite severe. We took him home, and it felt like we were bringing him home for the first time, wonderful.
I took Bradley for his baby jabs when he was 8wks old, they were a little later than normal, but he took a while recovering from his illness, so my dr didnt want to give him his jabs before 8wks. My gp did the usual well baby check and said he was fine for his jabs, so off we went into our health visitor, she straight away mentioned his head shape and came over to feel it, she then said that his soft spot was closed, she called in our dr, who then agreed and said we would need to be referred for an xray, i thought to myself, what the hell are you talking about, the nurses at the hospital never mentioned it.
Bradley was seen by the same dr at the hospital who had looked after him when he was in with his breathing problems, now, she never mentioned about his head when he was in, but now all of a sudden, she could see that he had metopic cranio, she then went on to tell us that he would probably need surgery and if not corrected problems could occur, he was sent down for an xray, he was 4 months old.
Well, you can all remember the first time you heard those words "craniosynostosis", i couldnt get my head round it, id never heard the likes of it in my life, Roy and i went straight home and onto google, after scaring ourselves half to death, we decided to put it to the back of our minds until we got the xray results. The months passed and we never heard a thing until a letter came through the door asking Bradley to attend an appointment with a neurosurgeon, i nearly hit the floor,wasn't expecting that at all, Bradley would of been 9mths at this appointment, but the appointment was cancelled and put back, then that one was cancelled and put back, it was cancelled and put back 4 times altogether and Bradley was 18mths when he finally got to meet the neurosurgeon.
We were told the basics of it, the neurosurgeon didn't tell us anything other than it can cause some problems and that he highly recommended surgery, we were told that we needed to see all the other usual specialists and that we shouldn't book any summer holidays as he wanted surgery to be done within the following 8wks.
Well the rest is history, we never got our surgery date, i had to chase up the other appointments for a ct scan, genetics and eyes, as we never recieved anything.
We went back to see the neurosurgeon in march last year to be told that he couldn't find the ct scan results, so we were packed off again, we went back again in october last year, we were supposed to be meeting the facial surgeon as well, we were left sitting in the waiting room for 3 hrs, he didn't show up, neurosurgeon just couldnt get a hold of him.
So we went home again, feeling so angry and frustrated i went onto the net, and i came across craniokids, here i was put in touch with a different hospital in England, i didnt even know that we could go to another hospital without being referred.
So within 2wks of contacting oxford, we were given a date to go over and see the craniofacial team, and within 5wks, we were seen, i just couldnt get over the difference, we were given so much information that we weren't given before, we got to see Bradleys ctscan, they totally amazed us, we were told, that the surgeon knew that children who have metopic cranio, definately have a lack of blood supply to certain parts of the brain, and that the brain isn't happy being forced into such an abnormal shape, Bradleys eye problems were probably caused by the cranio, but surgery now wouldn't correct them, and that Bradleys ridge down his forehead was quite severe, they were very concered by the pains he has been suffering from, they aren't headaches as such, but more of a pain down the ridge on his forehead, it was just such a relief to be told all this, but devastating at the same time.
Bradley's surgery is booked for the 14th February 2008, and after nearly 3yrs with this hanging over us, it cant come quick enough.
Its been such a hard couple of years, and i feel now that im going to explode with emotion, and its Bradley that keeps me going, his smile lights up a room, and i dont want that to ever change.
I will update this when we are at the other side.xx
http://i215.photobucket.com/albums/cc319/bradleyandkirsten/2004-2005100.jpg http://i215.photobucket.com/albums/cc319/bradleyandkirsten/BRADLEY1.jpghttp://i215.photobucket.com/albums/cc319/bradleyandkirsten/BRADLEY2.jpg
Well here we are, 5wks post op, and things couldnt be better. I thought it was about time i finished Bradley's story.
We arrived at the hospital just after tea time, we were told Bradley needed bloods done to check his white cell count as he had suffered a bit of vomiting during the previous week, fair enough i thought, doing those bloods was horrible, watching Bradley being pocked and pocked was heartbreaking, they had trouble finding a vein, i was thinking to myself, how the hell am i gonna put him through this surgery when a simple blood test was pushing me to a breakdown, they finally got a vein, and within seconds Bradley was fine. We were sent up stairs to our accommodation, and what a night that was as we were told that if anything came back in his bloods, surgery might have to be cancelled. We came back onto the ward on Tuesday morning to be told his bloods were clear, and that he needed another blood test done to check for clotting and all the other things they need for surgery. He had bloods done again, and as stressfull as it was, they managed to get a vein first time.
We were taken round the hospital for all Bradleys appointments, eyes,hearing, development,and thankfully everything was fine, we were then told that his second round of bloods had shown some sort of clotting problem, they needed to do another blood test and we were also told if they couldnt get to the bottom of it they would need to cancel surgery, so, yet again, we were hanging in limbo, meanwhile we had our chats with the clinical nurse, who, i have to say was amazing, she asked us did we tell Bradley much about what was to happen, we said we had tried but he wasnt interested, so, she had a chat with Bradley, he wasnt very interested, she showed him a doll that had everything on it that Bradley would have when he came out of surgery, they use this doll for older children who can understand a bit more of whats going on, the doll was a big shock for me and Roy, as this was the first time we could really visualise what Bradley would look like, Bradley didnt like it much, he played with the drainage tubes but the one thing he didnt like was the catheter, funny thinking of it now, typical man i suppose. We also had our chat with the surgeons, it was extremly difficult, i couldnt even sign the consent form and poor Roy had to sign it as i got myself into such a state, i just couldnt sign the paper work. It was a very difficult day, emotionally i was completely drained already. His bloods came back, surgery could go ahead, he had the same conditon i have, his blood was thickening too quick, this is why i had suffered several miscarriages and why i had to take injections to thin my blood while pregnant with Bradley. They said it meant slightly more risk during surgery, but they would allow for it and would be more vigilant during surgery. Things were finally given the all clear, what else is gonna go wrong, thats what was going though my mind. We were sent to our accommodation for the night before surgery, Bradley was kept on the ward as they wanted to moniter him throughout the night, so i stayed with him, i didnt sleep much, but Bradley slept like a log.
Morning of surgery.
Roy came down to his room around 6ish, he couldnt sleep either, Bradley woke in good form, and wasnt really asking for any juice or anything to eat thankfully, he was given another dose of his steroids, he had been given these over the last 2 days to help with swelling. We just sat around waiting for the staff to take Bradley, i was staring into space, my husband was finding it very hard, pacing up and down the room, he said, "i just want to grab him and run all the way home", i felt the same, but just gave him a hug, its all i could do, as at this time i felt quite numb. The nurse came in around 8.20am, we walked the walk to the anesthetic room, Roy sat Bradley on his knee while he was put to sleep with a mask, i just stood and watched in absolute despair, i gave him a great big kiss and told him id see him soon, Roy and i just held each other as we walked out of that room, my Bradley was fast asleep.
The hours passed quite quickly, we just walked around the hospital in a daze, talked very little, just didnt want to talk to anyone.
The clock was passing quickly, it was 1.30pm and we hadnt heard anything, Roy went and asked 1 of the staff was there any word, she said they would be finishing up in about an hour but we wouldnt see him for another couple of hours after that.
We waited in Bradleys room, his bed was wheeled back in around 4.45pm, i completely lost it, just wasnt expecting him to brought in, 1 of the nurses had to take me out of the room because Brad was actually awake, she didnt want him seeing me upset, i just completely broke down, my boy had made it, wow, my boy was here, Roy was standing staring at him with his hand over his mouth, i just looked at Roy for a few seconds, i felt so sorry for him seeing his baby boy like this, Bradley fell back asleep, he looked perfect, so comfortable and peaceful, his head looked so strange, it looked like Brad from the nose down, but from the nose up he looked like his big brother, it was funny cause we had never noticed how alike his big brother he was, his beautiful flat round noggin. He slept for the rest of the day, he woke up a few times for a drink, he kept feeling all around his drains, i suppose he didnt feel right, we were told the surgery went very well, although they did have a few hitches, he had lost far more blood than expected, in fact he had lost more blood than what is usual, they were concerned about it, but hoped he was a big enough fella to be able to cope with it. The first night was a tough night for him, he needed another transfusion as his blood levels were too low, his blood pressure was high and his heart rate was too low, they actually had to stimulate him a few times during the night, but by they morning he was fine, we were told that usually older children have a slightly more difficult time after surgery.
Friday, Brad was in a really weird mood, he was still on the morphine, but was sitting up eating and drinking was fantastic to see, he didnt want to look at me or Roy, just kept giving us dirty looks, oh my, that was so hard, but one of the nurses had to keep reminding me that it was probably due to the morphine, as i was finding it very hard, Brad slept the majority of the day.
Saturday, he was in even worse form than yesterday, he hated everybody, we were told this could happen, so we were prepared for it in a way, he just didnt want to look or talk to anybody, when i tried giving him a kiss he would pull away, he seemed to be really depressed, horrible thing to see, he was really starting to swell now, he had 2 wee small black eyes, he was able to get his drains out, catheter out and 1 of his canulas. This made the world of difference to his mood, he still had a canula in his groin so walking was a bit difficult for him, but at least he was trying, i could see my boy again, i bent down to give Brad a kiss, he burped in my face and he thought that was hilarious, he let out quite a cheeky wee giggle, that when Roy and i knew he was on the mend, i cried my eyes out, in the toilet off course. With his drains removed his swelling started to peak, his wee body blew up like a balloon, i couldnt get his slippers on, and his eyes seemed as if they were shut but he could see through wee tiny slits at the bottom of them, this swelling only lasted about half a day, then it went down bit by bit quite quickly. I got my first proper cuddle too when the drains came out, my goodness, that was the best cuddle i have ever had.
The next couple of days went quite slowly, but Brad made amazing progress, the staff were so pleased with how he was doing, he just seemed to bounce right back after the 3rd day after surgery, he was very content on his meds, he was a bit sore at night time, but during the day he was fine. The last 5wks have gone by so quick i cant believe it, he is my little hero, such a strong little boy who doesnt let too much fase him, he is doing so well its unbelievable, i just cant believe myself how well he has done, i am sooo proud of him, and his cheeky wee smile is just the same.
It has been the most difficult thing myself and my husband have ever had to go through, but i can quite honestly say, im glad a have a cranio kid. xxxx
I also would just like to add, that the hospital staff were amazing, really really genuine in the fact that they cared about Bradley, 1 nurse in particular helped myself and my husband tremendously, i am so thankfull for this site cause without the people on here, Bradley would probably be still be waiting around for surgery.
http://i215.photobucket.com/albums/cc319/bradleyandkirsten/Picture017.jpg