Brendan's Op!
Mr Kohle (plastic surgeon) let us come home on Wednesday night, which was totally unexpected. I remember when Brendan went for his palate repair and was admitted the day before like this time I asked if he could come home and Mr Kohle said no way. The speech therapist has never known him to let any of his patients home the night before. It was lovely to come home esp because Brendan could just not understand why he was having to sleep in the hospital but not have his op til the next day. He got breakfast (had to be eaten by 7am) and could drink up til 11am. Back up to the hospital for 8am.
He had to get photos taken (that was a dawdle, done that just last month) and he had to get blood taken for cross matching if he needed blood during the op. He's never had blood taken before so really didn't know how he was going to react. But they put on the magic cream for an hour beforehand, put on a DVD for him to watch and he never noticed a thing! 20 mins later he bends his arm at the elbow and says ouch because the plaster was bugging him!
It was a long wait for theatre. Long and boring. He got a premed 45 mins before theatre which took about 15mins to kick in but then he was sitting playing the nintendo ds right up til the trolley came for him and his wee head was dropping further and further down but still he kept playing. He ended up speaking jibberish sometimes with it too...was quite funny.
Trolley came for him just after 1.30pm, he chose me to come with him to the anaesthetic room so of course I was in tears before we even got there! He had more magic cream on the back of one hand and inside of the other elbow but the anaethetist said she would give him gas because there just wasn't any veins to be seen and she didn't want to go jabbing at him. They flavour the gas with lipsalve! He got a choice of cherry or strawberry so he choose strawberry. Getting the gas wasn't particularly nice, it made him wriggle and jerk a bit and he looked like he was going to be sick (apparently that's the normal effects of the gas) but at least it wasn't sore and he just went to sleep.
Came out cried my heart out and then came home. Had lunch, picked Éile up from school, usual stuff but had to keep myself sitting down or else I started pacing the floors.
Went back up to the hospital at 5pm, went to high dependancy unit but knew he wouldn't be back. Went nad got some supper, went outside for Steve to have a fag and when we came back in just at 6pm Mr Kohle was walking down the corridor towards us. I was practically running down the corridor to high dependancy :) He said the everything went well and he was in recovery. A nurse took me down to recovery to see him and it was so different from last time (when he had palate repair done), he was very settled, he opened his eyes to see me, apparently he asked for me as soon as he woke up :), and he was sleepy. He was on morphine, had a nasal airway in, attatched to heart monitor etc, had a drip up and oxygen mask on and was absolutely cooking! He looked like he had been in the sun for a few days with no suncream on. They said it was because he was under a warming blanket in theatre. He also had a huge fat bottom lip, it was all swollen with being under the instrument that was keeping his mouth open during the op.
Got him up to high dependancy where he just slept really. He was on continuous morphine and could have a bit more if we pushed the button if he was sore. The nurse reckoned it would be the early hours of the morning the anaesthetic would wear off properly, so I went to bed at 9pm. But couldn't sleep, I think I dozed on an off til midnight, but was on edge just waiting for the phone to ring (I had a room in the hospital). By 1am I thought I might as well get up and doze in a chair beside him so I did. I went through and they said they had to stop the continuous morphine because it was making him too sleepy and his heart rate and breathing rate were dropping too low.
He had been awake, saying he wanted the nasal airway out (that bugged him the most) and he asked for the arm splint to come off. They were on not so he couldn't bend his arms but so they tubes in his hands were covered. So the nruse said that he could have the splints off if he was a good boy and didn't touch the tube in his nose. He said he would be. And he was good, the nasal tube didn't come out til the anaethetist took it out the next morning.
He asked to go to the toilet, and of course had to pee in a bottle, couldn't manage and was crying that he wanted to go to a real toilet!
But he had a pretty settled night, when he was awake he was really sore but a couple of pushes of morphine and he settled again.
At 2.45am I thought I'd try going back to bed and thought even if I get some sleep til 6am then that's at least 3hrs. In my bed 10mins and they phoned me to come back cause he was upset.
At 4.30am he hit the absolutely miserable stage. He wanted to go home, he wanted all the tubes and wires out, he was just sobbing his heart out and said 'I'm really ill Mummy'. By 6am I was exhausted and crying along with him!
The doctors came to see him around 8am (I think) and they were asking me stuff and I just couldn't remember the answers cause I was so tired! But they were pleased with him. We managed to keep going til just after 9am when Steve came up. I went to bed but only slept for an hour. When I came back he had went from sleeping in his bed zonked out to sitting up in a chair and he had lost the morphine and the nasal tube taken out! He was sitting in a chair watching TV. The anaesthetist took the nasal tube out because she reckoned that was what was causing him the most pain and then took the morphine off because it was making him sleepy and itchy.
Mr Kohle came to see him and said we could start him on drinks and some ice cream, but then told em he was on soft diet for 3 weeks! He had originally said 2. He had a drink and some ice cream for lunch I was expecting him to be in high dependancy for a couple of days but he was moved back up to the surgical ward on Friday afternoon, less than 24hrs after he came out of theatre. Up on surgical ward was a bit of a nightmare at first.
They just don't do the same level of care as high dependancy. I had to stop 2 different student nurses from giving him straws, the auxiliary came at supper time and told me there wasn't salad but he could have the fish (had to remind her he was on soft diet) and the sister got his date of birth wrong on his name band and I had to ask her to put on his name sign about his diet. The sister was his named nurse and I really didn't like her. He was complaining that his hand was sore (where the drip was going in) and she gave him a telling off, telling him that of course his hand would be sore if he kept pulling at the tube (which he wasn't!). he had a yoghurt for supper, took about half and then said he wasn't having any more. So we left it on his table thinking he could finish it later. We went for supper and came back adn the jelly was gone! The sister said oh he ate it all no problems..I just thought hmmmmmm (so not sure if she bullied it down his throat, chucked it or he really did eat it).
Friday night I really wanted to come home, I didn't think I could do another night with no sleep but he wouldn't let me go. He fell asleep at 7pm so I sat with him. Good job because the nurses woke him at 8pm to give him medicine...that was a battle.
I went to bed at 9 and slept til five to 11. I checked my watch just with the light through the window nad thought it was five to 6 so got up switched on bathroom light and saw it wasn't. Back to bed and slept til just after 2am when the ward phoned me to say he'd had an accident and was really upset. He hadn't managed to get to the toilet in time (because no toilet on the bit of the ward he was in and he would've had to drag the drip after him too) so then it was Mummy will you sleep with me. So I spent the rest of the night in his bed with him (dozed but not easy to sleep in a single child sized bed with him snoring).
If he hadn't had the drip up which was making him need to pee during the night, I think he would've slept all night.
Saturday he had rice cripies and milk (had to wait til we heard all the snap crackles and pops so they were soggy) and he ate probably half the bowl and he had some apple juice.
Rest of the morning very boring, he was fed up and kept asking to go home. We kept pushing him to drink and telling him if he wanted go home he had to dirnk and he would get the drip taken down. Mr Kohle phoned at lunch time to say to take the drip down and he could go home if we were happy to take him! Really didn't expect to get him home so soon, I was still expecting him to be in high dependancy on saturday and not home til Monday or Tuesday. Mr Kohle was veyr pleaased at how well Brendan was doing.
He had some custard for lunch! That is the first time he has had custard since he was a baby! (before he was taken off his reflux meds he ate just about everything) I didn't tell him what it was, just put it in his mouth, said it tasted nice but felt funny in his mouth. But ate half the bowl. Didn't like the soup (which was fair enough I tasted it and it was quite salty) and more apple juice.
My mum came through yesterday so she stayed with him while we went home for lunch, I also depserately needed clean clothes and wanted to clean my teeth with toothpaste instead of just water (forgot to pack toothpaste).
By the time we went back to the hospital he had his drip taken down. Steve's mum and dad arrived in the afternoon. Spent the afternoon playing. And then the fire alarm went off! We were just coming back from the play room, and the alarm went off and the fire doors started shutting, so I was diving through the doors with the kids cause I wasn't sure if the doors would open again. Got into the ward to find Steve, my mum and inlaws had gone but the nurse was there. We got to see a fireman too! Alarms went off soon after the firemen checked, there wasn't a fire so it must've been set off accidentally or something.
Supper time, Brendan had a whole tub of ice cream. Tried macaroni cheese blended up but said he didn't like it. Some blackcurrant juice. Then we got to come home.
Wrapped a scarf round his mouth and all we could see were his big brown eyes looking up at us over the top of the scarf.
Home to bed. He had his favourite story (three christmas bears) 3 times and then he said I'm home, home sweet home, which set me off in tears again. Then he seemed to zonk out really quickly and was snoring really loudly. This snoring is freaking me out, he never used to snore, but I suppose it's all the swelling. He seemed to just go into a really deep sleep really quickly, loud snoring and I couldn't get him to wake up until I accidentally sat on his foot. But he was fine.
I had chinese chips and ribs for supper...I have spent the past week eating because I have to rather than because I want to and just shoving anything in. Was living on jaffa cakes on Thursday and friday really and only proper meals I was having were suppers at the staff canteen. Was soooo nice last night to eat something I wanted to eat.
He slept right through til 8.15am (new time since the clocks have gone forward). I woke at 1am and 6am but otherwise nice to be in my own bed asleep for a change :)
He's had half a weetabix with lots of milk for breakfast and some apple juice. He's really not keen to drink, I suppose because drinking requires a bit of suction. He asked for toast and started crying when I said he couldn't have any, so then he asked if he could have a peanut butter sandwich, I said no so then he asked for a jam sandwich. Then he asked for jelly and he's eaten a whole tub of that.
Have bought some packet baby food and see if he will take some of that, and will try blending up some sausages for his supper (he was asking for sausages last night) Think he is going to get really fed up of this soft diet lark really soon.
Have been so surprised at how quickly he is recovering. he has been an absolute star! I am so glad to be home and to have him home too.
This morning he asked if he was going to nursery today, thankfully it's a sunday so no nursery anyway. Not sure what will happen tomorrow when Éile goes to school. I think I'll see how he goes, maybe phone the hospital and ask and if he's well enough, he might get to nursery end of the week but I'll stay with him, we'll just see, I was planning on keeping him off all this week coming.
We went into all this knowing that there was a high chance the palate re-repair wouldn't work and there is always the chance the pharyngoplasty won't hold. Mr Kohle hasn't done a normal pharyngoplasty, he basically taken a flap from the back of his throat and stiched the whole of the edge at the back of his soft palate to the back of the throat, there is only 2 small holes either side for him to breathe through his nose. Normally a pharyngoplasty just takes two side flaps with a gap in the middle. He said he could end up being hyponasal but we'll just have to wait and see. His speech certainly sound different. His bottom lip being swollen has really bugged him but it is definately going down now. A few people before op had said he just sounded like he had a cold (with being hypernasal) but I never really noticed it before but now it sounds like he has even more of a cold but his speech is slightly clearer, that maybe doesn't make much sense but it is definately different. Have 6 months to wait and see what it really will be. On the whole, it was a much much better experience than when he had his palate repair done when he was 9 months old.
He had to get photos taken (that was a dawdle, done that just last month) and he had to get blood taken for cross matching if he needed blood during the op. He's never had blood taken before so really didn't know how he was going to react. But they put on the magic cream for an hour beforehand, put on a DVD for him to watch and he never noticed a thing! 20 mins later he bends his arm at the elbow and says ouch because the plaster was bugging him!
It was a long wait for theatre. Long and boring. He got a premed 45 mins before theatre which took about 15mins to kick in but then he was sitting playing the nintendo ds right up til the trolley came for him and his wee head was dropping further and further down but still he kept playing. He ended up speaking jibberish sometimes with it too...was quite funny.
Trolley came for him just after 1.30pm, he chose me to come with him to the anaesthetic room so of course I was in tears before we even got there! He had more magic cream on the back of one hand and inside of the other elbow but the anaethetist said she would give him gas because there just wasn't any veins to be seen and she didn't want to go jabbing at him. They flavour the gas with lipsalve! He got a choice of cherry or strawberry so he choose strawberry. Getting the gas wasn't particularly nice, it made him wriggle and jerk a bit and he looked like he was going to be sick (apparently that's the normal effects of the gas) but at least it wasn't sore and he just went to sleep.
Came out cried my heart out and then came home. Had lunch, picked Éile up from school, usual stuff but had to keep myself sitting down or else I started pacing the floors.
Went back up to the hospital at 5pm, went to high dependancy unit but knew he wouldn't be back. Went nad got some supper, went outside for Steve to have a fag and when we came back in just at 6pm Mr Kohle was walking down the corridor towards us. I was practically running down the corridor to high dependancy :) He said the everything went well and he was in recovery. A nurse took me down to recovery to see him and it was so different from last time (when he had palate repair done), he was very settled, he opened his eyes to see me, apparently he asked for me as soon as he woke up :), and he was sleepy. He was on morphine, had a nasal airway in, attatched to heart monitor etc, had a drip up and oxygen mask on and was absolutely cooking! He looked like he had been in the sun for a few days with no suncream on. They said it was because he was under a warming blanket in theatre. He also had a huge fat bottom lip, it was all swollen with being under the instrument that was keeping his mouth open during the op.
Got him up to high dependancy where he just slept really. He was on continuous morphine and could have a bit more if we pushed the button if he was sore. The nurse reckoned it would be the early hours of the morning the anaesthetic would wear off properly, so I went to bed at 9pm. But couldn't sleep, I think I dozed on an off til midnight, but was on edge just waiting for the phone to ring (I had a room in the hospital). By 1am I thought I might as well get up and doze in a chair beside him so I did. I went through and they said they had to stop the continuous morphine because it was making him too sleepy and his heart rate and breathing rate were dropping too low.
He had been awake, saying he wanted the nasal airway out (that bugged him the most) and he asked for the arm splint to come off. They were on not so he couldn't bend his arms but so they tubes in his hands were covered. So the nruse said that he could have the splints off if he was a good boy and didn't touch the tube in his nose. He said he would be. And he was good, the nasal tube didn't come out til the anaethetist took it out the next morning.
He asked to go to the toilet, and of course had to pee in a bottle, couldn't manage and was crying that he wanted to go to a real toilet!
But he had a pretty settled night, when he was awake he was really sore but a couple of pushes of morphine and he settled again.
At 2.45am I thought I'd try going back to bed and thought even if I get some sleep til 6am then that's at least 3hrs. In my bed 10mins and they phoned me to come back cause he was upset.
At 4.30am he hit the absolutely miserable stage. He wanted to go home, he wanted all the tubes and wires out, he was just sobbing his heart out and said 'I'm really ill Mummy'. By 6am I was exhausted and crying along with him!
The doctors came to see him around 8am (I think) and they were asking me stuff and I just couldn't remember the answers cause I was so tired! But they were pleased with him. We managed to keep going til just after 9am when Steve came up. I went to bed but only slept for an hour. When I came back he had went from sleeping in his bed zonked out to sitting up in a chair and he had lost the morphine and the nasal tube taken out! He was sitting in a chair watching TV. The anaesthetist took the nasal tube out because she reckoned that was what was causing him the most pain and then took the morphine off because it was making him sleepy and itchy.
Mr Kohle came to see him and said we could start him on drinks and some ice cream, but then told em he was on soft diet for 3 weeks! He had originally said 2. He had a drink and some ice cream for lunch I was expecting him to be in high dependancy for a couple of days but he was moved back up to the surgical ward on Friday afternoon, less than 24hrs after he came out of theatre. Up on surgical ward was a bit of a nightmare at first.
They just don't do the same level of care as high dependancy. I had to stop 2 different student nurses from giving him straws, the auxiliary came at supper time and told me there wasn't salad but he could have the fish (had to remind her he was on soft diet) and the sister got his date of birth wrong on his name band and I had to ask her to put on his name sign about his diet. The sister was his named nurse and I really didn't like her. He was complaining that his hand was sore (where the drip was going in) and she gave him a telling off, telling him that of course his hand would be sore if he kept pulling at the tube (which he wasn't!). he had a yoghurt for supper, took about half and then said he wasn't having any more. So we left it on his table thinking he could finish it later. We went for supper and came back adn the jelly was gone! The sister said oh he ate it all no problems..I just thought hmmmmmm (so not sure if she bullied it down his throat, chucked it or he really did eat it).
Friday night I really wanted to come home, I didn't think I could do another night with no sleep but he wouldn't let me go. He fell asleep at 7pm so I sat with him. Good job because the nurses woke him at 8pm to give him medicine...that was a battle.
I went to bed at 9 and slept til five to 11. I checked my watch just with the light through the window nad thought it was five to 6 so got up switched on bathroom light and saw it wasn't. Back to bed and slept til just after 2am when the ward phoned me to say he'd had an accident and was really upset. He hadn't managed to get to the toilet in time (because no toilet on the bit of the ward he was in and he would've had to drag the drip after him too) so then it was Mummy will you sleep with me. So I spent the rest of the night in his bed with him (dozed but not easy to sleep in a single child sized bed with him snoring).
If he hadn't had the drip up which was making him need to pee during the night, I think he would've slept all night.
Saturday he had rice cripies and milk (had to wait til we heard all the snap crackles and pops so they were soggy) and he ate probably half the bowl and he had some apple juice.
Rest of the morning very boring, he was fed up and kept asking to go home. We kept pushing him to drink and telling him if he wanted go home he had to dirnk and he would get the drip taken down. Mr Kohle phoned at lunch time to say to take the drip down and he could go home if we were happy to take him! Really didn't expect to get him home so soon, I was still expecting him to be in high dependancy on saturday and not home til Monday or Tuesday. Mr Kohle was veyr pleaased at how well Brendan was doing.
He had some custard for lunch! That is the first time he has had custard since he was a baby! (before he was taken off his reflux meds he ate just about everything) I didn't tell him what it was, just put it in his mouth, said it tasted nice but felt funny in his mouth. But ate half the bowl. Didn't like the soup (which was fair enough I tasted it and it was quite salty) and more apple juice.
My mum came through yesterday so she stayed with him while we went home for lunch, I also depserately needed clean clothes and wanted to clean my teeth with toothpaste instead of just water (forgot to pack toothpaste).
By the time we went back to the hospital he had his drip taken down. Steve's mum and dad arrived in the afternoon. Spent the afternoon playing. And then the fire alarm went off! We were just coming back from the play room, and the alarm went off and the fire doors started shutting, so I was diving through the doors with the kids cause I wasn't sure if the doors would open again. Got into the ward to find Steve, my mum and inlaws had gone but the nurse was there. We got to see a fireman too! Alarms went off soon after the firemen checked, there wasn't a fire so it must've been set off accidentally or something.
Supper time, Brendan had a whole tub of ice cream. Tried macaroni cheese blended up but said he didn't like it. Some blackcurrant juice. Then we got to come home.
Wrapped a scarf round his mouth and all we could see were his big brown eyes looking up at us over the top of the scarf.
Home to bed. He had his favourite story (three christmas bears) 3 times and then he said I'm home, home sweet home, which set me off in tears again. Then he seemed to zonk out really quickly and was snoring really loudly. This snoring is freaking me out, he never used to snore, but I suppose it's all the swelling. He seemed to just go into a really deep sleep really quickly, loud snoring and I couldn't get him to wake up until I accidentally sat on his foot. But he was fine.
I had chinese chips and ribs for supper...I have spent the past week eating because I have to rather than because I want to and just shoving anything in. Was living on jaffa cakes on Thursday and friday really and only proper meals I was having were suppers at the staff canteen. Was soooo nice last night to eat something I wanted to eat.
He slept right through til 8.15am (new time since the clocks have gone forward). I woke at 1am and 6am but otherwise nice to be in my own bed asleep for a change :)
He's had half a weetabix with lots of milk for breakfast and some apple juice. He's really not keen to drink, I suppose because drinking requires a bit of suction. He asked for toast and started crying when I said he couldn't have any, so then he asked if he could have a peanut butter sandwich, I said no so then he asked for a jam sandwich. Then he asked for jelly and he's eaten a whole tub of that.
Have bought some packet baby food and see if he will take some of that, and will try blending up some sausages for his supper (he was asking for sausages last night) Think he is going to get really fed up of this soft diet lark really soon.
Have been so surprised at how quickly he is recovering. he has been an absolute star! I am so glad to be home and to have him home too.
This morning he asked if he was going to nursery today, thankfully it's a sunday so no nursery anyway. Not sure what will happen tomorrow when Éile goes to school. I think I'll see how he goes, maybe phone the hospital and ask and if he's well enough, he might get to nursery end of the week but I'll stay with him, we'll just see, I was planning on keeping him off all this week coming.
We went into all this knowing that there was a high chance the palate re-repair wouldn't work and there is always the chance the pharyngoplasty won't hold. Mr Kohle hasn't done a normal pharyngoplasty, he basically taken a flap from the back of his throat and stiched the whole of the edge at the back of his soft palate to the back of the throat, there is only 2 small holes either side for him to breathe through his nose. Normally a pharyngoplasty just takes two side flaps with a gap in the middle. He said he could end up being hyponasal but we'll just have to wait and see. His speech certainly sound different. His bottom lip being swollen has really bugged him but it is definately going down now. A few people before op had said he just sounded like he had a cold (with being hypernasal) but I never really noticed it before but now it sounds like he has even more of a cold but his speech is slightly clearer, that maybe doesn't make much sense but it is definately different. Have 6 months to wait and see what it really will be. On the whole, it was a much much better experience than when he had his palate repair done when he was 9 months old.