Lottie86
Mummy to Findlay & Iona
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- Jan 13, 2009
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After 25 days in hospital including 9 days in intensive care he is back home again!
He went in for a fundoplication with a few additional tweaks so that he couldn't be sick anymore due to how severe his reflux was.
He had the fundoplication and the G tube inserted and all seemed to be fine and he was in intensive care with an epidural and morphine for the pain. He then had a contrast study done to check the siting of the G tube and it showed it was slightly too far down so he had to go back to theatre on day 3 to have a new one put in and at the same time they put a PICC line into his ankle going right up in him so that they could feed specialist nutrition into him through a vein (which apparently cost over £1000 a day and he had it for 12 days!!).
He finally escaped ICU after 5 days and went up to the surgical ward. The following morning we got up to him to find he'd been spiking temps of up to 39.5C and had been put onto vancomycin to treat an infection and cultures showed that he had picked up Staph Aureus from the PICC line so it had to be removed. This meant he had to have another trip to theatre to have a Hickman line inserted.
He then went back down for another contrast study and his stomach wasn't emptying. They tried leaving it for a while, putting milk down his tube to stimulate his tummy, drugs etc and nothing was working so he had to go down to theatre for a 4th time and he had a kink in his bowel sorted and had his pylorus reconstructed and they put in another NJ tube so he could start to have some milk going into his bowel and he went back down to ICU for 4 days.
Finally the next contrast study showed that his tummy was emptying allbeit very very slowly and so they started gradually moving his feeds across from going into his bowel to going into his G tube 5mls at a time every 12 hours until he was just on G tube feeds and then they let him come home!!!
We will be back at the hospital every week-2 weeks for check ups, weight checks and meetings with the dietician as we will be moving him over to having bolus feeds through his tube during the day and then a continuous feed overnight but they didn't want to make us stay in hospital until he was on his daytime bolus' as that can be a slow process.
He's currently on special formula milk thats already broken down into amino acids for really easy digestion and is suitable as a source of sole nutrition (as he currently has no solids) and once he starts having bolus feeds he'll be on EBM for his daytime bolus' and then the formula for his overnight feeds and the nwhen he gets to 12 months he'll switch to the next stage up of the formula milk for his overnight feeds
He'll be having another op in Feb to change his G tube to being a button like Lakai has and that will need changing every 3 months but hopefully this was the last multiple week stay.
He is finally putting on good amounts of weight now he can keep stuff down and he's now 9lb 7oz at 7.5 months old
We had the speech and language therapist come and see us about his oral aversion and she's given us some exercises to do with his mouth and some toys for him to explore his mouth with and twice a day we have to try and get him to have a taste of solids (which at the moment is just causing him to cry). She doesn't think we'll ever get him to take milk orally again but we're hopeful we can in time get him taking his solids orally as he associates them less with pain than he does milk.
We've got the physio and occupational therapist coming out to see him later this week with his special chair and to help develop his muscles as they are hopeful that his weird mucle tone is just due to the nutritional problems caused by such severe reflux
I'll try and get some pics of him up in the next few days
He went in for a fundoplication with a few additional tweaks so that he couldn't be sick anymore due to how severe his reflux was.
He had the fundoplication and the G tube inserted and all seemed to be fine and he was in intensive care with an epidural and morphine for the pain. He then had a contrast study done to check the siting of the G tube and it showed it was slightly too far down so he had to go back to theatre on day 3 to have a new one put in and at the same time they put a PICC line into his ankle going right up in him so that they could feed specialist nutrition into him through a vein (which apparently cost over £1000 a day and he had it for 12 days!!).
He finally escaped ICU after 5 days and went up to the surgical ward. The following morning we got up to him to find he'd been spiking temps of up to 39.5C and had been put onto vancomycin to treat an infection and cultures showed that he had picked up Staph Aureus from the PICC line so it had to be removed. This meant he had to have another trip to theatre to have a Hickman line inserted.
He then went back down for another contrast study and his stomach wasn't emptying. They tried leaving it for a while, putting milk down his tube to stimulate his tummy, drugs etc and nothing was working so he had to go down to theatre for a 4th time and he had a kink in his bowel sorted and had his pylorus reconstructed and they put in another NJ tube so he could start to have some milk going into his bowel and he went back down to ICU for 4 days.
Finally the next contrast study showed that his tummy was emptying allbeit very very slowly and so they started gradually moving his feeds across from going into his bowel to going into his G tube 5mls at a time every 12 hours until he was just on G tube feeds and then they let him come home!!!
We will be back at the hospital every week-2 weeks for check ups, weight checks and meetings with the dietician as we will be moving him over to having bolus feeds through his tube during the day and then a continuous feed overnight but they didn't want to make us stay in hospital until he was on his daytime bolus' as that can be a slow process.
He's currently on special formula milk thats already broken down into amino acids for really easy digestion and is suitable as a source of sole nutrition (as he currently has no solids) and once he starts having bolus feeds he'll be on EBM for his daytime bolus' and then the formula for his overnight feeds and the nwhen he gets to 12 months he'll switch to the next stage up of the formula milk for his overnight feeds
He'll be having another op in Feb to change his G tube to being a button like Lakai has and that will need changing every 3 months but hopefully this was the last multiple week stay.
He is finally putting on good amounts of weight now he can keep stuff down and he's now 9lb 7oz at 7.5 months old
We had the speech and language therapist come and see us about his oral aversion and she's given us some exercises to do with his mouth and some toys for him to explore his mouth with and twice a day we have to try and get him to have a taste of solids (which at the moment is just causing him to cry). She doesn't think we'll ever get him to take milk orally again but we're hopeful we can in time get him taking his solids orally as he associates them less with pain than he does milk.
We've got the physio and occupational therapist coming out to see him later this week with his special chair and to help develop his muscles as they are hopeful that his weird mucle tone is just due to the nutritional problems caused by such severe reflux
I'll try and get some pics of him up in the next few days
so glad he's home x
