Coming home tomorrow
Abigail has had a very settled time at the Queen Elizabeth hospital since she was transferred from Guy’s nearly two weeks ago. In the last week she’s experienced little or no seizure activity and been calm and placid. Swab tests indicate there is still an MRSA infection in her abdominal gastrostomy site and she’s occasionally had a slightly higher temperature thought to be linked with that infection. Generally though, Abigail seems to be in another phase of calmness and stability.
It’s great to see her awake and alert when we visit and she’s often seemed much easier to hold recently. Her spasmodic ‘extensions’ and limb movements appear to have subsided somewhat. Despite her apparent lack of outward expression or interaction, Abby clearly loves her bath times – she goes all wide-eyed and relaxed when in the water!
In terms of her feeding, Abigail has progressed with this too. She’s now off a continuous pump feed and is on 95ml of milk every three hours which is gravity fed through a large syringe into her gastrostomy. It only takes around fifteen minutes to complete. Abby has seven feeds a day which means a six hour break between midnight and 6am. Given that before her operation she could only handle 33mls over an hour, it’s great that her feeding is now almost up to what she should be getting for her age. She’s also finally begun to put some weight on with all that milk and now weighs 13lb 7oz – she’d been static at around 12lb since January.
Given her recent progress and stability, doctors have decided that Abigail will be discharged from the QE to come back home tomorrow (Tuesday 6th). We’re obviously very excited about this and it’s a major milestone for Abby and us. Clearly this is unlikely to be the last spell in hospital for Abigail but we plan to enjoy and make the most of this next phase at home. Becky and Josh are also very excited about Abby coming home. Yesterday Nix and I spent much of the day cleaning and tidying Abby’s room and preparing all the sensory lights, mobiles and toys for her cot side.
Obviously we know that the long-term prognosis for Abigail hasn’t changed. One way to describe her at the moment might be that she’s simply more stable. Her fitting seems to be under as much control as can be expected and her feeding is doing well. We are now at the point where we feel able to care for her at home. It will undoubtedly be tough with three children at home (particularly at the start of the Easter holidays!) but we feel as prepared as we can be. Just as Abby seems to revel in the experience of her bath times, we hope that as a family we are soon able to offer her many more rich and diverse experiences of life for as long as we’re blessed with her.
It’s great to see her awake and alert when we visit and she’s often seemed much easier to hold recently. Her spasmodic ‘extensions’ and limb movements appear to have subsided somewhat. Despite her apparent lack of outward expression or interaction, Abby clearly loves her bath times – she goes all wide-eyed and relaxed when in the water!
In terms of her feeding, Abigail has progressed with this too. She’s now off a continuous pump feed and is on 95ml of milk every three hours which is gravity fed through a large syringe into her gastrostomy. It only takes around fifteen minutes to complete. Abby has seven feeds a day which means a six hour break between midnight and 6am. Given that before her operation she could only handle 33mls over an hour, it’s great that her feeding is now almost up to what she should be getting for her age. She’s also finally begun to put some weight on with all that milk and now weighs 13lb 7oz – she’d been static at around 12lb since January.
Given her recent progress and stability, doctors have decided that Abigail will be discharged from the QE to come back home tomorrow (Tuesday 6th). We’re obviously very excited about this and it’s a major milestone for Abby and us. Clearly this is unlikely to be the last spell in hospital for Abigail but we plan to enjoy and make the most of this next phase at home. Becky and Josh are also very excited about Abby coming home. Yesterday Nix and I spent much of the day cleaning and tidying Abby’s room and preparing all the sensory lights, mobiles and toys for her cot side.
Obviously we know that the long-term prognosis for Abigail hasn’t changed. One way to describe her at the moment might be that she’s simply more stable. Her fitting seems to be under as much control as can be expected and her feeding is doing well. We are now at the point where we feel able to care for her at home. It will undoubtedly be tough with three children at home (particularly at the start of the Easter holidays!) but we feel as prepared as we can be. Just as Abby seems to revel in the experience of her bath times, we hope that as a family we are soon able to offer her many more rich and diverse experiences of life for as long as we’re blessed with her.
posted by The Freestones at 11:52 am
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