We haven't had a hospital admission in 14 months. We survived the whole winter of '11 without a single bug getting into Nico's chest. To most families, this is not anything very surprising, and if kids do end up with a cold or flu, they are not necessarily on the Yellow Brick Road to to see the wonderful doctors of Oz. Micro premmies are a different tribe, parents are warned before NICU discharged that the first 2 years will be spent in and out of hospital and the first 2-4 winters especially so.
We were admitted 4 days ago. I am writing from the Ronald McDonald Family Room in the hospital. Imagine a zero bedroom house inside a hospital and this is what you will get. 2-3 lounge areas, a few computers, a full kitchen with dining table and semi stocked pantry, 2 bathrooms and a laundry. I wish this has been here when Nico was born. It is the furthest cry from the "Hey, lets rip out the toilets, chuck an op-shop couch in their place and call that the parent room" parent room that existed opposite the NICU bays. No one ever used that room unless they really needed a private cry. It was horrid.
Nico came into hospital on Sunday in some serious respiratory distress. he had been unwell since thursday and sent home from ED after a few hours on Friday only to get worse. There was an infection of some description invading him, giving him pneumonia, making him cough till he vomitted, stopping him sleeping any more than 10 minutes and sending his temperature soaring to 39.5 degrees. The bug laughed at doctors attempts of laoding Nico with panadol and nurofen, and pushed his temperature up even more just to show them it meant business. It burrowed further into his lungs and at 4am on Tuesday morning, the nurses and doctor called "Code Blue, 41 North. Code Blue" through the hospital PA system and the crash team (I think they are officially called a resuss team) arrived in 3 minutes. An hour later he was moved downstairs to PICU and on a gazillion litres of high flow oxygen. If he got worse he would be on the tubed ventilator.
PICU doctors told me that they weren't really going to be doing much, if anything, more than they would downstairs, but the oxygen requirements were not something that the childrens ward could cope with. He would just have to ride out the viral infection and if there was any bacterial infection, the antibiotics could work on those. He was in a terrible state. Having dystonic CP makes it hard for them to distinguish what is normal-but-exacerbated movement from what is abmormal. They again, as they have with several other admissions, questioned me about whether he has seizures. The neuro team dont believe so and I don't either as he appears pretty lucid rather than absent (although the though has crossed my mind several times)
His fabulous speech pathologist (not part of the hospital) was there when I came back from a few hours break yesterday. She is his favourite therapist and on a normal day, she only has to speak from a corner of the room unseen and he will light up. She was so upset when I called her to let her know what was going on, she got in the car and spent a few hours with him, singing and talking with him. We are so blessed to have such wonderful people in our life. She couldn't get a hint of a smile from him (he hasn't smiled in days) but he was calm and fell asleep in his tumbleform chair and didnt really wake up much for the next 16 hours. He needed it!! His fever finally broke and he was able to catch up on the week of no sleep (he hadnt slept for 3 days at home even before the admission).
I am hoping we will be out of the hospital by mid next week. When we first went in I was expecting to be out by tomorrow. Goal posts move frequently in the medical world. it is not something I am naturally good with but I am learning to roll with it.
We were admitted 4 days ago. I am writing from the Ronald McDonald Family Room in the hospital. Imagine a zero bedroom house inside a hospital and this is what you will get. 2-3 lounge areas, a few computers, a full kitchen with dining table and semi stocked pantry, 2 bathrooms and a laundry. I wish this has been here when Nico was born. It is the furthest cry from the "Hey, lets rip out the toilets, chuck an op-shop couch in their place and call that the parent room" parent room that existed opposite the NICU bays. No one ever used that room unless they really needed a private cry. It was horrid.
Nico came into hospital on Sunday in some serious respiratory distress. he had been unwell since thursday and sent home from ED after a few hours on Friday only to get worse. There was an infection of some description invading him, giving him pneumonia, making him cough till he vomitted, stopping him sleeping any more than 10 minutes and sending his temperature soaring to 39.5 degrees. The bug laughed at doctors attempts of laoding Nico with panadol and nurofen, and pushed his temperature up even more just to show them it meant business. It burrowed further into his lungs and at 4am on Tuesday morning, the nurses and doctor called "Code Blue, 41 North. Code Blue" through the hospital PA system and the crash team (I think they are officially called a resuss team) arrived in 3 minutes. An hour later he was moved downstairs to PICU and on a gazillion litres of high flow oxygen. If he got worse he would be on the tubed ventilator.
PICU doctors told me that they weren't really going to be doing much, if anything, more than they would downstairs, but the oxygen requirements were not something that the childrens ward could cope with. He would just have to ride out the viral infection and if there was any bacterial infection, the antibiotics could work on those. He was in a terrible state. Having dystonic CP makes it hard for them to distinguish what is normal-but-exacerbated movement from what is abmormal. They again, as they have with several other admissions, questioned me about whether he has seizures. The neuro team dont believe so and I don't either as he appears pretty lucid rather than absent (although the though has crossed my mind several times)
His fabulous speech pathologist (not part of the hospital) was there when I came back from a few hours break yesterday. She is his favourite therapist and on a normal day, she only has to speak from a corner of the room unseen and he will light up. She was so upset when I called her to let her know what was going on, she got in the car and spent a few hours with him, singing and talking with him. We are so blessed to have such wonderful people in our life. She couldn't get a hint of a smile from him (he hasn't smiled in days) but he was calm and fell asleep in his tumbleform chair and didnt really wake up much for the next 16 hours. He needed it!! His fever finally broke and he was able to catch up on the week of no sleep (he hadnt slept for 3 days at home even before the admission).I am hoping we will be out of the hospital by mid next week. When we first went in I was expecting to be out by tomorrow. Goal posts move frequently in the medical world. it is not something I am naturally good with but I am learning to roll with it.
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