Friday, June 25, 2004
Home Again
Hi everyone
Just a quick note to let you know that Michelle and Eliza came home on Tuesday. The bi-pap ventilation seems to be helping her and she has slept through most nights, although we are having a lot of trouble keeping the mask on her face as her head is still so narrow it just slides off. As you can imagine its an enormous fight each night to get it on anyway and I’m sure she goes to sleep each night hating both of us intensely :-)
Unfortunately the bad news is that she has to go back into hospital around the 12th July to have a gastrostomy tube (G-Tube) placed in her stomach. This will replace the nasal gastric tube she currently uses to feed. There are several advantages of this type of feeding tube in that it won’t get in the way of her bi-pap mask, it may help her to swallow better and it might even cut down the amount of secretions she generates. Not to mention that we can pick her up and cuddle her without the damn thing getting in the way. Like most operations it does have its dangers and for Eliza they are considerable so please keep her in your thoughts during this time. There are also some post operative things that can happen with the g-tube, the worst of which would mean having yet another operation called a fundoplication (tightening of the muscle at the top of the stomach) which is far more involved and would require around 4 hours under anaesthetic (compared with 20-30 mins for the G-tube). We did get some good news, the scan she had on her kidneys recently showed no scaring from the renal reflux so it looks as though it is something that will correct itself over time (we hope)!
We would also like to thank everyone that bought Eliza a christening present . We have been meaning to send out a thankyou note to each of you, but time has gotten away a little bit with all of the doctors visits and it has proven a difficult task. So please know that they are appreciated.
I’ve also attached a few photo’s just in case you have forgotten how cute she is :-)
Regards
Darren
Just a quick note to let you know that Michelle and Eliza came home on Tuesday. The bi-pap ventilation seems to be helping her and she has slept through most nights, although we are having a lot of trouble keeping the mask on her face as her head is still so narrow it just slides off. As you can imagine its an enormous fight each night to get it on anyway and I’m sure she goes to sleep each night hating both of us intensely :-)
Unfortunately the bad news is that she has to go back into hospital around the 12th July to have a gastrostomy tube (G-Tube) placed in her stomach. This will replace the nasal gastric tube she currently uses to feed. There are several advantages of this type of feeding tube in that it won’t get in the way of her bi-pap mask, it may help her to swallow better and it might even cut down the amount of secretions she generates. Not to mention that we can pick her up and cuddle her without the damn thing getting in the way. Like most operations it does have its dangers and for Eliza they are considerable so please keep her in your thoughts during this time. There are also some post operative things that can happen with the g-tube, the worst of which would mean having yet another operation called a fundoplication (tightening of the muscle at the top of the stomach) which is far more involved and would require around 4 hours under anaesthetic (compared with 20-30 mins for the G-tube). We did get some good news, the scan she had on her kidneys recently showed no scaring from the renal reflux so it looks as though it is something that will correct itself over time (we hope)!
We would also like to thank everyone that bought Eliza a christening present . We have been meaning to send out a thankyou note to each of you, but time has gotten away a little bit with all of the doctors visits and it has proven a difficult task. So please know that they are appreciated.
I’ve also attached a few photo’s just in case you have forgotten how cute she is :-)
Regards
Darren
Tuesday, June 15, 2004
Eliza Update: Alone again sort of
Hi everyone
The two girls in my life have deserted me again. Eliza is back at Westmead hospital to have a Bi-Pap machine calibrated to her needs and Michelle is staying out there with her. For those of you wondering what the hell Bi-Pap is (and I would have been one of you prior to Eliza’ arrival), it is a machine that provides both I-Pap and E-Pap (clear as mud ). Seriously, The I is for inhale and E for exhale and the Pap is Positive Airway Pressure, so in effect it provides help with both the breathing in and out, although the machine doesn’t breathe for her, it help her to complete each breath and to ensure that she doesn’t apnoea. She only needs this while she is asleep and it will hopefully help her to avoid some of the side effects from the apnoea’s that are currently interrupting her sleep such as CO2 build-up and lack of REM sleep. They also hope it will help her to start breathing a bit deeper and slower than she currently does even when awake.
Her first attempt with the bi-pap has been a bit rough and Eliza was very upset when I left the hospital, but Michelle called me later in the evening to tell me that she had finally fallen asleep about 30 mins after I left and that she was breathing in Sync with the machine, so that in itself is a good sign.
It was kind of funny tonight, Michelle and I had discussed how every time Eliza tries to sleep in a hospital a Doctor comes in and wants to examine her, then once you get rid of that lot, the next lot come in when she is due to be fed, delaying her feed. By the end of it we are left with a screaming, tired and hungry mess to deal with. Well it happened again tonight, although at feed time it was only a couple of student doctors and they turned and ran after being told about her propensity to chuck up if disturbed during feeds. Student Doctors Nil, Eliza One
I say I’m alone sort of, as Michelle’s Mum and Dad needed to come back to Sydney for a friends funeral and have kindly offered to stay for a bit longer to help Michelle and Eliza out while they are in the Hospital. It does however feel very weird not having them here and its is very quiet. Its lucky I got a few extra cuddles with Eliza before taking her to the hospital this afternoon.
Eliza may be in hospital for 10 days or more depending on how well all the tests go and how quickly she adapts to the bi-pap. Both Michelle and Eliza are going to want visitors so if you are thinking of heading out the details are as follows:
Ward: Hunter Baillie
Level 1 Westmead Children’s Hospital
Visiting Hours: 10am-12:00pm and 2:00pm – 7.30pm
Phone: 9845-1569 (direct to room)
9845-1113 (ward)
It might be worth a quick call to let them know you are coming as she has a few tests that are being done at the same time and may not be there all the time. Hope to see you soon.
Regards
Darren
The two girls in my life have deserted me again. Eliza is back at Westmead hospital to have a Bi-Pap machine calibrated to her needs and Michelle is staying out there with her. For those of you wondering what the hell Bi-Pap is (and I would have been one of you prior to Eliza’ arrival), it is a machine that provides both I-Pap and E-Pap (clear as mud ). Seriously, The I is for inhale and E for exhale and the Pap is Positive Airway Pressure, so in effect it provides help with both the breathing in and out, although the machine doesn’t breathe for her, it help her to complete each breath and to ensure that she doesn’t apnoea. She only needs this while she is asleep and it will hopefully help her to avoid some of the side effects from the apnoea’s that are currently interrupting her sleep such as CO2 build-up and lack of REM sleep. They also hope it will help her to start breathing a bit deeper and slower than she currently does even when awake.
Her first attempt with the bi-pap has been a bit rough and Eliza was very upset when I left the hospital, but Michelle called me later in the evening to tell me that she had finally fallen asleep about 30 mins after I left and that she was breathing in Sync with the machine, so that in itself is a good sign.
It was kind of funny tonight, Michelle and I had discussed how every time Eliza tries to sleep in a hospital a Doctor comes in and wants to examine her, then once you get rid of that lot, the next lot come in when she is due to be fed, delaying her feed. By the end of it we are left with a screaming, tired and hungry mess to deal with. Well it happened again tonight, although at feed time it was only a couple of student doctors and they turned and ran after being told about her propensity to chuck up if disturbed during feeds. Student Doctors Nil, Eliza One
I say I’m alone sort of, as Michelle’s Mum and Dad needed to come back to Sydney for a friends funeral and have kindly offered to stay for a bit longer to help Michelle and Eliza out while they are in the Hospital. It does however feel very weird not having them here and its is very quiet. Its lucky I got a few extra cuddles with Eliza before taking her to the hospital this afternoon.
Eliza may be in hospital for 10 days or more depending on how well all the tests go and how quickly she adapts to the bi-pap. Both Michelle and Eliza are going to want visitors so if you are thinking of heading out the details are as follows:
Ward: Hunter Baillie
Level 1 Westmead Children’s Hospital
Visiting Hours: 10am-12:00pm and 2:00pm – 7.30pm
Phone: 9845-1569 (direct to room)
9845-1113 (ward)
It might be worth a quick call to let them know you are coming as she has a few tests that are being done at the same time and may not be there all the time. Hope to see you soon.
Regards
Darren
