Things are changing so fast and I'm doing my best to keep up!
The CPAP has been off for almost a week and Emma's doing great. She seems to be sleeping well, which is a sign she's breathing well. Without the CPAP though, our main justification for having 8 hours of nursing care each night is gone. The next review by the insurance is September 6, so potentially we have until then to enjoy the extra reassurance.
Right now Emma is still on the pulse ox, monitoring her SATs/oxygen level, during sleep and a continuous tube feed with the pump over night. That feed provides over 50% of her daily caloric intake and some hydration.
Today we met with Emma's GI doctor and dietician. The doctor was thrilled with her and labeled her eating as "extraordinary" (ie. great!). He left pretty quick since all that remained to be discussed was how to transition her off the tube feeds!
My idea is to go back to bolus feeds during the day (we went from 4 to 1 over 12 months) and reduce the amount she gets overnight. If we can eliminate the overnight feed completely we won't need a nurse, making the loss of nursing easier to bear!
However, the reason we reduced the bolus feeds was to increase her motivation to eat more food orally. So it is going to be a challenge to find the balance between supplementing and reducing her appetite. I'll start out small initially and will need to make sure her oral intake also continues to increase.
An additional factor is hydration. Emma does not drink much, in fact no more than an ounce of fluid per day! Even if she is able to consume all her calories orally we will not be able to take the tube out until she is drinking enough to stay well hydrated. This is almost more critical than the food since dehydration is more subtle and quicker than malnutrition.
In case I have confused you too much, all of the above is great news! I remember that we were never sure that she would ever eat more than pureed food, let alone realistically have the tube-less life in sight!
On a personal level I am kind of freaking out inside! In one way, many of my back-ups are falling away. The nurses were able to catch any sickness symptoms I might miss, the fewer bolus feeds allowed me to add one in if we didn't have time to eat, Emma's speech therapist was here to encourage me and hold me accountable for progressing the eating.
Additionally, the dietician has simply given me the total volumes of water and formula that Emma needs to get each day and is leaving the distribution up to me! I'm already shaking with the pressure I feel to get it right so Emma can keep progressing. I so desperately want her to live without these concerns, so what if I get it wrong?
I really don't have time to sit back and obsess about the potential problems though! Instead I will start working on a schedule for Scott and I to follow gradually. And then I will chase Toby around as he tries to take every thing Emma picks up or eat any shoes/doormats/electronics he can lay his hands on!
That's right, Toby is getting better each day. He still has a chunky cough, not helped by the primary diet of milk, but he is otherwise a bundle of energy and, well, trouble! After last weeks scary trip to the ER I couldn't be more thankful.
The CPAP has been off for almost a week and Emma's doing great. She seems to be sleeping well, which is a sign she's breathing well. Without the CPAP though, our main justification for having 8 hours of nursing care each night is gone. The next review by the insurance is September 6, so potentially we have until then to enjoy the extra reassurance.
Right now Emma is still on the pulse ox, monitoring her SATs/oxygen level, during sleep and a continuous tube feed with the pump over night. That feed provides over 50% of her daily caloric intake and some hydration.
Today we met with Emma's GI doctor and dietician. The doctor was thrilled with her and labeled her eating as "extraordinary" (ie. great!). He left pretty quick since all that remained to be discussed was how to transition her off the tube feeds!
My idea is to go back to bolus feeds during the day (we went from 4 to 1 over 12 months) and reduce the amount she gets overnight. If we can eliminate the overnight feed completely we won't need a nurse, making the loss of nursing easier to bear!
However, the reason we reduced the bolus feeds was to increase her motivation to eat more food orally. So it is going to be a challenge to find the balance between supplementing and reducing her appetite. I'll start out small initially and will need to make sure her oral intake also continues to increase.
An additional factor is hydration. Emma does not drink much, in fact no more than an ounce of fluid per day! Even if she is able to consume all her calories orally we will not be able to take the tube out until she is drinking enough to stay well hydrated. This is almost more critical than the food since dehydration is more subtle and quicker than malnutrition.
In case I have confused you too much, all of the above is great news! I remember that we were never sure that she would ever eat more than pureed food, let alone realistically have the tube-less life in sight!
On a personal level I am kind of freaking out inside! In one way, many of my back-ups are falling away. The nurses were able to catch any sickness symptoms I might miss, the fewer bolus feeds allowed me to add one in if we didn't have time to eat, Emma's speech therapist was here to encourage me and hold me accountable for progressing the eating.
Additionally, the dietician has simply given me the total volumes of water and formula that Emma needs to get each day and is leaving the distribution up to me! I'm already shaking with the pressure I feel to get it right so Emma can keep progressing. I so desperately want her to live without these concerns, so what if I get it wrong?
I really don't have time to sit back and obsess about the potential problems though! Instead I will start working on a schedule for Scott and I to follow gradually. And then I will chase Toby around as he tries to take every thing Emma picks up or eat any shoes/doormats/electronics he can lay his hands on!
That's right, Toby is getting better each day. He still has a chunky cough, not helped by the primary diet of milk, but he is otherwise a bundle of energy and, well, trouble! After last weeks scary trip to the ER I couldn't be more thankful.
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