Mya didn't make much progress today. Her lungs are looking a little worse than yesterday and so they stopped making changes to the ventilator. She just wasn't ready to let go of that support. She has been sedated and sleeping most of the day, when she does come out of it she is very agitated and I think I saw some seizures returning again. She doesn't tend to seize while she is sick, so whether that is a good thing is in the air. We did increase her feeds and hope to be up to a more normal feeding schedule by tomorrow. I brought in a blender and so prepping her food went a little more smoothly today. Cottage cheese, oatmeal, peanut butter, green beans & pear sauce if you are hungry.
The support and prayers we are receiving has been such a blessing. I have people driving my kids across town and picking them up at preschool and buying and wrapping birthday presents I nearly forgot I still needed and dropping food in coolers on the front porch of my empty house. Sometimes we live a typical day just barely within control and so trying to be in this place and carry on at home when Mya is so sick has been emotionally draining. We appreciate everyone who is helping us get through this and the offers we haven't been able to accept yet.
Friday, February 28, 2014
Thursday, February 27, 2014
Adventures in policy making
It is just food, after all.
They look at you like you are creating the most complicated situation ever to enter the hospital. 'We can't blend here.' Well actually you can, you just won't mix it together. Kids across the hospital are on pureed-only restrictions so I know you have a blender. And sitting across the table from us just happens to be a friend of ours who came to drop off our lunch. His daughter has been in 3 times this winter and you know them. She is on a blended diet. Bluff called. How do we make this happen?
Today the dietician came in on board. She even made a copy of Mya's recipe sheet I had brought in to share with her manager. They are going to work on setting up a standard way for parents to order a blended diet. The problem isn't that the hospital can't blend but rather that they like things done a certain way and nobody has established that way. So they are going to work on it. Maybe next time one of our daughters is admitted we wont have to mix purees and oil at the bedside. And we won't have to clog the tube for the first time since starting this diet because the lady on the phone didn't appreciate what was meant by 'as thin as you can make it'. No worries, we got it unclogged but I might bring a blender tomorrow.
Mya is doing much better today. She had her eyes open when I got here this morning and responded to my voice. Her lungs are looking clearer every day and her blood pressure seems to be under control. They are weaning off some of the ventilator support and scaling back on respiratory treatments. With any luck they will be able to extubate her early next week. We aren't sure how long we will have to stay after she is extubated, but we are taking it one day at a time. I already have someone working on getting insurance to cover a pulse ox monitor for home. Insurance had denied pulse ox monitors in the past. Apparently not being able to breathe for extended periods of time is not enough to warrant a monitor, so currently we just wait for her to scream herself awake if her mask gets off center without alarming. I think that system is pretty unacceptable in general but especially while recovering from pneumonia. So hooray for a woman with a plan.
We appreciate the prayers and the support. Mya is moving in the right direction but she is still a very sick and miserable little girl, so keep them coming.
They look at you like you are creating the most complicated situation ever to enter the hospital. 'We can't blend here.' Well actually you can, you just won't mix it together. Kids across the hospital are on pureed-only restrictions so I know you have a blender. And sitting across the table from us just happens to be a friend of ours who came to drop off our lunch. His daughter has been in 3 times this winter and you know them. She is on a blended diet. Bluff called. How do we make this happen?
Today the dietician came in on board. She even made a copy of Mya's recipe sheet I had brought in to share with her manager. They are going to work on setting up a standard way for parents to order a blended diet. The problem isn't that the hospital can't blend but rather that they like things done a certain way and nobody has established that way. So they are going to work on it. Maybe next time one of our daughters is admitted we wont have to mix purees and oil at the bedside. And we won't have to clog the tube for the first time since starting this diet because the lady on the phone didn't appreciate what was meant by 'as thin as you can make it'. No worries, we got it unclogged but I might bring a blender tomorrow.
Mya is doing much better today. She had her eyes open when I got here this morning and responded to my voice. Her lungs are looking clearer every day and her blood pressure seems to be under control. They are weaning off some of the ventilator support and scaling back on respiratory treatments. With any luck they will be able to extubate her early next week. We aren't sure how long we will have to stay after she is extubated, but we are taking it one day at a time. I already have someone working on getting insurance to cover a pulse ox monitor for home. Insurance had denied pulse ox monitors in the past. Apparently not being able to breathe for extended periods of time is not enough to warrant a monitor, so currently we just wait for her to scream herself awake if her mask gets off center without alarming. I think that system is pretty unacceptable in general but especially while recovering from pneumonia. So hooray for a woman with a plan.
We appreciate the prayers and the support. Mya is moving in the right direction but she is still a very sick and miserable little girl, so keep them coming.
Wednesday, February 26, 2014
My little lady has a cold
We were so close to no admissions as 3-year-olds! Their birthday is next week after all. Mya was admitted Monday to the pediatric intensive care unit in respiratory distress. They have identified a viral infection and also pneumonia in her lungs. She was on Bipap at maximum settings for most of the first day and she just couldn't keep up. We made the decision Monday night to intabate her to help her breathe and give her body a break. They said it can take some time to get the setting right on the ventilator and get her sedation in the right place and stabilized and that is what they worked on through the most of Tuesday. She struggles, we know, handling sedation and her blood pressure, heart rate and temperatures have been low. She is also retaining fluid and some of it has made its way into her lungs. So Tuesday morning they put in a central line to provide access for blood pressure medications. Once the blood pressure is under control they will tackle the fluid retention. This is definitely the sickest she has ever been and we are prepared that she may get worse before she gets better.
We are also prepared to be here a while so we are working on a plan to give Ella and Clayton as much stability as possible. The hospital has a sort of daycare program for siblings of inpatients that runs most of the day with breaks around meal times. We are going to try that today. That would allow Bernie to get back to work when she stabilizes and limit the amount of coordination and back and forth between home and the hospital. Fingers crossed that they have a ball and enjoy being closer to Mya. We are also going to try to get them up here to see her today so are going to meet with the Child Life department about the best way to talk to them about what is going on and how she looks. Many thanks for the prayers and support.
We are also prepared to be here a while so we are working on a plan to give Ella and Clayton as much stability as possible. The hospital has a sort of daycare program for siblings of inpatients that runs most of the day with breaks around meal times. We are going to try that today. That would allow Bernie to get back to work when she stabilizes and limit the amount of coordination and back and forth between home and the hospital. Fingers crossed that they have a ball and enjoy being closer to Mya. We are also going to try to get them up here to see her today so are going to meet with the Child Life department about the best way to talk to them about what is going on and how she looks. Many thanks for the prayers and support.
Wednesday, February 12, 2014
They tell me this still counts as therapy
---->
Mya pretty well slept through January. Between the snow days and her sedation she was awake for about 3 hours of school for the month. I guess that makes people uncomfortable. We also find it less than ideal. I think when we go through these periods where we are doing our best but our best is not good enough we forget how it feels to really have her present. Our child slept through the month of January. That is an enormous challenge we deal with constantly but to which the average parent could not possibly relate. And it isn't just that she is sleeping. Most days she wakes up screaming when I move her from what I can only imagine is a tight body she has so little control over. There is no road map for this. It weighs on our hearts and our moods in ways we may not even see. We feel heavy as we try to find our patience to let the seizure meds settle in before we mark them off the list as failures. We feel the burden on our shoulders of the decisions we face regarding her care that we feel so ill-equipped to handle, heavier still when we are far removed from seeing her joy.
But for the time being my heart is lifted just a little bit. We have made some adjustments in recent weeks to her medications and she is starting to have some alert periods again. More seizures, of course, is the trade-off. The aide on the bus and the bus driver were all smiles as they helped her off today. They shared how she lights up and smiles as they make the turn onto our street. Consistently. She knows this is home. She came home awake and happy. She called out against the cold. She expressed her hunger through her arm clench and her lip smacking. She made eye contact as I asked her about her day and pressed her button with intention to give her news of the day; three short recordings of her teacher explaining how she had slept completely through class. And I couldn't help but smile. She had saved her alert time for home today. Now she is asleep in her stander so that may just be all we get for a while. But it is progress. Mya your resilience is inspiring.
Mya pretty well slept through January. Between the snow days and her sedation she was awake for about 3 hours of school for the month. I guess that makes people uncomfortable. We also find it less than ideal. I think when we go through these periods where we are doing our best but our best is not good enough we forget how it feels to really have her present. Our child slept through the month of January. That is an enormous challenge we deal with constantly but to which the average parent could not possibly relate. And it isn't just that she is sleeping. Most days she wakes up screaming when I move her from what I can only imagine is a tight body she has so little control over. There is no road map for this. It weighs on our hearts and our moods in ways we may not even see. We feel heavy as we try to find our patience to let the seizure meds settle in before we mark them off the list as failures. We feel the burden on our shoulders of the decisions we face regarding her care that we feel so ill-equipped to handle, heavier still when we are far removed from seeing her joy.
But for the time being my heart is lifted just a little bit. We have made some adjustments in recent weeks to her medications and she is starting to have some alert periods again. More seizures, of course, is the trade-off. The aide on the bus and the bus driver were all smiles as they helped her off today. They shared how she lights up and smiles as they make the turn onto our street. Consistently. She knows this is home. She came home awake and happy. She called out against the cold. She expressed her hunger through her arm clench and her lip smacking. She made eye contact as I asked her about her day and pressed her button with intention to give her news of the day; three short recordings of her teacher explaining how she had slept completely through class. And I couldn't help but smile. She had saved her alert time for home today. Now she is asleep in her stander so that may just be all we get for a while. But it is progress. Mya your resilience is inspiring.
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