Zoe's Meeting with Complex Care Team
Zoe's pediatrician referred her to what is called the "complex care team." The goal of meeting with this team is to come up with a care plan for when Zoe is sick. That way if she goes to the emergency room, we already have a plan in place. And if she needs to be admitted, it will be the same group of doctors that will always be in charge of her care. That way they get to know her and provide more consistent care. Some of the other advantages are that if Zoe needs x-rays or tests at the hospital, we can get quicker results and the complex care team has six beds in the hospital so depending on if those beds are full, we may even be able to bypass the emergency room and get admitted right away. Because Zoe has been sick most of this winter, we thought it would be a good idea to meet with the team.
The meeting was what we expected but we did hear some things we did not want to hear.
Zoe's Lungs
For a while now, Zoe has been having some lung issues. Pneumonia that didn't clear up for months and now a junky sound and feel (you can actually feel the mucus if you hold her left side). Both the Nurse Practitioner (NP) and the doctor said what our pediatrician said- that this could be more of a chronic lung issue rather than a couple of different infections. We didn't really like this answer. They ordered a chest x-ray and the NP called last night to tell us the results.
Atelectasis and Aspiration
We were not surprised to hear that her lungs did not appear normal since she is sounding junky right now. We expected to hear that she had pneumonia again but instead we are told that the part of her left lower lobe that had pneumonia before now has atelectasis (http://en.wikipedia.org/wiki/Atelectasis) which the NP described as a "collapsing of the airways." Hmmm, that doesn't sound like a good time to me! So of course Gavin and I are now researching what this all means. The NP and doctor think that perhaps Zoe is aspirating on some of her food or her reflux and that is causing the lung issues. I asked what else it could be if it is not aspiration and was told, "I don't want to hypothesize on that just yet. Let's see what the test results show."
Of course through all of this, Zoe continues to look great and is quite happy. Her colour is great and she continues to have lots of energy. Today she is even at daycare with all her friends. We are so glad that Zoe is not suffering or uncomfortable but sometimes it is challenging to make our friends realize that Zoe is really sick. Yes, she looks great but her lungs look like crap!
Feeding Study
They want Zoe to get a feeding study (something that her pediatrician actually asked for 20 months ago but some how the paperwork got messed up and we ended up seeing nutrition instead). So we are waiting to hear from the hospital when they want us to come in for that. The initial feeding study will involve Zoe eating in front of an OT while she listens to her lungs with a stethoscope. If she hears anything or suspects aspiration, then she will order a feeding study with xrays.
Ending on a Positive Note
When we saw nutrition last week, they said they were quite impressed with how well Zoe eats. They are impressed with her variety in textures and tastes as well as how much she eats (she has turned into a real pig!) They also said that overall she is about the height and weight of a 14 month old (not bad since she is 26 months old). Her head is still quite small (about a 3 month old) but there isn't anything we can do about that. They also said that her body mass index is actually quite good as is her overall body fat. So we were happy to hear this. They don't want to see us for another year and said to "keep up the great work." It was nice to get the positive feedback after we have worked so hard the past 26 months to feed Zoe orally.
Zoe's pediatrician referred her to what is called the "complex care team." The goal of meeting with this team is to come up with a care plan for when Zoe is sick. That way if she goes to the emergency room, we already have a plan in place. And if she needs to be admitted, it will be the same group of doctors that will always be in charge of her care. That way they get to know her and provide more consistent care. Some of the other advantages are that if Zoe needs x-rays or tests at the hospital, we can get quicker results and the complex care team has six beds in the hospital so depending on if those beds are full, we may even be able to bypass the emergency room and get admitted right away. Because Zoe has been sick most of this winter, we thought it would be a good idea to meet with the team.
The meeting was what we expected but we did hear some things we did not want to hear.
Zoe's Lungs
For a while now, Zoe has been having some lung issues. Pneumonia that didn't clear up for months and now a junky sound and feel (you can actually feel the mucus if you hold her left side). Both the Nurse Practitioner (NP) and the doctor said what our pediatrician said- that this could be more of a chronic lung issue rather than a couple of different infections. We didn't really like this answer. They ordered a chest x-ray and the NP called last night to tell us the results.
Atelectasis and Aspiration
We were not surprised to hear that her lungs did not appear normal since she is sounding junky right now. We expected to hear that she had pneumonia again but instead we are told that the part of her left lower lobe that had pneumonia before now has atelectasis (http://en.wikipedia.org/wiki/Atelectasis) which the NP described as a "collapsing of the airways." Hmmm, that doesn't sound like a good time to me! So of course Gavin and I are now researching what this all means. The NP and doctor think that perhaps Zoe is aspirating on some of her food or her reflux and that is causing the lung issues. I asked what else it could be if it is not aspiration and was told, "I don't want to hypothesize on that just yet. Let's see what the test results show."
Of course through all of this, Zoe continues to look great and is quite happy. Her colour is great and she continues to have lots of energy. Today she is even at daycare with all her friends. We are so glad that Zoe is not suffering or uncomfortable but sometimes it is challenging to make our friends realize that Zoe is really sick. Yes, she looks great but her lungs look like crap!
Feeding Study
They want Zoe to get a feeding study (something that her pediatrician actually asked for 20 months ago but some how the paperwork got messed up and we ended up seeing nutrition instead). So we are waiting to hear from the hospital when they want us to come in for that. The initial feeding study will involve Zoe eating in front of an OT while she listens to her lungs with a stethoscope. If she hears anything or suspects aspiration, then she will order a feeding study with xrays.
Ending on a Positive Note
When we saw nutrition last week, they said they were quite impressed with how well Zoe eats. They are impressed with her variety in textures and tastes as well as how much she eats (she has turned into a real pig!) They also said that overall she is about the height and weight of a 14 month old (not bad since she is 26 months old). Her head is still quite small (about a 3 month old) but there isn't anything we can do about that. They also said that her body mass index is actually quite good as is her overall body fat. So we were happy to hear this. They don't want to see us for another year and said to "keep up the great work." It was nice to get the positive feedback after we have worked so hard the past 26 months to feed Zoe orally.
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