One of the most common complaints I hear is, “it’s seems like the doctors aren’t even trying to find out __________”. Believe me, I understand where they are coming from. However, I also recognize that there are limits to medicine and sometimes it is more art than science. Maybe I have a different perspective because I grew up around medical professionals. I have also grown up around teachers, and they will always tell you that works for one child does not always work for another. Sometimes doctors don’t know and there is no test that can find the answer.
Now, I also understand how frustrating it is. Even knowing that doctors do not always have the answer, sometimes it really gets to me as well. This is how appointments go with Lyra:
- Genetics: “We have no idea what the future will hold for her. She is an interesting case. She will have disabilities, but we have no idea what those will look like.”
- Cardiology: “Well, her heart isn’t normal, but it seems to be functioning okay. We are just going to watch it and see.” Me: “What does that mean in the long term/ bigger picture?” Cardiology: “We have no idea.”
- Urology: “Her urethra is dilated, but she isn’t refluxing into the kidneys.” Me: “So what does that mean?” Urology: “We don’t know, but we will just have to monitor it.”
- Ophthalmology: “Her optic nerves are enlarged.” Me: “What does that indicate/mean?” Ophthalmology: “We have no idea.”
- GI: “We have no idea why she doesn’t tolerate her feeds. It makes no logical sense.” (BTW, I actually really like her GI doctor because he is bound and determined to find a solution, even if it isn’t logical.)
- Neurology: “Well her brain isn’t normal and we don’t know why.”
- ENT: “I feel like we must all be stupid. Like we are missing something. It just doesn’t make sense.” (These were his actual words)
There are a few more, but you get the idea. To be honest, sometimes I leave these appointments and cry. I try not to do it in front of Lyra. Even though she is a baby, she doesn’t need to see how sad this makes me. I want to be able to fix SOMETHING, but I can’t. I want to know what to prepare myself for, but there are no answers. I want to know why one day she eats a few oz by mouth, and the next day she pukes if I have spoon in my hand.
Trust me, the doctors aren’t being lazy. They talk to each other and to other members of their departments. I think almost everyone in GI at the hospital knows Lyra’s case at this point. I see the look on their faces that says, “how can I tell this parent that I have no answers for her?” I always tell them it’s okay that they don’t have answers. No one does. But it still breaks my heart a little bit.
Right now we are back in the hospital, and we have been for a few days. Once again, Lyra isn’t tolerating her feeds. We even put in a new tube called a GJ (a link with an explanation is below). We feed directly into her intestines, and yet she still throws up. She throws up enough stomach bile that she actually manages to become dehydrated. She is doing okay, but we can’t quite get her feeds up to the point where she is fully hydrated or getting enough calories. We have no idea how long we will be here. No one has answers, but everyone is trying. The GI nurses who see her outpatient even came by to say hi and check on her.
I guess my point is, it’s not easy, and people need to remember that medicine doesn’t have an answer for everything. Sometimes we just have to keep trying and hope that eventually something works. Or, keep watching and hope that everything works itself out.
CHOP – Low Profile GJ Tube
Wagon ride down to the cafeteria for lunch with Mommy and Daddy