So obviously we have started another episode of Cyclic Vomiting. We have all sorts of adventures with this. First, our main doctor is two hours away. So before we freak out that it is once again another episode we wait it out. We started almost a week ago. Averaging about 5 vomits a day. (usually 7-8) but when you are vomiting because of Cyclic Vomiting, at least in our experience, it is quite violent each time. I have learned that each CVSr is although typical in cyclic patterns, has their own pattern of episodes and cycles. Ours, to some, may not seem like a typical Cyclic Vomiting case, but are hardly ever normal in any aspect of anything. That was part of why it made it harder to diagnose.
So since we have started another episode, we have also had to start with all the usual entanglements. We first contact his specialist 2 hours a way for a heads up and suggestions he has. Keep in mind that this is our first episode that we are handling on our own since getting the diagnosis. The few couple, he was still under the care of the doctor on a fairly regular basis, or actually in the hospital to control. We are trying to avoid that. Since he has gone four months without vomiting AT ALL (which is his longest in two years) we have been stable and handling on our own. So letting the us manage seems the likely course. As his vomiting versus input is okay, he hasn’t needed fluids, but we are quickly approaching the change stage. He goes through stages in his episodes that that vomiting changes. I don’t know if this is from him changing what he consumes or changes in his metabolism from the vomiting, but you know when it changes. So, next we have to decide if and when he needs fluids. There should be an easier way to do that. I prefer not to go more than a week of him vomiting without setting up the IV therapy that his PCP helps us get in place.
But while we deal with all of this.. Let’s talk about school. Would someone please tell me why it is SOOO hard to express to the school, what it is we are dealing with. There is no amount of wikipeida, pamphlets, or doctors notes to relay the misery and difficulty that a person experiences with this. Why can’t they make an effort to work with you? No 504 plan, or preparations that we have made have worked for us yet. I even tried sending a rant I put on here that was just a blurb about some of what he has gone through. But that didn’t even touch one the everyday IV’s, feeding tubes, bouncing from facility to facility, sometimes on the same day or night. This is our life. Let us write an essay in lieu of your test, let us take every other quiz. There has to be some sort of accommodations that can be made during an episode to limit what we get behind on. He worries, and tries to do too much too soon. Then we all stress about how long this episode will last. We don’t know. There is no established pattern for us. Hard for everyone involved. We need a working theory to help us get through and not get behind.
See we not only have to worry about school, we have doctors appointments, Iv appointments, and any other things that may pop up, unexpected trips to the ER, hospitalizations, but as parents we are juggling the jobs that we work full time, as well as medication pick up, administration times, We go into Full time clean up mode when an episode strikes.. it stress, clean, stress, appointments, organize, stress, run errands, stress, there is so much to do. And all you want to do is make it stop.
Today we opted to start the IV therapy. No one looks forward to this. On to stage two. Not looking forward to telling my son. This will not be an adventure. He already hurts so much. But I know its what he needs.
Trying to stay strong.