As the school year has ended and summer has arrived, I have found it very difficult to find the time (and the energy) to write. As any parent knows, there are no lunch breaks when home with your children. I rest my head at night wondering where the day went all the while waiting for Caden to wake up and the overnight pain nightmare to begin.
In my last post I wrote that I was "freeing" Caden of the diet set by doctors and trying one of my own. Although the diet has not resulted in what I had hoped, it has given me a sense of empowerment over my son's care. It has allowed me to be Mom rather than a nurse following doctors orders.
Caden has been on the Mom developed blenderized diet for a little less than two weeks. It is a high calorie, gluten, whey protein and lactose free diet consisting of a variety of organic and natural foods (including some from my very own garden). I tasted it myself and find it tastes like a peanut butter and coconut shake (not bad considering it looks pretty gross).
The one benefit we have seen from the diet is that it seems to leave his stomach much faster than his previous diet. The advantage to this is we can give him his feeds in shorter intervals allowing his last feed to be done around 6 pm rather than 8 pm. This means he is not going to bed on a full stomach. In theory this would suggest a reduction in vomiting and overnight pain, but that has not been the case.
Caden continues to vomit despite having less residual when vented. His overnight pain continues requiring us to vent him and often give him an additional suppository. There have been days in the past week where he has not slept at all (last night included). He is literally up ALL night and somehow is able to function the next day. This is not healthy and continues to be very concerning.
We will continue the diet as it has not made things worse and at least I know my son is receiving real food. Although it takes a while to prepare and insurance doesn't cover any of it, it gives me the opportunity to "cook" for my son. Something I have never been able to do before. It is also the first time Caden has received all real ingredients in his entire life. It has given us a sense of independence from the "straight out of the textbook" medical professionals who feel formula is the only way to go with tube fed kids.
Last week Caden had several appointments at the Children's Hospital of Philadelphia. He saw neurology who shared the same ongoing concern as us in that Caden does not sleep. He ordered a sleep study to see if we can figure out why he isn't sleeping. Knowing our luck, the night of the study will be the one night he sleeps beautifully and like all his tests, it will come back "normal". His neurologist also increased the dose of his one pain medication at night hoping it would help him sleep and reduce some of the pain. We have seen a slight improvement in Caden's sleep some nights but most nights it's the same old Caden.
Caden also had a glucose breath test done last week to see if they can figure out why he is having so much intestinal pain. Of course we have not heard from his doctor and I know I should call, but we are assuming like every other test it, too, will come back "normal".
It looks like we are heading out to Columbus, Ohio the beginning of August to see the motility team (under the direction of Dr. DiLorenzo) at Nationwide Children's Hospital. They plan on doing an extensive gastric emptying study and then we will meet with one of the G.I.'s. We have hope that because they are willing to see Caden, they may feel there is something that can be done. However, at the same time, we know this is our last resort and I fear they may say there is nothing they can do and then we watch Caden vomit and suffer in pain every day of his life. Despite knowing this possibility, however, I remain optimistic.
The biggest appointment we had last week was with the PACT team (Patient Advocacy and Care Team). Their role is to help families cope, come to difficult medical decisions about their child and assist in improving the overall quality of life of the child.
Matt and I spoke openly and honestly to the doctor and social worker. We shared our fears, frustrations and concerns. And then we talked about what Matt and I have known but have never really discussed with others. Quality of life versus quantity of life.
You see, when we first learned of Caden's brain injury we feared he may never walk or talk "normal" but assumed he would walk and talk and go on to live a somewhat typical, long life. The life expectancy of a person with Cerebral Palsy is much the same as a non disabled person. What often shortens the life of someone with C.P. are the other things that the brain injury may cause (seizures, cardiac and/or respiratory problems). But Caden seemed perfectly healthy at one time. Other than a little reflux, he appeared to be a boy with C.P. and one who his therapist said would most likely be walking by age four.
Today, we see things differently. We don't think about whether or not Caden will ever walk or talk. We don't discuss alternatives to playing soccer. No...we talk about how to keep him free of pain; how to help him sleep through the night; how to keep him from vomiting. Our dream for our son has changed from expecting parents who hoped for a "perfectly" healthy little boy who would grow up to be a typical adult, to parents who hoped their son would walk with a walker and talk (although slurred) to parents who are hoping their little boy sees his fifth birthday.
This is what we talked about with the PACT team. We discussed when we should stop looking for answers; not cures but answers as to what is going on and why our little boy has regressed. The doctor suggested we emphasize with the motility team at Nationwide the importance of their opinion in that we are considering it a last hope (at least for now). We talked about when we stop; when we just keep Caden home and keep him as comfortable as possible.
We are not there yet. Honestly, I am a long way from there. I am not ready to dope my child up to hide all symptoms so the truth can not be found. But at the same time, I am tired of watching him suffer. Now please understand, Caden is happy more than he is in pain. His vomiting has become a way of life for him and for whatever reason he still seems to function on very little sleep. This is why we will keep searching for answers. Caden will let us know when pain management is more important than the truth but for now he continues to fight. I know he does not want to be so doped up he can not function or be aware of what's going on.
There's a perfect little boy inside his very broken body; a boy who has so much to offer; so much to give. We will continue to fight but have also come to understand that we may not have him with us as long as we would like. Therefore, we will give him all we can. We will open his eyes to the wonders of the world. We will do our very best to make all of his dreams and wishes come true. We will work to give him a sense of freedom where Caden can do anything he wants despite his limitations. He will have his Independence Day. This we promise.