I had strong suspicions for a long time that Waylon had much more going on than just "developmental delay". His muscles were still spastic, despite our efforts of stretching him.
After getting ahold of his records I found that he had endured a brain injury during his first open heart surgery at our local hospital. We were NEVER told about this. I brought it up to his neurologist who described parts of Waylons brain as dead due to the injury/damage.
I did the only thing I knew I could do, the same thing I did when we received the diagnosis of his heart defect..... RESEARCHED!!
I had a very hard time finding heart parents whose child had experienced a Hypoxic Ischemic Brain injury, so I had nothing to go on. Nothing but symptoms. those symptoms lead me to a page called CHASA, Childrens Hemiplegia & Stroke Association. Waylon fit every part of this diagnosis (Hemiplegia), and when I brought it up to his therapists and doctors they totally agreed that something else was going on and it sounded like this.
Hemiplegia is a form of Cerebral Palsy. One side of the child is quite weak, their muscles can be spastic (tight), they often times need leg braces to help with stability and ankle turn in, along with other things like delays.
I felt I was onto something and that I needed to push for answers! Since we didnt see neuro for another year I went to the cardiologist and asked about having him referred for an MRI.
After a couple of weeks waiting for the results the neurologist called me. She seemed a bit agitated that I had went to someone else for this. She explained that Waylons MRI showed that his brain is not normal (we pretty much knew this). She said that the only changes they seen (compared to the MRI from 2 years ago) was that his ventricles are enlarged and the spot of Hydrocephalus (Spot within the brain that is filled with Cerebral Spinal Fluid, most likely due to brain damage) was now bigger than it was 2 years ago.
I mentioned the Hemiplegia and how I felt physically he met all of the "requirements", and was met with "I have hemiplegia in my notes, he HAS hemiplegia". This was new to me! We had never been told this! It was never mentioned, not even when I told her that we didnt know about the brain injury.
I was a in a bit of shock, and quite pissed that this information was withheld from us. Her act of kindness and sincerity at the last visit when finding that we were never told of the brain injury, felt like just that, an act.
She continued to go on about how if I only needed a diagnosis then she could have just given us one, it wasnt a "big deal", so she said. While typing out the diagnosis she would be sending to his cardiologist (per my request, because she gets stuff done!), she read everything off to me. Hypotonic Cerebral Palsy WITH Hemiplegia, Hydrocephalus, Hypoxic Ischemic Encephalopathy. I remained calm as she went on about the Hydrocephalus, and how she isnt concerned about it because his Eye doctor closely monitors him and how she wanted me to call her and see if she has noticed pressure at the recent visit. We have to keep up with the pressure to make sure the Hydrocephalus isnt growing and need intervention in the form of a shunt.
WAIT, WHAT?! The eye doctor will keep up with this? The same eye doctor that we missed a visit to last year and didnt see for 12 months? The same one who DOESNT know about these diagnosis, just like no one else on his care team because its "in my notes". How the hell can you diagnose a child and NOT tell the care team, let alone the childs parents?!?!
I kept calm while on the phone, but as soon as I hung up it all hit me. The only thing my mind could muster together was "My child has Cerebral Palsy", over and over and over.
My heart broke.
My stomach was in knots.
As tears flowed I thought "where do we go from here". What would be our next step? What do we do now? What if my child never walks? (That question has played over and over in my brain before this diagnosis ever came along, and I never quite knew why). We obviously have to search for care somewhere else, that is a given. We can no longer trust this "team" to give him what he needs. A diagnosis that should have been shared with ALL of his team so that he could receive everything he needed, was not. Trust is gone.
I am so glad that we have our sons cardiologist on our side, but I still feel like my husband and I are standing in a dark room holding out hands searching for a light. Searching for the best decision for our son again. Another life threatening diagnosis (hydrocephalus) piled on top of us, and we cant find the exit, because there isnt one. We just have to deal. We have to pick ourselves up, push back fear and dig into searching for the best care.
Its not so simple though. We cant place our fingers on our state map and say "Here is good". We have learned early on that doctors and centers are NOT created equal, and while one center may excel in one diagnosis, it isnt so good in another. We also cant JUST go to a center that does neuro and doesnt have a good pediatric cardiac center. Why? Because anytime Waylon has anything done he has to have a peds cardiac team there too, to ensure that IF something went funny with his heart he would be safe (and so much more). So we are left with trying to decide between his current surgical site, Motts childrens hospital in Ann Arbor Michigan, who is absolutely amazing with Waylon. They know him, they can care for him the way he needs without question, we TRUST them. But neuro side they are rated #23, while Cincinatti childrens is closer to us, and rated #6 in neurology. BUT, they arent ranked as high in cardiac, and have been falling in numbers over the past few years.
So you kind of see our dilemma. Its scary. This isnt a small cold for a typical child. Its a child with half of a heart, a child with fluid on his brain that seems to be growing. So much plays into a decision, its not cut and dry. Its scary, and it could be life or death.
I am so scared of making the wrong decision. I dont want things to end like they did at our local hospital. And though we were lied to there, I still feel guilt for having him there. It was not our fault, but sometimes I feel that way. As any good mother would who is trying to give her critical child the best.
Now, what does this all mean for Waylon. Well, some of it we dont really know. Most of it will be a "time will tell" scenario. He could need assistance for the rest of his life to walk, he could need surgery on his spastic left leg in order to walk properly if we cant get it straightened out. He could need his braces for a LONG time. He could need surgery to place a shunt to drain the Cerebral spinal fluid (this is highly likely, especially since he has enlarged ventricles, which usually means there is an obstruction). We also dont know if he will progress well for a while and then stop, and that be where he is the rest of his life. Again, up in the air. So we have to take in all in strides.
What I DO know this means for Waylon: He is incredibly loved, no matter what! We will continue to push him and to push for him to receive what he needs to have the best quality of life that he can. We will continue to take on anyone who isnt doing what we feel is best for him, even if it means going behind their back and going to someone who better suits him. We will FIGHT for him, as we always have. I know that he is AMAZING. He shows me his will and fight everyday. He shows me how smart he is. His strength gives me encouragement, especially on the hard days.
I am so glad that I trusted my gut and pushed for answers for him, even though they have been hard to hear and scary, they are being taken care of like they should be!