Wow!!!! David is one of my favorite subjects to talk about....and yet one of the most difficult for me to be completely honest about. Thus...the distance between blogs.
I think part of the reason it is so hard for me to discuss David (his health/disability in particular) is because with David...you forget that disability exists. Okay.....we at home do. To us....he is not a special needs child with issues. He is just simply David. He gets around and is extremely independent. He communicates. He plays. He laughs. He watches tv. He gets mad. He may not be "normal" by the outside world standards but by David standards...he is as normal as it gets.
The reality of Davids situation is that he was born at 27 weeks (about 3 months premature.) He was born with a grade 4 brain bleed in both ventricles....which means both ventricles of his brain were full of blood and bleeding. He was immediately put on a ventilator (where he would remain for 3 months) and he began a fight for his life. The original prognosis at the time was that he could have cerebral palsy and he could be developmentally delayed or he could be just fine. No one would know for sure until he was older and his development skills started showing up. A baby's brain is a funny thing in the fact that even though damaged (i.e. brain bleed) it can in many instances heal itself. Basically the good part of the brain can supersede the bad or damaged part and heal itself. We had hopes.
David was very tiny when born. He weighed 2.2 lbs and was only 12 inches long. His skin was still almost transparent and to me he looked like a baby bird without its wings. He was so tiny and fragile and I could only touch him as he could not be held or picked up because of his vent tubing. Because he was so tiny and his skin so thin.....finding working veins to keep blood (which he needed a lot of) and meds going into his little body were almost impossible to find, so they kept a line going through what was left of his umbilical cord. We later learned that they like to take those lines out as soon as possible, but in Davids case that simply wasn't possible......so his line stayed in about two weeks. The danger in keeping the line is infection. The worst happened and he developed a yeast infection of the blood called Candida. Immediately his whole body became septic and turned a horrible shade of gray. They had pulled the umbilical line as soon as they knew what was going on, but now he needed anti-biotics (one called ampitericin) and they could not find a vein to get the meds going. He was dying and we were watching. It was the most horrific feeling I had ever had. Eventually....God sent us an angel just in the nick of time. She was disguised as a very young neo-natal nurse who was not about to allow David to die on her watch. Thanks to her......his life was saved.....for the moment.
As David remained in the NICU...we were given quite an education on preemies, preemie illnesses, brain bleeds, blood infections, and the strength of our new born. Once the Ampitericin had done its job and David's body was infection free, we took a moment to breath. Our breathe was cut short when we learned that Candida balls up in the body in a clot like form and hides behind or around vital organs. It can then break apart and go to the lungs or the brain causing seizures, strokes and ultimately death. David being the text book child that he was had the clot next to his heart where each time his heart beat the clot dangled precariously. If it loosened it would block the artery and stop blood flow....thus killing him. He also had a clot in his stomach area basically holding onto nothing. The one in his stomach broke free. In one evening we watched as our little guy had numerous seizures followed by several strokes. The CT following all of this showed that his brain had what they called a total brain assault. His brain literally looked like swiss cheese and the prognosis was that David would likely never be more than the very unPC term......a vegetable. Luckily....God had other plans.
Once Davids actual due date arrived.....his health took a dramatic change for the better. He got off the vent, started eating and we learned that he was hydrocephalic. Hydrocephalus is where the fluid from the brain does not drain causing brain swelling and if not taken care of....death. Immediately David was taken into surgery where a shunt (a device which keeps the fluid draining from his brain into his stomach) was placed behind his left ear. When all was said and done.....David began progressing and was able to leave the hospital at almost 5 months old weighing 4 lbs with no tubes, oxygen or meds. The future was still unknown to us....but his present was looking very bright.
As time went on....David did prove to have learning disabilities, speech issues (he speaks very little), cerebral palsy and of course his hydrocephalus. Other than getting the normal colds, allergies, etc though....Davids health was good and every day he was growing by leaps and bounds. It wasn't until he was 8 years old that David had his first seizure since his days in the NICU. I awoke one morning to find him unresponsive on his bedroom floor. His eyes were darting, his skin was clammy and he did not respond to anything. I thought he was dying. After having the EMS come and take him to the hospital....I learned he was post seizure. He apparently had experienced a febrile seizure(a seizure brought on by a temperature suddenly spiking above 102 usually). He had been getting over an ear infection and had seemed to be fine the night before, but apparently early that morning his temp had spiked. For the next 24 hours David never opened an eye. I was terrified. This was new territory that I was not prepared for. Seizures were not even on my radar. After a 3 day hospital stay, being put on anti-seizure meds and several lengthy educational pep talks from the neurologist.....we went home.
Soon all was right in our home again and apparently the meds controlled the seizures well, because again....seizures became a thing we didn't think about. David progressed and continued to be David and all of his drs. were more than pleased with all the mile stones David strived to hit and complete.
When David was 9 years old....we had our one and only experience(so far) with a shunt malfunction. We later learned that his shunt had been clogging and unclogging for a period of time, but the day it clogged completely was scary. He woke up pale, clammy and extremely listless. He could barely hold his head up and only whimpers left his lips. I took him to the dr. where they immediately suspected his shunt and they sent us on to the ER. Once in the ER we found his blood pressure and his pulse to both be extremely low. My normally active child just laid looking at me with sick, sorrowful eyes. Finally after several tests and what seemed like hours of waiting.....it was confirmed that his shunt was not working properly. He was taken into surgery and the shunt was removed and replaced. We later learned his shunt had been completely clogged from top to bottom. Within minutes of coming out of recovery.....he was a different kid. He was making noises and trying to move and get around. I cried with relief. He went home the next day.
Again our world went back to normal until summer of that year when David had another febrile seizure. This one I got to witness from start to finish. Again he was coming off an ear infection which he had been on anti-biotics for. He was playing and suddenly he began to stare off an then his eyes began to dart. Finally his hand began to jerk. I knew immediately what I was witnessing. I gave David his emergency meds with no results.....so we called EMS and after about 20 min. they were able to stop the seizure with adivan. Once in the hospital David remained in the ICU for 24 hours in which he never opened an eye. Once moved to the regular peds unit he stayed another 24 hours and then was released. Another scare that we lived through and threw our world out of kilter.
We have not yet experienced another febrile seizure but for the last year and a half we have been dealing with mini seizures. They are little seizures that last maybe 30 seconds to 1 min. When they first started we didn't recognize them as seizures until I mentioned them to the neurologist. Even he didn't think they were seizures but decided to do an EEG where they found that David was having significant seizure activity. After more meds, and his mini seizures developing into cluster seizures, a summer spent in the ER and hospital and some major seizure education on my part.....we are finally at a point where we can co-exist with the seizures. No longer do I go into full panic mode or stop life mid sentence when he has one of the minis and since we continually tweak his meds according to weight and age.....he seems to be doing very well.
This year David started 3rd grade at a new school. I was nothing but a big ball of anxiety about this move up to third grade and terribly afraid that the care and attention he received in previous years might not follow him to the grade school. However.....after one week....my fears were gone. Not only does he get the same wonderful experience he got in his early school years, but he also seems to be thriving in his new surroundings. His health has remained very good this year and his development continues to evolve and grow with each day.
So as you see....David really is incredible, with all that he has survived in his little life. He has suffered more, lived more, laughed more and enjoyed life more in his 10 years than some do in 80 years. I see David as David....not someone who can't do things because of a disability, but someone who CAN do things in spite of a disability. In fact....most of the time in our home....disability and David are not used in the same sentence. We just don't see him as anything but perfectly....David. There are those times though....when he has a seizure episode or a shunt malfunction or he struggles to have us understand what he is trying to tell us that I briefly see him as slightly more fragile and a child that maybe needs a little more time, effort and care. But as I said...those times are but momentary....and then we get back to the life we have created for us.
I guess...even though I usually have plenty to say about most everything....when I start actually talking about my David, I have to come to terms with reality. The reality is that David is one of God's special children who are truly perfect in His eyes and who is here to teach the rest of us what it really means to live. There are no definites and nothing with David can be taken for granted, but I wouldn't change the last 10 years for anything. Not one ambulance ride, ER trip, hospital stay or surgery. Not one laugh, one word, or one episode of Spongebob......because it is all part of life....with the Incredible Mr. David.
