Shade's Progress

At around 8:30 p.m., Thursday, July 14, our daughter, Arianny, called us from San Antonio where our two sons, Shade, 12, and Mayan, 8, were visiting for a week. Shade had complained about an itchiness on his cheek. She took him to wash his face in the bathroom. He then said he couldn’t hear out of his left ear. Suddenly he screamed that something bit him on the neck and he collapsed in her arms. She called 911; they came quickly and rushed him to University Health System. Arianny went with him and called us with regular updates. At first we thought he might have had an allergic reaction to something. Then Arianny called with devastating information. He had had an aneurism. The doctor came on the phone, told us it didn’t look good, and instructed us to get on the first flight to San Antonio.

Essentially she implied that Shade was going to die. We were devastated. We booked three flights for Aitza, our older son Edwin, and myself, to San Antonio, but as it was now nearly midnight, the earliest flight we could find was 6:55 a.m. the next morning (Friday, July 15). We spent a rough night of no sleep, crying, and desperate phone calls. Seliena, my sister-in-law, called Arianny and some other friends with knowledge of brain injuries, and we eventually came to the conclusion that there was still hope for our son. Still, that was the longest night of our lives.

After 2 hours sleep, we got a lift from my dad to the airport and made it to San Antonio by 8:35 a.m. Fabian, our son-in-law, met us at the airport with Mayan and drove us to the hospital. We finally got our first teary sight of Shade since he left a week ago.

Shade was in a sedated state. He was hooked up to lots of monitors and drips to keep him in a steady state. He had a shaved portion of his head where there was a surgically inserted drainage tube that was releasing some of the blood from around his brain and relieving some of the pressure.

We talked to the nurses and neurosurgeons that had been monitoring him and reviewed his CT scans. Here’s a rundown of the general info they gave us:

Essentially Shade had a stroke in his brain stem. They thought he had a congenital vascular malformation, an AVM, though they weren't sure. It could be a cavernoma. Basically it's a vein network in his brain that isn’t supposed to be there. They see it here occasionally, often after a stroke like this. Most people that have it never know unless they happen to be scanned for something else and it’s discovered. It can also be discovered if a person has lots of severe headaches. If they do find it before a stroke, many times they do nothing as the surgery can often be as damaging as the stroke. They tend to monitor it in most cases.

When Shade’s burst, it filled up areas around the brain stem and the ventricles. The CT scans showed this blood build up in these areas. They’re draining some of the blood around the brain to relieve pressure, but the blood in the ventricles and the brain stem will have to be absorbed by the body. When Shade came in that night, the pressure that had built up around his blood stem was so great that they thought it was going to shut off circulation to his brain and make him brain dead or outright kill him. In the 12 hours after that time, the progression of CT scans showed some release of pressure around the brain stem, which is critical.

Shade was also responding well to physical stimuli. Dr Bertanusz, the on-call neurosurgeon from that night’s surgery, gave him some reflex tests. He responded to the hammer on the knees and arms, his feet curled when brushed and he kicked back when his legs were pushed up. The right side responded more purposefully than the left. His eyes also had consistent dilation. These are good signs, though the doctors warned us many times that things could change just as quickly for the worst. However, Dr. Armijo, the head ICU doctor, was very cautiously optimistic because of his progress. She was, however, very careful with her words of optimism. She said this isn’t a “take it one day at a time” situation. It’s a “take it one hour at a time” situation. Improvement could continue, stop at any time, or even take a turn for the worse. They really can’t say.

The main focus was to maintain the bleed, which stopped. They monitored it closely and kept him in a very calm state so that the body could naturally heal the area and prevent a second bleed. Until that was controlled, they could do very little else. If that seemed to be in a manageable state, they would look into the vascular malformation. That’s not to say they could really do much about that, but the neurosurgeons would consider options at that time. If all went well and he started showing signs of progress, then they would talk about rehab. Again, because they did not know how much progress he may make, if any, they couldn’t really say what kind of rehab or how long it would take. Dr. Armijo said it was going to be a very long road ahead.

Neurosurgeons took intermittent CT scans to monitor the bleeding. They were all very helpful and willing to answer all questions, even though most of the answers ended up as “We can’t be sure.” and “We’ll just have to wait and see.” Meanwhile, we waited in San Antonio, unsure of the future of our son.

One thing that is certain, Shade was only alive because Arianny acted so quickly. She’d just got her RN certification that week too. What a final exam! God bless her.

Since this first night, Shade has had ups and downs but has progressed from the PICU to the PTU and is now at Santa Rosa Pediatric Rehab Center in downtown San Antonio. I've documented his entire journey at http://shadesprogress.com/ if you'd like to follow his continuing progress. I update it daily. I hope it gives you hope for you or your loved one. The brain is an amazing organ, and we are seeing its vast capability every day through Shade's progress.

((((Vincent)))) again...Welcome and truly Thank~you for sharing Shades story...of true survival...I am crying while I read this post...one thing us adults having annies...but a boy of Shades age...wow...! You and your wife and family are also "survivors" ... this has had to be hard on the entire family...

Silent prayers go out to all of you from me...! God Bless...Colleen