A grandaughter's story of ALS

As I mentioned in my last entry my grandfather is sick. The ordeal started like 2 years ago when we noticed he was unable to speak clearly.
He is veteran from the Korean war in the 1950's therefore, the VA hospital system takes care of him. His primary physician thought he had some sort of malignancy within the throat and sent him to an ENT. The ENT (I mean 3 ENT's) didn't find anything after countless exams which spanned month amongst each other. In the mean time my grandfather presented other symptoms but because of his personality he hid them as best as he could from us and particularly the doctors. As time caught up with him it was inevitable to notice the symptoms. For example, eating became an ordeal, he lost weight, he could not turn the car key and fell off his feet at least 3 times within a few months. We were worried specially because he could not eat and was loosing weight at an alarming rate.

I started looking around and became convince he had Amyotrophic Lateral Sclerosis (ALS). My mom told my concern to the primary physician which told her she had rejected that diagnosis due to the negative result from an MRI. I immediately knew we were dealing with an incompetent doctor and became really worried. ALS diagnosis does not requires visible lesions in an MRI.

Finally approximately one month ago the neurologist prescribes an electromyogram and finds his nerves are degenerated, therefore unable to enervate the muscles. This also leads to muscle degeneration and most likely the symptoms we observe. So now we know that indeed it was a neurodegenerative disease (NDD) doctors refrained from giving a diagnosis because they are many NDD's out there.

At this point we knew that he needed a food tube because he was unable to feed properly and was under 100 pound. This was all really alarming to us but
the VA doctors didn't seem to realize the urgency of the matter. Our family was suffering very much. The next scheduled neurologist appointment was for September 7 2011 but my grandfather had a really bad cough so he decided to go to the emergency room on Sept 1. He arrived walking and waited until he was received at 3am. Once there he was admitted due to a pneumonia. I was pretty alarmed to hear this because typically people with certain types of NDD can have a very bad prognosis after having a pneumonia due to aspiration. This happens when the person is not able to control food entry into the lungs. They caught it early and
thought he was going to be fine. At this point we were happy that maybe they were going to schedule the food tube operation and he was going to get a better quality of life for just bit.

The next day he aspired food into the lungs again, but this time it caused a respiratory failure and they had to resuscitate him. This was not ideal for an NDD patient because typically the degeneration ends up affecting the lung muscles and this leads to serious life treat. The doctors wanted to ex-tubate him as soon as possible, but instead he ex-tubated himself. That was the last night he was his own self. Next day his lungs were not strong enough to breath on his own and they intubated him again. By then all the grand kids had flown to PR to be there for the worst case scenario.

After this ordeal the neurologists diagnosed him with ALS I felt good and bad, good because I had told my mom and bad because I knew he needed help earlier on. I felt he had not allowed himself a better quality of life by hiding his symptoms early on. In addition I felt the VA system had fail him by delaying his appointments and not following earlier neuronal diagnosis. This bothers me because military soldiers have 60% more probability to get ALS than the average American. It seems ironical now that he himself told me the Korean war was useless and that he would have not gone had he not been drafted. But what the heck let's just deal with reality.

Now the neurologists had done the electromyogram to the hypoglossal nerve which is correlated with ALS. With this in mind the doctors presented us with several options one was letting him die after extubation since he only had 3 months of life expectancy or do the tracheotomy for the breathing and the PEG (percutaneous endoscopic gastrstomy) for the feeding tube. Whit this interventions he was going to live in life support, taking into account his is cognitively normal. This was a painful and hard decision to make because we all knew he would not have wanted to do life assistance, in the other hand who wants to be responsible for making the decision that ends his life? We agreed to try waking him out of sedation to ask him what he wanted. Unfortunately he didn't woke up enough to be asked. My family then decided to go with life assistance. To our surprise the surgeries were done by next Monday and things were finally unfolding. Nevertheless something always has to happen.

After the PEG operation the surgeon realized there was a chance they had perforated his GI tract while doing it. We were then again presented with the decision of operating or not, both situations were critical and potentially life threatening. He was intervened and left with a colostomy. This was quite devastating to us because now instead of 2 holes in his body he had 4, due to the way the colostomy was done, therefore his quality of life went to even lower because of bad practice.

Fortunately or unfortunately, Abuelo Ferdinan woke up yesterday and was ordered off from sedatives. Therefore I got to interact with him. Today my grandfather was moved from SICU to the ventilation floor, meaning he is recoup from surgery. Next they will send him home. My mom and grandma will have to take care of him as if he was a baby and if you ask me I don't think I believe this is reality yet.

It was a struggle for me to decide to come back, it was the first time it truly hurt to leave PR.

Un poco de Catarsis

Estoy en la casa de mis padres hace 15 días sin P porque mi abuelo esta grave en el hospital. Lamentablemente no podíamos traer a P económicamente hablando. Las primeras 24 a 72 horas aquí como que se esfumaron de mis manos y la angustia fue la guía de mis movimientos. Muchas cosas han pasado con mi abuelo pero para eso necesito otra entrada.

En estos días me levanto, desayuno, me preparo y nos vamos al hospital, llevo 15 días haciendo este insípido ritual. En el hospital siempre hay que buscar un estacionamiento que no existe. Luego entramos y ese transcurso se hace eterno porque mi abuela camina cojita. En mis pensamientos me veo llegando dándole mis llaves al valet y corriendo al lado de mi abuelo, ver si despertó si se movió, si nos llamo o si todo lo contrario pasó. Pero ese pensamiento nunca se ha materializado, en su lugar llegamos a la sala de espera de MICU o ahora SICU y tenemos que sentarnos a esperar. Este esperar no es idóneo, no necesariamente porque quiera ver a abuelo rápidamente sino porque, en el esperar mi mente corre desbocada.

Todo este tiempo me ha hecho recordar lo activa que es mi imaginación y descubrí que hasta cierto punto desde que salí de la casa de mis padres esta ha estado un tanto silenciada. El estar con mis padres de cierto modo ceñida a una rutina con ellos, me ha hecho revisitar lo que era mi vida cuando vivía en casa con ellos. Ya que mi vida en el pueblo de Florida, PR en el recóndito barrio de La Maldonado era tan desaborida, mi mente siempre me sacaba fuera tejiendo ilusiones e ideales. Para añadir otro nivel de complicación mi hermanita la nueva universitaria me habla de sus aventuras en el Colegio de Mayagüez. El primer lugar donde me encontré a mi misma y real.

Pienso que toda esta activación de mi sensibilidad si ha estado silenciada y esa inmutación comenzó gradualmente desde que salí para el Colegio de Mayagüez. Tanto que estudiar, tanta gente que conocer, tantas fiestas que atender no te deja espacio para pensar. Y luego la tremenda tesis doctoral que solo me dejo un huequito para enamorarme : ). El pensar, el estar sola es lo que activa la imaginación y me doy cuenta que mientras más pasa el tiempo más las responsabilidades silencian esa musa interna.

Todo esto me ha puesto un tanto melancólica, por ejemplo, ahora sentada en la cama de mi juventud escuchando rock en español y escribiendo es como si me transportara a ese tiempo lejano que ya no me importaba recordar. Pero a la misma vez me gusta saber que todavía existe en mí esa capacidad de salirme de mi misma y soñar. Y voy a intentar practicarla durante el “roadtrip”.

También reflexiono y caigo en cuenta de que todo ese tiempo que pase escribiendo poemas e imaginándome la vida fuera de este cuarto me sirvió para proyectarme al futuro que siempre quise. Hoy puedo decir que soy feliz que vivo la vida que me imagine en mis sueños y quizás más.

Lo cual me trae a otra reflexión necesito volver a mi casa, mi casa no es un lugar físico, mi casa es P. Ya mi trabajo aquí terminó. Les cuento luego de mi abuelo.