It’s been a week since I last posted an update on my blog. I apologize to those who left comments/ suggestions, and sent private messages and e-mail. I know I have been sorely remiss in answering your messages but it’s been difficult finding the time to sit down and write. Aside from the death of our monitors which has severely limited my access to the Net (he threw two monitors on the ground one after the other), from waking to sleeping, all our hours are devoted to keeping Alphonse safe and happy. We have not always been successful but we keep trying anyway.
It’s been three days since we got home from the hospital. Following my post last Monday, we conferred with our doctors to look for a hospital placement for Alphonse. On Tuesday, after several failed attempts to secure a private room for Alphonse in any of the hospitals our doctors are affiliated with, the only other option left to us was private psychiatric facilities in our city. My husband and I thought long and hard about this arrangement- Alphonse would be placed in a secure facility without us and he would be in a mixed population of adults of various ages and diagnoses- we decided against it. Alphonse, despite his size and strength, is still a child and putting him in with adults did not seem like a good idea. We decided to look for other options and wait. As physically exhausted and as emotionally drained as we were, Alphonse’s safety and security could never be compromised.
In the end, we were fortunate to get help from our developmental pediatrician, who, having just come home Tuesday night from a medical congress in France, immediately admitted Alphonse to the hospital under her care. She referred him to various disciplines for evaluation and he was seen by psychiatry, neurology, cardiology, and gastroenterology. Despite an extensive investigation, none of the results we got were conclusive. He is physically healthy. Even with seven years of Risperidone use, his liver and kidneys are perfectly fine. He has mild gastroesophageal reflux, which was already being treated prior to his hospitalization. His ASO titer is negative but his markers for inflammation (ESR and CRP) are elevated, pointing to a nonspecific infection in his body, and perhaps these deserve another look see.
In the hospital, Alphonse displayed his bizarre compulsions by forcibly removing the telephone, buzzer/pager, and blinds. We saw him eyeing the wall-mounted television so that had to go, wall mount included. Later, he pushed the mattress off the hospital bed to the floor, where it would remain, for the duration of our stay. We were without blinds so we fastened sheets on the windows when he fell asleep to give us some privacy. When he awakened, he would pull them down again. Intramuscular injections of olanzapine were given when Alphonse was agitated. This powerful antipsychotic, however, did little to help him sleep as Alphonse stayed awake the first night in the hospital, taking in a total of three hours of sleep over a 36 hour period. When an IV line for anesthetic premedications (they out him under general anesthesia to get the endoscopy and CT scan done) were inserted, he became severely agitated; he bit the IV tubing in less than 15 minutes. His doctors settled for a hep-lock instead.
Because he did not display overt aggression in the hospital, we were hopeful that his medications had finally reached therapeutic levels in his blood. We were released after a three-day stay in the hospital, with prescriptions for his medications (Abilify, Nozinan, plus a new one; our neurologist added Depakote as a mood stabilizer). Since our medical insurance did not cover this hospitalization, we paid for all of these out of pocket.
Still, the ride home should have given us a sign that things would not go well for us as soon as we came home. Alphonse was hyperactive, manic, and frenetic. He took off his seatbelt, transferred seats and rows inside the van countless of times, much to his dad’s dismay. He removed the contents of our bags, strewing them inside the car. Near the house, he grabbed the head of the nanny sitting nearest him and yanked her hair hard till the roots came out. The violence and aggression were back and it would continue to haunt us all weekend.
On Saturday morning, he awakened at two in the morning and proceeded to terrorize all of us again. He trashed our bedroom, overturning my table and destroying my hello kitty cabinets. He kicked electric fans in a fit of rage, sending them flying across the room. And he came at us again and again, pulling our hair, kicking and biting, scratching and pinching. We were back where we started.
We gave his meds at the appointed time and he seemed to calm down for a while. Perhaps he had exhausted himself as well, as he fell asleep mid-morning. We had not eaten a bite since dinner (lunch the previous day for me), our house was a mess, and we were run ragged but we slept when he did, if only to catch up on our flagging energy.
Sunday was the same story. While his medications brought us some moments of calm, he still had frequent tantrums that brought all of us to tears. Even his dad was not spared as he now sports cuts and bruises on his neck, chest, arms and hands. He is not eating and drinking enough and it takes all sorts of cunning to convince him to take more than a sip of oral rehydration solution. Between his anorexia and the effects of the drugs on his system, it’s heartbreaking to see him looking the way he does today, still so unhappy and so angry.
We thought long and hard if we should return him to the hospital, but we decided to keep him here at home and work through this. We have hired male help to assist us at home and our case manager, teacher Rod David, has generously gone out of his way to assign us male therapists for twice daily sessions, Monday to Sunday. By putting him back on a strict schedule, we hope to help him find security and safety again. I am grateful to teachers Paolo, Wilson, and Mark for their dedication and their willingness to sacrifice for us.
Meanwhile, as we continue to exhaust all possible remedies to this relentless siege, we hold on to prayer for comfort and support. To all those who left comments and suggestions on this blog, on my Facebook account and my e-mail, thank you. I am listening to all your ideas, taking them in, and learning to use them to cope with this better.
We continue to struggle each day. It’s a hard uphill climb to get back to where we were a few months ago. Yet, despite many moments of despair and desolation, of anguish and tears, of heartbreak and sorrow, we hold on to our love for our son and for each other. And we hold on to you, dear friends, for your support, your words of kindness, and your prayers. Your kindness is our salvation.