Happy New Year, friends! I apologize for the long absence; the holidays have been busy and exhausting for our family. We were shorthanded with the temporary absence of Alphonse’s caregivers and our continuing saga with difficult behavior was made harder with Alphonse’s ear problems. Daddy’s absence also made the holidays bleaker than it already was. I could go on and on about what really went on, but let it suffice to say we were all in desperate need of a Happy New Year.
And so, we greet 2015 with a rare, real family photo, taken one sunny morning at the memorial park where Daddy sleeps. We spent the mornings of Christmas and the New Year by Daddy’s grave- just me, A♥ and the boys sitting quietly in the marble benches beside him. It was our first Christmas without Daddy and truth to tell, the loneliness was sometimes too hard to bear. In the park, however, which was quiet that time of day, we breathed easily as we soaked in his memories. Our somber reminiscences easily turned into joyful banter as we remembered Daddy and all the crazy, funny things he did in his lifetime. We felt connected to him again. Even Alphonse seemed happy there.
These smiles are for you, Daddy. ♥
Over the holidays, well-meaning friends have asked for an update on Alphonse. I sincerely thank all you who think of him with love and concern. I know how busy your lives can be and to reach out beyond your comfort zone to ask, to wish, to pray, and to love is often impossible for many of us. That you do is a continuing testament to the friendship that you have generously and selflessly extended to me and my family. Thank you.
Alphonse is well, generally speaking. We are looking at a second procedure to drain both his ears, probably by the end of this month. I know some of you have asked about the first procedure so allow me to give you a more detailed story on what happened then.
We went in the hospital last November 26, Wednesday afternoon. The surgical procedure, which only took two minutes in real time, was performed on November 27, Thursday morning. Easy peasy, right? As is the case with Alphonse, what went on between admission and surgery was another story altogether.
To be honest, Alphonse did admirably well under the most stressful circumstances. He is deathly afraid of hospitals and doctors and will do anything to escape and run away. It took just six people to hold him down for the IV insertion, and only because he didn’t fight us with all his strength. I was able to wrap him in a blanket without resistance and this made it easier to hold him down the rest of the time. The IV line went in without a hitch.
“Easy” is relative.
Two hours later, however, he decided he had had enough and using just one hand (both his hands were wrapped and covered so he would not be able to remove the line), he was able to remove the whole IV line- tube and cathether- in one go. I’d have said he has the makings of a Houdini right there, the way he wiggled his arm out of the splint, the cloth covers, and layers of sticky Leukoplast tape.
He also refused to sleep and roamed the halls almost the whole night. When he became agitated and started howling loudly, we asked the doctors for a prescription to help him calm down. Even with that, however, he kept walking and roaming till he fell asleep on his feet. It was almost two in the morning and the nannies and I were all so tired, we fell asleep as soon as our heads hit our pillows.
An hour of restless sleep later, we woke up to the sounds of nurses and doctors preparing for the IV line reinsertion. Seeing all those people surrounding him shook Alphonse from his stupor. It took eight people to hold him down this time. Perhaps sensing the futility of resistance, Alphonse gave up fighting rather quickly. IV line 2 was secured in no time at all.
In this corner, weighing 76kgs… Hand wraps to go with his boxers’ ear
On hindsight, the whole thing went down too easily. We should have been more vigilant but sleeplessness has a way of dulling the brain. I am amazed that Alphonse was wily enough to surrender when his strength was weakest and to bide his time till we were not watching. Half an hour later, as we tried to engage him with Youtube videos, he pulled out the tubing by wrapping the plastic line around his elbows and pulling hard. Were it not for additional layers of tape, he would have pulled out the IV catheter as well, which would have necessitated a third reinsertion. It was past four in the morning then and we could not wait for the day to start.
The surgery team came up to fetch him at six. He went willingly in a wheelchair. Although we could sense that he was a bit afraid, he held our hands obediently and followed. There was still another hour’s wait then, and though he tried to escape thrice, he also listened and stayed when I asked him to. I have to give him credit for this unexpected restraint and compliance. Even when all his instincts went against everything I said and asked of him, Alphonse listened and trusted me.
On our way to the OR
So it just about broke my heart when he struggled to stay awake and stand up through repeated intravenous injections of the anesthetics. The anesthesiologist (God bless his kind heart) gently coaxed Alphonse into the stretcher, talking to him calmly and with so much gentleness and reassurance. And as Alphonse finally drifted into sleep, the doctors made sure mine was the last face he would see. I was also the first to greet him when he came out of anesthesia.
Alphonse woke up, post-operatively, after an hour and a half in the recovery room. He was groggy and disoriented. He shivered uncontrollably and retched from the anesthetics. He tore the pressure dressing off his ear within minutes of waking up and pulled out the drain the doctor left in it. He calmed down a bit after seeing me but refused to go back to sleep anymore.
He didn’t go back to the hospital room the rest of the day.
The doctors allowed us to go home late in the day after all the effects of the anesthetics had worn off. Seeing the difficulty of putting back pressure dressings, they agreed to let us go home on the condition that we would manually drain his ear, keep it sterile and aseptic, and continue to administer topical and oral antibiotics. As another prerequisite, my brother-in-law John, who happens to be a surgeon, would be asked to keep watch over Alphonse’s ear and reopen the drain site if necessary.
In the days that followed, Alphonse willingly let us clean his ear and drain it of fluids. I have to reinsert the tips of a pair of mosquito forceps daily in the incision site to keep it open and even then, we have had setbacks when Alphonse hits his ear with his arms or his fists. But just before Christmas, his ear ballooned again, this time severe enough that it necessitated intervention by my brother-in-law. Alphonse has been wary of us since then and scuttles away when I pull out the gloves and gauze in the mornings.
Over the holidays, while we dealt with one setback after another, we were able to work on trying to diminish his episodes of head banging. Although this behavior still appears now and then, it no longer has the intensity, frequency, and duration of the first few weeks. And yet, a secondary behavior has appeared- the hitting of his entire face with his arms and fists- and this is proving more difficult to address. As a result, Alphonse’s right ear is not healing, his other ear now contains pockets of air, and his face, neck, and arms bear bruises and wounds from being gouged and scratched.
I don’t have the heart to post his “real” pictures, the ones where there is a huge wound on the left side of his nose and bruises and abrasions on his cheeks and forehead. I process his pictures on Photoshop, carefully removing the wounds and cuts. Alphonse is not unhappy most of the time and his smiles are so heartfelt and so genuine that even I wonder what goes on inside his mind when he hurts himself.
I wish I knew the answers to this question. I wish I knew how to ease him of all his uncertainties and fears. For now, as we move on to the New Year, all we have is the hope that all these will pass away and soon, we pray. In the meantime, we ask for more prayers for healing and calm for him. Thank you, dear friends, for your good thoughts and wishes and Happy New Year again.