Leukemia Blog - AML Alternative

Waking up

12/24/2006

Alternating between sedation and pain for two weeks was not fun for Jaymun. I wonder how much of it he remembers.

For five months he woke up to warm bottles and the loving embrace of his mother. As much as his parents suffered through the past weeks, imagine how our baby boy felt to drift in an out of consciousness through excruciating pain, loud noises, strange faces, and numbing narcotics.

Swiftly Jaymun's old comforts vanished. His weight increased by a third. All those extra fluids pushed up on his diaphragm until his left lung shut down. Fatigue and sleeplessness wore him down due to his rapid short breaths and racing heartbeat. Movement was agonizing - we couldn't snuggle him - he could only lay flat on his back. I couldn't even walk around singing to him. (Maybe some people were grateful for that!)

The morphine narrowed his pupils to a pinprick - I wonder how clearly he could see us, or even hear our voices over the confusing cacophony of mechanical and human life support.

Enduring this might force the strongest adult to mentally retreat into a small hideout. At five months old, I really wondered how Jaymun was handling it? It was one of my strongest prayers - for God to protect his baby emotions and make him feel loved through all of this trauma.

Now the excitement is over. The emergency past, the doctors are managing the converging withdrawal from diverse life-support measures. We adults have been living on prayer, adrenaline, and coffee. We process these events in our own ways - each practicing what we learned from the past. Jaymun has little point of reference for this sort of thing.

We are all waiting for his famous grins. Remember though, those grins were fueled by five months of our tender loving care. The past weeks it must appear to Jaymun like there was an abrupt embargo on his love supply.

Friday morning saw Jaymun just lying here - taking in the room with big eyes.

"Jaymun! Jaymun! It's Dad... Hey Buddy!"

For a moment he didn't really respond. Then his lip started quivering. And I prayed "Lord - please help Jaymun to feel loved this morning." I put my hand on his head and bent close...

"Jaymun... buddy! It's ok... you been having a rough time? I'm sorry buddy... that was really scary huh?"

At that point his face assumed the most pitiful expression I have seen, and he began to sob and sob. Not angry or upset baby crying - but real, sad sobs. Big tears running down his face. And not his alone - I think I was crying harder than he was. I had wanted the grin - to make sure I still had a connection with my son - and what I got instead almost overloaded my emotional circuits. Here the little guy is telling me how awful he feels and I wonder if he even anticipates it ever getting any better. Does he think I don't care about him? That this pain is just going to go on, and on, and on...? Does he wonder why I am letting this all happen? I am torn by a fierce love that would at once annihilate any threat to him, and sacrifice everything to wipe those tears off that sad, puckered face.

So... yeah... the past few days have been pretty tough for Jaymun. Less life-threatening tough now, but miserable tough. I'm sure his entire body is painful, his head and chest hurt. He may experience a certain amount of narcotic withdrawal. He cries a lot and doesn't sleep very well. When we attempt to pick him up he starts whimpering - almost like he thinks we were going to hurt him.

The docs checked out everything again - just to be sure. Heart, lungs, head CT, etc. - all good. Yesterday they took him off the new liver drug - they will still monitor it but for now his liver is operating properly! We are all very happy about that!

Yesterday I held him for hours and that finally seemed to calm him. Through the evening when I would pick him up he would readily accept being snuggled and make little grunting noises while I hummed.

So the consensus seems to be that we need to give him lots of tender, loving, care (not hard to do!) Hold Jaymun. Snuggle him. No loud noises, No fast moves. We want him to expect that when we come to take his blanket off, nice things will be happening instead of painful, cold, non-comforting, experiences. For him to know that when we greet him cheerfully we are not just preparing to annoy or hurt him. That we are not picking him up to transfer him for some uncomfortable analysis. That our touch is not just a cover for more probing and pushing.

And I think it is working. Every time I hold him I can feel the stress soaking out of his body. At first every part of him was tense. He was holding his arms up and not relaxing his legs. But I wrapped blankets as much as possible UNDER his wires so he would have the comforting feeling of cloth against his skin. And I rocked and hummed.

Finally late last evening he started really settling in to my arms. Breathing those deep shuddering breaths. And he slept. And slept. This afternoon he is still sleeping. We moved back up to our own room where it is quiet. His air filter makes lots of white noise. The lights are off. If we wake him briefly to change his diaper he goes right back to sleep.

As I watch him, there are no words to explain the emotions I feel. He is tired, and sick, and dependant. As he comes back to this world I want him to remember my voice and touch as a promise of love and security. My arms as a haven from confusion and worry.

The lessons of this Christmas week go deep for me. Our family is home sick with the stomach flu. I am alone here in the dark on Christmas Eve with my son...
...with the amazement of undeserved blessings, and the awe of feeling the presence of God.

Possibly I am not the only Father gently waking his child.

And not the only child confused by the cacophony of life into forgetting the love and security in the Father's touch.

Jaymun is waking up, but this child remembers how sweet it is to rest in the Father's love.

"Lord... how foolish I have been. Why did I doubt You? Thank You for caring...

...while I was sleeping."

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