Week 2 Update

Two weeks...we have been here for more than two weeks. We have seen more Disney Channel and Cartoon Network than should be legally allowed.

Now that Alex is starting to feel better, we are working with the school program here, and did some "math games" this morning. We have more homework scheduled for after lunch.

The morning x-ray looked great, and the surgeons ordered the chest tube "water sealed". At 4pm, another x-ray is scheduled, and if that one looks good, the surgeons will take out the chest tube, and Alex will start to feel much better.

The nurses are a bit concerned about Alex's wet cough. We are encouraging "big coughs", to clear his lungs, but since it hurts to cough, it is an uphill battle.

Alex's ANC was only 26 this morning. Down from 100 yesterday. However, we do see some Monocytes starting to develop, which are precursor cells, so hopefully Alex's ANC will start to recover soon. However, we do have chemo tomorrow, so who knows?

Pain

We are able to control Alex's pain with Oxycodon and Morphine. We had hoped that today the doctors would remove his chest tube. Unfortunately, his white cells started to climb, which meant that he had inflamation which delays the tube removal. After a chest x-ray this morning showed that Alex's chest cavity was clear, the surgeons ordered his chest tube sealed. However, by the afternoon, Alex was hurting, and a second x-ray confirmed some build up in his chest cavity. So, the doctors ordered his chest tube back to suction.

If we get behind on the pain medication, our brave Alex starts to whimper from the pain. Breathing still hurts, as we try to expand his lungs by having him blow bubbles. Today is better than yesterday, which was better than the day before. We are hopeful that tomorrow's chest x-ray will allow the chest tube to be sealed, and that a second x-ray will confirm that he is stable. Once that happens, the doctors will remove the chest tube. I have been told it is like taking out an IV needle. Alex is nervous about it, so anti-anxiety medication will be administered well before hand.

Tomorrow is Tuesday, and with chemo and a bone marrow aspiration on Wednesday, I'm not sure when we will get to go home.

We have been here two weeks...I just want us all to go home.

Gurgle and Hiss

The constant sounds of the gurgling chest tube and hissing oxygen are only interrupted by the hurried noise of the nursing staff checking Alex's vital signs.

The Little Green Button

Alex's IV pole is getting full. The saline drip, the antibiotics, and the anti-fungal medications have been joined by the morphine contraption with a green button. The morphine in fact, is not even enough. The doctors have him on oxycodon every 4 hours too.

Every 10 minutes, this contraption allows Alex to have a dose of morphine, with one condition. The nurse has to push the glowing green button. When Alex is hurting, we have to call the front desk (as we are in isolation), have the front desk find his nurse, have the nurse "gown up", have the nurse record the dose, and THEN push the green button.

This maneuver can take upwards of 10 minutes, which seem like hours to my little guy. Those of you who know Alex personally, know he doesn't like to take medication, and is very stoic, with a high pain threshold. The fact that he is asking for morphine every 15 minutes or so, tells you how uncomfortable he is.

I feel so helpless. The green button is right there...I could push it to give him the relief from his pain, but I'm "not authorized" to push the button. I don't see a retina scanner, or fingerprint pad on this green button, yet to push it would be against hospital policy. It glows at me, reminding me that I cannot take the pain away from him. Mommy kisses aren't enough this time.

This Sucks!

Alex: My back hurts.
Me: I know Dude, it's probably the tube in your side.

Alex: It hurts!
Me: I'm sorry.  We just pushed the morphine button.  That should help.

Alex: It hurts when I breath!
Me: It's going to hurt to breath for a little while.

Alex: For a couple of days?
Me: Yes, it's going to hurt to breath for a couple of days.

Alex: This sucks!
Me: Yes it does Dude.  Yes it does.

(Posted By Eric)