Home of the Four Trans

In the past 2 days, Justin has remained stable aside from a few unexpected turns.  Though the events that occurred upset me tremendously, knowing that my child was put through pain that could have been prevented, I’d like to put it all behind us and move forward. In short, Justin had been put on Fetanayl for the sake of his breathing tube. Once it was decided that Justin was breathing on his own anyway, the attending physicians ordered for Justin’s extubation so that he could feed.  Twenty four hours go by, Justin shows little signs of waking up. The physicians begin to get concerned for the possibility of stroke or bleeding, so a CT scan was ordered. **Sigh** I watched as my little 2 foot, 11 lb, 5 month old roll under a whirring spiral machine for about 30 seconds. The entire time, I made sure he heard my voice from afar, to let him know that I was there, so he wouldn’t be scared. The preliminary results showed no signs of abnormalities.  The plan, then, was to wait for the sedative to clear of his body and allow him to wake on his own before extubating him.

The rest, I choose not to repeat. Living through it today was enough, and I’m exhausted. Let’s just say when I called in to check on my son this morning at 5:30am, they continued sedating him, and ended up putting an IV in on his scalp and right hand, in addition to the central line that is already in his groin. They gave me their justifications. But, it was not enough for me to accept what they had done to my son, to put him through all that stress, when it could have easily been prevented had they been more proactive. I gave them a piece of me. I made sure they heard it–loud and clear. My son is in Bed A in the CTICU, and they always begin with him during rounds. This morning, they didn’t. Once they reached us, I made sure they heard my voice, Justin’s voice, that this is my child, a person. That, I was greatly disappointed the way my son’s care was managed. But, that I was willing to put it all behind us. What’s been done is done. We just need to move forward to the next stage.

Throughout all this, doctors and nurses have come to the realization that Loi and I are very involved parents. Medical terminology is like a second language to us. We sit, we listen, we ask questions. We use their information combined with our own to make the decisions. We do not wait for them to make it for Justin. They consult with us with everything now,  knowing that we want to know everything, and want to give our input. Of course, we are limited in what we can do for Justin. But, being there, watching over him when they come in on their rounds, to poke him, to x-ray him, we’re protecting him. We know exactly what is going on, so we pick up inconsistency when there is. There are times when a poker comes even when the order had already been canceled. Or, an attending calls for medication that another had already taken him off of. We make sure we know every reason for their actions. We understand the reasons for the medications, and we question it when need be.

So, here we are, at the tipping point, I guess you could say. He’s made it this far, and we’re praying for every moment up to surgery time, scheduled for 10AM Thursday morning. We’ve had our consult and our share of questions. At the end of the consult, the fellow surgeon who was present for Justin’s first surgery asked if we had any other questions. I told him, “There’s only so  much we can know. What  you do in that room is what you do.” He understood and agreed that it’s difficult to put two and two together. At the end of it all, it’s all about letting go, and having a little faith.

There really is no other way to prepare than to pray–to give us strength, Justin strength. Justin’s bleeding debacle from the first surgery has made him quite a celebrity on the ward. No one has forgotten us because of it, and the fact that Loi was there, well, every single day at every hour. And, so, we pray for

-Justin’s stable condition through the night, and for

-the surgery to proceed in a timely and efficient manner with great success

-Justin’s quick and as pain-free recovery as possible

Mostly, I pray to the Lord, Mary Mother of God, St. Cabrini, St. Dominic, and all the Angels in heaven to watch over my little Justin, to shield him from all harm, to protect him, to give him life and happiness. I want to see him smile again.

Again, we ask that you all pray for Justin at this point in his journey. Let him have strength to endure all that he must endure.

God Bless.

This entry was posted on Wednesday, January 16th, 2008 at 10:07 pm and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.