Tuesday, August 09, 2011

It Weighs Heavy....

Three posts in one day, a little nuts but we've had a lot going on. When I arrived at the hospital today the Infectious Disease Attending was waiting for me outside Aaron's room. He presented Aaron's case to the rest of the I.D. Attendings and asked for suggestions. They have decided to change another medication to something different and to call in General Surgery for a consult. He really feels at this point Aaron has a perforated bowel or an infectious abscess that will need to be surgically drained. Surgery for him is not an option until he starts to get better, however but he wanted the consult to see what they had to say. Their hope is that these new drugs will help him improve enough to where he could survive abdominal surgery. The ultrasound was done today and we are still waiting on the results although everyone seems to have a consensus that ultrasound will not pick up what we want it too, that the ct scan is really what he needs.

Today was also Aaron's care conference with the out going Neonatologist. It was not the kind of meeting I had envisioned and I certainly didn't leave with a clear understanding of what the next few days will hold so I'm not sure yet how I feel about it.

The doctor started by explaining in detail a condition called BPD and what pulmonary hypertension is. He then spelled out the survival rates of both and what they are together. Then he told us Aaron had BPD, the hypertension we already knew. We also talked about Aaron's current condition, the severity of it, and our options. What it boils down to is this: Aaron is once again on the fence. With the new drug changes he still has a chance. This doctor has given him a week to show signs of improvement. If he does not improve in a week he most likely will not improve and we will have to make the decision how long we will sustain him on life support.

Assuming Aaron does improve over the next week, his long term survival is mediocre at best. With both BPD and hypertension, surviving to 6 months is about 65% and then to age 2 is 20-50% of those who survived and then to age 3 another 50% of those who survived. With all the medication he is receiving, withholding his feeds and being calorie restricted, and the time he was at low O2 stats this last week for so long also factor in to what kind of quality of life he will have if he does make it long enough to come home. We are no strangers to statistical data and what that involves, nor are we strangers to overcoming those odds, yet the reality still weighs heavy on us.

After the meeting I was able to stand by Aaron's bedside for just a few minutes before needing to leave to pick up the boys. His body, and face especially, are significantly bigger than even yesterday. His skin has started to crack and bleed in several places which we were hoping to avoid. His edema no longer allows him to open his eyes. They have now maxed him out on blood transfusions as his CRT is 57 and they didn't want it over 55. His urine has picked up and is averaging over 2 but we really need it up somewhere between 6 and 10. We pray these medications work and work quickly.


Day Family said...

We are praying for a miracle. We love you guys and are thinking of you always.

Sant Family said...

When we had a few days to choose to turn off the machines or not our pediatrician told us something that has stuck with me. He said, "You are in a win-win situation here. You will either have the opportunity to raise a perfected child on earth, whose salvation is sure or you will have a perfected child, whose salvation is sure waiting for you. Your child is safe."

At the time, I don't think it felt like a win-win but now that I have seen the choices my oldest son is making, it sounds callous, but a perfected child in heaven sounds not so bad, so I think he was right, after all.

I will continue to pray for a miracle, because I know God can do it. I will also continue to pray for your family's peace and comfort and for clear minds and the ability to know the will of the Lord.

Cindy Lou said...

You still have my prayers.