205th Day in the NICU

The meeting yesterday went better than I had anticipated. It lasted and hour and a half. Dr M from Cardiology, Dr C & Dr R, 2 nurses and someone else whom I have no clue as to who she was were in attendence.

The main points of discussion is where to go from here, our goals for the next month and if Drayke codes what are the limits we are setting as far as bringing him back.

Dr R's main concern is if the pulmoary hypertension is "fixed" which means there is no reversing what has happened. Dr M & Dr C both feel that we are still in a position where Drayke can still beat this. Dr P last Friday also expressed this as well. We have to get him growing. I told them flat out "we have to get his bowels moving so we can get back up to full feeds. Period." I also stressed that since 11/1 there have been no changes to any of his settings on the vent & nitric. How can we see what he tolerates if we leave everything as is? The same goes for the sedation he is on.

The conclusion was we were going to very slowly start weaning his O2 & morphine. His feeds have also been upped to 4ml/hour with muscelax (sp?) to help get his upper GI moving. Today & yesterday he has been doing great, just like when Dr P & Dr C had him. We are back on the right track again. We mentioned how people have brought up ethics questions about how they feel we are doing so much to our little man. We were told that what is being done is definately not over the top as far as his care. There are more drastic things that could be done. We did not even ask as to what those were because we feel that Drayke will make it thru with what is being done at this time.

The other part of the meeting was what happens if Drayke codes? We all agreed on what dad & I felt were acceptable conditions. No epiniphrin, no shocking him, CPR until we get there. We told them how we were afraid to sign a DNR because he may just have a clogged ET tube if something happens and didnt want him die because of something easily taken care of. The doctors were all in agreement that everything would be done except those items listed above. So it is noted in his chart.

On a very down note: one of the moms we have made friends with at the RMH has had to make a hard decision. She gave birth to twins a couple of months ago. The boy has multiple PVL's (holes in his brain) and has been having seizures. Yesterday morning he had a series of them and is now considered to be brain dead. When I found out about this last night I went to my room & burst out crying. I prayed for the gentle release of his soul at the same time as being thankful for the continued life of my son.

Being in the NICU as long as we have, I have seen so many babies die. Parents being fearful of leaving their childs bedside. The phone ringing and seeing the 615 area code and all you can think is please god let the baby be ok. It does not get easier. Feeling extreme sadness for both parent and child and greatful to have dodged the dark spector again. Death is always so close. As I have said before, I would not wish this experience on to my worst enemy. I am praying for the day when I can again cry tears of joy.