another day

I got to the hospital this morning just after 10:00. When I got back to Chi's bedside, he had JUST upchucked his multivitamin which is a lovely green/black color to begin with. Poor guy, it was all over his nose/mouth area and down the side of his face onto his bedding. The nurse informed me that he had thrown up four times that morning and had a seizure that lasted about 4-1/2 minutes. Not exactly the best situation to walk in to. I washed up and helped with his 11:00 cares. He was awake for most of the morning! He was definitely looking right at me throughout rounds as if to say, "Mommy, help me! Help them figure out what is wrong with me! I don't feel good!"

I was able to be at the hospital this morning before the cardiology and NICU teams rounded. They happened to time it so that they both got to Malachi's bed at roughly the same time. Not counting Malachi or myself, there were 15 people standing around our little baby. They cut back on a few medications, started a maintenance dose of the phenobarbital to avoid the seizures, and brought his formula from 30 cal down to 24 cal. We are hoping that his throwing up this morning was a result of upping the formula directly from 22 cal up to 30 cal. So, we're just going to be safe and take baby steps. It seems as if from a cardiac standpoint we have three options:
*We can "bite the bullet" and fix the remaining heart defects (ASD/VSD) and then remove the Sano shunt and replace it with another conduit that has a valve. The only downside to doing this now is that we will have to revise it sooner than expected.
*We can prolong the heart fix and place a secondary shunt to help with pulmonary bloodflow (believed to be the underlying cause of his low sats).
*Keep waiting--which doesn't seem to be a viable option at this point because he seems to only be getting worse.

Every Wednesday afternoon the cardiology team as a whole gets together to discuss the very complex cases within the hospital. It appears as if our little man has made the agenda for discussion. I believe there will be about 15 cardiologists and 3 CV surgeons present at this meeting and they will put their heads together and hopefully be able to throw out some ideas that can make Chi make sense. Either Dr. Allen or the fellow will try to be at that meeting so that NICU is on the same page as cardiology. We probably won't know anything for sure until after that meeting.

Also, Dr. Allen let me know that she wanted to sit down and have a one-on-one with John and I regarding Malachi's case. I can't imagine that we will hear any good news. At this point, I'm really trying not to think about it. I just want her to be open and honest about Chi's condition, prognosis, and outlook. I'm hoping she can tell us what options we might have for further treatment and where we need to go from here. I'm sure I will be a tearful mess the moment we sit down for our chat, but I know and trust that God will give me the strength to handle whatever information we receive. Before I left this afternoon, he was really trying to suck on his fingers. This was the only shot I could get before he was moving them away:
I also did some rearranging of the pictures and things up next to Chi's bed. The long strip of white paper is the list of people, families, and churches praying for our little boy! How amazing! And this list is only of the people who went to the etherpad site and added their names to this list. There are so, so, so, so many more people out there who have shown compassion toward our family during Malachi's brief life thus far.

And finally, think this counts as a smile ;) ?