...and not so good days

After a few days of stability and improvement for Max, things took a bit of a turn on Friday. Max's blood gas on Friday morning was really bad. The doctors had been talking about "sizing up" his ET tube (the one that goes up his nose and down his airway into his lungs), and decided that it was time to do so. So Max was extubated and they found that his other tube was quite plugged up with "junk." Max also made some attempts to breathe on his own while he was extubated, and they said that is very encouraging. Max was then intubated with the larger size ET tube (it looks a lot bigger to Kate and I then the last one), but things didn't really improve. We were hoping that with the larger tube and that fact that the last tube was pretty plugged up, that this was going to be just what Max needs to get off the jet vent and get things heading the right direction. Quite the contrary. He is currently at a pressure of 38 on the jet...which is about where he was 5-weeks ago. It just feels like we have taken a big step back. His oxygen needs have been pretty low still (roughly 30% on average) and they have weened his Inhaled Nitric Oxide down from 20 parts per million to 2, so that is all very encouraging. It is just hard to see his vent needs increase when he was so close to getting off the jet altogether. We saw a glimpse of how much happier and calmer he is on just the conventional vent without that constant pounding in his chest. We understand that Max has some gas trapping in his lungs and the jet is the best way to open those areas of his lungs that are "closed off," but we certainly hoped that it would have done its job by now. Max is still really puffy, particularly in his head, so they have ordered a neck ultrasound for tomorrow to see if there is something causing the retention of fluid in his head. They have already done a brain ultrasound and that actually looked really good, which meant that all the fluid is on the outside of his skull. He is on the highest dose of a diuretic called Aldactazide that is designed to help relieve him of excess fluids, but it does not seem to have done much for his head. We are praying that if the ultrasound reveals anything that it will be a very treatable issue. The unknowns are hard to deal with. At least with infections, they can give them antibiotics and then we wait. But these other mysteries get really hard to "wait and see" what the cause is or if something will help, etc. My brain works best when there is an identified problem and a mapped out course of treatment...the medical mysteries are hard for me to deal with because I feel so helpless. I just want to switch places with Max...to give him a break for a little while. We hate that we have gotten to the point where we say, "at least they won't remember any of this." We just want God's timing to be our timing right now. Would healing Max's lungs really mess up Your plans so much, God?

Wes continues to be very stable. His oxygen needs are relatively unchanged (right around 40%), so the doctors are not going to let him do any "off CPAP" trials. We got to give Wes his third bath today...and if that child's strength and will continue to grow at the same rate as his body...Kate and I are in trouble. That kid is going to break his way out of his crib in the near future. He weighs just over 4 pounds and Kate could hardly control him while I shampooed his hair.

I heard this song on the radio a few weeks ago called "Savior Please" by Josh Wilson, and I feel like the lyrics completely embody the prayer I have peen praying since the day Kate went into the hospital on March 10:

I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me