Guess what...

...Max is on CPAP!!!!!!!!!! In traditional Max fashion...HE decided tonight was the night. He worked the tube out enough that it was no longer helping him at all, so instead of reintubating, they gave him a shot on CPAP. That was about 7:00 PM and he is doing great as of about 5 minutes ago. His heart rate is good, oxygen needs are in the low 30% range (no real change from the ventilator), his respiratory rate looks good, he is not working too hard to breathe and he is comfortable enough to sleep. I have been waiting to write this post for a LONG time. There is no guarantee that the ventilator is gone for good, but we are so proud of Max and how far he has come, and so thankful to God for giving him the strength to do so. God has worked through literally hundreds of people, hundreds of vent changes, hundreds of respiratory treatments and for well over 100 days to get to this point. We are ready. We know Max can fly, but they did not want to kick him out of the nest just yet. So Max jumped. Just like with the jet vent, Max decided he was done with it. Thanks for the help ventilators, but Max is going to take it from here!! We would love to see that stupid vent wheeled out of the room, but it is not uncommon for kids who have been intubated for as long as Max has to tire out after a few days. But Max is a strong little boy. To endure everything he has to this point and still have such a great attitude amazes me. So we are hopeful that this is it. The doctors had talked about extubating him possibly this weekend and giving him a shot on CPAP, but nurse Ashley said that more often then not, this is how it happens. The kids just say enough is enough. Max's vent settings were down to 19 over 8, which are essentially CPAP settings anyway, but the doctors had decided to focus on getting rid of the Inhaled Nitric Oxide (INO) instead. The INO is the gas that gets mixed with the oxygen and helps to open up the blood vessels in the lungs and aid the transfer of oxygen to the bloodstream. INO is most often used when kids have pulmonary hypertension, or the half of the heart dedicated to the respiratory system is enlarged due to constricted blood vessels. Max has never had pulmonary hypertension that we know (he has certainly had enough heart echos to confirm this), but it has a pretty significant effect on his oxygen needs. He is down to 1 part per million, the lowest setting possible. We have been to 1 ppm before, but when the machine was turned off, his O2 needs really increased. The doctors decided they wanted to get rid of this machine once and for all, but Max (with God's help) had different plans. Please join with us in both a prayer of thanks to God for how far he has brought Max, but also a prayer for continued strength and endurance. It is not an easy thing for these kids to come off a ventilator, particularly after the amount of time Max has been intubated. He doesn't know anything different. His blood gas at 9:30 showed a pH of 7.32 and a CO2 of 61. Not terrible, but not as good as they had been looking over the last week or so. Pray that this was just a hiccup as he recovers from the trauma of being extubated.

Wes has been doing very well too. I feel like he gets left out of these posts a lot, but it is all for good reason. They did start weaning Wes again, which has been a lot of fun for his parents!! He just loves having the CPAP off, all he wants to do is sleep. He is currently off CPAP for 3-hours, twice a day. They are also using what they call a "low flow" setup, which differs from the last time he was weaned. A number of weeks ago when they tried to get him off CPAP, he was on just oxygen through a nasal cannula at 2.5 liters of flow. This time around, he has been on a flow of about 0.1-0.2 liters, and really doing well. His blood gases have been relatively unchanged from when he was on CPAP full time just a few days ago. His breathing seems to be much better, and we have encouraged the doctors not to push him too hard because we really want this to be the beginning of the end for the CPAP apparatus. Two kids on CPAP is just too much. Trust me. Join us in praying for continued strength for Wes as well. Pray that God will give him the strength he needs to get to a place where breathing is as effortless and involuntary for him as it is for you and I.

The boys did have their sodium chloride tests yesterday to test for Cystic Fibrosis. The goal was to collect three "rings" of sweat so that they could run the test on each boy twice. They were only able to get 2 rings from Max and zero rings from Wes. Max's test came back normal. I asked when they would try to repeat the test and the best answer I got was "right before they go home." Thanks...that really helps!! And when is that going to be exactly? Sorry...back to the post. They also had another eye exam on Tuesday, and both boys eyes were still immature. This is really what we want to hear at this point. ROP is an eye disease that effects a LOT of kids born as prematurely as Max and Wes, and in mild cases may require some laser treatments and in the worst cases can lead to blindness. We have been VERY blessed to not have either boy have any signs of ROP so far. At this point, they are pretty much "out of the woods" for having ROP as I understand it. They may still need corrective vision at a very early age, but indications at this point are that they will be able to see, and that is such a great feeling for Kate and I.