I am very happy to report that the boys have had a great weekend!! I will start with Max. His blood gases have continued to be stellar and they have been able to make numerous vent changes. He is currently at a pressure of 21 and a rate of 30 breaths per minute. This is phenomenal. On top of that, his oxygen needs were as low as 28% for a few hours on Saturday night (thanks nurse Ashley!!), and have remained in the low 30s through out the day today. It is also time for "conventional ventilation 101." I have been talking about the "pressure" on the vent, and that broadly meant the PIP pressure on the vent. There is also a PEEP pressure, and that is the amount of pressure the ventilator gives to keep the lungs open and prevent them from collapsing. This PEEP pressure has not really been in play until lately, so I have not talked about it much. From now on, I will be referring to Max's vent pressures as his PIP over his PEEP, i.e. his current settings are 21 over 9. His PIP is almost as low as they will go with a baby Max's size, indication are that 20 is about the lowest. Then they will start to try and drop his PEEP (the pressure of 9) if his gases look good. If Max gets much lower than 9, it is time to start thinking about trying him on CPAP!! I cannot even believe I am typing those words. It seems like it would never happen. The thought of seeing Max's face without tubes and tape for the first time is truly surreal. We do not want to get ahead of ourselves...but Max has absolutely been rocking the last few days. God has answered prayers that Kate, myself, and so many of you have been praying for more than 100-days now. It almost feels fake in a weird way. We have prayed for God to touch Max's lungs and continue to grow and develop them since day 1 on March 27. If I go back even 30-days, Max was on the jet vent and his pressures were climbing. Even if the CPAP trials don't happen, we have so much to be thankful for as far as Max's health goes. His puffiness is all but gone, his eyes are healthy so far, he continues to put on weight (currently tipping the scales at 8 pounds 2 ounces) and his digestive track is doing what it is supposed to do. Please pray that his lungs continue to grow, that his gases continue to look great, that Max's pressures can continue to come down, and that he can get a shot on CPAP. It is a hard thing to "try" him on CPAP, because if he fails, he needs to be reintubated, which is not an easy thing and there is always the risk of damaging the airway or vocal chords. Also, even a successful move to CPAP does not really put the trake discussions to bed because Max can not go home on CPAP...unless he has a trake.
Max got his first "real" bath yesterday!! He was pretty confused about it all, but did great. We captured as much as we could on film and posted a few pics below:
Sorry, I cannot get the photo to rotate, but I think you get the gist of his confusion. Here is a wide angle of the whole operation:
Man is this going to be easy without wires, tubes, monitors and alarms to contend with!! Right??
Wes has had a very good couple of days too. His oxygen needs have been in the high 20% to low 30% range, and they are once again talking about weaning him off CPAP!! Hopefully we take it a little slower this time, and we can be done with those blue and white tubes that Wes has grown to hate with all of his heart. We did find out that both boys are going to have a "sweat test" on Tuesday to determine whether they have Cystic Fibrosis or not. It is a very non-invasive test, but we are certainly praying that it will be negative for both boys (they added Max to the testing just for good measure). They have changed around some of the boys breathing treatments (they both get nebulizer treatments 4 times a day, and will continue to for maybe the rest of their life), and have started what they call CPT, or tapping, which is like an upside down rubber cup that they tap against their chest and back to loosen secretions in their lungs.
Wes weighs 7 pounds 7 ounces, down a couple of ounces from his peak weight. This is likely due to the aldactazide diuretic that he is on (to help with passing any fluid that he might have in his lungs), but we cannot be sure. The picture below is of Wes loving on his CPAP apparatus while wearing an adorable onesie from Kate's Aunt Shelly and Uncle Bob.
Remember to click on the images to make them bigger!!
