A good week

We have officially broken the 200-day mark!! By in large, it has been a good week. I will start things off with Wes. He continues to do well at home (3-weeks and 1-day now). We had our first pulmonology (the first of MANY) on Monday. The doctor was happy with how Wes was progressing and thought he "sounded" very good, meaning she listed to his breathing via a stethoscope. Perhaps the best part about the doctor visit was that we were able to get a new nebulizer medication that takes about half the time to administer as the one we had before. It is just a more concentrated dose, but it means that I get to sleep until 4:45 as opposed to 4:30!!! Those are some of the most special minutes of my day. Really, the best part about the appointment was that we were able to go and see Max as a family. That happens very rarely...in fact this is only the second time the 4 of us have been together since September 1 when Wes was first discharged.

We have still been having some issues with Wes having some retching episodes following his feedings. We have been trying to feed him over about an hour instead of 15 or so minutes, but that really cuts into the rest of the day, particularly when he gets fed every 3-hours. Obviously we will do whatever is best for him, but we do covet your prayers that he will start to handle his feedings better for his own comfort. We are going to touch base with the surgeon tomorrow and we will have a better idea of what we need to do then. One likely solution is a feeding pump that will feed him his regular amount over 3-hours, so it is essentially a drip feed.

Here is a picture of Wes in his newest hat, compliments of Nurse Emily who recently went to Disneyland. It even has "Wes" embroidered on the back!! (sorry I cannot figure out how to rotate the pictures that I upload, I even consider myself pretty savvy when it comes to these things)

And here is another of Wes checking out his Occupational Therapist Erin.

Max has had a good week overall. Some ups and downs, but he is doing well as of now. His oxygen needs have been hanging in the high 3o% to low 40% range. Because of that, the docs started to wean the INO (Nitric Oxide) and as of now, he is at 4 parts per million compared to 20 ppm at this time last week. As long as he continues to maintain, they are weaning him by 1 ppm every 12-hours, so maybe by Tuesday we will be rid of the INO machine...again...for the fourth time. This is a huge step, because if he can successfully get off the INO, and he continues to do well and maintain oxygen levels below 40%, then we can start talking about Max coming home. I think. So our prayers are that God will continue to heal Max's lungs so that his vent pressures can come down and his oxygen requirements decline. And that Max can come home and be with the rest of us. It is hard as parents to have Wes home and then to spend only 2-3 hours a day with Max. We want to spend all of our time with both of them.

Nurse Emily not only bought Mickey hats for the boys, but she is also and amateur Ansel Adams!! (she took the following picture)

And of course I have to get a picture with Max in his Mickey hat. I took this one, so the artistic touch is nonexistent.

I have also been forgetting to say a few thank-yous over the last few posts. A group of angels got together and hired a cleaning service to some in and clean our house from top to bottom the day before Wes came home 3 weeks ago. The place was spotless. I only know who the "angels" spokesperson was, so if the rest of you read the blog, THANK-YOU. This freed me up to spend the whole weekend with Wes instead of cleaning the house. Also, a big thank-you to all of the food angels. We thought we would finally have time to start making meals for ourselves like a "normal" family. NOPE!! So a big THANK-YOU to you as well. And a huge THANK-YOU to all of the people who continue to lift up our precious little boys in prayer. This has been a long road, much longer and WAY more mountainous that I could have ever imagined on March 27 when the boys were born. But we have not had to go it alone. We have felt the prayer support like a blanket around us in our darkest hours and longest days. We could never have made it this far without you.