As you all know we were discharged from UNM back on October 15th. Since then it has been a blurr of feeding, meds, sleeping, staying up, not sleeping, running the kids to catechism, helping with homework, celebrating Jordyn's birthday, dealing with insurance, dealing with paperwork and a myriad of things related to just existing! Mason is doing just great! He is over 11 pounds now and his 02 levels remain around 84%. We are scheduled for his next surgery on December 11th. We will need to be in California by December 4th for his consult and catherization, prior to surgery.
I have a hard time believing he still needs another two surgeries. He looks just like any other baby, except for the scars and g-tube. On the 5th he received his Synagis shot. This helps to protect him against RSV, which is very prevalant in our area beginning in November. One of the nurses at Stanford told us the monthly shot cost is $1700.00. That is $1700.00 a shot! I haven't bothered to inquire if this is true, but I don't doubt it. We requested a summary of charges upon our discharge from Stanford and they were over $1 million. That was even before the medical transport to UNM. He truly is our million dollar baby.
Mason really doesn't require too many medications but it is a little challenging to make sure he has them at the right times. They are as follows:
8:00 am Captopril/Reglan
10:00 am Lasix/Prevacid
4:00 pm Captopril/Reglan
10:00 pm Lasix/Prevacid/Aspirin
12:00 pm Captopril/Reglan
There is only one pharmacy in town that can provide his meds, Silver Rexall. I didn't even know this pharmacy existed, but thank God it does. Ernie is in charge of dispensing/preparing all the mediations and I am in charge of dosing Mason. They all go through his g-tube, which is the best benefit of having the g-tube. I don't think I could have imagined saying that before! Regarding his feeding schedule, he is currently feeding for 2+ hours and has an approximate 45 minute break. We have a mini backpack with a small pump which we can carry anywhere, this allows us to take him along even while feeding. Of course, we limit his visits out to stay away from all those germs!
Our last visit to UNM on 10/24 went very well. Mason looked great and doesn't need to be seen until later this month. He has two separate appts, one with the GI doc and the other with the cardiologist. These visits to Albuquerque are a bit costly but we simply don't have a choice since he needs the specialty care.
Our local pediatrician, Dr. Etheridge, had scheduled home health visits for twice a week. I let him know after the first 2 weeks that this was not necessary since the nurse was just repeating everything I had been doing on a daily basis. That is weight and 02 levels. We are enrolled in the home monitoring program at Stanford and therefore I have been keeping track of this data to provide to them on their weekly call. As I mentioned before, it is critical that he gain an appropriate amount of weight before the next surgery. It looks good so far.
The kids just adore their baby brother. Jordyn keeps asking why a baby so cute and sweet as Mason had to have heart surgery. Of course, there isn't an answer but we have long ago stopped wondering why. Actually, I'm not so sure I even remember asking why but asked God to help us through instead. At least, that is what I recall now and it seems like a great plan for the future.
