Big Day for Max...and Wes?

Well, nothing ended up happening today. But we did find out that everything is going to be happening tomorrow. We found out at about 5:00 this evening that Max will be going down to the OR at 7:30 tomorrow morning, and he will be having really 3 and a half surgeries. The first will be what they call a "nissin." This is a procedure in which they wrap the opening at the top of the stomach, I think with part of the muscle around the esophagus (but I could be way off, I am recalling that info from about a 2-months ago) to prevent any reflux. Surgery #2 with be the G-tube in which they install a port directly into Max's stomach for feeding purposes. Surgery # 1/2 will be a circumcision...might as well just shock every system in the kids body while we are at it. And surgery #3 1/2 will be the trach. I think that is the order they go in, but I am not exactly sure. What I know is that when he gets wheeled into the surgical room where we cannot follow, the next time we see him he will have a lot of new hardware, but likely nothing on his face!! It has been 5-months and we have yet to see a completely unobstructed view of Max's face without tubes, hoses and tape. This is me looking for the bright side. All of our "primary" nurses has been great through this whole process: supporting us when we wanted to give Max a shot and the docs didn't, and also telling us when it was time to move ahead with the trach knowing how we felt about it. Their experience and the great relationships we have built with them over the last 5-months have been paramount in Kate and I finding some peace about this whole situation with Maxwell. So a huge THANK-YOU to Nurses Ashley, Becky, Cathy, Emily, Jessica, and Sara (I put your names in alphabetical order on purpose), and, although not our primary nurses, Amy, Anne and Monica (they have been there when we needed them to be)...we love you all. You have been through the trenches with us, supported us, fought for the boys when we couldn't be there and left an indelible mark on Max and Wes, Kate and myself. Now here we are, the night before the trach surgery. This has been in the making for 2-months. Trach surgeries usually don't get contemplated as much as Max's has. 9 out of 10 trach surgeries are because the patient has a bad airway and access to the lungs is constricted, and a lot of times are done almost on an emergency basis. Max is the 1 out of 10 where his airway is fine but his lungs are chronically sick. Kate and I have tormented about this for a long time. We did not want this for Max, but it is obvious to us that this is the right thing for him now.

He wanted us to know he is ready to rock and roll tomorrow:

And now for something completely different. Kate got a call from Dr. Dustin this morning and he said...and I quote, "I think Wes can go home on Friday." When Kate called me, I couldn't speak. It is every emotion you can possibly imagine all at the same time. The thought of him actually being here in our house seems like a cruel joke. I have been looking at their empty cribs every day for a long, long time. With everything going on with Max this week, we are actually going to push him coming home until Monday I think. That probably sounds ludicrous, but we have to do the following before he comes home:

1) Take the "Going Home" class

2) Get certified in CPR

3) Take the car seat class (you know, 90% of all car seats are installed incorrectly)

4) Learn how to thread Wes' feeding tube up his nose and into his stomach, testing to ensure proper positioning

5) Being trained on Wes' respiratory treatments, which are done 4-times a day (one of those times is at 2:00 in the morning...sorry Kate!!!)

6) getting set up with an Occupational Therapist who will work with Wes on bottle feedings

So, that is a lot of stuff to do before Friday with Max having major surgery tomorrow. Hope that all makes sense.

At the end of the day, the reality is that these kids will leave the hospital some time. A few times I didn't think that would ever happen. I am going to miss being a parking garage and hospital snob. I will not miss the cafeteria for one second. Unless they have chocolate covered raspberry ice cream. That is the only redeeming thing about the cafeteria. And Sour Watermelons. I guess we will have a number of weeks visiting Max yet to enjoy a lot of those things.

I am going off on a tangent. We cover your prayers for Max tomorrow. Or right now. Tomorrow is a really big day, a lot of invasive surgeries, a lot of room for error. Pray for the doctors, pray for the nurses, and pray for Kate and I. We will be at the hospital at 6:00 or so tomorrow morning following a poor night of sleep I am sure. But focus your prayers on a successful procedure, and a lighting quick recovery. We cannot move Max around too much or hold him for a few days, so we hope that those days will pass quickly. Thank-you to all of the faithful prayer warriors who have been with us through this journey. A journey that started on March 9. A journey that is taking a turn, but will not be ending in the near term. Thank-you for your support. Your prayers have sustained us.