Update for Monday Evening

Your prayers are sustaining us and although we are weary, we are not defeated! John Asher is stable, breathing tube has been reinserted and he is back on the ventilator. This is to give his body, specifically his lungs a rest so that he isn't working so hard. We are not at a life or death situation right now, we are just back at square one. This morning, things were not looking so good and I could see the worry and concern on our nurse's face. She was frustrated and really wanted things to get better, not worse. However, they have been able to stabilize him now; he has leveled off and is not currently getting any worse.

 

I can't remember what all I've said here on the blog, but basically his heart has to learn how to function as a normal heart after functioning abnormally for over a year. The right ventricle just doesn't understand it can relax now and doesn't have to work so hard. The left ventricle needs to realize it is time to step it up. The doctors say that everything his body is doing is currently treatable. They have inserted a chest tube into each lung to drain the blood and the fluid, they are continuing to treat his complicated bowels (basically not pooping) and of course, the ventilator for his breathing.

 

John Asher's surgeon has also contacted some of his mentors that operated on TOF kids "back in the day" when they repaired the heart around 18 months instead of the typical 5 months today. These doctors have said they had many patients respond the way John Asher has and while they wish he would not, it is something he can overcome.

 

Tomorrow we have some options for treatment: let him have another day and see if he improves or get him some relief. Jeremiah decided to get him some relief. The relief will come via a heart cath tomorrow morning, where they will put a small pin size hole into his heart to relieve the pressure in his heart and the pressure in his lungs. (His right ventricle is producing too much pressure and needs to slack off and it hasn't.) This small hole has some drawbacks, such as allowing blood to flow freely between the two sides of the heart, but the benefits far outweigh the drawbacks. The belief is that the small hole will over time close up on its own. So please be in prayer for this process as well.

 

Our other three kids are having a difficult time with everything going on.  We don't give them a lot of information, but we tell them what they need to know for their age.  However, they can tell we are stressed, we are tired and so are they.  I brought them back home today.  Madi Beth said the Ronald McDonald house was fun, but she was ready for her toys and her bed.  Gracie went to ballet, Madilyn had her first soccer game (scored four goals) and we are going to "try" to have a normal school day tomorrow.  As a mother, dealing with their behavior and emotions as well as John Asher's complications, I am just completely worn down.  So if you talk to me, I will probably cry, and that doesn't mean John Asher is dying, it just means I am one. tired. momma! And if I don't call you back, it means I just can't cry to anyone else on the phone or the other three kids have me preoccupied, not that I don't love you. J

 

Just keep praying for our little guy. We are believing God for his complete healing for all of these complications and I was just thinking tonight that I can't wait to see him on those soccer fields!