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Justin Lewis Glynn

October 16th, 2012 9:00am

to

October 27th, 2012 1:23 am

 

As any of you who have been following my blog knows, my son Justin has been quite sick. He's better now, though Jesus will be raising him instead of me.

 

Justin had a condition called heterotaxy, which means that certain organs in his body weren't in the normal place. Though it is possible to have heterotaxy and be completely fine, it is very common for some of the organs to also be formed improperly. In Justin's case, we discovered his heart was not formed properly while he was still in utero.

 

On the morning of the 26th, they were going to conduct the first surgery to assist his heart. However, there was a lot of fluid collecting in the lungs in the days preceding: more than was expected based on what they knew of his anatomy. The suspicion was that there was also something wrong with the lungs. So the plan was adjusted with them first taking a biopsy of the lungs, to see if anything was wrong with them.

 

Just before the precedure, we spoke to the surgen. Apparently he was next to certain that Justin had Lymphedema, and had been of this opinion even before Justin was born, though this was the first we had heard of it. Lymphedema is the collection of fluid in part of the body due to the lymphatic system being compromised, which is a fluid draining system. After the surgery this was confirmed. Essentially, Justin's lymphatic system in the lungs didn't really form properly. In fact, I got the impression that it didn't form at all.

 

Due to the lymphedema, it was impossible for Justin to be able to survive the surgery. Therefore, they stopped the surgery and sent him back upstairs, and gave us the news. It essentially meant that barring a miracle, Justin would not survive the week. So, we made a decision to let him go. We called our family and friends together, so that they could say their good-byes.

 

At a little after 12:30am on the 27th, Justin's breathing tube was removed. The picture below was taken at 12:36 am.

 

It was just Esther and I in the room at the time. It was the first time we really could see his whole face. We both sobbed for 5-10 minutes straight, though I wasn't really paying attention to time. He stayed with us for a while, but eventually passed away at 1:23, about 45 minutes on his own. He was so beautiful.



Anyway, I won't be posting anything new for a couple of months, though I do have something planned for Thursday. I'll be reposting some of my favorite posts from the past. I'll probably still be on the blogsphere since I find it relaxing, but I'm going to be taking it easy for a while and focus on my family. God bless you all.

Justin in Born!

Justin Lewis Glynn

Born 10/16/12

As I am sure that any who frequent my blog knows, we have been tracking a heart condition for my then in utereo son, Justin. His heart is a single ventricle, and has a single valve going from the atria to that ventricle. This means the his heart is very inefficent at delivering oxygen due to the mixing of blood in the heart. In the past couple of weeks we have continuously recieved bad news on the functioning of his heart, due to rythym problems, ineffectual pumping, and leaking of the atria-ventricle valve. He had amassed a good amount of fluid in his cavity due to these  problems.

However, we have been confident that God had promised us that Justin would live. We never felt that we recieved a promise that he would be 100% healthy, but we do believe that he promised life, and a relatively normal life. These are the promises that we have been holding on to.

Well, he was born two days ago, and since that time, we have only had good news. They put him on 100% O₂ when he was born as a precaution, and have been lowering slowly to see what he can handle. As of last night, they were at 30% O₂, and considering that room air is 21% O₂, he is almost at breathing for himself. As of last night, he was stable enough for me to finally hold:

Also, his heart condition is part of a greater syndrome called hetereotaxy, which can affect other organs. Though his stomach and liver are in reversed positions, they, as welll as the rest of his organs, seem to be working fine. The fluid that was in his body was able to be mostly drained without adverse effects. They haven't gotten a good look at his intestines yet, but has had no problems with... production.

There still is a lot to find out, but it is clear to me that God has kept His promises. We are mostly observing right now, as opposed to trying to resolve things. But God is good, and we remain confident that He will continue to show it.