Friday’s meeting… it was hard, most of you have realized that by now! On Saturday morning I wrote an update in Spanish and was planning on finishing that one and then writing it in English. I wasn’t counting on how hard it was going to be to re-live all that the doctors had said, so I could only do that one. I was a mess the rest of the day. Really, I allowed myself to mourn and grieve for two days. After that, Brian and I had a really good talk and Church was amazing (convicting/encouraging). So, I think I can now write this update without ‘losing’ it all over again.
Right now, the main goal is to figure out what Levi is allergic to. It is allergies, and not reflux that has caused the damage in his esophagus. We are working on getting an appointment for him. Once we figure out what it is he is alergic to and start treating him for it, he will need to be rechecked in the OR. Unfortunately. The doctor said that this may be a very difficult process because Levi’s allergies are only affecting his esophagus and nothing else. The only way to know if he’s getting better is to look inside him. He said that it’s very possible that we will need to remove the 6 most common food allergens from his diet, check him to see if he’s improved and then add one at a time, checking him again every time we add one of the foods. The reason why we would possibly need to do this is because it may not show in tests what he’s allergic to. If it weren’t for his trache, we would probably never even know he had food allergies. We will take one step at a time…
The harder news came before all this. The ENT(ear, nose and throat) described what the actual surgery was going to be like, the one to remove the damaged part of the trachea. First of all, he will not, and can not do the surgery until Levi’s allergies are 110% under control. So when he is scoped and there is no irritation whatsoever, we will wait 2 more months, and then try it. We are totally fine with this and understand it perfectly well.
Once he does do this big surgery, the chances of Levi going through it with no problems are 1 in 100. (Steph, this is only because of the particular surgery that Levi will require. Most trache kids don’t need this major one). The doctor told us to expect it to be like it was in the beginning, when the boys were first born, many ups and downs. Only it could last years. He said that it could be continuous visits to the OR, weeks of being sedated and many, many more scopes. He said it would be a very long and hard process.
When I think of this, two things come to mind. 1) The pain, sadness and sorrow I felt this last time he has checked. Him waking up from this last procedure was torturous for me. I don’t know why, but it’s getting harder and harder to see him go through this. I guess it’s because he was so alive, happy and joyful on his way to the hospital, and once we got there he was just amazing! He doesn’t understand why he wakes up feeling so miserable. This was only a small procedure to check him…
2) I re-lived the NICU days. Although there were only 113 days, it feels like I only existed for moments before those days, and since then time has gone by flying! But those days were eternal, death was at our door, waiting…
We were there, at the hospital, for less than 4 months… those months almost destroyed my life, my marriage…
Putting the two together, and then realizing that it could last years? I wept, I grieved, I re-lived the pain, the sorrow. I KNOW that I can not survive this process. I don’t want to, I don’t want to have to be strong enough. I do not want to endure. I want to give up. I don’t want to have to find strength… I want to give up… But I won’t.
Yesterday at Church, I felt like God was explaining to me that HE IS preparing us for the battle that lies ahead. And that HE WILL see us through it. I feel like we will be entering the valley of the shadow of death all over again. Only this time it will be longer, harder. But WE WILL continue walking foreward, maybe sometimes crawling. And though we fall 100 times, we will stand back up.
This last year has been a year of healing, for me personally, for our marriage…
The boys birth caught us completely of guard, and like I said before, it almost destroyed us. But this time we are being prepared, because we are going to need it in order to survive and shine all the way through it…
I thank God for all those that He has put in our lives to walk and pray us through this. We love you…
