So... here's the skinny.
Jonah is going in for g-tube surgery on Thursday, April 29th. Right now I feel good about it (well, as good as you can feel about your fragile child going into surgery), but ask me on the 28th. We'll see how I'm doing then.
A couple people have asked what the risks are so I'll give a little rundown (of what I know, at least... I'm certainly no authority on all things g-tube.)
So the positives first. Jonah will have a way to eat/stay hydrated no matter what. If he's in a mood or sick or has blisters in his mouth, we don't have to force him to eat orally. He can stay hydrated no matter what. After this past week, I realize just what a big deal that is. Hopefully this will save him from many ER trips and IV's in his future. I could visibly see, this past week, the damage not being nourished did to his skin. He's healing well now again. It will be a way to give all his meds (he's currently on four meds, two vitamin supplements, and Motrin as needed) and that nasty Polyvisol with iron (which I've currently stopped in efforts to make his bottles as positive and good-tasting as possible). We also need eating to be positive for him. I want to make it fun and enjoyable, not have to force it down his throat. We're never going to be able to encourage solids, juice cups, and happy bottles if it's always so forced. After this week of coming at him with bottle, every juice cup known to man, popsicles, and even syringes in attempts to keep him hydrated, he now screams and tries to climb his way out of the highchair every time I put him in it. I've basically undone all the "the highchair is a safe, fun place to be" work we've been doing over the last month or so. Frustrating. LASTLY (and very lastly), it will make our lives so much easier and less stressful. A fellow EB mom emailed me this week, and I could identify with everything she said about the feeding issues. They chose a g-tube for their son. She said, "on the days he is sore and hurt, I drop the Pediasure in the tube and instead of fighting with him for hours, we cuddle and watch a movie in peace... A huge emotional drain was lifted..." I want that. Jonah having a g-tube will mean that I am a better mother and wife. I can handle the blisters and dressing changes, but stressing every moment of every day about whether or not he's going to get enough, stay hydrated, gain weight - it's a lot. THAT is what about sends me over the edge. And we've been dealing with it since the day he was born. Knowing he is nourished and healthy and gaining weight is going to lift a cloud of stress and anxiety from my shoulders - from our lives.
Now the risks or potential complications. Jonah will have to have an IV placed. Thankfully, he'll be asleep at that point (I think) so at least they want have to wrestle him and mess up his skin even more. It will be more of a problem once he wakes up. Jonah will have to be intubated. This is probably the biggest risk to him. The tube going down his throat could potentially cause blistering in his trachea. Plus it will be hard to secure since he can't have adhesives on his skin. Our anesthesiologist (Dr. S, if you want to pray) has talked to the anesthesiologist in Cincinnati and has all the EB friendly materials on hand. All of the other risks are mostly post-op - risk of infection, risk of leakage, mostly just risk that it will irritate and blister his skin. If we can just make it through surgery, I think we can deal with everything else as it comes. We just don't want him to have complications so severe he has to go back in the O.R.
So, that's where we are. Lots of pros. Risky cons. Still probably the right thing to do. In the nature of Jonah, I'm sure he'll start eating like a MEGA champ between now and then to totally confuse us and make us doubt our decision. That's just how he rolls.
Since this is already so ridiculously long, I'll just go on. Last year I wrote this post the night Jonah was going to have to get a PICC line in his neck. Matt was sick and having to stay away from the hospital and our house in efforts to keep us from getting us sick. Jonah's arterial line was on the verge of coming out of his belly button and was not safe for feeding anyway. There was no way to nourish him. It was a choice between putting in the PICC line or just having faith he would start eating the next day. He hadn't yet started eating substantially on his own. That same day he had pulled his N-G tube from his stomach and had choked himself on milk (the tube was up in his throat) in front of my face. It had been a HORRIBLE day. I was on my way home, sobbing, terrified, feeling so anxious (understatement) about the procedure he was to have overnight. I was literally heaving with sobs and yelling to God on the way home - that He would save Jonah from the procedure or help it go flawlessly, that He would protect him, that he would give me peace with the decision I had just had to make.
Let me just break here to say that I have had very few experiences in my life where I feel like God is talking directly to me or that I've physically, undoubtedly felt His presence. I know that God works this way, but I think I'm pretty closed off to it - so wrapped up in myself and my circumstances - that I have a hard time letting Him in. This is all so you know that I am not writing this lightly...
So I'm going down the highway, screaming at God and sobbing. I've watched my child choke. Matt's not at the house. I feel completely alone and surrounded by demons. I was low. And as I'm about to get off our exit, mid-scream, I stop. I feel a complete and indescribable peace come over me. I didn't hear words, but I undeniably felt Him let me know that everything was going to be okay. It was in His hands. I didn't need to worry anymore. I was completely calm. I went home and went straight to bed without tossing and turning a bit. The doctor himself called me at 3:30 am to tell me the procedure hadn't worked. They hadn't been able to get the PICC line in. And I said, "Okay then," felt completely sure and peaceful and fell right back to sleep. And the next day he started eating. It was amazing, and I knew, without a doubt, that God was with me. He was in control. Whatever happened, it was going to be okay.
And that's what I'm praying for now - that the choice will be clear, that God will take it completely from me, that He'll protect Jonah, that He'll give us that indescribable peace with our decision. Logically, I know it's the right choice for Jonah's health and well-being.
Now we just need our hearts to be at peace with all of it.
The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Father, we are thankful. Please guard our hearts. Give us YOUR peace.