Would You Believe It If I Told You That ...

We are now really back to square one? Well, Believe it or not, we are there. Be here with us in the truest sense of the word be, please.

Malachi had one of his choking episodes again today; out of the blue. Having not had to deal with it in so long and with him doing so well for so long he was off monitors that would have alerted the nurses that he needed suctioning and oxygen. Thankfully Sam was there and once he realized this was no ordinary spit-up he boomed, "NURSE!" and had 5 nurses in the room working on him in about 4 seconds. It was a pretty bad one and it took a toll. He is still recovering and it was hours ago.

All I can say is thank goodness he is not home yet, because he would not be alive as I am typing this had he been here. I am so grateful he is not home yet, so grateful.

He has his life saving tummy suctioning tube back and all of his monitors back on. After x-rays and tests there is still nothing conclusive. The only thing they know is that something seems to be backing up somewhere, but it's just not clear where that somewhere is. Malachi is not presenting with any typical symptoms of anything. All the different teams agree on one thing; nobody knows what is ailing our little guy.

We are ever grateful for Dr. Aiken who is not willing to jump to conclusions and perform unnecessary procedures or surgeries that may or may not be what is needed. He admitted earlier that although he's tempted to re-do the pull-through surgery just because it's something he can do rather than keep saying he is perplexed, he is not willing to put Malachi through that if he is not certain that it is the best thing for him. That's exactly why we are so comfortable with him. He genuinely wants what is best for our little boy, above pride and ego, above needing to fix it, or be right, or even be the one to figure it out; above it all he wants what is best and we are all for that.

The new plan is to start irrigations again and see if that can help relieve the back-up, wherever it is, and stimulate better and more consistent feeds. If it works, then along with the findings from a barium study today, it will be a good indication that the good section of colon that was pulled-through is not quite the best section and he will need to have more removed in order to create full colon function. It's something that happens occasionally and they are used to seeing it, but patients needing a re-do of the pull-through surgery present differently than Malachi, hence the perplexion (do I get to make up words and spelling on my own blog?). As it stands right now, no decisions will be made until Monday; long enough to see if Malachi responds to the irrigations like they hope.

So that's the plan, for this moment and I am trying really hard to stay in this moment. it's easy to go to the moments of why. Here I'll show you:

WHY

*do I live so far away, that I can't rush to my babies bedside and hold and snuggle him after he chokes so violently that he'd die without medical intervention?

*are there so many smart people that can't figure out how to fix my baby for good and get him home to me?

*do I have to deal with sickness that keeps me away?

*do there have to be germs anyway?

*did this happen to us?

*have we had so many nasty experiences with nurses?

*have we been ignored by doctors when trying to tell them what we notice about our baby?

*doesn't my mom live around the corner?

*does it have to snow, blizzard condition snow, when all I want to do is get to the hospital?

*do I have to pump instead of nurse my baby?

*does pumping take so long and make it seem impossible to do anything, including see my baby?

*do I have a bilateral yeast infection of the milk ducts (yeast mastitis) making it a really, really bad idea to soothe my emotions with Kopp's? good thing it's 40 minutes away. good thing it's not on the way to the hospital anymore, as I-94 is under construction so I get off well before the temptation, good thing.

*the roller coaster ride and not just typical Hirschprung's?

You see it's really easy, that only took me a few seconds, give me a half an hour and see what I can do!

Better yet, don't give me that half an hour. Join me in prayer or a hymn, or thoughtful meditation. Right now - wherever you are, just join with me in that best place of all; whatever it is for you. I would love to not feel so alone and it is in that best place where I feel best. It's not in physical presence or trying to busy myself to block it out. It's not in 'talking about it' (not that I mind, but it doesn't offer relief) or any of the mortal ways you might think. It's in simply knowing that God's will, will be done. I can submit or I can veer away, I know where I am comfortable, I know where to find relief, but it's lonely there sometimes. Not many people understand being okay with whatever God has in store. So join me there in the place of greater good. The place of submission where giving up control and needing to know feel absolutely blissful, the greatest peace.

I would really like it if you did.