Long Road and Baby Steps

Up in his wheelchair today.
Lungs work better when we move
around so this helps him.

He's making progress.

We turned off the nitric oxide yesterday and tonight we're hoping to make the jump to the home vent. 

He's still a ways from being stable enough to come home, but tolerating the home vent will give us a really good idea of where he is exactly.

So how did we get here? 

He did much better on the nitric and PICU vent, but then started having higher fevers and looking a lot more miserable.  Once his trach cultures grew out, we realized why. He didn't have just one bad boy in there, not two, but three!!  (Pseudomonas, Stenotrophomonas, and Klebsiella: try saying that fast!) And different antibiotics are needed for two, 'cause it would be too easy to have one kill everything, right? 

So he's on an oral (okay, g-tube) antibiotic, which is great 'cause we can do that at home. I mean, it's not like he doesn't already have dozens of doses of meds each day.  (I mean, seriously, he really does!) But the other is an IV only med, and he needs a 14 day course of it. 

Putting in a PICC line would mean we could do those at home, too, but this kid has some interesting vein anatomy on his left side which means we only have the right side of his body to work with. Too many PICC lines runs the risk of damaging the vein, and like running out of options for antibiotics, losing that option isn't good either. 

So the plan is to see how long it takes him to get to where he is stable enough to go home, and then decide if we want to do a PICC and go home, or just finish out here.  I think the (sorta arbitrary) marker I put was about five days out. If he's got five or more days of antibiotics left, we'll do the PICC and go home. But if it's less than five days, we'll probably just stay and finish here. Why five days? It just seemed like a good number.  He's currently about five days into them, so we've got about another ten days to go (I think). 

Our cute Piglet (before he got sick)

But the long and short of things is that we didn't treat it well enough before. We certainly tamped it down and he did get "better" but not "all better." And the five day gap we had between when we finished the first week and when we came back allowed it to resurface with a vengeance.

So when the doc tells you to take all your antibiotics even if you're feeling better, do it!! 

Sigh...  

Anyway, in our church, on the first Sunday of the month, we participate in a fast day. (The link can give more information.) We petition heaven for blessings and try to draw closer to God, wanting to understand His will in our lives. Tomorrow, we're fasting specifically for Aaron in our family. We are asking God to help him recover completely and be comforted in the process. It's going to take some time, so the comfort part is pretty important to us.  We would love to have anyone join us who would like to participate. You don't have to be members of our faith, or even Christian. We covet the prayers of any and all. 

I know they are real, and they are answered. I have felt their strength before as I have been given the ability to stand by Aaron's side and do things I didn't think I could bear to do. I am so grateful for the faith and good wishes of so many who combine to help him and, by extension, the rest of us. I don't have words to tell you how much they mean. 

“We’ll be friends forever, won’t we, Pooh?” asked Piglet. “Even longer,” Pooh answered.

- A. A. Milne