Home Again

We've been home for a week and a half. Later on hospitalization #6, day 3, the surgeons, who were his primary doctors for this admission, transferred Lively to the general pediatrics team, and after some high pressure from me to get him discharged, we got to go home on day 4. Whew.

We're trying to adjust, again, to being home. Annie, finally, seems to believe we're all going to wake up in the same house in the morning, so she's going to bed a little better at night. Despite how confusing the last twelve months must have been for her, she's rolling with the punches remarkably well. Annie turns 3 this month and is growing like a weed, both physically and intellectually. This is a blurry photo I took with my phone, but it's so her.

(Yes, I know I mentioned her smarts above --  she chooses to put her shoes on the wrong feet on purpose!)

Lively, oh Lively . . . Lively continues to have trouble keeping down his medication, even when we bypass his stomach. His surgeon and Pete and I think he does have gastroesophageal reflux, despite his 24-hour pH probe that says he doesn't. His g-tube has to be left to drain all the time because if we clamp it, his stomach can't handle the volume of secretions it produces, and he vomits. If we sing songs while dancing on our hands and do entertaining flips and twirls for him while pleading, he might swallow a quarter teaspoon of pureed food a day (total, over the course of 3 meals). Half the time, it comes right back up. The surgeon thinks he's going to need another surgery: a Nissen fundoplication. I'm pretty sure this is going to happen. The complications, and Lively's tendency to have them no matter what, terrify me.

I continue to be frustrated with the feeling that none of Lively's doctors are talking with one another, and that they are treating his symptoms instead of working to find a unifying diagnosis. Lively's multi-system issues don't fit nicely under one umbrella. So he had a stroke, so he had infantile spasms. That doesn't explain why he suddenly became a kid who cannot protect his airway, after eating and breastfeeding like a champ for nine months. It doesn't explain the reflux (well some docs think he doesn't have reflux, but he does). It doesn't explain the vomiting, the refusal to eat or drink to the point that he will become dehydrated and require IV hydration and enteral nutrition. It doesn't explain why he has twice failed extubation, once to the point that a respiratory code was performed in front of us. 

But, there's good news, and here it is:

I've been saying that Lively can sit for several months, and technically, this was true. But 6 days ago, something clicked or he just got a little stronger, and now, HE SITS! He sits for 30 minutes at a time. He is able to readjust his body when he is off balance and stay sitting. He can reach for a toy without falling over. He can hold the toy and move it around. He can put 4 whole fingers in his mouth and smile for me, while staying sitting! Yes, there is a pillow behind him, and it's not going anywhere anytime soon. But there isn't a person behind him. 

Also of note in this picture -- when Lively came home after his G-J tube surgery, I thought, well, we'll just put him in cute little button down shirts, hanging slightly open, and the tube won't be that big of an issue. Nope. It's an issue. After researching how to manage wearing clothes with a feeding tube in his stomach, something that, I don't know, millions of children in the country require, I was able to find ONE product online that sounded like it might work for us: tummy tunnels. They're iron-on patches with holes in the middle for the tube. Fortunately, the shape selection includes "rocket" which goes well with his robot shirt.

Isn't he scrumptious?