G-tube surgery on Monday
It has been over a month since our last post and it’s been a blur. Sarah and I both got different jobs and although Sarah’s hasn’t officially started, she’s doing the work for both jobs. My new job requires some travel, lots of early morning teleconferences, and even more late nights on the computer. They are great opportunities for both of us but it’s pretty rough right now.
Evan started puking again and we didn’t know why. We went back to pedialyte for a couple days and that helped so we thought that it was a milk allergy issue again. The Nutramigen formula is hypoallergenic but it’s not 100% free of milk protein, it’s just mostly broken down. We were thinking that with his milk allergy numbers so high maybe any bit of milk protein would cause a reaction. We requested some cans of Elecare which is a formula that is completely free of milk protein. We’re not sure if it helped or not, he seemed to do better but by that time he had developed quite a cough and we began to think that the issue was more related to a cold. The cold is gone, we’ve switched back to Nutramigen and he hasn’t puked in over a week so maybe it wasn’t allergies after all.
A couple posts ago I said that the g-tube surgery was scheduled for May 23 and now I’m saying it’s on Monday, so what happened? Well, the g-tube site, called a stoma, got pretty nasty. It has started to ‘prolapse,’ or fall out of place. Essentially, the hole is expanding, his stomach tissue is continuing to come out and he needs surgery to correct it. We use a powder called Stomahesive to keep his stomach contents from leaking out. When the powder gets wet it turns into a solid, so we put it in and around the g-tube, then gauze, then tape to hold it all in place. The redness and rash on his stomach is like a diaper rash, yeast. A couple applications of desitin/milk of magnesia mixture and it cleared right up. You can see from the picture that the site doesn’t look very good. Because the site leaks, the stomach acid started eating away at his surrounding skin. He started to develop a rather large (in our opinion) open sore south of his stoma (of course – as gravity would pull the leaking material down toward his belly button when he wasn’t laying down). The sore was pissy – it would often bleed, did not heal but kept getting worse for over 2 weeks, and Evan would sign “hurt” and cry and smack our hands whenever we had to change his dressing. Ironically, everything with his stoma started really going down hill April 11, the original scheduled day of this surgery. It’s like his tummy knew it had to hang in there until that date and then once it came it just gave up and gave in. Without anything getting better and the pain it was causing him, we knew we had to at least ask Cincinnati if they could move the surgery up. At this point, any time sooner was just another (hopefully) pain-free day for him. Cincinnati Children’s hospital was able to move up Evan’s surgery to May 13 – so he can start to get relief 10 days earlier than planned. The plan is to sew up the existing hole and tissues and put in a new g-tube a few inches to the left of the existing one. They estimate that he’ll be in the hospital for 5 days.
He was looking really nice one morning and I took this picture of him with Sarah. I asked him to smile, and he actually did. That never happens, lol.
Now to play catch up…
We were invited over to the Scherrer household to make Easter eggs. Evan tried his first peep too.
Morgan (Sarah’s niece) turned 6 and Evan had a great time at her birthday party.
Sarah was just goofing around with her camera and taking pics of Evan naturally. Here he is being cute and happy that she decided to ditched efforts at giving him OT to instead take pics and act goofy.
Evan still very much loves to play in the dog crate. He’ll take toys in there with him and just hang out. Here are a few pictures of him having a good time, even in his Easter Sunday best…
We went to Muskegon for Easter to spend some time with Sarah’s family. Grandma Jo came up from Florida for Easter and Morgan’s birthday and it was great to see her.
Evan managed to get half of a plastic egg to stick to his foot and he was really enjoying it until it fell off and he couldn’t get it to go back on and stay on. Watch the meltdown… I wish I had it on video. He tried and tried to get it to stay and then he would start to stand up and it would fall off. He threw himself back to the floor, tried again, and again, they he screamed and threw the egg across the floor. Wonder where he gets that?
Evan has been making progress in speech therapy. Miss Kathleen works with his vocalization and he’s making a lot more sounds now. He makes over a dozen letter sounds, and says a few things pretty clearly, momma, dadda, nana, poppa. His cognitive and recognition skills are really great. He’s a machine with flash cards and identification. His eating hit a speed bump with his last illness and the puking but we’re picking it back up. Here are some pictures from therapy and a video of him playing flash cards with Sarah.
LEARNING WITH EVAN from William Wood on Vimeo.
Several weeks ago we went to a mom to mom sale and I had to buy this fire truck thing that takes up a ton of room but Evan can play in. What kid doesn’t like stuff like this?
A bit brisk outside for an April afternoon, but who can resist playing in the sunshine?
And then there’s all of the miscellaneous pictures from the last several weeks…
