Archive for the 'Updates' Category

How to be politically incorrect while be entirely adorable…

April 20, 2011 | Updates

Password for this video is “nathan”. Enjoy!

2 Weeks Post Surgery…

April 13, 2011 | Updates

Stitches came out on Monday. Baths were allowed today -which I’m sure thrilled Samuel because he LOVES baths. His incisions look great and are healing fine. We’ll be putting some different things on them to try and reduce the scar tissue as much as possible. His feeds are staying down better. But I’m following a pretty strict schedule of feeding him slowly all the time and making sure his feeds are done a few hours before he wakes up every morning. I really don’t want to keep using the anti-nausea medication so we’re trying to make things work with scheduling of the feedings instead.

We took Samuel to the movies on Saturday and he was SO HAPPY as I carried him to the car. Sunday, he was thrilled when we took him to church. And Monday, he was SO EXCITED to go to school. He’s done great there the last 3 days. They said they wore him out today using new communication switches with him, and they were right because he fell asleep as soon as we got home :).

I found this picture on my phone today that I forgot I had taken. It was right before they took him back for his surgery. So cute…

On a different note, I took a few pictures the other day for another photography class that I’m taking. I’ve been holding off on taking pictures of Samuel’s new bed until I get his room entirely done. However, we got the bed in December and it’s already April and I still have a few pictures to hang and curtains to sew. Ugh. I’ll probably get them done about the time I’m ready to redo his room again :). Oh, well. So, here are some pictures of him in his new bed. We absolutely love it!

Little stinker…headed out of the frame!

!

He knows I’m coming for him!

These are pictures I took the day we got his stitches out. As we passed the capitol building, I saw all these trees in bloom and had to stop. Part of that need comes from the fact that we are still buried in snow in our neck of the woods!

I know this picture is a bit cliche, but to me, it’s a bit of our backwards world as little brother pushes big brother in his stroller :).

Aren’t they adorable?

Well, that’s it for now. I’ll post again next week.

Quick update…

April 4, 2011 | Updates

Well, we came home 36 hours after we left. Samuel is ALWAYS happier at home. But, he was so cute with the nurses while we were in the hospital. He didn’t want them to touch him, but he would smile at them and watch them and give them cute little looks here and there. He’s thrown up a lot since we came home, so I put him on some anti-nausea medication today and it seems to have done the trick. He was also still constipated despite several suppositories and 2 enemas. But a little milk of magnesia and we solved that problem tonight. Yay!

I swear the kid is Superman. I gave him pain medication until this morning, but I’m not even sure he was much in need of it. Now he is just on regular doses of tylenol and ibuprophen and doing great on those. He’s happy (although he is holding still more than usual - unless I try to change him or anything and then he’s moving MORE than usual.) He’s cute as can be - smiling at me everytime I go in his room and laughing whenever I talk to him like he loves me to entertain him. I sure love that kid.

I have to say that I had some strong feelings that everything would go very well with this surgery. But I allowed myself to be worried despite those feelings. I am humbled by how well it all went. We couldn’t have been more blessed. Thank you for all your prayers, fasting and blessings. We were definitely watched over!

Here’s the only picture I took while we were there. Luckily we brought the portable DVD player since he had a specific position he wanted to lay in :).

The day after…

March 31, 2011 | Updates

Well, Samuel slept very well last night - about 8 hours. He woke up ticked off, though. But some medication calmed him down, so I’m thinking it was pain. We’re just rotating between high doses of ibuprophen and loratab to control his pain. He’s been pretty happy all morning - although he likes me to lay right next to him most of the time. We’re waiting to make sure his bowels are moving correctly since sedation can mess things up that way, I guess. We also have to sit him up and make sure he doesn’t have a spinal headache from spinal fluid drainage in the incision in his back. As long as he does ok with sitting up, we’ll head home. Even if he does have a headache, we’ll probably go home. I’ll just have to work out a way to get Tom down here to help me drive Samuel home.

I checked again with the surgeon this morning about exactly what was repaired during the surgery. He said it was just the muscle wall - no organs were affected. I asked him if it would heal ok given that Samuel is constantly using those abdominal muscles by pulling his legs up into a fetal position. (Legs go up and down, up and down all day.) He said it should heal fine and he didn’t forsee any problems. He said there were “A LOOOOOTTTT” of stitches in there. I got the feeling he didn’t even know how many because he’d lost count. Gives you a warm, fuzzy feeling, huh? (Read that line very sarcastically, please.)

So, we should be going home today. It makes me a little nervous, but Samuel is nervous being here, so it’s probably better to just take him home where he can be comfortable. We have all the equipment we need there and I can at least be with my other kids while I’m laying next to Samuel in bed watching kid movies all day :).

Stitches will come out in 10 days. I’ll post for sure by then, if not earlier.

The Surgery…

March 30, 2011 | Updates

Samuel is currently in surgery. We had to be at the hospital at 7 am, which was a bit of an inconvenience seeing as how the hospital is 2 hours from our home. But we made it. And after talking to the nurse, the doctor and the anesthesiologist, they took him back for surgery. I was nervous all the way down here and while we were waiting. I explained everything to Samuel, but I’m sure he’s going to be upset when he wakes up because it’s not like you can tell your kid they’re going to make a 6 inch incision in his abdomen and a 2 inch incision in his back without really freaking him out. So, I just kept it simple…you get to take a nap; they’ll take that big bothersome thing out of your tummy; when you wake up it will be a little sore; but it will get better quick. Maybe you know the drill. Hopefully, you don’t :).

I was good and fine until they separated us. And then I walked back down the hall crying a little. It’s so hard to put them in the hands of strangers and hope that they come back to you just fine. So as I walked away, I put him in Heavenly Father’s hands. That felt better.

I’ll update this post through the day as things occur. He should be out of surgery within 30-90 minutes. It’s only been 30 now.

UPDATE: Samuel came out of surgery about 90 minutes after he went in. They called me about 45 minutes in to let me know it was taking longer than they expected. The doctor was very kind and explained after the surgery that the pump had erroded through Samuel’s entire abdominal wall. He said he had only heard of this happening once - where the pump erroded the wall and slipped down into the pelvis. He has never personally seen it. He said Samuel’s pump was headed down into his pelvis and that it would have required removal anyway as it should not have been there. The doctor said he repaired some things and when I asked specifically, it sounded like it was the abdominal wall that needed repairing. It sounded as though everything should heal fine, however. I’m hoping so. I’ll admit that the news that it was floating in his abdominal cavity shocked me. I guess I should have expected it, but when the doctor examined him prior to surgery, he felt sure that it wasn’t very deep. I’m a bit upset that it was placed so deep to begin with as I’m sure this contributed to the errosion. I’m just glad it’s out, though, and hoping that it heals well. The doctor also indicated that he cut out the old scar on Samuel’s abdomen before stitching it up in hopes the new scar would heal better that way. I don’t know much about scars, so we’ll see.

Samuel woke up hopping mad. We gave him a lot of medication for pain and in the end decided it was entirely possible he was just upset by how the sedation medication was making him feel. It’s been about 3 hours since surgery ended and he’s more calm now. He’s watching one of his movies, so that certainly helps :).