Thursday, November 26, 2015

Happy Thanksgiving

It's been an interesting past week that's kept me on my toes, as usual!
Jax's incision site continued to get red and tender looking. I spent one night on the phone outside of a restaurant with our pediatrician on her emergency line texting photos and asking for advice when Jay took the boys up north. That definitely got me frazzled.
I watched Jax's incision with a lot of advice, but once he came home from school on Monday, I didn't like the way it was looking and was once again, on the phone with a doctor most of the night and this time emailing photos to the on call surgeon.
The end result is that we think Jax had an infected stitch trying to work its way out, and was treated with Neosporin the past few days. It seems to be scabbing over, but I still have my eye on it. I'll save you all from the dozens of ick-photos of that area from the past few days.
I had better hopes of a lesser-scar from the first look of this bad boy last week, but now I can see it will leave quite the bad-ass scar for him.
If all continues to go 'ok', we will see the surgeon for a tube-change and checkup in two weeks with the surgeon. I can't wait for this to be behind Jax and for him to not have this pain. He's still very guarded of the area, and hooking up his tube at night and changing out pads on his new tube is still tender for him, ouch.

Brady has stayed with the tradition of getting sick on a major holiday (last Christmas, Halloween and now Thanksgiving). Although this one seems to be a simple cold. I've been rubbing tons of immune-fighting oils on their feet and diffusing some as well in their room. I'm trying to contain it, but thankfully it only seems to be a runny nose and nothing too big.

We had a very low key Thanksgiving. Jay went hunting in the morning and we relaxed in the afternoon and had a dinner out with a movie to follow. We travel or have plans every single weekend in December, so we wanted to have a less stressful end of this month. I'm also trying to keep these immune systems up before December!

The boys have the next few days off and Jay is out of town now until Wednesday, so I'm going to try and find a mix of entertaining them and making sure I stay on my agenda to get everything done in time for the holidays. I've got my list!


Hooked up to his night-feeding and reading to his brother.

Decorating a few days early so we could get Jason's help before he left.

The boys were really into the tree and I'm pretty sure we have MANY more ornaments than we usually do. I had to cut them off!

Sunday, November 15, 2015

On Our Way

Jax turned the corner on Thursday and started to get up on his own, and didn't cry with depression when waking up. We kept his activity low and let him really just heal up even with feeling better. He left the house for 30 minutes later on Friday to the chiropractor and then to church for an hour on Sunday to Sunday school. Otherwise he's been home for 8 days just trying to get better.

He'll go back to school tomorrow, which he's really excited about. I'm hoping without gym class, he'll do well. He walks a little hunched over like a little old man since he's protective of the area, but I'm sure that will get better over the next week. We took the bandage off on Wednesday night and the site looks really healthy, although the incision is rather large, which explains the slower than expected healing. We can take off the steri-strips and give a bath this upcoming Thursday, but until then we do showers and spot clean the area. It's tender so he's very cautious when I come at him to clean it up. His skin is a bit aggravated around it too from the bandage, but that's all small things that should be better next week.

Brady said he's happy to have his bus-riding buddy back tomorrow :)

First night with the bandage off.


A smile!

It was slow but he got by himself on Thursday!

Friday he was able to get down to the ground by himself - pretty proud here on the way to the chiropractor.

Walking around like it's his job and checking out the piggies.

Treats from the Bonins that have yummy.

Brady brought home some homework for Jax.

Signs of feeling better on Saturday. I stripped the beds and found this crazy contraption. Jax of course didn't jump, but he sure had Brady do it!

Spooning with an iPad!

Wednesday, November 11, 2015

On The Mend

The surgery went well, and so did the post-op. We were able to go home that evening since we know how to use the tube to hydrate overnight. I've been giving Jax a combo of Tylenol and Ibuprofen for the fist 48 hrs and we were able to avoid having to use the liquid oxy since that would slow down his gut and cause some issues, so I'm thankful for that!

Jax is doing ok with recovery without any actual complications, but he certainly has a lot of trouble moving. He's very happy just staying put and wouldn't eat or move if not pushed. He broke my heart when waking up Tuesday morning and crying that he "wished he was Brady". Ugh. This morning he woke up crying knowing he wasn't getting better fast enough to go to school at all this week.

I've cut the Tylenol out and have him just on Ibuprofen and pushing now for him to eat his 3 meals and only use the tube at night, so he definitely is progressing... even if it does take a lot of motivation :)

I'm really hoping that he'll progress rapidly now after these past two days have been pretty slow and painful for him. Tonight we take his bandage off the wound where his original tube was and he'll finally get a shower. I'm anxious to see it, but more anxious for Jax's reaction. So far, he's very upset at the thought of looking at the area. He can't have a bath until Monday and the steri-strip removal, so I suspect he won't be really looking at it until then. I just wish we could fast forward a week to get him past this tough part. It's heart breaking, but I know this will pass.

Brady got special permission to be in pre-op.

Some last paper-rock-scissors competitions before Jax goes back.

Post-op snooze

12 hours and we were outta there.

Any time we mention "get up", we are met with THIS face.

Sunday, November 8, 2015

Ready or not

This past week has flown by. I'm really ready for this surgery tomorrow to over and done with since my anxiety about it all has really creeped up the last few days. I'm totally on edge, but hide it from Jax. I have everything set, including some clear juice to syringe into his belly with an early alarm for myself to make sure his blood sugar doesn't plummet with the fasting before surgery.

I will do my best to update ASAP, but we are planning on a smooth surgery, recovery and to be home quickly.





I love buying from other Moms of special medical needs children. I bought special tube-pads from this woman to surprise Jax with and asked for a rush since the surgery was scheduled so soon. She sent this note with the receipt. So kind...

Jay chilling' and eating his dinner last weekend during the Packer game.

Brady helping out with grilled cheese sandwiches.

A memory of Jax with the original tube on its final day.

The boys loving their dessert.

Who doesn't dance in the aisles when they find a cheese head hat?

Packer blanket and fun tube-covers to surprise Jax with.
Food Pack for hungry people in El Salvador at our church on Saturday.

Each bag feeds a family of SIX! The final total was 103, 487 bags of food, wow!

Sunday, November 1, 2015

Plans are set

The boys have been super hyped up for Halloween week, which is tons of excitement. They had a Halloween parade and party at their school, which I hosted in Jax's classroom (and I'll do the Christmas one in Brady's). Thankfully, the boys are still at an age where they LOVE having me at school :)
On Thursday, we attended Jax's surgery consult with the same surgeon Jax had almost exactly 7 years ago at 4 months old. The doc said the prolapse was the worst he's seen, but he understood why we waited so long in hopes to just be done with the tube. He has such a great bedside manner and was very 'soft' with telling us that the GI-notes did indicate many years of tube-need, so he took a lot of time with Jason and I going over our "options" of how to do the two procedures.

Ultimately, the plan will be for the doc to clean up the prolapse and close the current tube-site. He had mentioned that it's grown close to the ribcage with 7 years of growing, so a future surgery would've been necessary sooner or later. The new tube will most likely be a couple inches below the current one. The doc mentioned going telescopically through the belly button to place it.

I was a little shocked to hear it would take about 2 hours to do, but I guess when you're dealing with closing up a site and placing another one, it poses more time needed. I asked the doc if we were able to go home the same day since we're tubie-veterans and he said to plan to stay at least one night. There is a 10% chance they'd let us leave that night if Jax is responding perfectly to pain management and no lung/gut issues 12 hrs after - only because we are veterans and have all the equipment already at home. So, I'll pack a bag for Jax and I and tell him we are staying so he knows what to expect.

We did find out that he has a 90% chance of getting a button placed instead of a peg-tube, like he first did as a tiny baby, so that gave me tons of relief. The sad part of the meeting was Jax's reaction to the doctor when he was laying on the table during the evaluation. The doctor showed us all what was going to happen to his stomach and Jax covered his face with tears and yelled out "I don't want it!".
Ugh.
This is so hard. He doesn't want it, we don't want it and I wish SO badly I could've made this journey end for him, but I can't. Jax is such a tough little cookie, but he's still a human. And a young boy who just wants to be a kid. We just need to get through this, so we can get back to a place of acceptance that our 'crazy normal' will continue to be. I think I always had it in my mind that if he got rid of the tube, he'd suddenly just not be medically fragile anymore. But when I really think about it... he's nowhere near that status. Of course he needs this, and I'm thankful we have this to keep the kiddo going. But... still. We all just need that mourning period of what we thought life would be like at this point and forge through.

Surgery is scheduled for Nov 9, so it's only a week away. I've started to think of some things that could make this easier on Jax. We've always used plain white tube pads through the years, so I've ordered some fun character pads of Minions and Star Wars. I figure that will make him excited to put them on the 'new tube'. I'm also making him a GB Packers fleece blanket. I'll bring them with and surprise him when we're in pre-op with these things. I'm making Brady a blanket too, and will have it as a surprise to him waiting on his for him on surgery day.

Oddly, Brady has a ENT checkup on his ear tube the same morning as surgery. So, we decided to just bring Brady with us on surgery morning so he can see Jax off to surgery. Then Jay will bring him upstairs to his ENT checkup and then he'll be off to school for the rest of the day. Brady was very concerned if he could "be there" with Jax, so this kind of solves that. Brady can come back after school to do a book reading with Jax, have some "dinner" and go home with Daddy, while I stay with Jax. Hopefully everything goes well with the surgery and we can move on quickly from all this!

In other news, but still in the tummy trouble category, Brady was up vomiting from midnight to 8am the night before Halloween, but then totally fine by dinner time. He decided to trick-or-treat and had a great time! We were hoping it was because he had a really bad eating day of sugar and junk on Friday. Now, suddenly Sunday night he said his stomach hurts again and was really uncomfortable and didn't leave my side, so I'm wondering if we'll have another night of vomiting?? Poor buddy... I feel awful for him, but can't help to be nervous Jax will catch this if it's a bug... it will be such a different protocol if it's Jax :(

This little godson turned ONE and one of my goddaughters turned FIVE this week.

Lovin' up on Big B

Jax's first grade Halloween group

Jax walking in his parade

Big B was DOWN! 

Good times!

Dynamic Duo coming at ya!

Amazing!