Recovery - resting

Over a week since Nick's surgery and Nick is getting back to normal.

He's being silly and making people laugh.

And has been stretching his limits as well. Just like before his surgery, standing with one cane and standing on his own. Look what I can do!

He still needs to take more breaks and rest.

But he is getting more active, has started crawling to get to where he wants to go. But I find he likes being on his feet and use his canes or walker in the house.
I had told him not to crawl to make sure it wouldn't pull on his belly. But he is feeling better enough to stop listening to me (which I am taking as a good sign).

Nick's appetite remains a battle. This is what he wants to do during dinner time with his utensils. We get about 1 good meal into him a day. But he's drinking lots!

He has also been refusing his oatmeal, which has been a staple for years, and what I put his restoralax in. I've heard of this (and Nick did it before). Not liking  foods after surgery that he liked before (Nick stopped liking broccoli after his shunt surgery).

 

Looking at life returning to normal soon. I go back to work on the weekend, Katheryn returns from her own adventure and we are settling into our own routine.

What is the MACE

When I have been posting about Nick's surgery I have been trying to link back to what the MACE is.
I do have it described within the blog, but no one post that says "this is what Nick had done".
So this post is all about what the MACE is. This same post is copies into my other I want to learn about spina bifida blog.

MACE stands for Malone Antegrade Continence/Colonic Enema (or just plane Malone) and it is surgery.

Malone is the guy who perfected the procedure, Antegrade means moving forward, the C stands for Contience, which is the goal or Colonic which is the part of the body (colon) involved, Enema is introducing fluid to clear out the bowels of poop.

So how do you actually do this? You use the appendix. That part of the body that no one knows what the purpose is. It has a purpose when spina bifida is involved. It is tubular which is perfect for put a catheter through and into another organ like the colon (it can be used to go into the bladder as well in a surgery called the Mitronoff, but can only be used once).

So the MACE uses the appendix to move an enema solution forward through the colon to provide continence and prevent constipation, in a way that provides easy access for the individual and leads to independence.

So how is this done?
First some biology. The appendix is attached to the colon. The colon, also known as the large intestine is where poop has difficulty moving, moves slowly and constipation is when the colon fills with poop that doesn't move and clear out. And the end of the colon is the rectum and bum.

Our goal for continence with spina bifida is to clear poop out the colon and be able to time when it is filled again. This allows a clean colon during the day hours so there is no poop to leak out (incontinence)

A traditional enema puts in fluid through the bum to work it's way backwards through the colon, collect all the poop and then poops it out. An antegrade enema moves fluid forward through the colon and poops out the bum. It doesn't need the time or fluid amount to works it's way up through the colon, because it starts at the beginning.

The MACE surgery involves bringing the appendix to the belly button to create a stoma or a surgical opening/hole. Usually this hole is hidden in the belly button. It is tightened inside so that fluid can go in, but nothing drains out.

A catheter goes in through the stoma, through the appendix and into the colon. Fluid goes through the catheter and into the colon flushing it forward and out.
This pictures shows the stoma in the belly and not the belly button. It shows the ileon (small bowel), colon, appendix, stoma and catheter. (all labelled in ?Spanish)

A foley catheter (latex free of course) is used, which has a balloon on the end to keep it in place in the colon while the fluid is going in. At the end of the flush the balloon is deflated and the catheter comes out. Leaving the stoma hidden in the belly button.

So that is the end result. But first is the surgery. It takes about 2 hours under general anesthetic. They can do it laproscopically, which means there is no large incision, but a smaller incisions (with 2 stitches) that allow the doctor to work. It won't interfere with shunt tubing either.

With laproscopy, there is no large incisions, less pain and a quicker recovery. And less of a hospital stay. 

For the recovery Tylenol and Advil work at home. And a foley catheter is left in place to keep the stoma open and let it heal. (The stoma is like an ear piercing and will try to close if you don't keep in place or pass a catheter through it regularly).

There is some of patient information available on the internet.

• This is a patient education package for patients from Urology department in San Fransisco. It has pictures and describes the procedure and recovery. It is very similar to the package that we received when we left the hospital gave to us prior to discharge.
• I found another pdf document that talks about parent experiences and opinions with the MACE. It was very helpful for me to try to figure out what to expect and what complications there could be and also the opinion of those who are actually living with it.\

So that is the MACE. There are other options out there, some are surgical and some are non-surgical.
We worked our way up to surgery (diet, medication, suppositories, enemas) and did not make the decision lightly.

Recovery - flushing

Once we got home, it was time to actually get started to get everything to work! The whole reason we did this MACE to begin with. Constipation, independence.

I was worried about constipation. Nick didn't poop after his operation, and not before he left the hospital. 24 hours after we had been discharged and still nothing. That was 4 days.

I had flushed it twice, little 20mL flushes and nothing.

So I was messaging back and forth with his Nurse Practitioner. She said just give it some time, 20 mL is nothing, but we could start to increase it and add glycerin (an irritant to get the bowel moving).

So I stopped worrying and kept working on our daily flushes.

I had been told to go slow. So it was 20 mL for the first 2 days, then 40 mL for the next 2. They said to mix the glycerin (10mL) with 10 mL of normal saline and put that through first, and then the rest of the mix.The goal is to be at our optimum fluid volume (360 mL) by 2 weeks. Putting in the glycerin first means that the bowel is irritated and working before the rest of the fluid is put in.

I have also been going slow with pushing the fluid as well. I've been doing it all by hand through a large syringe, and just pushing slooooow. I did 60 mL yesterday, and it took about 10 minutes. With larger volumes we have a bag and tubing to hang as well.

They sent us home with supplies. A 60mL syringe with a catheter tip (which means it has a pointy plastic tip to fit into the catheter end). Normal saline to use for flush-fluid. Alcohol wipes, extra foley catheter and the bag and connector for larger flushes, also a small syringe (6mL) for removing the air from the foley ball.

Nick has been having some cramping with the flushes. Not so much when we are doing the flushing, but afterwards when it starts to work. I'm not sure what to do about that. I've tried slowing the flushing and warming it up to decrease the cramping. But it also means that it is working. So we've been breathing and distracting.
When we first started Nick also got nausea at the same time, but I think that is passing. We have a bucket by the toilet just in case.

Right now the foley is staying in, so all we are doing is flushing it. After clinic next week they will take out the foley, so that when we do the flushes we will put the catheter in and flush. We also have a fluid bag to fill for the larger volume (probably I'll use the bag after tonight).

Nick hasn't minded the foley hanging from his belly. It remains capped and hangs with some tape.

Recovery

If you are interested in how Nick is doing then check out yesterday's post. He is doing great.
But if you are looking for more information and pictures about the recovery, and the MACE, then continue reading this post.

One thing that I would recommend from anyone, is to ask for a lot of the Remove adhesive removal pads. I got 4 of them and went through them all in the first couple of days. Every time I would take sticky stuff off, more would come and my hand kept sticking to everything.

This is what Nick's belly looked like the first day home.

We had some fluid draining from around his belly button, so we've had a little dressing taped below his belly, just to keep his clothes dry. It hasn't been blood, just pinkish and mostly clear. (His shirt is wet from dropping juice)

 Nick's skin has been holding up well, but when I am changing the gauze pad, the tape comes with it. So I've added some skin protector, then a larger dressing that I can tape the gauze to.
This picture I took yesterday (Day 5 post-op). It is hard to see how the stoma (hole) is healing, because the glue that stopped the bleeding is staying in place like a scab.
He does have a bruise below the belly button too.

Today everything came off (by itself, kind of like a umbilical cord that dried and fell off) and I got to see what it actually looks like. (Day 6)

We have more of that pesky tape we need to take off. And the one band-aid covering one of the laproscopy hold came off too.

It looks sore, but Nick is comfortable. Doesn't seem to care. And his belly looks so flat now!
The face Nick is making has more to do with me taking pictures of his belly ... again... than any discomfort he has.

This is how Nick is recovering. For those who are reading because they are considering this. I know that I wanted to find as much information as I could about what to expect. What it would look like, how Nick would recover and how noticeable the stoma (hole) would be. (The Doctors and Nurse Practitioner all tell me it won't be noticeable once it is healed).
To me, today, it looks glaringly obvious that there is a hold in his belly button. But it is only day 6. I will continue to help show how the recovery is going.

How are we doing?

Everyone has been asking how we are doing.

I'm still amazed at how well Nick is doing, that sometimes I forget that Nick still needs time to rest and recover.

Nick starts the day with lots of energy.
But not appetite. He hates his breakfast now, only wants juice or chocolate milk.
He's happy, doesn't have any pain. Sometimes he pulls or stands the wrong way and he squints, but it gets better when we stop whatever it was that hurt to begin with. I've tried to get him to take Tylenol or Advil (we also got a prescription for Morphine) but he refuses it.
When we first got home I tried to force him to take the Tylenol/Advil, but the stress of doing that wasn't worth the result.

Life is getting back to normal and routine. They told us that we could give him a tub bath right away, so that I what we did the first morning back. We had a bath. Nick was very worried about having a bath and getting his tube dirty.
But once he got in, he didn't want to come out.

We still have lots of cuddles during the day. Nick gets tired quickly.
We've been watching lots of movies and playing games at home. Everything turtles, turtles, turtles.
Katheryn has been at daycare, and then is at to the cottage for a couple of days to given Nick his down-time.

 To get Nick up and moving we went out grocery shopping. Nick helped to push the cart around the store. He enjoyed himself and had a big rest when we got home.
No pain though.
And that was lots of stretching and pushing.

So Nick is doing fantastic. We are balancing between resting and working.
He's not too sure about moving around, but has been showing off when we get him up.

And he definitely has that self of humor back!
(Yes he is balancing toilet paper on his head while he is on the toilet).

Before his operation I had worried a lot about when we would see this smile. If we were doing the right thing. What kind of pain he would be in, what rough nights he would have, when we would be home. But really it was when would we get this smile back.

I wondered about how much time I should take off work, I didn't want to take too much or too little. I start back on shift next Friday, which is good. Nick is doing great, but to go to day care (or if he was at school) for the full day... he's not there yet.

So how are we doing? Smiling, resting and recovering.