Botox Update and Problems

We've been having some bladder and bowel issues lately.

Nick had his botox and deflux about 2 months ago. And we were really, really happy with it. For about 6 weeks. Then at Easter weekend I cathed Nick and got all brown urine. Completely brown.
My first thought was a bladder infection, so we started some d-mannose and pushed fluids. And it started clearing, but then he was leaking at home and school. He also started vomiting and had a couple of nights when he would get a really bad headache that would last a couple of minutes and go away.

So I knew that something was going on.

I wasn't really sure what it was. Was it bladder or bowel related?
Had the deflux failed (and that was the brown liquid) or was it a bladder infection. Was it constipation causing a bladder infection? Was it all of the above?

This past weekend Nick started getting constipated and his MACE was starting to leak (which only happens when he is backed up). And his bladder was leaking too, soaking through everything.  So we did what we usually do and gave him more Restoralax. When his MACE stoma started leaking really bad, and Nick was starting to not feel well I thought to clear  him out again with another flush.

So I started flushing small amounts at a time (so it was a mini flush, not a full one). But then nothing would come out. And as I sat in the bathroom with Nick I could see him getting sick. He started throwing up and complaining of a headache every time he put his head up. Then he got really tired and only wanted to sleep.
Of course my mind is flashing shunt! But I also know that the shunt drains in the belly. And if the belly is full (with poop or fluid that won't go through) then the shunt can't drain.

I kept pushing more fluid in and giving it some time (about 300 mL at about 50mL at a time) But after 3 hours I was reaching the end of my things-to-try-at-home and so I started packing my hospital bag and getting help so we could head to the hospital. My thought was that he had a blockage and my attempts at dislodging the blockage were not working. Of course it was the weekend, and all of my medical contacts were not there. But I did email his urology Nurse Practitioner.

Kyle and I sent Katheryn across the street to get my father to come and either drive us in, or stay with Katheryn. I collected the puke bucket and lots and lots of padding incase things started moving in the car.

But as soon as my father walked in the door, things in the bathroom started moving. And whatever blockage passed. Nick started feeling better, but was still really tired. He slept for about 3 hours and woke up feeling a lot better.

It was a pretty scary time for mommy. I didn't know if we should have gone to the hospital sooner, or even what hospital (I later talked to one of the pediatricians at my work and he wouldn't have been comfortable, especially with the shunt symptoms).

In the end we made the right decision, because everything did pass. But during the 3 hours when I could see Nick getting worse and worse I felt so helpless!

The shunt symptoms went away, so everything is draining from his shunt normally again. What I am hoping is that all of the original bladder symptoms will go away now that the bowel is better. But if they don't, I think we are going to have to say the botox is no longer working and start the Gelnique again. This is disappointing, because we really only got a good 6 weeks out of it (and I was hoping for 6 months).

MACE checkup

 We had our follow up with our doctor for Nick's MACE.
So it was a day back at Sick Kids
Nick was excited to go to the Hospital (a feeling I want to keep). I had in my mind what I wanted to do (deal with the granulation tissue). But the MACE itself is great and we are so happy with it!

Well, it didn't go quite like I had in mind. The doctors looked at it and said it was healing well, that it was cosmetic and will eventually improve. This was not what I wanted to heal. I really wanted to do the Silver Nitrate to get it all healed up now.

The doctor listened to me. Dr Lorenzo is great (and as he came very well recommended to me, I recommend him to anyone going to Sick Kids). But in the end he explained why we would`t be doing it.
To try to heal the granulation tissue (with the silver nitrate) there is the risk that we would heal too much, or in medical terms stenosis of the stoma. So the actual MACE stoma may close. I do not under any circumstances want the stoma to close and have to redo the MACE.

Actually looking at the belly button. It does look better than it has in a while. So we will keep doing what we`ve been doing. Using the Milk of Magnesia, tea tree oil and keeping it open and not covered (and keeping Nick`s hands away from scratching at it).

We are cleared right now, and will continue to follow up with the urology clinic at Bloorview.

Our heartfelt thanks and gratitude to Nick`s health care team for our great experience with the MACE. Dr Lorenzo and his NP Abby!

MACE update

We continue to battle with the granulation tissue. Every time I think I have it healing something else brings us right back to the beginning. I also have a feeling that Nick has been scratching at it. If you have no desire to see pictures of granulation tissue in the belly button up close... just skip this post

There has been trial and error in the process. I have been taking pictures every night to try to look over the progress. Which gives anyone who looks at my phone pictures a bit of a double take.

We used an antacid, Milk of Magnesia, in a liquid that I put a small layer on with a Q-tip. I also tried to soak the Milk of Magnesia in a gauze square. After about 3 or 4 days I found that it wasn't making any difference.So I thought I'd try my other plan. The Tea tree oil.
I mixed 1 1/2 tsp of water with 3 drops of tea tree oil, soak a gauze pad and taping the pad in place for a couple of hours. The first couple of times the skin around the belly button turned red, so I added vaseline around the belly button, so that only the granulation tissue would get 'treated'.

 After doing it for a couple of days I started to have some difficulty putting the catheter in. Because the tea tree oil helps wounds to heal, I was afraid that it was helping too much and starting to close the stoma.
I looked up a bit more online and found that the sites that discussed the tea tree oil had a catheter left inside the stoma. So After our nightly routine I cut a line into a gauze soaked with the tea tree oil and wrapped it around the catheter. Then the taped the whole thing down and left it in over night. Kind of like how the catheter was left as the MACE started healing originally.

That worked pretty well.
Except for the skin issues.

Regular hospital tape left red marks, Clear tagaderm (the IV covering clear tape) actually left blisters. Paper tape and the white dressing tape were the only ones that Nick's belly did not react to. Except that it leaves his belly all sticky, but in the long run using some Remove pads helps.

I've left the belly button open to air some days and covered it with a bandaid other days. I think that the bandaid helps to protect it when/if Nick scratches at it. It will look like it is healing well, and then the next time I turn around it is right back to where it was. Any irritation no matter how small makes the granulation tissue grow. The progress we see is measured in mm. It is very frustrating.
The only thing that keeps me from really freaking out is that it doesn't actually both Nick. It is all just cosmetic.


One night the catheter came out and sat against the tissue and irritated it. Back to square one
Another day the gauze that is on the inside of the bandaid came undone and was resting against the tissue and irritated it.
One little scratch and we are back to square one


I am continuing to treat it with the tea tree oil and the Milk of Magnesia, but in the end I think that we are not doing anything to prevent the use of the silver nitrate. Maybe keeping the granulation tissue from getting worse?
I only hope that the silver nitrate will actually be a solution.

Because in a month between these pictures, I'm not sure how much progress we actually made

 Of course for those that are interested I'll follow up with how the Silver Nitrate works out. I've been in contact with the urology NP and she wants us to continue. We see Urology for follow up the beginning of November (and hopefully the Silver Nitrate).

MACE update - granulation tissue

The MACE continues to be working well.

The underwear is working fantastically!

Nick isn't having any pain, the stoma (belly button hole) is healed. We can catheterize the belly button every night and some mornings. If I find the hole is getting tight I do it more often. The ACE stopper helps, but I think the ACE stopper has caused, or at least contributed to the granulation tissue we are now seeing.

For the first 6 weeks there was some discharge from the stoma, not a lot, just a bit for it to be a bit wet, not even to get his shirt wet. I wanted to see if it got better if I didn't catheterize it every day. It did get better, but the stoma has gotten tighter slightly.

I can still get the catheter in without difficulty, it is just snugger.

In all, the MACE is still great and we are all so happy!

But...

There is granulation tissue.

I didn't really understand what granulation tissue is.

This is what Nick's belly button looked like 3 weeks ago, about 6 weeks after the surgery

This is what it looks like about a week or so ago. It started off very small and I thought at first it was just a little irritation. But it didn't both him, so I tried cleaning it really well with soap and a baby wipe, (PS not the right thing to do). 

I used the ACE stopper, but it got worse. I tried just covering it, but it didn't make a difference and then Nick started getting irritated around the tape.

It looks like he has an  ulcer at his belly button. But it isn't. It doesn't hurt him. It did bleed a small amount when I started to touch it, but as long as I leave it alone it is fine.

I talked to the Nurse Practitioner who said that it was granulation tissue and gave me advice about what to do. She suggested a steroid cream and a saline flush. We had some corticoid cream left over from Katheryn's eczema, so I used that for a week.
And this is what is looks like now.

No all that much worse, but not better. So I decided to do some research (and advice from the nurse).

First I wasn't really sure what granulation tissue was. It is the body trying to heal itself, with new connective tissue. Like under a scab, but the scab isn't forming, just the new connective tissue. It also has blood vessels which are fragile and will bleed easily. It is not uncommon in the first 3 months.

This is a great article that talks about granulation tissue and experiences with a g-tube.
http://agirlandhertube.blogspot.ca/2012/12/granulation-tissue-101.html If you are looking for information about granulation tissues, g-tube and other 'tubes' websites and support sites have a lot of valuable and been there information. There is also a pdf file that is easy to understand available here

These pictures are nothing compared to granulation tissue that occurs when there is a tube left in the stoma. But just becuase it isn't horrible, doesn't mean that we shouldn't still make it go away.

We are exploring some additional options to try them out.
1. Reducing friction. No more ACE stopper
2. Keeping it clean and dry. If there is leaking, protect the skin.
3. Steroid cream, we did this twice a day for about 10 days without any really improvement. It is steroid and the cream specifically says not to use for more than 7 days. We used the regular cortisol cream and there was talk about a strong steroid cream.
4. Saline flushes. To keep it clean and prevent any dirt. The saline can also help to dry out the tissue

OK we have done all of the above, now we are looking at some other things.

5. Maalox. OK Sounds weird, but this is what the NP recommended today. Get some plain Maalox liquid and dab it on, about 3 or 4x a day. *Just found out that Maalox is no longer available, if you google it you will get a bunch of conspiracy theories about why... who knew!
I am waiting to hear if any liquid antacid is ok to use
6. Tea tree oil, mix it with 5mL water on soak into a gauze and leave the gauze in place 2x a day.

The last thing to try will be when we get to our follow-up meeting in November, is Silver Nitrate.
7. Silver Nitrate is a chemical that burns the granulation tissue (silver nitrate sticks look like matches). Granulation tissue doesn't have any nerve endings so it doesn't hurt (as long as you don't touch healthy tissue).

Looking through what to do with granulation tissue, it talked about using vaseline to help to protect the healthy skin. We had been doing this, but not consistently. I'm wondering if we could have prevented this with using the vaseline more regularly? Also keeping the stoma clean and dry and protecting the skin and not having anything rub against it.

I've spent the last week or so learning all about granulation tissue. The good thing about this is that it isn't an infection, it is a normal body response (that we don't want to happen... but still normal). It looks sore, but it isn't. And we have treatment options.
I'll keep everyone posted!

ACE stopper

I talked to the nurse about an ACE stopper to put in the belly button to help to prevent the hole from closing.

There are a couple of different sizes, the diameter is the diameter of the catheter you are using (10 Fr) and the length is in mm. It comes in 15mm, 30mm, 60mm.

They recommended the 30 or the 60. But when I went to the store they only had the 15mm (or I could go up or down diameter, which I didn't want to do). 

The 10/15 size doesn't sit in that well, I've used it a couple of times and it falls out. I'm hoping that when the 10/30 size comes in, we won't have that problem (and the 10/60 size she said might irritate him).

The hole is staying open so far doing this, and I'm going to use the ACE stopper for days that I can't do the morning catheter. Covering it with a folded gauze, that helps the stopper stay in place in the belly button, and a clear tagaderm (rectangle and see-through, they usually cover IV sites with it.)

They gave us a bunch at the hospital, and I think you can buy them at the store.

It lets us keep the stoma from closing, it stays in place.

This is what it looks like underneath the bandage. And then the bandage keeps the top against the skin. Nick has started to get some irritation from the dressing. So I'm keep an eye on that.

Nick can move around and it doesn't both him. It is made from silicone and move around.

**since I wrote this post we have been having issues with granulation tissue. I think the origin of the granulation tissue was cause by the ACE stopper rubbing against the skin, because it didn't sit flat against the skin. I'm not sure if this is an issue that all ACE stoppers in the belly button or just the way that Nick's belly is.

So we are no longer using an ACE stopper overnight, but I will use it to 'catheterize' the stoma in the morning because it is small and easy to use and clean instead of using the catheter.**

Healing

Nick continues to heal.
I got the all clear from clinic today that things are healed, no infection, everything is working and we got cleared to go swimming!

Before the surgery I really wanted to know what everything was going to be looking like. So I have been taking pictures of Nick's belly button to show how everything has been healing. If you aren't interested in seeing a whole bunch of belly button pictures, feel free to skip this post.

Day 7
It's starting to heal. I think the catheter was irritating it.
As it has been healing it has been having some discharge, pinkish. So I have used some gauze and taped it just below. So it can still get some air to help it heal, while protecting it (and his clothes)

Day 11
Some bruising is showing below the belly button.
The laproscopy incisions are healing well, he doesn't need any bandaids or anything on it.
Still have the tape/gauze on during the day, but it's healing well.
Still having some drainage, but less pinkish and more clear/yellow. Doesn't smell bad or anything

Day 14
I'm not sure what the redness is, I put some polysporin on. There is still some drainage and I'm not sure if it is just irritation. We have clinic tomorrow so we'll see what they say (and they said it was ok, it was less red by then as well).
Tomorrow the tube comes out!

Day 16
The tube it out, no more tape and dressings on his belly!
The redness and the drainage decreased once the foley came out.

Wow where did that flat belly and ribs come from!

This is a picture I took before the surgery to use as comparison. Nick has always had a bit of a swollen belly. I think that this shows how effective the MACE is, by actually clearing him out from the top down.

Day 19
I can't believe almost 3 weeks and it is pretty much healed.
And I think that I finally got all of the tape off! All of the tape and the bandaids have left his belly very irritated. So I am keeping everything off of him for now.

Can you tell he has a hole in his belly button?

When I go to put the catheter in, my finger goes right above the belly button, push gently and you can see the hold at the bottom of his belly button, but it is completely hidden during the day.
And Nick (for now) doesn't mind me showing off his belly to everyone

Everyone heals a little bit different, but this is how Nick has been healing. 

Flushing... the real deal

We had our follow up clinic yesterday, 2 weeks after the MACE.

The clinic started off kinda of weird, when the resident came in to see us and seemed to be surprised that we had been discharged from the hospital and had surgery. Um, yes that is why we are here...

I probably should have told him to turn around, read the chart and then come in and start again...

But once our actual doctor came in (with the resident) we got all checked out. Everything is healing well. There had been some discharge that I wasn't sure if it was an infection, but they said it was all healed nicely.

We will follow up again in 3 months.

Then it was time to take the foley catheter out, and show the nurse that we can do it ourselves.

I have the advantage as a nurse (and catheterizing 4x a day for the last 4 1/2 years) so I wasn't that worried about it.

I gave Nick my phone and he took pictures the whole time.

I have about 100 pictures from his perspective.
But I was able to take out the catheter, put another back in, flush it and we were done.
It didn't bother Nick at all

Tuesday night when we got home, it was time.

No more tubes were left in.

I got all of my supplies together.

The foley catheter, 60cc syringe for the initial flush, lubricant and the tube flush. 

The tape was recommended to use instead of blowing up the balloon in the catheter to keep it in place.

They said that they had one patient where for some reason the catheter twisted back into the small intestine, and when they blew up the balloon it caused pain.

The first night we taped it in. I didn't realize how much Nick moves around on the potty until we needed him to stay still. And the catheter came out. Nick wasn't very happy that his lap started flooding with fluid, but it didn't hurt him. And it was a lesson learned.

I've been using the foley balloon (why else use a foley and not a straight catheter?) and Nick hasn't been having any pain, and it hasn't fallen out.

So to add to my list above, a little 3cc syringe to blow up the balloon. After the catheter is in, blow up the balloon, and remove the syringe. When it is time to take the catheter out, attach the syringe, deflate the balloon and take the catheter out.

Another thing that they recommended was to push the glycerin in first. That will irritate the bowel to work the fluid in. So I mix 10mL of glycerin with 10 mL of normal saline, draw that up in the syringe and push that through. 

Nick really wants to do that job.

It was recommended to go slowly when increasing the volume of the flushes. So we just increased slowly over 2 weeks until we get to 350mL (+10mL glycerin) on Friday. I make the normal saline myself (using tap water) and then it goes in over 15 minutes.
Nick got some cramping at the beginning, but it seems to have settled. I slow it down if he gets cramping, but don't go too fast.
It has been so much more convenient for me, and has gotten Nick interested. It is also faster.
He sits on the potty for about 45 minutes, which is much better than the 60-75 minutes we were at before.

Nick has been a bit hesitant when I put the catheter in his belly button. The lubricant is cold and it feels funny. But it doesn't hurt and he will let me do it.
In the morning I put the catheter in (no flushing) and at night the catheter goes in and we flush. We put it in twice a day to prevent the hole from closing (like pierced ears).

Everything is going so well so far.

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.

We are outta here!

We had a good night.

A really good night. Nick is obviously feeling better, and you can tell from this picture, because he is on his side, not just lying in a single position on his back.

We had some smiles first thing in the morning after the doctors rounded.

The dressing came off and we got to see what the belly button looked like. The glue and  blood was all mixed up and looked black. There was no red blood, no signs of infection, no pain (other than the tape coming off)

Nick was having a bit of pain and had just some advil, his pain went from his chest to his belly. We did some moving in the bed, and some 'gas movement' and the pain went away. We haven't had any poop yet, but gas is a good start.

Then it was time to get on his feet!
We were going to go out to the playroom in his walker, but ran into a little problem

Nick finished his juice and then that IV was good to come out! He was nervous at first and kept taking his hand away, but stopped paying attention when I was reading him a book and he didn't even notice.
And then we were good for a playroom visit. I wasn't sure how much stamina Nick would have with the walker, considering he hadn't walked anywhere since Monday.
But he showed me and he was off and running... literally. I had to tell him to slow down.

In the video that we had watched had talked about the playroom, so did the shunt book that we read. So Nick was very excited to go and visit the playroom.

They had a craft table that Nick want to do.
So we did a tissue craft. Nick did not do the intended craft, but he had a lot of fun making his own craft!

The nurse practitioner came to give me all of our instructions while Nick stayed in the play room. She reviewed the package she gave me, flushes, things to be concerned about and follow up. She also went through a presentation she gives to the nurses about the MACE
She answered all of my questions about volume of flushes (building up, starting at 10-20mL per flush and up to 360mL), leaving the foley in place (2-3 weeks), activity (as tolerated, no lifting), baths (yes), swimming (not until follow-up in 2 weeks). I have a package with all the stuff together. Also we qualify for some extra funding for ostomy supplies.

After this, we got ready to head out. Packing all of our bags, I gave Nick a bed-bath (he couldn't figure out why I was washing him in bed!. Then he got dressed. All of this activity and working over a couple of hours and how was Nick's pain?

After some lunch it was time for mommy to get to work and do the first flush.
This is the end that is hanging from Nick's belly. There is a little end and a big end. The little end is to inflate/deflate the balloon at the end of the catheter that is sitting in the colon. It is taped to Nick's belly so it doesn't pull.

And then for the flush, it is just 20 mL. I did it myself, no problem.
Afterwards Nick played with the syringe. No cramping, no pain. Everything was awesome.

Then it was time for me to do some trips to the car (while Nick took 300 pictures of his hospital room with my camera phone that I left with him).
And we are outta here!

Waiting for Kyle to get off work and pick us up, so we got as far as the playroom. But we are officially discharged.

I have absolutely no concerns about Nick being ready to go home. I can't even imagine staying for a longer time. Nick is just blowing me away with his recovery!