Mackenzie’s 3 week post-op appointment (stomach)

Mackenzie had a post-op check-up with Dr. Bambini today (who did her duodenojejunostomy).  He came in the room and said that she looked so much better and was glad to see her smiling!  He even noticed that she changed her hair color and was pleased that she was eating well and not throwing up.  He said that he should have done the surgery sooner :)

At the doctor's office

At the doctor’s office

He looked at her stomach and said that he was going to take the tape off of all of her incisions.  Mackenzie was worried that he was going to do that and immediately started getting anxious.  She grabbed my hand and the doctor started pulling off the tape.  Mackenzie was squeezing my hand and trying not to cry!  The nurse that was in there starts pulling off the tape on the other side of Mackenzie’s stomach and says to Dr. Bambini, “here, this is how you do it.”, and starts pulling up Mackenzie’s skin really fast and pulling the tape up and off.  What she was doing looked more painful, but she knew what she was doing!  The nurse said, “see, that doesn’t hurt, does it Mackenzie?”.  Mackenzie laughed and said that it actually didn’t hurt the way the nurse was doing it!  So, Dr. Bambini stopped even trying to help and just sat back and watched the nurse do it!  It was pretty funny :)

Scars

Scars

Three scars are pretty visible and the fourth one blends in pretty well under her belly button!  It’s like they made it a curved line underneath her belly button to blend in…you can barely see it!

After that, he said that the incisions look good and that there was still some glue over some of the incisions, but that will eventually come off.  He said that since she had not been throwing up that everything is moving through like it should and she really doesn’t have any restrictions as far as he is concerned.  She can swim now.  He asked her if she had any questions and the only thing she is concerned about is when she can ride roller coasters and Carowinds :)  But that will have to wait a few months!

I asked him how many cases he sees of this and he said that he sees about 2-3 patients per year that could have a diagnosis of SMA Syndrome.  He said it’s very rare and even more rare that it requires surgery.  He mentioned how swollen her duodenum was and that she really did need the surgery since she just wasn’t getting better in the hospital.  He has never had a patient to have this after spinal fusion surgery.  So, Mackenzie is a first case for him and for Dr. Wattenbarger.  He said that he is following a girl right now that has it but she didn’t have anything that caused it – I guess she has had it for a while and they have recently diagnosed her.

We talked about the different ways that her surgery could have been done (I think there is 3 ways) and why he did it the way he did.  He talked about one way being to just move the intestines out of the pinched area but that is rarely successful.  He said that it usually causes more problems than before the surgery.  So I’m glad he didn’t do it that way.  He said that with her anatomy the way he did it was the best route for her.  He said the only thing that she would be at risk of later would be a hernia if her intestines looped through the loop that was created and get tangled up in themselves.  If she ever has to have surgery in the future then we would just have to let her doctors know about her anatomy and not to cause further problems in there.

He did mention that she was at higher risk for scar tissue where they did the surgery.  I asked how long that takes to show up if it’s going to be a problem and he said that it normally happens in the first two years but could happen any time.  He said that the symptoms would be the same as she had before…pain, stomach distension, vomiting, etc.  He said that if she starts to have those symptoms again to call their office directly and they could get started doing tests and stuff instead of taking her to the ER where they wouldn’t know about her past issues.  But, hopefully we won’t have to deal with this ever again.

So, the visit was good and it was good to see Dr. Bambini again.  He said that since everything was going great that he really didn’t have to see her again.  So, off we went!  Hopefully never to return again :)

Mackenzie’s 3 week post-op appointment (back)

Today was my last day on leave from being out with Mackenzie…and it was the best day I’ve had in a long time!  I dropped off Cayden at the babysitter’s house and Mackenzie and I went to her check-up with Dr. Wattenbarger.  They took an x-ray of her back and then Erin, the PA that we see sometimes, came in to see us.  She looked at Mackenzie’s back, clipped one of the stitches that was sticking out on the bottom, and said that everything looked good.  She pulled up her x-ray and said that the curve is now around 10 degrees…they usually don’t straighten it all the way because then she would be leaning to one side.  Their main goal is to straighten it as much as possible, but still keep the neck in line with the hips and keep the shoulders even.  I mentioned that one of her shoulder blades is still sticking out more than the other and Erin said that once Mackenzie starts to relax more and not be sore, the muscles will eventually go to where they are supposed to be.

After & before

After & before

Erin said that she would go get Dr. Wattenbarger because she knew he would want to see her.  He comes in the room and says that it was great to see Mackenzie sitting there smiling.  He said that he came in from out of town at the right time during our hospital stay because he didn’t see her when she was really sick.  He said that Dr. Phelps had told him that she wasn’t looking so good during the week that he was out of town!

I asked how many surgeries he has done since this is the first SMA Syndrome case he has seen.  He said he does about 100 surgeries a year and has been doing this for about 20 years.  So, about 2000 surgeries so far for him and Mackenzie is the lucky first one!  He said this is a once-in-a-career thing to see so I doubt he’ll ever see it again.  Erin did say that they would have to write up her case in case they need to reference it again!

The doctor said that she can swim now (as far as her back goes) but that we would need to be cleared by the surgical team before we do that (and that appointment is not until next week).  She even asked again about riding roller coasters, specifically “The Intimidator”.  He said that she would have to wait on that one, but that she could ride the swings or other more easy roller coasters whenever she wanted.  She was very excited to hear that she wouldn’t be missing out on Carowinds for the whole summer!

After that appointment we drove around downtown for a little bit and then went on a search to find a French bakery that I have been wanting to try for years…Amelie’s.  When we were almost there, we ended up behind a guy riding a bicycle.  He was apparently listening to music and really getting into it.  All of the time we were behind him, he was dancing along to the music and not even needing to use his hands to steer the bike.  It was very entertaining!  It was even more entertaining because of how much Mackenzie loved it!  I got my phone out and told her to record him.  At this point, we had already passed Amelie’s but were having too much fun following the dude on the bike.  Here is a clip of it:

After we finally turned around and headed back to find Amelie’s, Mackenzie made the comment, “This day is awesome”!

We made it to Amelie’s and walked in.  There were so many yummy-looking desserts that I didn’t know what to try.  I ordered the creme brulee and Mackenzie ordered some little pastries…one was a macaron and I don’t know the name of the other.  She didn’t really like either one but she and I both ate off of my creme brulee, which was delicious.

Macarons

Macarons

Our food

Our food

Mackenzie

Mackenzie

When we left Amelie’s, we walked over to a yarn shop that was in the same shopping center and then drove to get a haircut.  We went to the same salon that Mackenzie and I have been going to for years.  The lady was really careful of her back and tried not to pull her hair.  Mackenzie even took her pillow in to lean against during the hair wash and cut!

Haircut!

Haircut!

After we left the salon, we walked over to Bath & Body Works, looked around, and then walked back to the car.  Our car was parked right at the entrance of the salon.  Just to give you a visual…the parking spaces are up against a concrete sidewalk lined with some trees, and then are the entrances to the stores.  As we are walking closer to the car, Mackenzie noticed some woman leaning against the outside wall of the salon.  She had foil in her hair and the wrap around her shoulders like she was waiting for her hair color to set.  She was wearing sandals that had to have had a 5″ thick sole.  I guess she stepped outside for a cigarette break because in one hand she had a cigarette and in the other hand was a wine glass, full of wine.  We got in the car and I put my seatbelt on.  At this point, the lady threw down her cigarette and Mackenzie was just staring at her (because she can’t stand when people smoke, much less when they litter with their cigarette butts…lol).  As the lady tried to stomp out her cigarette, she started to stumble over her shoes.  She took 2, maybe 3, steps in our direction, and then started a face plant towards the concrete.  And I don’t mean a graceful fall…this was like her body remained straight and she just fell straight down like a board, face forward!  Thank God her face landed in the grassy 2 square feet area where a tree was planted.  Otherwise she would’ve surely been knocked completely out and I would’ve had to call 911.

You can imagine what was going on inside my car…I was yelling and Mackenzie was saying “oh my gosh!” over and over again!  I didn’t know whether to get out and help or not…I was just frozen in my seat with my mouth wide open!  I kept yelling at Mackenzie to get her seat belt on but she refused to.  It felt like a few minutes had passed, but just a few seconds later the lady started moving and trying to get up.  Her wine glass never left her hand and miraculously it didn’t shatter! I don’t know how on Earth she was able to get up, but when she did she stumbled a little, took a few steps back towards the outside wall of the salon and then SPLAT! This time her face ran smack into the glass windows of the salon!  She was still holding that wine glass, though!  She eventually found the door and got back inside.  Oh, it was hysterical.  I know they serve wine in there but I didn’t know they would give you that much!  I would’ve loved to have gone back in there and heard her explain why there was grass and dirt in her hair coloring foils.  At least she didn’t break their glass!

I finally got Mackenzie to put her seat belt on and we drove off, still laughing about it.  Mackenzie said, “this is the best day ever!”!

A few minutes later we got to Target.  As soon as we walk through the doors, a security guard runs past us, as fast as he can, all the way down to the other entrance of Target.  I had been trying to get to a restroom but we decided to follow the security guard to see what was going on.  Before we even got halfway there, the guard was walking back with two of the huge boxes of diapers!  So, I don’t know what was going on.  Maybe the shoplifter knew they were caught and dropped the diapers and got away.  We didn’t see anything in the parking lot so I guess we’ll never know.  After this, Mackenzie said, “this day just keeps getting better and better!”.

While at Target, we bought some hair dye because Mackenzie has always wanted to dye her hair black.  Today I finally gave in.  So, when we got home I gave it a try.  Here is the result…

Black hair

Black hair

I was worried about whether or not I would like it, but I really do!  So, it was a fun/odd day with a lot of laughs, which is exactly what we needed!