Our week at Childrens

Our week at the Children's Hospital

(it is late so I hope all of this makes sense, and I don't know why everything is centered)

Last week Landon had surgery. Since about a month old Landon has had something called a "buried penis". Now essentially what this means is that the fat pad above his penis was too large and "sucks" in the penis so it appears inverted. The shaft of his penis was twisted and his testicles hadn't dropped yet. We fixed all of those things at the same time.

I did take before and after pictures, but I will NOT be posting them :-)

I was so impressed with Landon. He was a gem before surgery. He didn't complain about not having food or drink. Landon made several friends (nurses AND patients) while walking the halls. I think he just looked unbelievably adorable in his hospital PJ's

I got to take him into the operating room and that is when he totally freaked out!! It took three of us to hold him down and get the mask on his face. Yes I cried when they put him under.

His surgery lasted just over an hour and I was so impressed with his surgeon. He gave me so much information about what he did and how it went. While I was waiting for Landon to wake up I was walking the halls and ran into my friends daughter. It was so random and unexpected to run into my friend and I am grateful because we talked until I got the page that Landon was awake. I went back to my baby's room and they rolled him in 5 minutes later.

It was rather shocking to open his diaper and actually see the parts that are supposed to be there. I may have even exclaimed "It's a Boy!" to our nurse. (she didn't laugh) My favorite part is that he was wearing an adult diaper. He had glue on his penis and they needed it to be tented. This thing was HUGE and I am so glad that I got pictures of it.

While Landon was in surgery I got him a special stuffy and luckily HE LOVES IT!!!!

YEAH!

He is healing very well.

beforehand

at one of the play stations

right before we went into the operating room

just after waking up

playtime after wards, he still couldn't feel his legs at this point (he had an epidural)

THE DIAPER

at home with his new stuffy

The day Landon was getting his surgery Evan was at home with his Auntie and he had complained a little about his ear. That night he didn't sleep very well (neither did Landon for obvious reasons) so the next day I took him into the doctors office and sure enough he did have an ear infection.

The next day he didn't eat very much and was constantly coughing. It didn't matter what we did he just couldn't shake it. Finally I called the Children's hospital and I took him to the ER that night. They were wonderful and even our Respirologist came to check on him. He warned me that they would probably want to admit him if he wasn't significantly improved.

(Justin said that I wasn't allowed to write an angry blog so here is the short version of what happened next)

They admitted him and this is where all of our problems started.

1) The doctors on the unit wouldn't listen to me. I was fighting with the doctors about everything! They didn't even know what SMA is (didn't know it existed) and were treating him as a "typical" child, which he is not!

2) I kept fighting with them on other issues (like food) that I knew he needed and they weren't giving him because it was "protocol". They refused to call our doctors that understand SMA and get a second opinion from them. Finally 2 hours later they called them and guess who was right about the food??? ME!!!

3)Our Respirologist was an hour and a half late coming to see us.

4) Evan was good enough to go home (where he would heal faster and I have handled him at this stage so many times) by 10-12noon on Saturday. They kept him until 9PM because of the way THEY had treated him. It was because they didn't listen to me. Everything they did in the 13 extra hours we were there I could have easily done at home (and already knew to do). I would have just taken him home and walked out of the hospital (he really needed to go home) except that we are going to have this Respirologist for the next 15 years and I need him to know that we respect him. This was not the time to be burning bridges. He suggested we stay (to cover the doctors butts) but he KNOWS that I was livid about it.

When we have our next appointment with our Respirologist I will be having a very important conversation with him about how our experience was and will be insisting that Evan have standing orders at the hospital so that this does not happen again. It will NOT happen again.

I am all for Evan being in the hospital when he needs to be, but DO NOT keep us there if he doesn't.

(picture of Evan about 2AM in the ER ... he was WIRED!)

I guess it did come out sounding angry ... sorry Justin!

Evan got 3 hours of interrupted sleep in 24 hours and I got 0 sleep in 24 hours. It is times like these that I am grateful for a husband who let me sleep in on daylight savings and take a nap the same day to try and catch up!!! What a wonderful man!