*The photos in this post have nothing to do with the words. Corrigan has learned the joy of ketchup (yay, calories!!!) and I wanted to share what a delicate, well-mannered eater he is becoming. “Psst, Corrigan…you have a little something…er…right there.”
**I may use the word “awesome” too much in this post. Fair warning.
*** Is it “I may use the word awesome…” or should I say, “I might use the word awesome…”
Corrigan had his scheduled repeat endoscopy on Monday, August 16th and everything went swimmingly. The GI Team scheduled him to be the first procedure of the day due to his disorder (he cannot fast, or go without meds, for extended periods but GI protocols require empty stomachs, obviously) and he got in on time (7:45am start time) and we were back at my Dad’s house by 10:30am.
The most excellent news? NO SIGN OF HIS ULCER!!!! If I had a proper scanner, I would scan the pretty pink photo of Cor’s duodenum but, thankfully for you, you will just have to imagine it. The ulcer that they found in April has vanished! The polyps were still there and sent off to be biopsied again. We do not anticipate any issues. How cool is that though? Poof! Ulcer gone!
(Do you know what else is awesome? KETCHUP!)
While they were in there poking around in his upper intestinal area, they popped out his ugly PEG tube and popped back in a gorgeous, tiny Mic-Key button. Again, awesome.
The day following the procedure we went back into Hopkins to get his normal labs done to check out his ammonia (32!, woot!) and his aminos (everything was spot. on. Not a single thing was changed after seeing all of the labs. On paper, and in reality, this kid looks perfect!)
The only real mark on an otherwise excellent experience was something that I discovered in recovery. When we went back to be with Cor as he came out of his fog I noticed that he seemed extra agitated. Even in his stupor he kept moving his legs and seemed more miserable than usual after a procedure. I pulled down his blanket to free his legs, in case the sheet was irritating him and found that his left foot was on a splint board and fully extended uncomfortably. He had an IV in his foot! Baffled, I quickly assessed his vein locations (feet, wrists etc) and yep, he had poke marks on those locations.
Why is this a big deal? Corrigan has a PORT! We put this child through a MediPort procedure, implanted in his chest at 9 months of age, and used dozens and dozens of time since implant, explicitly to avoid having his little body used like a pincushion!! Granted, they did the IV after they put him under, but still. When I frustratingly asked the reason he was accessed like that…there was some stuttering…and then a lame excuse about how the procedure was so short they just decided to do a peripheral stick or something. Bull$hi#. Pardon my French.
They didn’t read his chart. They made a mistake. The time that it took to poke him several times ( he has terrible veins) could have been in no way quicker than accessing the port specifically made for easy access. It was only because he was under anesthesia when they did this that I did not make a bigger stink but it was a valuable lesson (there always is one!) to be very specific with the doctors and not assume that they read everything. The next time he needs a procedure I will know that I need to speak up.
I have to say though…the pediatric folks at John’s Hopkins are amazing people. Really. The nurse that did Corrigan’s OR pre-op was excited to see us and told us that she knew us. (Shamefully, I did not remember her, we have seen hundreds of faces over the years. Don’t you hate when someone remembers you but you draw a blank? )
She explained that she was new to our hospital, and working in the ER a few years ago, when they got a call that they needed someone to get an IV in a very sick baby…STAT. She said that she remembered standing in line, literally, while many medical personnel tried, one after another, to find a usable vein. That little baby was Corrigan. She looked like she might cry when I told her that we got the medi-port and we no longer had to subject Cor to that ever again.
Unless, you know…someone doesn’t read his chart.
At the number one hospital, for the 20th straight year, you know.
See? I digressed into the bitterness again. What a whiner.
Hopkins allows parents to accompany their child into the operating room while anesthesia is administered. How cool is that? Not all hospitals, though it is widely recommended that it be standard protocol in normal circumstances, allow this to happen. We are so appreciative that they allow us to be there as he slips under.
This was the first time that we came is as an out-patient for a procedure so, in times past, his anesthesia was administered through his accessed port ( he has one! Did you know that? hehehe. Sorry) and he was simply awake one minute and gone to la-la land the next. On Monday, because he was not accessed, he was put under with a mask. It is kind of a mixed blessing, being there, because while you want YOUR voice to be the last one that your child hears before they are whisked away to a magical place in their head, you are also the last person that they see as they struggled to fight the mask on their face and the terror of it all. I still would choose to be there, over not, any day of the week.
When they placed him on the table he began to get upset. Daddy stood on one side and I on the other. The anesthesiologist was readying things and while she got it all going, Mark and I began to sing, “Jesus Loves Me” to Corrigan. The assistant placed the mask over his mouth and he truly began to fight…the anesthesiologist then leaned over Corrigan, gently stroked his hair and began to sing the song with us. Together we all sang softly as the gas took effect.
I have to tell you that leaving the room was so easy after experiencing such kindness. I don’t even know why. She knew the words, she was gentle, she sang aloud without embarrassment, she was tender…it was touching. It reminds me that even though I get frustrated, and yeah…sometimes there are mistakes even at the #1 hospital in the country, there are some amazing, wonderful people in that facility. People that, in a hospital that employs thousands, are put into our lives over and over when the odds suggest that we should be seeing lots of different nurses and doctors due to the volume of patients/employees in the building, yet the best ones keep walking up to us and shaking our hands and saying, ” I remember Corrigan, I am going to be his nurse today!”
It is, truly, AWESOME.