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Sunday, April 28, 2013

All's Well That Ends Well...Grayson's Surgery

My mom and I woke up at 3:45 on Thursday morning to make the drive to Memorial Hospital for Grayson's day surgery(adenoids, tear duct stint, tubes in ears). Drew had to do state testing with his students. Little Sweetie stayed with Wade-O and Gigi, Drew's parents.

Grayson did awesome on the ride there. He was the last "thing" I put in the car before we left. I just kept his pjs on. I didn't think he would wake up, but he did his babbling the whole way there. He was happy in the waiting room and the pre-op room, for the most part. I think he did awesome considering he hadn't had anything to eat since 7:30 the night before. He was also prodded and poked every five minutes by a different health care worker.

The nurse came in and gave him something that she said, "...would basically make him drunk." So I watched as Wee Pie got glassy eyed and moved in slow motion. The doctors came in and said hello. They checked Grayson, and gave us another run down of what was going to happen. Then, after a kiss on the head, they whisked him away in a wheel chair on the lap of the nurse.

I don't know why I wasn't more nervous. Maybe because I had undergone 6 grueling hours of waiting for Grayson's open heart surgery in a cardiac waiting room. One hour and three magazines later we met with the first doctor, the opthamologist, who said that the stints weren't easy, but they were done. He gave us eye drops and said he would see us Monday. Great. Good. One procedure down, two to go.

Thirty minutes later the ENT called us back. He said that everything went well. Grayson had large adenoids, lots of gunk in his ears that they got out, and very large tonsils. The tonsils have to wait, though, because Grayson isn't old enough for this invasive and bloody procedure. He did want Grayson to stay over night. I had already packed and prepared for that.

Then he asked if Grayson ever had petechiae (pronounced puh-TEE-kee-ee). You can read more about it here. Basically it is bleeding under the skin that is rash-like in appearance. Petechiae is caused by popping of blood vessels or low platelet counts. Low platelet counts are usually caused by the "L" word (or luekemia, but we aren't even going there!).

Grayson had his platelet count checked before when he was under a year old because he had petechiae. Drew and I researched it then and we know what the causes can be. Grayson's platelets came back in the clear after two wonderful days of waiting for the results of that test. That's why we aren't going there because those days were anything, but wonderful.

Anyway, I told the ENT all of this information. Dr. Rawlings said that some had popped up during and after the surgery. So Grayson was going to stay over night. I knew he would probably be staying overnight. I didn't mind Wee staying after three procedures and the fact he's had open heart surgery and the fact that he is a child with Down syndrome. I thought it would be best for everyone. So I waited to be called back to see my Wee.

Then when I got back to the recovery room, I didn't even recognize him. He looked so big in the nurses arms with his little wispy curls around his shoulders...wailing, sweating, blood spurting from his nose, and his petchiael rash all flared up. I wish I could have taken a picture of the nurses' faces! I think Grayson Goo really freaked them out and he was living up to his Grayson Goo namesake at that moment. I sat down and took that bloody, screaming boy in my arms. I promptly removed the heavy blanket that was causing my hot natured child such distress.

"He won't take this bottle," the brunette nurse said.

"That's because he doesn't drink from bottles." I replied calmly because I knew they just assumed he took a bottle because he is a child with Down syndrome. "His sippy cup is in my bag. He will drink any kind of juice, but no milk per the doctors."

She got it and filled it. Grayson gulped it down. Then he laid his little bloody, rashy head on my shoulder. The nurses were still freaked out. They told me he was going to the PICU.

"Instead of the regular pediatric floor? Why?" I asked looking around at them and the child life services coordinator.

"We will let the intensivist talk to you when you get there. You didn't meet him?," the blond nurse asked.

"No, I just got back here in recovery. Is this because of the petchiae, his bloody nose, or the fact he is a child with Down syndrome?"

"They will talk to you up there," brunette answered.

Those freaked out nurses took his bed the wrong way as they led him up to the PICU, all bloody and wailing again. I later found out that they don't do very well in day surgery recovery with kids. They just aren't used to them because most of the patients are adults. I'm sure Grayson Goo was a doozy!

The PICU experience was wonderful. I loved Grayson's two nurses that watched over him. The intensivist, Dr. Paden and the resident, Dr. Haupt explained that Grayson's petechiae was the reason he was here. Dr. Paden told me the fact the rash was above the neck lead him to believe it was just popped blood vessels due to crying. They just wanted to monitor him and make sure he recovered okay.

Here is where the story gets funny. We stayed in that PICU till around 5:00 that evening and then Grayson was discharged. Wee Pie got much better. He was playing, throwing balls, waving to the nurses as we took walks, and eating/drinking fine. He took several naps on me and his daddy. He needed tylenol and motrin, but overall we could have gone home after the recovery room.

I think Grayson's disability just freaked the recovery staff out. Disabilities and differences do that to some people. The recovery nurses just weren't ready for all the petechiae, blood, sweat, and tears Grayson was ready to give them. Grayson needed extra time to recover and the PICU staff accepted him with  understanding open arms. Perfect lesson in how kids with Down syndrome just need a little extra time to do things.


Poor baby ready to sleep on the ride home.
 Only picture I got of the whole day.
 Petechiae is hard to see in this picture.


I chuckle about it now and I though the whole thing was funny then, in the moment, at the hospital. Grayson is still doing well. He has been playing all weekend with his grandparents. He chomped on ravioli, mashed potatoes, hamburger, and spaghetti among other snacks. I can already tell he is hearing better and more aware. Everyone who's child has had the procedures told me I would see a difference right away. They were right.

Have a good week.

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