Surgery #9

Well, Jackson had surgery #9 on Thursday, September 15th. This was the eye muscle surgery. If you want to learn about the procedure, feel free to search on the web. Some images can be icky.

Did you know that Jackson's pyeloplasty (kidney surgery), UPJ obstruction (ureter surgery), and muscle biopsy (to test for the COQ10 deficiency) was on September 15 2009? Wow.

Anywho, the surgery went fine! Jason was there and Jack did great! Well, he about attacked me when coming out of anesthesia, but I would be angry too if my eyes were sore and I had tubes all over me. Jack had an IV in his hand that was locked and a running IV in his foot. We requested an IV in Jack's foot so he could have his hands free for signing and sleeping comfort. He tried to pull out the IV in his hand. It was removed fairly quick after that. Jack couldn't hold his head up for about an hour. He was also in pain. We ended up giving him morphine, in very small increments, through the IV, to ease the pain. It took a lot! Not really, but he was giving morphine 4 different times. It only totaled 1mg in the end.

The three of us stayed overnight while getting Jack adjusted to his feeds. Seriously, I planned on staying several days. I, as well as Jason, family, doctors and nurses, was expecting another post-operative ileus. I had a suitcase packed with clothes for 4 more days waiting in the van, 6 days of clothes total. The room was set up with suction. We were all ready to pump Jack's stomach. The IV was still running at a good rate while getting the formula started, very slow. Directly after the first official feed-a half ounce of pedialyte-we took Jack for a walk in a wagon. Jack leaned back on a pillow, surrounded by thick blankets to keep him from falling over. We took him around the floor; Jason pulled the wagon and I pushed the IV pole. Jack enjoyed it and quickly passed back out when we returned to the room. Actually, he slept most of the day and was very happy to be in a room. The first thing he wanted to do was go to sleep. He specifically asked for it.

The formula was started at 15cc/hr and was run for 2 hours. 15cc is the same as 15ml, which is 1/2 an ounce. 30cc is one ounce. He was bumped to 25cc/hr for 2 hours, then 35. 45. 55. 60. He made it! 60cc/hr! He tolerated his night feed. In the morning we were able to start his normal rate and dose. This is 265ml/hr until 160ml is reached. It takes around 40-ish minutes. Yes, I know I just went back and forth between cc and ml. It seems to happen a lot. Anywho, we waited 2 hours after the morning feed. Nothing! I know!!! No vomit! We decided to come home. The funny part? Everyone was in shock! The opthamologist fellow asked if we wanted to try his second feed just-in-case? No. The nurse didn't want to take the IV out until we were walking out the door. She was afraid if she took it out before we were ready to go he might start vomiting. We left the hospital at 10:30am.

Today is Tuesday. I have been putting prescription ointment in Jackson's eyes twice a day since Friday night. We are heading back to St. Louis Children's Hospital in the morning. I got worried Monday evening because I saw a dent/hole/gash in Jackson's right eyeball. It is over on the outside of Jackson's eye where the sutures were. It looks like someone took a teeny tiny spoon and scooped out a part of the eye. What is worrying me more? Today, Jackson's right eye is looking at his nose. Over the weekend the eye was straight. Really, it was aligned well before the surgery and looked great after. Not anymore. I don't know what happened but I fear that the sutures came out.

I am packing a bag and leaving it in the van. My amazing mom drove down this evening and is taking the drive with me to Children's. She will be coming back to care for Evelyn if I have to stay with Jackson. My mom is so amazing. She already came down and cared for Evelyn when Jack had surgery. We need to build her a guest house. We should probably build enough room for my dad as well. Any takers? ;)

The pictures? Before surgery. The 'M' is on Jackson's forehead so the doctor knows that measurements were taken. I say it means "mighty." the hot air balloons were in the park outside the hospital. This was the view from our window. It was 6:30 in the morning, or so. The close-up is how bad Jackson's eyes got.