Posted by Kristin on 1/14/2008, 12:57 pm
68.238.143.173
Hey everyone, I've had a few messages asking me how things went with the boy's cleft repairs on the 2nd of January. I've avoided posting before now only because I don't want to create worries for those of you have yet to go through it with your child.
The surgerys themselves went well. Zachary went first, then Daniel was taken back while we met Zach in recovery. The first look at them is shocking to say the least. I had mentally blocked out everything from my daughter's surgery 10 years ago and forgotten all about it. Thanks to those of you here on this board sharing your story--it helped me prepare for this moment.
The surgeon was happy with the results and said both were unremarkable surgeries and there was enough tissue there that there was no tension (yay!)
We were discharged within 24 hours with only Ibuprofen and Tylenol. This is when things started to go downhill. I was prepared that the boys would be uncomfortable, so the fussiness was expected. When they wouldn't sleep for 2 days, I called the surgeon. She prescribed Vistaryl. Alone Vistaryl had the opposite effect on them. They were wound for sound and bouncing off the walls-- crying and fussing, hitting their heads with their little fists, etc. I called the surgeon again. She prescribed Lortab to use in conjunction with the Vistaryl. Finally, the boys were able to get some rest. I thought this would be the means to an end. I thought if they could just sleep, they would heal.
Tuesday we went back to the surgeon's office for a check up. I was totally blindsided with the news that BOTH boys palates had opened-- of course exactly the same way. The surgeon could not explain it. She said she never would have expected this to happen in this situation because of the whole lack of tension thing, but there is a rare occurence when it can.
We went home that night very disappointed. (OK, I honestly was a mess) I couldn't believe they would have to go through this again! Based on how the rest of the area heals, the doc said she would look again this Tuesday and decide to take them right back in and repair or wait ANOTHER YEAR. UGh-- don't know which is worse.
The boys continued to do poorly last week. By Friday they were not keeping feeds down and were getting dehydrated. We took them to the ED and they were admitted to the Children's Hospital with Pneumonia. Apparently, this is another rare complication of anesthesia.
The surgeon came to see us twice in the hospital despite the fact that the boys were not admitted as her patients. She thinks it is possible that this infection was brewing prior to and post surgical, but all the meds masked it. When the body is fighting infection, healing is hindered. We came home last night.
I'm at the point now where I don't know whether to laugh or cry. It all seems so friggin unbelievable. How many more times do I have to hear the words, "Wow, I've not seen this happen before." or "I've never heard of this..." My boys are totally traumatized now too. Prior to the surgery they were so happy and laughing and curious about people. Now all they do is fuss and cry and cling desperately to me and Dad. It seriously breaks my heart.
Everyone has been wonderful to us. God is taking care of our family through the service of others. Right now, I'm just reminding myself to breathe.
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