Posted by B.Diane on 1/30/2008, 8:19 pm, in reply to "Post Cleft Palate Repair"
64.50.228.36
I am so sorry to hear what your boys and you and your husband have had to go through- their suffering and you and husband having to stand by for them. I hope that things get better soon and that some light comes back into your lives.
--Previous Message--
: 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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