7/25

We were discharged from BCH Sunday! We survived keeping Peyton flat for 48 hours:) He has been tolerating the surgery very well. He has been doing great at home. We are scheduled for his laryngeal cleft surgery for October 13. We have asked to be put on a cancellation list and hopefully we will get our surgery date moved up significantly.

7/18

Sorry I am a little delayed with my post. Peyton did very well in surgery. He had his scope where they found him to have a swollen grade 1 laryngeal cleft. We are having a modified barium swallow study redone at BCH Monday. From there we may or may not surgically repair the cleft.
The tethered cord surgery went well as well. Dr. Robinson said when she went to release the cord it did recoil a fair amount so she believes that there was some tethering. We met Peyton back in the PACU around 10:30am. He woke up irritable and fussy so we began giving him doses of morphine. They did not seem to help. He continued to get more and more agitated. We then tried valium. It had an adverse effect. He was flailing and screaming crying at the top of his lungs. We tried benadryl, ativan. tylenol...etc. Anesthesia came by to assess, neuro, pain, anesthesia again...nobody could figure out what was going on. We decided to stop the morphine and narcotics and replace with tylenol/motrin every three hours. As the morphine seemed to leave his system we got a much less irritable baby boy. The poor thing cried for ten hours straight. I felt awful. All the while he has to lay completely flat for 48 hours! How do you tell a 13 month old that they have to stay completely flat for two days?! Needless to say he has been doing remarkable. I am in total awe of this little guys strength, tenacity,and spirit. He faces adversity better than any other human I know. As I have said before...I have a lot to learn from this precious soul. xo

7/16

The Adventures of Peyton continue. We made it up to Boston on Saturday evening. We had our pre-op appointment Monday morning for Thursday's tethered cord surgery. Yesterday we met with Dr. Rahbar who is Associate Director of the Otolaryngology Department. We met with him because a few weeks back we took Peyton to UNC Chapel Hill for a modified barium swallow study and he failed. It showed that he was tracely aspirating on all consistencies. Dr. Rahbar took a camera through Peyton's nasal passage to look at his vocal chords. Good news! His vocal chords were working fine. Bad news...we don't know why he is aspirating. Dr. Rahbar was kind enough to make himself available to scope Peyton before Dr. Robinson does the tethered spine surgery. This will allow Dr. Rahbar to see if Peyton has a laryngeal cleft that could be causing the aspirations. Hopefully we get an answer. After Dr. Rahbar scopes Peyton then Dr. Robinson will begin on the tethered spine surgery. They will go in through Peyton's lower back and remove the fatty phylum from the tip of Peyton's spine. Then she will snip the ligament at the tip of the spine to release any pressure. We are doing this surgery as a precaution. They cannot tell us if Peyton will ever develop tethered spine or not. If he were and we didn't catch it early enough on then he can lose lower body functions like voiding (both urine and fecal matter), walking, running, etc. That terrifies me. Therefore the neurologist, Chris, and I all agree that it is in Peyton's best interest to go ahead with this surgery. They say the surgery should only last a few hours. From surgery he will be going to the ICU and then once stable they will move him to the neurology floor. I will keep you posted on his recovery.
I greatly appreciate your thoughts and prayers at this point. I have found that while living in the hospital for four months I became desensitized to the anesthesia, surgery, needles, and everything else that becomes your 'normal.' Then we got to go home for about two months. Home was a nice reminder of what most peoples 'normal' is and I really enjoyed it. I am not ready to go back but I keep reminding myself that this is what is best for Peyton. We are at the best children's hospital in the nation. The doctors and nurses know him inside and out. It  just isn't making it much easier this time around.
Surgery is scheduled for 7:30 am. We will arrive at the hospital around 6:00 am. Thank you all for your texts, calls, and messages. You have no idea how much they are helping to lift me up.
"I can handle all things through Christ who gives me strength."
Stay tuned...