Saturday, December 19, 2009

On Wed. Dec. 16th Dylan went to Rady Children's Hospital for his cleft palate surgery. We were told that he would have to spend one night in the hospital and would most likely go home the next day. The surgery took about 2hrs and the doctor told us that it turned out to be a little more complicated than she had anticipated, with his mouth being so little and his small lower jaw. She said that his tongue was pretty swollen from the retractor and that he would be very very sore. When we finally got to see him in the recovery room, my heart just broke for him, he looked so swollen and miserable. The first night he did o.k. he had a lot of bleeding and secretions that we had to keep suctioning out and they made sure to give him pain medication(morphine) every 4hrs and it seemed to work very well. The next morning I noticed that he sounded congested in his lungs and the nurse agreed and called in Respiratory Therapy. She gave him a treatment and suctioned out his nose and told me to keep picking him up and patting his back throughout the day to help loosen the secretions and encourage him to cough. So I did this. They also wanted me to start feeding him. This I thought would be a joke. His tongue literally was so swollen that it was filling his entire mouth and sticking out. Then they tell me I can't put the nipple straight into his mouth, I have to put it to the side and kind of dribble/squirt the milk in. Easier said than done. His mouth was hurting him so much that he would lay with his arms covering his face and anytime anyone came near he would bat his arms in front of his face, thus scratching himself all up. The doctor had come by midday and said that he would need to stay another night but that he was doing good and the swelling looked normal. Later that evening the nurse gave him the morphine because he was crying so much and within a half hour he was asleep, but I noticed that his breathing was shallow and that he would take a big gasping breath every few minutes. I called the nurse in and she told me to pick him up and pat his back, so I did and while I was holding him I felt that he wasn't breathing. I rubbed his back and head but no response, I laid him back and he was limp and his skin gray. I immediately started giving him oxygen and tried to stimulate him to breathe, and called the nurse in. She called out for help and within 30 seconds the Rapid Response Team was in the room and there were 12 people working on our baby. My heart was in my throat, I though - this must be it, Dylan is dying. I know this is horrible to think but when we were given the diagnosis after his birth the doctor told us that he may just forget to breathe and die suddenly. Mitch and I looked on helplessly. I was trying my best not to cry, it was horrible. I can feel a lump in my throat even as I write this. Anyways, they were breathing for him with a bag and mask and gave him a shot of Narcan. Narcan is a reversal drug, it counteracts the affects of anesthesia and/or narcotics. Within seconds he was crying and flinging his arms and legs around - he was pissed off. Thank GOD!!! Turns out the anesthesia from the surgery and the morphine, combined with the swelling was just too much on his little body and he just gave up. I thank God every minute that I was holding him at just the right time, I can't even think if we weren't in the room. It was God telling us he wasn't ready for him yet.

After they had him stabilized they moved him to the PICU where he could be monitored more closely. He spent 2 days in the ICU - they gave him steroids to reduce the swelling and it worked great. I honestly don't know why they didn't do that in the first place. Dylan ended up spending a total of 3 nights and 4 days in the hospital. He is doing good, happy to be home. Feeding is going to be difficult for a few more weeks but I know that this surgery was for the best.

Rady Children's Hospital, San Diego all lit up.
The pickle before surgery, still happy and smiling.

Right out of recovery room, poor baby.

This was his blocking position telling us "please don't touch my face."

Ready to go home. Still not smiling but looking a lot better.


  1. Kristy, what a nightmare... but what a happy ending. I am so sorry that you and DYLAN had to go through that. I cannot imagine what it was like thinking that he may be dying and knowing there was not much you could do about it. Helplessness. I know that it is such a guessing game anytime we send any of our little ones into surgery because no one can predict what their WHS bodies will do. Ughh. Glad his surgery is over, glad he is finally home and glad he gets to be in your arms for many many more years to come!

  2. Bless his little heart, what a trooper. You guys have had quite the week, but so glad it is over and Dylan is home. Hopefully his feeding continues to improve. Glad everyone is home and together for Christmas. We are thinking about you guys.

  3. Wow, this must have been the scariest thing to experience! I'm so happy to hear that he's doing better. Stay strong and I hope to see you all soon, love you <3


I love to read your comments. If you would like me to reply to your comment click on "subscribe by email" at the bottom of the page.