This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

Palate Repair, Part I -- Originally Published December 22, 2007

Wednesday, July 14, 2010

Where to begin? It's a long story, so we have to tell it in chapters. Sorry, guys.

We got to the hospital bright and early to check Michael in. Everyone was pretty nice -- the kids are always a hit with the nurses. Michael was feeling alright. He was more concerned about his early morning wake up call then he was about missing breakfast. In fact, he fell asleep in Daddy's arms during the interview with the anesthesiologist. We laid him on the bed and they wheeled him away.

As Lynn mentioned, the ear tube part took a lot longer than we expected. It usually is 10 minutes or so, but it was over an hour before Dr. G____ came out to talk to us. Michael has a tiny ear canal, and it was a bit of a challenge. The surprising part was the actual mouth surgery, which was a lot shorter then anticipated, and Michael ended up coming out of surgery on schedule, despite the tubes. Truly, if one of the parts was going to be more challenging, Michael picked the right part. Dr. G____ advised us that we may face some chronic issues with one of Michael ears, but they may also have been prevented/solved by the tubes, so we will have to see. So far the ears look just fine -- no drainage or anything.

The challenges on the medications began in recovery. Michael had a pretty terrific post-op team that really catered to him. The hospital was very full, so we were waiting downstairs for a long time for a bed in the ward. They knew it was going to happen, so they were getting ready to let him eat downstairs because they thought he would feel better if he had some food. They were going through his list of at home medicines to make sure they had some sort of tummy medicine going into him before he ate. In short, they were really trying to get things rolling for Michael. The problem was that the surgeon had written a script for Reglan -- which is the nasty no-no drug that makes Michael cry. We corrected that immediately and told them what drug he was supposed to be taking. They were not familiar with it but they sure tried -- calling the GI doc and the pharmacy and anyone they could to get the right dosage. (The chart didn't have it, and we didn't remember it.) Long story short, it was difficult to get the dosage and Michael's tummy had to wait for almost two hours before they got the medicine to him. (It took a while to get the dosage, then it took the pharmacy forever to get it to Michael.)

In the meantime, they gave Michael all the morphine he was allowed to have, but there was a problem with his Tylenol with codeine and the pharmacy hadn't delivered that yet. So, they called to get another morphine dose because they didn't want Michael to hurt more then necessary. They were also helping mom and dad hold Michael and roll him around and clean him up so that he didn't cry. They even went ahead and suctioned Michael trach to make him more comfortable. (And this is when Mom had her first small freakout ... they suctioned a catheter of blood-colored secretions. We were expecting it, but it was SO HARD to see that come from his trach.)

When we got upstairs to the ward, things got a lot harder. Despite all the work of the post-op nurses, the Tylenol issue didn't get fixed. Apparently the wrong script was written, and the pharmacy wouldn't deliver it. It was 6 hours from the morphine dose before any more painkillers arrived, and Michael was in misery. He was thrashing on the bed and thumping both feet at the same time. He was crying, coughing and his heart rate was soaring. Mom, Dad, Grandma and Grandpa had a lot of work to do to try to console him, and we experienced our first relief of BUNNYTOWN! Thank heavens for that DVD. He watched it calmly with tears streaming down his face. It was heartbreaking how long it took to get him help.

Well -- out of space. More tomorrow. (Author's Note: The original Care Page had a word limit in 2007 that the current Care Page program no longer has.)


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