The first trouble we ran into was an occasional cough my baby had for several weeks, and continued on until his surgery date was fast approaching. Unfortunately, with all of the difficulties associated with surgery and recovery, we were told he couldn't have his palate repaired until he'd been free of his cough for SIX ENTIRE WEEKS. So, basically, my baby would never get his surgery, I thought in despair. The cough finally eased up, and I scheduled the surgery for 4 weeks down the road, certain it would give my son plenty of time to recover. However, the cough returned. Frustrated, I took him to the doctor, where we discovered he had an ear infection. We got him on his medicine, and I called the surgeon's office again since surgery was once again around the corner. Luckily, everything was cleared and our appointment was kept.
Around this time, my son decided sucking on the rounded corner of a wire hanger was a good idea. He shocked me with a sudden outburst and I noticed his mouth was quickly filling with blood. On his lap was his prosthesis the hanger had somehow hooked beneath and yanked out. It was horrifying. My baby cried for a total of five minutes, then decided it really hadn't been that bad. I called Dr. Schmelzer in a panic, and was told he'd be just fine to wait for him to put it back in the next week. My baby's hard palate cleft was pretty huge, so I thought it was a totally unreasonable suggestion, until I discovered my baby could eat just fine without his prosthesis. He'd mastered the art of eating and drinking well enough that not having it attached really didn't affect what was coming out of his nose. I decided to put it off until his surgery a couple weeks later.
We awoke early on the morning of surgery, and drove the hour and half trip to Lone Peak Hospital. We checked in and waited for final approval while the nurse went over general health questions and did an evaluation of him. He was cleared and I breathed another sigh of relief. He was changed into a hospital gown, given a blanket and tiny teddy bear, and we waited for when Dr. Schmelzer would be ready to take him back.
I kissed my little boy goodbye when it was time to go, and prepared for the two hour wait. About halfway through the wait time, a nurse came out to give me his progress. Everything was going smoothly, but the prosthesis wasn't fitting in my son's mouth the way Dr. Schmelzer wanted it to. He decided to go on ahead and repair the hard palate while he was already there.
I have to say I was shocked. I knew his timeline was specific for a reason, because hard palate repairs too early can create some problems that require extra orthodontics and possible corrective surgeries down the road. I was mixed between relieved and upset. However, I have complete and total trust in my surgeon; he's always so careful and exact with what he does, so I trusted that all would be okay. Closing the hard palate added an extra hour to the surgery, but I was at peace.
When the time finally came to go back and see my son, I was anxious to have him in my arms. I didn't know what to expect since his first surgery was so altering. I went up to his recovery room and waited for them to wheel him in in a crib. As soon as he saw me, he burst into tears, anxious to be held. I eagerly waited for them to untangle him from all his cords, and held him against my chest carefully while he calmed in my arms. He was struggling with his oxygen levels, and I was so grateful I'd waited for his cough to clear. We held the oxygen near him for an hour or so until his levels finally got up.
I felt so awful about how difficult this surgery's recovery was. He was absolutely, completely, totally miserable, despite all the meds he was on. He moaned while he was awake, and only slept if I held him in my arms. By the time night came, I desperately needed to lie down and get some rest, but every time I'd lay him in the crib, he'd wake up and scream for me.
I'd been told that most kids had already started drinking or eating by now, but my baby was just too miserable to even try. I watched a LOT of television that day, and was really sore from being reclined with my large toddler in my arms. Around midnight, my sweet nurses took pity on me. They had a brilliant idea of rolling out his crib, and bringing in a bed for me to sleep in. They lifted the bars so he wouldn't fall out, and I finally got to stretch out and get some sleep. It was the best feeling ever. However, it only lasted about an hour.
Around 1:30 in the morning, my baby suddenly woke up. He'd decided he'd had enough sleep, and a strange burst of energy took over his little body. He was anxious to get moving around, much to my painfully tired chagrin. There was a playroom just outside of our room, so we walked over to it. My baby played on the little slide, threw some balls, and played with magnets for about an hour and a half. I was so exhausted, I thought I was going to die. Why did he want to play NOW? I wanted to be happy and relieved my little boy was back, but gosh darn it, I wanted to sleep!
I took him back to the room, and the nurses brought in some grape juice. He drained his cup! I was so excited. He wasn't ready to eat yet, but it was a fantastic start. The rest of the night was a haze. I'm sure I got some sleep, but certain it wasn't a whole lot. When the morning finally came, we tried again with food and drinks. He took a melted popcicle, and seemed to regress. He refused anything. The morning was passing us by, and I was terrified I'd be staying another day. I was so exhausted, and my son refused to nap in the bed. I didn't know how I was supposed to survive on such little sleep.
Lunch time was approaching, and I decided I needed to try his favorite food: macaroni and cheese. The nurses brought in some store-bought, microwaveable mac and cheese (how sweet was that???!!), and he devoured about half of it! I couldn't believe it. We tried some water, and he drank. He saw the can of grape juice, and took some juice, too. It was truly a miracle how quickly he'd turned the corner.
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| Cutest little diaper bum! |
With my past knowledge of recovery, even though my son was doing great, I didn't ease up on any of his medication. We kept right on top of it, and he stayed happy and energetic, even smiling and running around. We made good use of that playroom. I still wasn't certain if we were going to be spending a second night, but a nurse told us we were free to go after Dr. Schmelzer signed the discharge papers! I couldn't believe our luck. It was a great day.
Recovery continued to go smoothly at home, until night came, that is. I ended up sleeping with him on the living room floor or couch the next several nights. He refused to sleep in his own room, and if he did fall asleep, it only lasted a couple hours before he'd wake up screaming and crying. When he finally managed to sleep in his own bed again, it took a good couple of weeks before he felt safe again to sleep through the night. Even now, about a month and a half later, we're dealing with some late, late nights.
During the three weeks of a soft-food diet only, my baby did really well. He definitely missed his Goldfish crackers, but settled well with plenty of applesauce and chocolate pudding. He ate tons of macaroni and we made it easily enough.
Overall, this was by far the roughest recovery. His face didn't take such a beating as his lip repair surgery, but the affects of surgery were longer lasting. He had an audiology appointment, a doctor appointment, and a dentist appointment all within a few weeks of his surgery, and he definitely decided he was all doctored out. Hopefully, as time passes, he'll warm back up to them again. Overall, the surgery was great, and his mouth looks excellent. Some scar tissue was removed from his upper lip, and he's looking fantastic.
Our next appointment with our surgeon will be a Team meeting in September, where we will once again meet with Dr. Schmelzer, his orthodontist, Dr. Jones, his audiologist, and a speech therapist.
