Rough Recovery

Matteo's palate surgery recovery has been rough going.  Most of last week was difficult as he was enduring those painful first couple of days after surgery and we desperately tried to stay on top of his pain medications.  Even with his pain controlled, he's miserable on a liquid diet.  He cries so much and I know it's because he's hungry.  He shows little interest in what we serve him, presumably because he wants real food.  I haven't seen him eat pudding since he left the hospital and has turned down ice cream and yogurt too.  Instead he moped around the kitchen while I made dinner and with a desperate look in his eyes, pointed at the noodle casserole on the counter.  Another day, we were eating lunch, and he refused what I had served him.  He wanted to sit on my lap while I ate my sandwich and Sun Chips.  He picked up a chip and held it in his hand.  I was curious if he'd try to eat it, but he knew he wasn't allowed to and instead tried to gently lick the chip.  That was one of the most pathetic sights I've seen!  It broke my heart and made me wonder if this experience is going to damage his healthy relationship with food.  Matteo has a healthy appetite and has shown no signs of food insecurity like we'd learned about during our adoption training.  He lived in a foster family his whole life and was never deprived food.  But that's exactly what we're doing to him now.  He has no way of knowing that what we're doing is actually meant to keep him healthy. 

Just when we thought we could ease him off the prescription pain medications, Matteo suddenly seemed to be in as much pain as he was the day after surgery.  When his fever spiked to 104 in the middle of the night, I called the triage line in a panic thinking that his palate had become infected.  The doctor told me they rarely see a post-surgery palate infection and the likely culprit was an ear infection.  He sent me to the pediatrician the next morning who confirmed not one, but two badly-infected ears, which he managed to get despite being on an antibiotic after the surgery.  She prescribed daily antibiotic injections, assured me the shots are fast-acting, and even double-checked his palate.  I felt relieved leaving the office that we were back in control of Matteo's recovery. 

Matteo continued to be fussy at breakfast the next morning and didn't want to eat, which we assumed was because his ears were still hurting him.  When I looked at him from across the table, I saw what looked like a flap of skin hanging down from the roof of his mouth.  I darted around the table and looked in his mouth to see my fears confirmed.  The stitches from his palate repair were coming undone.  To me it looked like the roof of his mouth was coming apart. 

I called the triage line again, this time in tears.  Matteo's surgeon called me back and tried to assure me it wasn't as bad as it looked and promised me he's not in worse shape than before the surgery.  Unfortunately, the front of the palate is very fragile and there was a high likelihood it wouldn't hold.  But because the palate is made up of two layers (an oral palate and nasal palate), he explained we only needed one to hold (preferably the nasal palate).  Whatever was happening with the oral palate I was seeing coming apart, it wasn't something a few stitches could fix and we'd have to let it be and reevaluate in six months whether another surgery would be needed.  I hung up the phone feeling like I'd been talked back off from the roof ledge.

I panicked again the next morning when I looked in Matteo's mouth and saw that more stitches from his palate had come undone and a flap of palate that had once connected somewhere right behind his teeth was close to resting on his tongue.  I called the triage line again and asked to see any doctor since I knew Matteo's surgeon was in surgery all day.  I was shocked when the nurse called back and said the doctor would see Matteo between surgeries if I could meet him at the hospital in an hour.  We happen to live close to the hospital, so I loaded all four kids in the car and headed over.

I almost wanted the doctor to look in Matteo's mouth and gasp about what rough shape he was in because it would mean they'd have to do something.  Instead I heard much the same from what he told me the day before.  There's nothing they can do.  He only needs one layer to hold.  The nasal layer is intact.  I questioned what to do about the layer of his palate hanging above his tongue and he assured me the whole thing wasn't going to rip away.  I can't imagine Matteo starting back on solid food in this state, but the surgeon said the layer will eventually retract and his mouth is going to look a lot different a month from now.  I guess I just have to trust him. 

As if he had read my mind, he said he never blames the parents or the child, because as careful as we are, a child sticking his finger in his mouth or a parent hitting the roof of his mouth while spoon-feeding isn't a likely cause.  If the it was going to fail, it was simply going to fail.  In a way, that was nice to hear since Chris and I had been racking our minds trying to pinpoint when everything went wrong. 

The doctor also recommended we stop looking in Matteo's mouth, because it does look worse than it is and we'll only worry.  That's harder said than done when I can literally see part of his mouth hanging down above his tongue! I have been peaking and, yup, it looks worse today than it did yesterday.  Yet I'm slowly starting to trust the doctor.  We have another post-op appointment on Friday and hopefully enough time has passed at that point that we'll be able to assess what the rest of his recovery is going to look like.