Cleft Palate Surgery and Recovery

Two surgeries on the same mouth but one would not imagine how different both would be.  Remember the emotional wreck that I was when Ultan was having his lip repair?!  Well, I was definitely more pulled together this time round.

It was a far more relaxed environment and atmosphere amongst us as parents pre-theatre.  This was probably because we know the team now, we know the usual protocol.  Each team member arrived said their "Hellos" (and got their consent/waiver forms signed) and went off to scrub up for theatre.

One of the advantages of knowing your team, is that they hopefully will entertain your requests.  I had asked to be the one who would put Ultan to sleep and sure enough they left the mad Irish woman off to apply the gas mask!!!!  Seated on a stool at the head of the theatre bed with Ultan laying in my arms giggling at the funny surgical hat and mask his Mom was wearing, CS Lam handed me Ultan's mask and I watched Ultan slowly going to sleep giggling at his Mommy's shenanigans.  It was the exactly way I wanted it to be - there was no lashing out from Ultan, scared stiff by the theatre with all these strange people dressed up in green outfits with masks on.  It was just Ultan and Mommy and a mask!

It was still horrendous walking out and leaving him there but I have to say it was not as bad as the first time.  Maybe I trust the team a bit more, maybe I am just used to it a little bit more.  Whatever the reason I didn't feel the need for a cardiologist to be called this time.

Honestly, this little guy melts my heart x

Waiting in his wee cot to be called for his palate repair!

Pre surgery for lip repair @ 7 weeks 3 days old

Pre surgery for palate repair @ 8 months 27 days old

Three and half hours later I collected my baby.  Not afraid to hold him this time, I carried my little man back to his room where he slept for the afternoon while holding his Mommy's and Daddy's hand on each side - sniff sniff!

Holding hands post surgery

on both sides of the cot :)

The surgery was a little bit quicker than we expected (I think we were mentally preparing ourselves for up to 5 hours) and both the ENT surgeon, Dr Hui Yau, and Dr Lam were pleased with how the surgery went.

One of the things I was disappointed with during Ultan's lip repair was the initial lack of pain relief for Ultan.  We had an in house pediatrician working with LK Lam but I didn't agree with his philosophy on pain control (which seems to be that panadol will cure all ills and only once the patient starts complaining).   So this time round I wanted LK Lam to be the one who controlled his pain relief.  Mark and I requested for the first 48 hours Ultan would be very comfortable without pain.  Studies have shown (and to be honest, it is common sense) that if you are pain free you will recover quicker and more successfully.  LK Lam, along with anaesthetist, CS Lam, did a great job of keeping Ultan comfortable with morphine for the first 48 hours followed by panadol and ibuprofen. By Day 6 he was no longer on any pain relief which was a little bit of relief to me - he was obviously recovering quickly, but one worries about long-term use of painkillers.  Besides, Ultan hates taking his medicine and it is a battle to syringe it into his mouth.  Trying to syringe a struggling baby while not going near his wound felt like an obstacle course which ended up with my arm having more sticky pain relief than Ultan!

Every baby should be given an oxygen sensor to play with!

Day 1 and Ultan was so frustrated looking at the sensor but was too dopey to play

Ultan having his palate checked by LK Lam with Nurse Irene.

So Ultan's recovery involved a lot of cuddles but God help you if you stopped moving or sat down, even for a second, you would get a note of disapproval from the wee man!  He has his arm restraints and hates them - I  mean really hates them.    Normally Ultan likes to sleep like this:

but, post-surgery he can't have anything near his mouth which does not impress him one bit.  He did however figure out that if he holds his blanket above his face and lets his drop it will fall into his mouth - yes, I was letting him hold his muslin square to give him a little comfort but we caught him day 3 letting it drop into his mouth - clever boy.  He also figured out that if he manipulated an object up into his armpit he can lean over and chew it....  Or if he lay on his arm restraint, he could wriggle his arm out of it! So, in summary, he hates the arm restraints and smiles are hard to come by when he has them on.

As I write, It is almost 10 days post-op.  One of the biggest surprises to me is how much Ultan's speech has come on within a week.  He went into surgery saying mama.  One week later and he is dadada, gagaga, yayaya, bababa, aaaa and he is adding to it all the time.  I am sure it is the grommets that are helping but obviously having a complete palate is allowing him to make these sounds.

So, what has been the hardest part for us:  without a doubt it was sleep deprivation.  We were thrown straight back into a newborn schedule.  Ultan was waking every 40 mins with extreme trapped wind.  Apparently it can be a side affect of having anesthetic and you just have to wait for the system to wake up and get back in a rymthm.  Morphine would not help as it can cause constipation.  So we tried, probiotics, massage, heat pads, gripe water, and even brought Ultan to an osteopath but to no avail.  We just had to wait for his system to regain a cycle and it took about 8 days for that to happen.  For the first 8 days post surgery, Ultan was unable to sleep - or go back to sleep - without being cuddled. 

I said it before and I will say it again, you can conquer the world on a good night's sleep. Without it, every cry seems amplified, every mundane task a little bit more challenging.

Thankfully though we are coming out the other side, and he slept about 6 hours straight last night, guzzled a full bottle at 430am-515am, then slept again until 745.

Any concerns:  Yes, I fear the repair was not successful.  Ultan has had discharge coming down his nose on his cleft side and I fear there maybe a fistula.  We have a follow up appointment tomorrow and I am hoping that I will be told it is nothing to fear.

Things I should know better:  how quickly babies recover.  Our wee man is a social little thing and loves nothing more than being out and about in the middle of what is going on.  We quarantined him for the week pre-surgery, mainly as this is the time of year when kids return to Hong Kong form all over the world to go back to school, bringing with them every brand of exotic germs and bugs! So Ultan, after a week at home without going over the doorstep and 4 days in hospital, and another few days at home recovering was going off his rocker with cabin fever. So he has been out and about exploring Hong Kong. Mark even had him up The Peak in his buggy for a two hour hike at 450am the other morning (I think Mark was suffering cabin fever too and from lack of exercise!)

Out and about for beef brisket and Efu noodles - yum!