Kai

Kai Burgos was born the morning of August 16, 2018 in Myrtle Beach, SC. Within 10 minutes of birth the neonatologist told us he believed Kai had left lambdoid synostosis but he wanted a second neonatologist on staff to take a second look.  We had never heard of this medical condition and of course immediately started doing research.  As a nurse myself, who had never heard of this, I was extremely overwhelmed by what we were reading on the internet. The following morning we got our second opinion who had more experience in this medical diagnosis and he felt certain he had it but of course said a CT scan would be needed.  Being this was not considered a medical emergency they recommended seeing our pediatrician and letting him make the referral.  We saw the pediatrician a couple days later, who in his entire career of about 30 years, had not seen a case of lambdoid synostosis ever and when he was only 6 days old we made the trek to The Medical University of South Carolina in Charleston, SC.  We met with the pediatric neurosurgeon, Dr. Infinger, and immediately loved her and trusted her.   She felt likely he did have lambdoid synostosis but her approach was to see him at 3 months of age and again at 6 months of age before ordering a CT scan in case maybe the flat spot/ridged area may round out and it not be fused at all.  We were given exercises and ideas to try to get him to lay on the side of the head that wasn’t the flat spot to try to help the molding.  By the 6 month appointment it was the same shape and the symmetry of his ears and forehead was off.  We went right from her office to the building next door and had the scan.  No medications were needed, we bundled him up in his blanket and were able to stand on either side while he went into the machine, it literally took less than two minutes.  We headed back on the two and a half hour drive and an hour into it Dr.infinger called and confirmed what we already knew.  She emailed the scans and explained them and said surgery would be about 8 weeks away.  Within the week we had a surgery date and an appointment with the pediatric plastic surgeon, Dr. Ulm.

 

Everything seemed to move in fast motion at this point. We made another trip to Charleston prior to the April 17th surgery date and met with Dr. Ulm and Dr. Infinger and basically did our preop appointment.  We were so grateful they didn’t do any labs or needle pricks of any kind till he was already sedated the morning of the surgery.  We were first up that morning and had to be there at 5:30.  For this reason we had no hunger issues as he was sleeping thru the night and that morning there was so much commotion I don’t think he was even thinking about food with so much activity to watch around him.  Handing him over and watching them walk away with him was for sure heart wrenching as now the waiting began.  He was all smiles and we felt so guilty that he had no idea what was about to happen to him.  The team took him back about 7:15 and we went to the waiting room.  We got the first call from the nurse at about 8:30 saying he was asleep and labs had been done and the surgery was about to being.  The nurse called out every 45 minutes or so with an update which we were beyond grateful for.  At 11:30 when a call came in we expected just another update but instead she said we are all done and the drs will be out shortly to talk to you.  We didn’t know what to expect, if it was good or bad that the surgery was shorter than expected.  Drs came a few minutes later and said everything had gone just as planned.  The skull had been opened up and a dissolvable bolt had been placed that would stay about 18 months to 2 years before finally being gone. There is no better moment of relief.  They did tell us he had a pressure sore on his cheek from positioning which we could deal with. He also had to get blood, which we knew was a likely possibility but we were hoping he wouldn’t need. They directed us to the ICU waiting room to wait for him to get settled in his room.

 

Let me be fully honest here, the first moment you see your child hooked up to machines with lines and cords coming from everywhere, is the hardest moment of all in our opinion.  We both immediately started crying, all you want to do is pick them up and tell them how sorry you are they had to be put thru this whole ordeal.  We were not allowed to pick him up, we could lean over the crib rails and touch him and talk to him but that doesn’t even seem close to enough in this situation.  The sore on his face was worse than we were thinking it would be and we ended up seeing a wound care specialist throughout our stay. The drain coming from under the wrap had so much output it had to be changed hourly.  Kai did not do well coming off the anesthesia.  He threw up constantly.  Literally nothing was left and it was just bile and dry heaving.  Next came a reaction to the morphine, now he was getting fentanyl and just completely out of it. Between moaning and throwing up we couldn’t take it anymore.  I didn’t want to overstep the nurses in the icu, who were all wonderful, but I picked him up and took him out of the crib.  Fortunately as a nurse I knew how to maneuver him and the lines to not mess them up. After that first night we opted to stop the fentanyl and try tyelonol with oxy only if he really needed it.  The poor child was starving and seemed more upset about the vomiting than about his head.  We moved to the step down unit that second night and we stayed there two more nights.  Over this time he only received maybe 3 doses of the oxy and did well with mainly just tyelonol.  He seemed to almost instantly feel better not getting all the pain medication and finally started holding down liquids.  The wrap seemed to irritated him but he never really seemed like he was hurting.  His poor cheek looked really bad and we were told there was a slight chance it could leave a permanent mark.  He never really any swelling, he looked a little puffy that first day but there was no real swelling.

 

On day 4 the wrap came off and the drain came out.  He was so happy to have the wrap off his head. By now he was pretty much back to his normal self.  He has always been a very social baby and we were worried this may create a fear in him of strangers but thankfully he still smiled and clapped for the nurses and drs and it was almost like nothing happened.  We drove the long ride home that afternoon so grateful to have the worst behind us.  Between getting home and his 2 week post op appointment we really didn’t notice any difference in him.  Not once did he reach up to his head or try to itch the incision.  We were given pain medication for him but he never took anything more than tyelonol by day 3.  The instructions for us were to wash his head with whatever baby shampoo we used and to just be gentle.  No submerging in water but was ok to pour water over him during baths.   I was so afraid the first time we washed it, he never flinched, even when i gently rubbed over where I could feel the bolt under his skin.  By the two week appointment some of the stitches had already come out and his incision looked so clean, we were really astonished with how well it looked.  His cheek still had a red mark but it was definitely fading.  Dr. Ulm said he didn’t need any scar away cream but if we insisted on using one he recommended any one that was silicone based.  He also said keep the incision out of the sun by using a hat, which thankfully he didn’t mind, and he said to make sure his face always had sunscreen to help keep the mark from darkening.

 

July 17, 2019 was 3 months post op.  We haven’t had to go back to see the drs again and won’t have to for another month.  His hair has grown back in around the incision and sometimes it is barely noticeable.  At first many people stared and some came right out and asked what happened.  I don’t think people notice it much now with the hair covering it.  His face has cleared up thankfully but we still keep sunscreen on it always and we always put sunscreen on his head even if he has a hat on.  The surgery hasn’t changed his sweet friendly spirit at all.  He has had a few head bumps along the way but with a child that age it just can’t be avoided.  Drs told us he’s no different than any other child and not to panick over that happening.  We also didn’t have too much sleep disturbances.  He didn’t always sleep thru the night anymore and sometimes seemed to cry out for no reason but that only lasted about a month.  He didn’t need any helmet therapy which we were told typically with lambdoid they don’t. He’s just your typical 11 month old, crawling and getting into everything.

 

I won’t downplay the stress that comes with this type of diagnosis.  We are forever grateful to our family and friends for all the love, support and prayers we have gotten throughout our journey.  We know we may face issues in the future like bullying because of his scar or even the smallest chance of him having to have another surgery. We will face these things as they come at us. For now, we just love on Kai and thank god everyday we are on the other side.