We had our first ER visit for Oliver last night. The past few nights Oliver has been screaming and holding his head whenever we lay him down for bed. He has been totally inconsolable - nothing seems to take the pain away or comfort him in any way. I tried to lay him down for his nap yesterday and he screamed once again for over an hour. So I left messages with our specialists and pediatrician, but I wasn't hopeful that I would hear back from anyone since it was Friday afternoon. Thankfully his doctor called back and I took him to see the pediatrician. She is the best and fit us in at the end of the day. She checked his ears, sinuses, etc and couldn't find the source of the pain. In the meantime, our metabolic doctor called and asked that I bring Oliver into the ER at Children's for a CT scan. There was a fear that he could be experiencing intracranial pressure, sometimes seen in kids with MPS. We came home, had a quick dinner, packed a small bag and off we went. The ER was filled and I thought we were going to be there for hours before we were even seen by a doctor. Thankfully our geneticist called ahead and as soon as I mentioned Oliver has a metabolic disorder they immediately took us back to a room. (Matt joked that we have a platinum card at Children's.) The doctors were perplexed and agreed that he needed to have a CT scan. There was no way Oliver was going to lay still for the scan. But they would not sedate him without an anesthesiologist present, due to the complications kids with MPS have with sedation and she was busy with an emergency for the next 6 hours. Fortunately I was able to get Oliver to fall asleep for about 10 minutes, just enough time for the CT scan to be completed. Our geneticist requested that the chief of neuroradiology review it. Everything looks normal, except for the enlarged ventricles common in Sanfilippo. So, we were sent home without an answer to his pain, but confident that there wasn't any swelling/pressure in the brain.
He had another rough night sleep last night, but did eventually fall asleep around 3 for a few hours. And he is currently napping without any screaming. We are hoping that whatever the cause it is gone and he will be pain free....and we can all sleep once again.
We will be back at Children's Tuesday for his T&A surgery. My parents are coming down tomorrow night to stay with Waverly while Matt is at work and I am at the hospital. It is such a simple surgery, but I still get very nervous about the sedation. Since this surgery requires intubation and Sanfilippo kids tend to have fatty pockets in their throat, our ENT is going to be very cautious. We have already spoken to the anesthesiologist and they are also aware of the additional risks. I am confident we are in good hands.
On a lighter note, we went to a wonderful kids shoe store called "Shoe Train" in Potomac MD today. Waverly needed a pair of sandals to wear with her orthotics and our physical therapist recommended this store. They were AMAZING!! They work with all kids, but they have a special desire to help kids with special needs. They stock all types of shoes to fit orthotics and they spent time with us to find the perfect fit for Wavey. I highly recommend them to all of my DC friends. It is well worth the drive. You will definitely be pleased with their selection and service.