Today Miles had his evaluation from the Meyer Center for Developmental Pediatrics at Texas Children's Hospital. We were late, about 20 minutes, but we got right in. We were on the waiting list for about 1 yr for the evaluation. I was so terrified that we would get there and they would say they couldn't see us because we were late. We saw Dr. Madduri (she isn't on the TCH website). We liked her, Miles liked her too. She said that Miles is at an 18 month level for his speech. She suggested that we get him tested by the public schools closer to his 3rd birthday to start services there. He is on level for just about everything else. She said absolutely no to Autism (we knew that) and that he may have issues later on with reading, reading comprehension, and essay writing. She also recommended that Miles have an MRI to make sure he doesn't have any damage from low/lack of oxygen from birth, or from when his shunt narrowed, or when he had his...whatever it was, when he stopped breathing and turned blue and needed rescue breaths but they swear it wasn't a tet spell...from that. I would like to see what the spot on the back of his head looks like where he had the pressure sore after his 2nd surgery.
Anyway...He did go to the ER on friday of last week. He is okay. That night he had a low fever, 99.5...then in no time it was 102.5. Dr. T says that 102.2 is the magic number. Plus, his heart rate went up, he was increasingly lethargic and not responding well. This happened in a matter of minutes. It really freaked us out, hence the ER. We got there at 9pm. He puked all over the lobby. We were seen in triage at 9:30 and then waited until 12:39 for a room, yes 12:39. When we got in the room, his temp was 102 still, they gave him more tylenol. His pulse ox goes down when he has a fever...does anyone elses kid do this? He is normally 97%-ish but when he had a fever it was 93-94%?? Anyway, his pulse ox stayed pretty steady, his heart rate was up a little bit. Normal for him is about 130-135 but when we got there it was 157. Still, the docs didn't seem concerned, hence the 4 hour wait. Although, I should say that we got in before a kid that came in on an ambulance. He had a seizure and was not breathing when EMS got there, but by the time he got to the ER he was fine...well not FINE, but you know what I mean. When we were #1 on the list, they were #12. I felt a little bad. Anyway, they checked his urine (because of the recent not going for 17 hrs and saying 'ow' when he pees), it was fine. They did a blood count and his white count was low--virus. I cannot tell you how much I hate to hear, "We think it is a virus." Because the next thing is, "Just watch him, if he gets worse, come back." No treatment, no nothing to make him feel better. But, he is over it now, I think. He has had no fever since Saturday. His sleeping is a little off. He has been waking up at 4:30 screaming and pointing to his chest (like he is pointing at himself, not his heart) and saying 'no mama.' He was doing this before the ER so it isn't just me, I think he says 'no dada' to Sean. If not, maybe it is just me :). btw...we were in the ER until 7:30am Saturday. Sean let me sleep in until noon (he is a good man!).
I have enjoyed my days off although three of them were spent at Texas Children's Hospital. Thursday, speech therapy, Friday/Saturday, ER, and today Tuesday, Meyer Center.
So next is Sept.7, Gastric Emptying Scan and on Oct 3, MRI (he has to be sedated for that one--regular sedation no CV anesthesia--woohoo). I plan to update before then, but we may not be that exciting for a while (thank God!)
btw...Riley's open house at school is tonight. He is doing a great job in Preschool! He is sad when we pick him up because he likes to stay and play :) He goes to Our Saviour Lutheran School
I hope everyone is having a very uneventful week :) ~Becky