Long Overdue Update

Hi All...This is Michelle posting the latest from Jill:


So I left you last with saying Saturday would be quiet and it was. Saturday night we decided we would start pedialyte at 5 cc's an hour. Sunday morning, he was doing some vomiting, so the doctor wanted to try a new medication, called Reglan. It is supposed to help with GI motility, but also comes with some pretty big warnings on it's label; especially for children who have seizures.

By Sunday afternoon, he was still vomiting, and now starting to have issues with his heart rate. His heart rate would inexplicably drop to about 60 beats (his normal is 100-120) and then slowly come back up to where it needed to be. Around 1 am, he woke up having a huge seizure. Matthew typically does not seize in his sleep, which was odd. Then the retching started. HORRIBLE, horrible amounts of retching. And as soon as he fell asleep, he would have a seizure, and the cycle would begin ALL over again. About 6:30 a.m., I was awakened to someone semi-frantically saying his name. I woke up and opened my eyes and Matthew's whole face was blue. His monitor was beeping, and the saturation was 40%. I thought in the back of my head "here we go, he's gonna code". I could tell he was in the middle of a seizure. I yanked the pillow out from under his head, dropped the head of the bed flat and ripped open his pajama top so I could see his chest. He still wasn't breathing, and the nurse was yelling for help.
My immediate response was to do a sternal rub (taking your knuckles and rubbing them over the sternum; a painful stimuli to make someone respond...in Matthew's case to make him breathe), and he gasped a big breath. The nurses called a rapid response; which is a call that brings PICU charge nurse, PICU doctor, respiratory, and a couple other people I believe. As he came out of the seizure, he started breathing again, and they decided to load Matthew with valium, give his morning seizure meds early, and draw some blood. We almost bought ourselves a trip to the PICU, but the doc's thought we'd try to stay put on the floor. I also said that I didn't want any more Reglan given, as I believed it was causing our seizure and low heart rate problems.

Matthew (and me too) slept the morning away. Because of all the retching, they decided we had given the G-tube only enough trial and said that we must put the GJ back in if we wanted a reliable way to give his seizure meds. I reluctantly agreed.

We also had a new pediatrician rounding, and she sat down with me and went through every possible reason a person would have retching, and what tests could be done to determine if this was the problem for Matthew. I was immediately impressed. We drew more lab work, scheduled x-rays, and consulted neurosurgery and ophthalmology (to make triple sure it wasn't his shunt).

He went downstairs in the afternoon for the x-rays and the gJ tube placement. During an x-ray, he had another one of the "stop breathing" seizures, and scared the crap out of both the nurse and the x-ray tech's. After he came around, we took him to interventional radiology to place the GJ tube. We met with the anesthesiologist, who, in an unprofessional moment, told me he didn't know what procedure we were doing. When he asked his colleagues what procedure was to be done, none of them knew either. I immediately told them they were making me very nervous if they were going to be caring for my child and they had no idea what they were doing. I actually couldn't believe what they were saying! They went and got the radiologist, the chart and got themselves set straight. ( Later that day, the radiology manager visited me, and said the radiology nurse had been told about the incident. He brought me flowers and apologized. (: )

He was brought back to the room about 1 1/2 hours later tired, but doing well. The pediatrician came and talked with me again, and wanted to do a CT scan, and a shunt series to make sure all these things were not related to a shunt malfunction. As the evening wore on, and the Reglan got out of his system, he seizures lessened, and the heart rate dropping episodes went away. He actually slept the most peacefully last night than he has in a long time.

This morning, most of the lab results were back, and everything looks normal. His CT scan, and shunt series were fine. On the CT scan, however, it showed a lot of fluid collection in his left Mastoid (which is part of the ear). The doctor said that fluid buildup there can cause dizziness and vomiting. His sinus x-rays did show an enlarged adenoid. So tomorrow at 11:45 Matthew will be finally having his scope, bronchoscopy, a ear tube place in his left ear, and a probably adenoidectomy.

We also restarted feedings in his J-tube. It is just pedialyte, and it's going only at 10 cc's/hour; but he is tolerating it. No retching, no vomiting. He still is getting respiratory treatments 4 times a day, along with chest percussion (which helps loosen secretions). We've come a long way and gotten a lot done in less than two weeks. I'm very happy to say that the doctors here have looked for every possible problem, and aren't going to send us home until they've searched every avenue. I wanted to be home by Thanksgiving, but I don't think that's possible. It's probably going to be the weekend at the soonest.