Today we went to our appointment at Great Ormond Street hospital (aka GOSH). The appointment was at 11.45 and I decided that we should leave the house at 10 am, primarily because we are ALWAYS running late and I figured that if we aimed for 10 am we might actually get there on time! Well, we didn’t leave the house until about twenty to eleven and managed to take a fair time getting there as we firstly took Westminster bridge instead of Waterloo bridge, then we encountered traffic near Downing Street, so doubled back onto the Embankment and turned left a little further up, then we went round in circles in the one way system near the hospital, finally drawing up by the entrance a little after half past eleven. J dropped Massimo and I off and went to park the car. I think Max and I made it dead on time. Kathy (a colleague of Justin’s) was also due to be at GOSH this morning with her son Leo, and as they had finished she came up to the 4th floor to find us – she was already there when we got there – but alas, and amazingly enough, the doctor was ready and waiting for us, we were ushered straight in. I managed to have the briefest word with Kathy, but apparently she was as pleased as punch to have finally met Massimo after hearing so much about him.
The Bulbar EMG was rather a painful affair for the little chap. At first it seemed to be simply some sort of stimulation of the nerves of first his legs then his arms, and a computer was measuring the reaction. Then came the facial bit. For the face he stuck a long thin needle first into Massimo’s double chin, then into his cheek at two different points and then he decided to do the double chin again. At this point Massimo justifiably wailed. It was all over by 12.10. Unfortunately the doctor gave us no indication of his findings and we have to wait for him to write the report and post it back to the NNU at St. George’s.
We had an appointment at the NNU with Kate, the consultant, so after a quick lunch at home, off we trundled. It was great to pop in and see the other mums that were there: Michelle, Kerry, Kim, Dympna (I hope I’ve spelt those all correctly) to name but a few. Fiona, if you are reading this, I’m sorry I missed you but I’m so pleased that both the twins have been transferred back to your local hospital and I really hope they will be home with you soon – do let us know.
We had a good long chat with Kate who diagnosed reflux. She said that although his head has grown, the ultrasound showed that the fluid has not grown that much and she can see no evidence of there being pressure building up which could then cause irritability (which he has), lethargy (he certainly does not) etc. etc. However, reflux (where acid from the stomach comes back up with his milk) could certainly explain his irritability and the increase in his coughing – sometimes he coughs so much it looks like he is choking, hence coughing up his ng tube (nasogastric or feeding tube) on the previous morning. In babies the sphincter muscle that holds the stomach closed is under-developed and also the distance from the stomach to the mouth is very small, making it highly likely for babies to be sick. On top of this, the ng tube forces the sphincter muscle to remain open making Massimo even more susceptible to reflux. In babies with tracheostomies it is important to reduce reflux as it can cause more difficulties around the trachy site. (I hope I got all this at least 90% right.) All this meant that we were given two types of medicine for Massimo to take which should help him, one is an antacid, the other is supposed to help him digest. We shall see what effect they have in the next few days.
So all in all a day spent with doctors!