Coming surgery

We currently don't have a date for Raphael's next surgery. We are waiting for Raphael's anaesthetist to return and then, presumably, a date will be arranged for the surgery.

We expect the following will be performed:

• ENT endoscope (performed after the pre anaesthetic medication but before the GA is issued)
• tear duct probe
• G-tube insertion
• fundoplication (here is a video of a fundoplication performed by laparoscopy. Raphael will actually have his performed by laparotomy to reduce the risks of complications.
  

Next operation scheduled for 14 June 2007

I have just been in contact with Raphael's Ophthalmologist who has found the scheduled date for Raphael's next operation which is on 14th of June 2007.

This procedure is currently planned to include

• Installation of a "mic-key button" g-tube
• fundoplication
  
• probing and flushing tear ducts

My wife is still unsure about the open surgery and fundoplication and so she would like to speak to our paediatrician again before the operation.

More on this topic to later.

An informative day in the hospital

Our paediatrician talked to me this morning. All the relevant consultants now agree that it is a good idea to proceed with inserting a g-tube and performing a fundoplication. We have a tentative date booked in three weeks for the operation but this is dependant on there being an intensive care bed available after the procedure.

I also finally managed to get copy of a stack of reports that I was missing. The consultants are generally too busy to chase down reports so the best thing to do is to ask a nurse (or intern/resident/registrar) to get copies of all the reports ready for the consultant so all the consultant has to do is say "give the reports to them".

Still in hospital

Yesterday we saw a paediatric surgeon about the possibility of performing a laparotomic (open) G-tube insertion and fundoplication.

The ENT registrar also visited to ask about the mysterious neck which had been ordered for Raphael. Like us, they seem to be unsure why this has been ordered. I actually think that there was a miscommunication somewhere and that it was supposed to be ordered for our other son Zachariah. He also commented that the CT scan showed some evidence of congenital cholesteatoma but he probably does not have this. It will continue be monitored and we will talk more about this at the next ENT consultation.

We attempted to connect for his afternoon sleep but he would not tolerate it again. It seems at though we are not going to have any success with his afternoon sleeps. I was exhausted and so I went home to sleep and while I was out I missed our paediatrician who came around to see us (rats).

Last nights CPAP was good. The intensivist made some adjustment to the mask by hacking at it with a pair of scissors becuase she said that it was probably the mask blocking his nose that was causing the unknown desaturations the previous night. He woke up four or five times last night, panicking with the air flow across his face but had no desaturations. His blood oxygen saturation level was consistently around 97%. They said that they will not send us home with this mask because it is not safe now. They have tried three masks so far but they will keep trying to find better ones.

The intensivist has increased the CPAP level to 9CWP (centimetres of water pressure). This seems to be enough to overcome his obstructive snore. This level of pressure is getting up to the level where we start to have to monitor his facial development. High levels of CPAP can push the front facial bones back during growth. The intensivist is interested to know how much the NGT is effecting the efficiency of the CPAP. We may have to do further adjustment of pressure after the NGT is replaced with a G-tube. This is what his profile looks like now

Still in hospital

Raphael is still on oxygen when sleeping otherwise his oxygen level maxes out at 85% and drops to the mid to low 70's frequently. The paediatricians say that they want him to be above 90-92%.

Early today we had a visit from a paediatric surgeon resident to have a quick chat about having a G-tube surgically placed via a laparotomy and also possibly performing a fundoplication. This initial consultation was mostly fact finding for the paediatric surgeon with some very basic information for us.

At 2:30 pm a session was arranged to give me an introduction to CPAP (Continuous Positive Air Pressure) and how we are going to introduce it to Raphael in the hope that it will overcome his obstructive sleep apnoeas. One thing which really stuck in my mind was when they said that applying CPAP for a child is a life altering decision becuase of the large amount of work involved in maintaining it at night through the alarms and potential issues that itself can cause. The meeting had our paediatrician, two intensivist consultants (intensive care doctors) and two home care nurses who are going to help us maintain this system long term.

Unfortunately (or one could argue fortunately) some of the equipment that was set aside for Raphael's CPAP was intercepted in an emergency for another child so we were not able to start CPAP on Raphael tonight. They pointed out that although CPAP is used widely, it is very difficult to find a mask that fits an infant well becuase the major market for these sorts of devices is for "fat men who drink too much".

We are planning to start the CPAP tomorrow at 3:00pm during Raphael's afternoon sleep.