Endocrinologist, dietician, paediatrician and hospitalisation

Raphael had his first endocrinologist appointment today. There were no surprises, but it is good for us to hear from the specialist. We will have a thyroid blood test at some time but this is not urgent.

While we were waiting for the the endocrinologist we managed to see Raphael's dietician and we were able to adjust his feeding script that we receive from the hospital to reduce the amount of Nutrini and increase the amount of solids fortification (PediaSure).

Raphael had lots of coughing yesterday afternoon so while we were in the clinic we also asked to see a paediatrician to just check his lungs and make sure that he was ok. He had a temperature of 40.9c! He didn't seem to be that sick to look at him but apparently he was cooking inside.

The paediatric registrar had a look at him and his lungs sounded clear, which is good, but his tonsils were really swollen. Any other child would have been sent home but because he is complicated the registrar phoned Raphael's regular paediatrician and when she came in to have a look at him, she ordered him to the ward for the night. His tonsils were so swollen that she was concerned that may exacerbate his sleep apnoea and so wanted him to be constantly monitored overnight.

He was written a script for Penicillin (to treat any possible bacterial tonsillitis infection) and Prednisolone (to reduce the swelling of his tonsils). Of all the drugs in the world I would have thought that penicillin was probably the most well known, well maybe apart from Viagra. But the hospital didn't have any Penicillin. Isn't that kind of like the cheese shop sketch? Oh well the doctors said that Amoxycillin would be fine in this instance and so he was given that instead.

Another long paediatrician appointment

We had another 1.5 hour paediatrician appointment today. I have been quite sick and so it took all of my concentration to follow what was going on during this consultation, at one point the doctor asked if I felt ok because I had gone pale and broken out in a sweat.

Raphael had re-hydrated himself since his last weighing and he weighed in at as respectable 10.18kg in the hospital. Again the dietician and paediatrician are happy to continue the trial without the NGT for another month.

We are also going to have a third in-depth barium swallow to examine Raphael's swallowing mechanism.

During the consultation, our paediatrician said that we are brave parents because we are willing to explore how far Raphael can go without committing him to surgery. I have to say that there is no more effective way to crush someone's bravery by telling them how brave they are. But for me, the safest course of action (surgery and drugs) is not something that I think would make my son's life worth living. So my bravery is not grounded in bold confidence but rather in choosing the long term life benefit over the short term risks. This means that I need to take other courses of action to mitigate the short term risks.

Other topics covered:

• Weight gain, feeding, milk, solids and vomiting
• This last cold that he has had
• Aspiration risks and fundoplication
• Other CHARGE kids swallow development and reflux
• Fundraising for going to Australasian CHARGE conference next year
• List of CHARGE features from UK website. Notably
• Cranial nerves
• Gross motor skills
• Language skills
• Dental issues including teeth grinding
• Sleep sitting parasomnia (like sleep walking except Raphael can't balance standing up up and so he just sits up)

Here is a video of his sleep sitting:

One appointment becomes four

This morning We had an appointment at the hospital for our other son. This just so happened to be with the same surgeon who is scheduled to perform Raphael's coming surgery.

We had Raphael with us and at one point the Surgeon stopped and commented on the nasty cough that Raphael has barking. He said that this might be an issue for his surgery next week. When we said that we were happy for Raphael's preferred anaesthetist to make that decision on the day before the surgery the surgeon replied by saying that the anaesthetist in question would be on leave, and would not be back for seven weeks. Annie and I were dumbfounded. We thought that we had already confirmed that Raphael's anaesthetist would be available and so we didn't know what to say. Later the surgeon confirmed for us that particular anaesthetist would definitely not be available.

Due to an administrative error we still had a paediatrician appointment today that should have been cancelled. So we took advantage of this appointment and had a consultation with our paediatrician about what we were going to do. She was a little concerned about his current cold symptoms and so this, mixed with the absence of Raphael's anaesthetist, resulted in her suggesting that we wait until after his anaesthetist is back. Annie and I were relieved with this assessment.

While we waited between the two appointments we made two impromptu appointments with the hospital social worker (to ask about respite options) and dietician (to talk about his weight gain and dietary requirement).

In hospital again

On Wednesday (21/3/2007) morning Raphael started coughing after one of his vomits. After this did not stop for a while, Annie took him to our GP who was concerned that he might have vomited his NGT out of his stomach into his lung. She pulled his tube out but when this didn't stop his coughing, she sent Raphael to hospital.

Annie called me at work and asked me to come into hospital. I went to the emergency room but it was closed. Huh? Emergency room closed!?!? Oh no wait... the new emergency room has opened in Liverpool street. I had thought that the "emergency" sign in Argyle street must have removed by vandals or drunks.

So I went to the new emergency room and found Annie there. It wasn't long before Raphael was brought into the treatment area and a doctor came down from paediatrics to have a look at him. His temperature wasn't too bad and so he wasn't put on antibiotics immediately like last time. He had a sitting chest x-ray and the initial cursory examination showed no obvious problems in his lungs. Later when the x-ray was enlarged and examined closely, our normal paediatrician found some signs of a previous infection in his lungs.

After a few hours he was transferred up to the paediatric ward and he stayed there that night. His oxygen level was a little on the low side so the nurses tried to give him oxygen with a mask and later with little nostril tubes (I don't know what they are called). But he struggled a lot with this tube on and it seemed as though all his struggling seemed to result in his oxygen level going down rather than up.

The following day (22/3) his temperature had come down and he had stopped coughing. We were getting ready to go home but took the chance to see the dietician while Raphael was still an inpatient.

We are going to continue with primarily feeding him with Infatrini in the short term because his vomiting of solids other than purée causes difficulty in managing a balanced diet. The dietician suggested a number of reducing solids to purée so we will try some of those suggestions out soon. Feel free to leave comments about how to purée meat down to a fine paste if you have any suggestions.

Just before we were about to leave he had his temperature taken again and it was rising again. A paediatrician had a look at him and took blood to have it tested. When the results came back they showed that his white blood cell count was elevated. He was put on intravenous antibiotics again. Raphael is a terrible fiddler and so his line was taped in well and bandaged over the top to stop him from ripping out his line.

He stayed in hospital till today (Saturday 24/3). The antibiotics seem to have worked their magic and he is back to his normal, cheery, smiley self. We will be giving him antibiotics through his NGT three times a day for the next seven days to remove this last infection.

Compiled the blog history up to now

phew that took a while!

I know that I missed detailing several paediatrician appointments, at least one ENT appointment and I have barely mentioned the speech pathologist and dietician appointments but there were many in this time as well. I haven't even touched on the number of times that we have been to the hospital to reinsert his NGT after he has extracted it (3 times last week alone).

On average up till now we have had about two appointments per week. Sometimes four sometimes only one. I can't remember the last time that we had a week without an appointment of some kind for Raphael.

May to December 2006 - Feeding

From May to December we had been trying all sorts of different things to help Raphael gain weight based on advice from the staff at the RHH. Breastfeeding, expressing, different types of teats, different types of fortification, formula, different strength formula, different feeding schedules, and finally Infatrini (the highest powered formula that can be safely given to a baby). Also during this time we had many appointments with speech pathologists and dieticians.