Friday, 29 February 2008

Raphael's heart

The "H" in CHARGE - Heart

The following are the details of what we know about Raphael's heart.

Medical Information
Raphael's notable heart conditions consist of the following:

  1. "Mildly dilated right atrium" (This was noted in the preliminary report and removed in the final echocardiograph 26/5/2006)
  2. "Two small low velocity shunts (1.1-1.2 m/sec) across the inter-atrial septum, suggestive of ASD or PFO." (echocardiograph 26/5/2006). "There is a small L-R shunt across the inter-atrial septum, Vmax=1.3m/sec, suggestive of small ASD" ... "ASD/PFO" (echocardiograph 24/11/2006).
  3. "There is a left sided aortic arch. There is no evidence of a double arch." (MRI 18/12/2006)
  4. There is, however, an aberrant right subclavian artery." (MRI 18/12/2006)
Explanation of the Medical Terms
The following is my simplified understanding of the terms and/or concepts listed above:
  1. Given that this finding was removed in the final report I assume that this dilation was so mild as not to be worth commenting on.
  2. An ASD (Atrial Septal Defect) is a type of defect that is commonly referred to as "a hole in the heart". It has been commented that this may in fact be a PFO (Patent Foramen Ovale), rather than an ASD, which is a common finding which may rectify itself with in the first few years of life.
  3. The left sided aortic arch is a blood vessel that pushes on the oesophagus slightly. Fortunately this is not repeated on the other side as well.
  4. An aberrant right subclavian artery is just a rare configuration in the rout of the right subclavian artery.
The Implications of These Conditions
  1. No implication unless it is actually dilated
  2. This reports that Raphael has a small ASD/PFO that seems to have no practical consequences.
  3. I wonder whether the pressure on his oesophagus is partially responsible for his swallowing problems. A double arch could result in a ring around his oesophagus and trachea, choking him and preventing swallowing, but he does not have this.
  4. There are no practical implications of having an aberrant subclavian artery. It is only relevant to make sure that medial professionals are aware of the condition when procedures are being carried out in the area.
Raphael does not have any significant heart problems. The minor issues only seem to be relevant to anaesthetists and medical emergencies.

Thursday, 28 February 2008

Another new sign: "nappy"

Raphael as started to sign nappy. He is very clear and he knows what it means but I don't think that he has put together the sensation of having a dirty nappy ad needing to have his nappy changed.

For instance If I tell him that it is bed time then he might sign "time" or "hearing aid" or "nappy" all things that we attend to at bed time. But he hasn't signed nappy due to having soiled it.

Saturday, 23 February 2008

Finally signing "more"

Our first two earnest efforts to get Raphael to sign was with the signs "all done" and "more".

As Raphael always seemed to be "all done" when it came to eating he leared that one very early on. It was his first sign. And so we eagerly kept pushing for him to learn "more" but time dragged on and it didn't look like he was every going to say or sign more.

But all of a sudden here it is "more", spoken poorly, but signed nicely. He has been doing it for a few days now and it is very clear.

Thursday, 14 February 2008


We had a quick Ophthalmologist appointment today.

While waiting for the appointment we noticed some people signing in the waiting room and when I saw one of them comment of Raphael's hearing aids I introduced myself and took the opportunity to practice some Auslan on them.

There is nothing new to really comment on from the appointment except that the Doctor offered to examine the articles that I had found with regards to the benefits of occlusion (patching) with a severely malformed eye. I am looking forward to his reply to my email that I sent to him with the articles.

Wednesday, 13 February 2008

Intensivist consultation

We had an intensivist consultation today straight after discharge to talk about CPAP settings, adenotonsilectomy and future possible sleep study.

Finally out of hospital

Yay, finally out of hospital today with oral antibiotics and an iron supliment. Apparently he has low iron.

Monday, 11 February 2008

Admitted to hospital with pneumonia

Yesterday Raphael didn't eat anything and didn't drink much all day and vomited what he drank. He hasn't been eating anything for a week now and he has been drinking less and less of his formula each day so yesterday when he had practically nothing I thought I should call the paediatric ward and ask them what I should be looking for with dehydration. The head nurse went to ask the registrar and came back with the asnwer "bring him in to DEM (Department of Emergency Medicine) so that the registrar can have a look at him". I wasn't very happy about this, but when I pushed for my original question to be answered the nurse did not respond well so I brought Raphael into Emergency in the hospital.

On arrival to DEM we noticed that it was quite busy. There was a person waiting in front of us with a bucket. She was obviously very unwell and just in case she was contagious, I moved Raphael's pram around to face the other way away from her. At that moment another guy came into emergency, also carrying a bucket. I shuffled Raphael's pram away from him too but became quite sandwiched between these two sick people. After going through the triage desk I was asked to sit in the priority seats but one look at them saw little space between even more people I was beginning to think that I had taken Raphael into hospital just so he could catch another vomiting disease. I sat a short distance away from "vomit row" and sadistically amused myself by noticing that when one of the poor soles vomited others joined in the chorus.

After only 1.5 hours we saw the registrar and his examination showed that Raphael was only mildly dehydrated and he could go home and stay home if his intake improved tomorrow. Before we left though he wanted Raphael to have an x-ray just to make sure that Raphael didn't have a pneumonia. Well and you know the result of this already... he had pneumonia.

Raphael stayed in last night and he was a little better today, they suspect viral pneumonia but are giving him oral antibiotics as a "just in case" measure. He will probably be in for a few days so they can monitor his condition.

Thursday, 7 February 2008

Not happy about language development

Raphael has been very slow with his language development lately and his new speech pathologist was very unhappy about him only having only about six signs and fewer spoken words.

We are working on doubling his vocabulary by selecting a number of new nouns that are important to him and encouraging/forcing him to sign them before acting on what he wants.

He has made up a new sign where he taps the back of his hand with his index finger. He is starting to use it quite a lot while looking expectantly to us, but Annie and I have yet to work out what it is supposed to mean. I am not sure if he knows what it means either so I think that we'll just force a translate of "shoe" and give him his shoes along with the correct sign whenever he signs his version.

Friday, 1 February 2008

Sick again

We called a home care nurse out today because Raphael has a bad cough and sure enough later in the day when the nurse arrives his temperature had risen.

Fortunately his breathing is still ok so we wont need to goto hospital... yet...