Children's hospital apologises

Firstly, let me thank the Society for the Protection of Reuben for all the incredible responses to Yuka's post on the Charge Listserv, for comments from friends old and new and family, here and on individual emails. I can't express enough thanks to Yuka for posting on our behalf at lightening speed (Erica my b/f jokes that when she wishes to add a comment on the blog, Yuka's always got there first). Fellow Charge mums and dads on the Listserv know all too well what I mean when I refer to the genius that is Yuka.

The tremendous rollercoaster of Friday prompted a conference meeting with the attending, fellow and resident Drs for Reuben, along with his nurse and a social worker. We'd only been expecting to see Dr Ds. Suffice to say, we assured the Drs that it wasn't misperception on our behalf. We were told things we shouldn't have been told and by people who shouldn't have been telling us things. An example of this which will cause any folk on the Listserv to scream when hearing from a 'cardiologist', "We can't tell whether he'll have the mental age of 2m at 16 yrs". Who the hell is anyone to predict Reuben's neurological development, let alone a cardiologist? I come back to the inspiration from the Charge conference, to Yuka's beloved Gang of 5, to the determination and humour that is so extraordinarily apparent in kids and adults with Charge.

First came an apology and an admittance that it is an imperfect situation when you hear things 2nd and 3rd hand. We call this Chinese whispers in the UK but I understand that term is neither PC nor does it translate into American too well, especially when there's a Chinese Dr in attendance at the conference meeting.

It seems that what Dr St (cardio surgeon) has to say should be heard from Dr St himself and not through a resident or fellow Dr. Dr St's alleged comment "I do not want to meet Reuben" it appears, is a misquote. We go back to where we were a few weeks ago, that Reuben is a little small (and getting smaller) than he could be, but congenital heart disease can and is operated on premies by Dr St. So, we're giving Dr St the benefit of the doubt and awaiting his return from leave so we can hear his prognosis directly.

Meanwhile, our lovely primary cardiologist Dr De Oliveira has said twice "I hate to disappoint you, but Reuben's heart conditions are not that complicated". We take comfort from that and indeed the many replies on the listserv that echo the same.

I could labour on these feelings for eterntiy of how can they have got things so wrong to leave us with the perception that euphanasia is on cards, but best to move forward now.

The good news is that Reuben has responded well to diuretics and support. The primary issues are:

1. heart (small PS but clearly the pulmonic value is not working well despite Reuben saturating at 100%, large VSD, ASD, minor PDA, coaration of aorta (now opened slightly with balloon)
2. airway (caused by secretions, functional malatia or granulomas. TBC).
3. growth and development.

Reuben has been losing weight in hospital, is <4kg (<9lbs) having gained weight whilst he was at home. It's unclear whether this is due to the calorific intake (now upped to 30k) not being high enough to meet the demands of his heart working harder. Effectively, his heart is acting as an inefficient pump. We cleared a concern that our physical therapy and playtime with Reuben's legs (the leg lifts), could be causing him too burn too many calories. It made sense as a proposal at the time, but seems pretty dumb on reflection. So on Tuesday, Reuben will have surgery to remove granulomas of the throat caused by ventilator intubation. The ENT surgeon will also remove any soft tissue.

This, along with a reduction of the secretions we now pray will remove the upper airway obstruction and allow Reuben to be extubated from the vent, thus preventing a tracheostomy with the resultant complications from heart surgery. On that front, if a trach had to be done, the options remain:

1. Trach operation now, remove trach (decannulate) 48hrs prior to heart surgery in a few months to prevent spread of infection from throat and into open sternem during heart surgery. Dr D's confirmed and thus dismissed the Chinese whispers myth that a "trach is not an impediment to surgery".
2. Heart surgery now, trach after. Risk: he's still small but Dr D'O says not too small and he's not that complicated.
3. Keep Reuben intubated for months until he's big enough for heart surgery. Risk: Experience here has taught us it's not in Reuben's best interest re growth development or growth of new granulomas.
4. Orophorangeal airway (oral airway). Discussed at mtg but apparently not well tolerated due to gagging reflux. Kennedy successfully had such an airway.

So, Tuesday it is for surgery.