Monday, August 6, 2007

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.

11 comments:

mighty max and mommy amy said...

Thanks so much for the update. Just to let you know, Max had a very similar heart condition to Reuben and it was a similar situation in that he was too small for the open heart surgery. At first they thought we would take him home but he just was having such a difficult time breathing and growing on his own. SO they reintubated him and kept him that way for two months when they thought he was ready for surgery. While those two months were pure agony for me, it turned out to be exactly what Maxwell needed. The surgery and the recovery went perfectly and he went home a few weeks later a brand new baby!

I am praying Reuben too has such a pleasant, positive happy ending! I just feel so confident he will my friend!

Love, Amy and Max

Geraldine said...

Cate,

How can the doctors get away with all this misinformation. As if it's not hard enough having to deal with Rueben's condition, you're looking to them for the answers and for help and all they do is give you worse case cenarios and in this case, incorrect information.

What a horrible journey this has been for you, like being knocked down over and again. I am so glad, however, that they have apologised and reassured you that he can and will be treated for the heart surgery, and the extent of his heart condition is not quite as bad as they had previously thought. I know this is a journey for them as well. Great that his neurological scan has showed up as normal and we can only hope that he will surpass all their expectations and predictions on this front, just like he has done already with battling through against all the odds.

What a brave little boy he is. God bless him and God give you two strength to guard over Rueben, being his protector and champion in all this adversity.

Love you all
Geraldine

yp said...
This comment has been removed by the author.
yp said...

Smiles and cheers for you Catherine ! You and Jason managed this alone and beautifully. With your grace and intelligence you made a setting where the hospital could put their best foot forward (after having put many poor feet in advance) and Reuben's greatest good is clearly at the forefront. I am sure such errors will not be made as easily in the future - they all have their heads conjoined now. To think of the frustration and unnecessary suffering you have endured is almost unbearable - but it is "water under the bridge" and gratefully, no harm has come to Reuben, and there is greater clarity now as a result of it. I am deeply grateful for your kind words, and was honored to find some way to offer some support during such a difficult time.

I cherish my Gang of Five and all their magnificence. Their wholeness is defined by their own spirit, and not measurable by assessments, educational placements and medical diagnostics. I could have stood in the halls with them forever.

So much love to you, Jason and Reuben. I am buoyant with hope and relief for you-
Yuka

p.s. to Erica - I am derelict in my vigilance! I am third of fourth to post today! :o) (I am the deletion - too many typographical errors to endure - so I have re-posted with spelling corrections :o))

MK said...

Great News!! Finally a plan; that is what seems to take the longest for hospitals to establish. Still praying in Arkansas.

Ericap said...

Catherine,

I am so pleased, that amid your fears, you were able to attend the charge conference and I have no doubt gained strength from meeting others who are and have experienced similar challenges.

With all our hearts we hope for sucess for Tuesdays procedure for Reuben and his future improving health.

Each time that I see the most recent photo of you and Reuben gazing into each others eyes, I am blown away with the power of love between you, that is so viusally apparent from a 2-dimensional digital photo sent across the atlantic. You are amazing....

love

Erica

Kristi said...

Catherine - What a sigh of relief and inhalation of pure hope I had as I checked the blog today. I was teary when I called John to let him know what had come of your communication with the doctors. So glad to know they have "made right" by Reuben, you and Jason and that you can all move on from here.
People you know... and so many you might never meet... have been praying for you and sending positive energy your way.
We will think of you Tuesday and anxiously, yet patiently, await an update when you have a chance.
Love,
Kristi, John, Gracie and Preston

skeybunny said...

Catherine,

I am so glad to read that you had a productive sit-down with Reuben's team today. I'm glad to hear at least one of the Drs. is saying his heart condition is not "that" complicated. Now if he can get through this throat surgery, he'll be one step closer to fixing "that" heart.

Progress seems painfully slow when you are in the midst of it, but every baby moves at his/her own pace...Evan took Evan-steps, Max took Max-steps (although they are Mighty Max steps), and Reuben will get there with Reuben-steps.

Hugs,
Sarah, Jeremy, and Evan

Polly said...

Catherine,

I can only begin to imagine what thoughts and feelings you and Jason must have had over the last few days... I was apalled to read about some of what was said to you by the hospital staff and find it incredible that you had to endure so much mis-information, arrogance and complete lack of tact. I know everyone makes mistakes from time to time, but even so...

Anyway, moving on - as you so obviously (and admirably) have - I'm pleased to know that you at least got an apology and, more importantly, some clearer direction from the hospital. I hope the throat surgery is a complete success and that your little fighter will be able to breathe on his own again very soon. I also hope that you get more good news about the heart surgery as soon as possible.

Thinking of you all and sending you, Jason & Reuben much hope and strength.

Polly x

p.s. Ditto Erica's comment about your photos!

Lisa said...

Cheering and waving from Canada!
Sorry you had to go through this at all (misinformation, doctors with zero beside manner, etc) but I'm glad things are moving forward (as they should) for darling Reuben. He will continue to delight and amaze not only you, but those who did not believe, for years and years to come. I am in the process of doing up a photo gift for the three primary nurses Kennedy had while in hospital her first four months in honour of her 10th birthday coming up next January to show them how far she has come. In ten years, I hope you will be doing the same.

Lots and lots of love from Lisa & Kennedy

Leslie, Arlin & Katie Kauffman said...

I have been following Reuben's story through Yuka on the CHARGE listserv. I am relieved to hear that his doctors apologized and are moving forward with helping him. No one can predict what our children will do--they defy all odds!

Praying for you and sweet Reuben in Ohio.

Leslie and Katie (age 5, CHARGE)