Happy Halloween from our little pumpkin

Kristi Swann says in her comment "the place you least wanted to be is the place where you had a good day!"

"You're a little heavy, Master Reuben, for leaning on me. Have some compassion! " said the Pumpkin

12 hours at Children's, that's enough to zonk anyone

It's funny when Erica asked, after sending a wonderful photo of the kids over, "Do they celebrate Halloween in the US?". The irony of that will not be lost on our American friends. Do they ever!

Today was a much better day, 12 hours of which were funnily enough spent at Children's. It was full of kids celebrating Halloween. I spotted Ariel, Buzz and the Hulk. I loved photographing this engaging group of kids in the lobby.

I received many calls, emails and blogs about Reu's hearing and how we might be able to get support. Thanks everyone for that! Tomorrow I'll have more time to address the hearing matter again.

Pulimonology "a solid citizen"





We had a 740am appointment with Pulminology (that's lungs) and I have to say, young Dr Platzker with his dickie bow tie is an absolute star. I told him about my fears about "not coping with the trach" and he compassionately said "What aren't you coping with? What problems are you having?". I felt I was entering an intimate therapy session.


He sent Sheila his nurse in to see us and discuss the trach. Sheila is the original Jiffy the trach nurse and on her 61st birthday today she reminded me that God doesn't send you anything you can't deal with, which she knew I'd heard a lot of late, but still, it made me cry right there and then (and on her birthday and on Halloween) and provided a much needed release. Dr P also sent in the nutritionalist.

It's a funny thing. I'd been having this discussion with Dr P about Reu's weight and he kept reassuring me "Listen, his weight and height are in proportion", proportionately he's in the 25-50% percentile. I was to ignore the fact that he was the size of a 2.5m old, as long as he was in proportion, that's what mattered. He really had to labour the point with me though. I'm tired and somewhat lacking brain cells at the moment, though rumour has it, they've been sucked up by the decibel-guzzling suction machine aforementioned. Dr P described Reu as a "solid citizen", I like that, and agreed to email ENT about yesterday's bad news on the trach. He said we needed a road map, that's exactly it. We need to know there's a plan regarding the trach, a milestone to reach.

Dr P has put Reu back on the nebulising treatments to aid his secretions. He'd been weened off them since his cardio bypass, but if it helps on the secretions front (Dr P did a sketch prove the point), then it's gotta be good for Reu. The Lasix (diuretic) which he's been on since birth to relieve pressure on his heart, is finally been weened, as is the sodium chloride med. That just leaves the beta blocker for his ectopic atrial arrythmias and prevacid for reflux. The Ativan sedation has gone!

Then onto the lab for a blood gas. Reu is a difficult stick (difficult to poke for a blood draw which accounts for the NICU hairdo where they shaved his head to put an IV line in there), and Jason held him down, as he had back in the NICU, to help the nurse get a drawer. It's always a difficult thing to watch. It hurts enough ourselves to have it done and we still have that lingering memory with Mum of watching many failed attempts at getting a draw in the NICU, over and over again.

Opthalmology "lucked out"

In Ophthalmology (eyes) Reu was given objects to track and was declared alert and responsive, then the ophthalmologist Dr Borchert said he'd do some tests to see if Reu needed glasses. Glasses? We'd never thought about that in the short term, far too many other accouterments, so Reu's pupils were dilated and after some tests, he was found to have an astigmatism which Jason and I have too, but Dr B said there's a 75% chance it will remedy itself. He'd revisit the glasses issue in 5 years. Hurrah! Dr B said Reu had "lucked out" visually in light of CHARGE. Visual impairment primarily from colobomas is very common with CHARGE and whilst Reu has a coloboma in his left eye, he is able to track equally well with both eyes. Actually, his deafness has had the effect of making him extremely visual and responsive to tactility.

Reach out and touch

A great surprise in the garden today in between appointments. Along came Cassandra and Dylan, also in as outpatients with pulminology. Dylan looked so good and it was the first time the boys had met since the NICU days, that of course being the 2nd time the boys met, the 1st time being in the IVF lab of Dr Sam's last August. And actually back in the NICU, they were both on their backs the whole time in between surgeries so didn't actually see each other.

Dylan was born at 29 weeks so although gestationally they're the same age, he was born 6 weeks before Reuben. There was the most lovely moment. Reuben was doing his little red reuster face and Dylan reached out and touched him and I guess that marks the first time Reuben's been touched by another baby. By his first friend. Nice. Back in the NICU days, Cassandra and I had often talked about our boys getting together and there it happened today, quite impromptu, in the hospital garden. A place where we've both spent some difficult moments of contemplation during the hot, dry summer.

Next a flu jab in the clinic. He really takes such things in his stride though.

And then to the NICU and PICU to see the gang. Feel very much at home in the PICU. Fantastic to see most of the usual suspects in today, all festively dressed.

Me and Steph, PICU



Cindy from the NICU

It's a funny thing being back in the hospital. Medical challenges are part and parcel of these kid's lives. Everywhere you look there are brave kids who've been through a lot and strangely, that becomes the norm. It's not until you leave the hospital that you realise, thankfully, that it's not the norm.







Jen & Tonette, PICU

* * *

BTW... to illustrate the point that they do do Halloween in the UK too, here's a cracking photo of Erica's gorgeous kids, Ella Rose and Hadley.

Not a good day

Last night's nurse, ironically one of our better ones who worked with us on the initial homecoming, had to be raised from her slumber at home at 1130pm, so it was another late night waiting for her to arrive. I looked into the suggestion here of hiring a new agency, but really, the nurses may end up being the same ones going from shift to shift and actually that new agency has just called to say they have no available nurses anyway.

Driving to Children's this morning on the highway, we only just missed by inches a side collision hurtling towards us. Things like that happen in slow motion giving you time to desperately pray they won't hit you. Jason had a stand off with the driver, the 2 of them puffing out their chests like peacocks and the guy being incredibly viscious despite it being his error. I reported him to highway patrol for reckless driving anyway as he sped off, if that does any good at all. The fragility of it all, everything you've fought for for so long.

At ENT, the trach stoma's looking good as is his lower airway. Great we thought, but then there was no discussion of decannulation (taking out the trach), quite the opposite. We have an appointment with ENT in 6 months !!!!!! to be followed by a scope to see if the swelling from the ventilator tube's gone down, in a year. That means a year of no action on the trach. A year more of suctioning with the industrial machine. How can they tell if his upper airway is healing if they're not going to look? Apparently it's based on the Drs years of experience with upper airway obstructions, Reuben having laryngeal malatia, flopping tissue. I'm going to chat to Dr Charlie our paediatrician to see if he can shed any light on this unless any of you trach experts out there can help!

On the way home, a confirmation that the BAHA hearing aid is $4,300, a rejection of aid from our medical insurance for coverage and a denial of CCS (California Children's Services) aid despite medical necessity.

I really don't think this level of stress at every level is sustainable. It's crippling. When I look at the CHARGE Listserv and see the issues that noble, brave families are facing once they've got beyond the critical that we've been in for 6 months, gross motor, communication, behavioural, I know too that I'm going to need some other coping mechanism to get through this. It's not for a few weeks, days or months, it's for years.

Overwhelmed with the support from Brintons colleagues

Dear Brintons colleagues,

We are sitting here, opening a huge box of presents, developmental toys, clothes, gift tokens, funds and cards and are completely bowled over! We have, over the last few months, received some truly wonderful gifts from many Brintons colleagues in Kidderminster, Atlanta, LA and Vegas, clothes that Reuben is finally growing into and fantastic toys so this was a great surprise to both of us. We've felt like everybody has been celebrating Reu coming through 5 months in intensive care!

So, I just wanted to write an initial note of deep gratitude and acknowledgement here prior to thanking everyone personally and to say that with the money you have given us, as your letters have requested, we will be setting up a foundation for Reuben.

When my dear cousins, Laura and Michael Durkin collected a great deal of money during the Christening of their beloved son, Aidan, in lieu of gifts, we had the idea that we would set up a foundation for Reuben. Growing up in the UK, we took for granted the benefits of a free national health service and never envisaged having to rely so heavily on an inadequate medical insurance policy in the face of a rare genetic disorder.

I will write more about the development foundation once we've got the details in place and have chatted to Laura and Michael about it as founders, but the idea is that the money you have donated, along with that raised by Laura & Michael, and from my parents, will be used for Reuben's long term developmental needs, thereby having a lifelong impact. The specific areas for development which will be financed by the fund include hearing aids, physical therapy for gross motor skills, speech therapy, occupational therapy to teach Reuben to swallow, sign language, special needs education, medical costs and who knows, a college education! Jason will be sent out on 10k and Half Marathon runs whilst I think of other creative ways in which to generate sponsorship.

I think we truly have never known such kindness from family, friends, religious orders and strangers as we have since Reuben's birth and with the wonderful donations today from Jason's colleagues at Brintons, it is truly humbling and incredible.

http://reubenjackdodd.blogspot.com/2007/09/kindest-gesture-from-my-wee-cousins.html

Bad nursing

Last night's nurse Carl fell asleep again after we initiated a review with his employer following a suspicion that he fell asleep last week, and indeed a stern chat with Jason last night prior to the sleepover. For some strange reason we gave him the benefit of the doubt. Tonight's nurse is a no-show and despite insistence with the agency, there is no back up plan. Two nights on the trot. We are beyond exasperated and angry.

I have 3 appointments tomorrow including with physical therapy and the LA Unified School District and I'm sitting up preparing for another all nighter whilst Jason gets some rest after his all nighter last night. I know this is part of what many mothers experience, lack of sleep, but in Reuben's case, we can't safely fall asleep. And unlike the nurses, we have no desire to do so when looking after a chronically ill baby.

Poor nursing cover is blamed on the national nursing shortage.

There's a great deal of work to be done this week, 3 outpatient appointments at Children's (ENT: Ear, Nose & Throat re the trach, Pulmonology re his lungs and Opthalmology re his eyes), and administratively, several more petitions to try to get financial assistance toward the BAHA hearing aid ($2,600 for his left ear), more petitions to federal, state and local authorities for aid, waiting for our new healthcare company to start service (we sacked Apria on account of lack of delivery of critical supplies for homecoming and a week of ineptitude on their part) and replace the awful decibel guzzling suction machine which even Reuben can hear, and yet, at times like this, I wonder how we're going to have the energy to move forward this week with Reu's development. Much of this frightens me, the strong urge to catch up. If any mother expressed competitive concerns about their child's intellect or development, well, we had to give that up long ago and it's a practice I was never keen on in the first place, yet this really is in a whole new stratosphere.

Great days out with Uncle Joe

Two smiles for one

Sunshine of my life at the Getty

Under my umbrella

My brother Joe looking out over Laguna Beach and the wildfire haze

Siesta

Enjoying a glass on a warm evening at the Cheesecake Factory


Toes

Al Fresco dining

Putting his feet up

more pics and trips to follow... with thanks to Yuka and Scottie for the Escape from the PICU stripey outfit and thanks to Christina and Claudio for the trousers and top which he is steadily growing into

From deafness to hearing

(click to view)

Well, after 5 months of uncertainty, mostly in the realms of "there are no auditory nerves" dictating no possibility of hearing, that news delivered by the Resident Dr in May with a smile on her face, today's BAER/auditory brainstem response has proven definitively that

REUBEN CAN HEAR

His hearing is moderate-severe loss in his left ear (he responds to 55-80db) and profound in his right ear (he does not respond to 95db), which, as you can see from the attached, means he may hear a baby wailing in his left ear, but not the spoken word.

The loss of hearing in the left ear is conductive rather than sensory, as first thought. The loss of hearing in the right ear is yet to be determined but at present, there are no plans to stimulate hearing in the right ear, the loss being too profound.

Thanks everyone for your messages of support and to the believers all along. Dad was sure there'd be a way for Reuben to hear at a time when I was trying to accept there could be no hearing, not without auditory nerves to carry the sound waves to the brain. Dad would think Reuben was responding to things he was saying, yet that was in the same way that he'd optimistically say "Wait til Reuben gets to the Ocean and smells the salty air", the sad irony of that which cannot be lost on any CHARGEr parent.

But I guess we too couldn't let go of the hope that the original BAER test showing severe/profound loss contradicted the 2 MRIs done at different intervals which showed the absence of auditory nerves and thus no hearing at all. It's nagged at me for months and I've beaten myself up about it, still do, that we missed out on early intervention. I guess we've been busy as have the Drs and nurses in saving Reuben's life.

As said, I would conduct my controlled experiments in the PICU in the absence of audiologists, by putting the TV's personal speaker to Reuben's left ear whereupon he would repeatedly wake up, until I got to the point of bugging the hell out of neighbouring families and patients.

The solution is a hearing aid attached to a headband (not a cochlear implant as I first thought.. thanks Fanning for the clarification) called the Baha Softband, designed for babies where an implant is not recommended before the age of 5 due to a baby's skull being too thin and too soft to safely support one. The processor is a bone conductor which transmits sound via the bone to the inner ear.

http://www.cochlearamericas.com/products/1983.asp

If anyone can offer any advice on the Softband, please do! I did come across Kennedy's own experience through a Google search so thanks for that insight and for information on how the Softband might ultimately be replaced with an implant.

This is tremendous, life changing news. We continue to sing to our boy knowing that one day soon, he will be able to hear us...

Update: our medical insurance company won't cover the $2,600 cost of the hearing aid. We've been declined for CCS and Medical (apparently) doesn't cover the aid either. Another huge financial challenge to summount.

Medical update

• Cardio - met with Dr De Oliveira on Wednesday. ECG and echo showed VSD and ASD patches still in place. Residual pulmonary stenosis (after bypass) which doesn't seem to be causing problems, although if it narrows further, a heart cathetarisation will be considered. Still on beta blocker (Propranonol) to reduce ectopic cardio arrythmias (high heart rate).
• Met with Dr Charlie, Chief Resident and Reu's paediatrician on Thursday. Discussed feeding, respiratory, cranial facial follow up (palsy, dentistry), occupational therapy for swallow study/oral feeding, urology
• Hearing - BAER test results. Fitting for BAHA softband on Thursday 1st
• Feeding - 90ml for 1hr then 2hrs off. Looked into soy formula to reduce mucus plugs but wasn't recommended by Dr Charlie
• Meds - being weened off Ativan (sedative) after 5 months on sedation. Being weened of propranonol by growth (ie dosage won't increase). Being weened off Lasix (diuretic) as no longer required for heart but potentially required for lungs (will revisit with Pulmonology)
• Gross motor skills - much work to be done with physical therapy starting Monday. That of a 2m old after his prolonged hospitalisation
• Weight - 5.49kg
• Height - 24" (19" at birth"

Thank you...

... to everyone out there who keeps me sane. Things have been tough of late, emotionally, physically, but of course yesterday's news is a great blessing. I just wanted to thank you all for bearing with me and giving us such tremendous support. You're like a star filled sky, persistently shining on the bleakest, darkest nights. When Joe leaves on Friday and we get ourselves sorted at home, I'd like to return your phone calls, emails, texts, which I've been so remiss in returning.

x

Fire fighting

View of a wildfire west of LA from home in the Marina

View of a wildfire in Malibu from Santa Monica Beach

In the midst of an unprecedented evacuation in southern California, the effects of the wildfires are hitting home and our hearts sincerely go out to those affected by the natural disaster, those who have lost their homes and livelihoods, those who have been evacuated, those whose health suffers at times like this.

***

Been a crazy week, nurses not turning up, urgent life saving medical supplies not turning up upon arrval at home, nurses falling asleep again despite me stating in no uncertain terms that I wouldn't tolerate sleeping on the job on their daily agendas, nurses sent on their way with the result I stayed up til 6am watching Reu until Jason took over, a frightening late night event of calling Jason to help me with the ambubag which we use to give Reu air after a desaturation episode post suctioning a persistent mucus plug and wildlifes keeping us away from the tourist spots (my brother Joe's here and the Griffith Observatory wasn't such a good idea given the terrible air quality). The trach and poor air quality do not a good match make. I imagine the pulmonologists at Children's will be pretty busy in the next few days whilst these fires burn.

Santa Ana winds have brought temperatures up to 95F in Marina del Rey and the dry air has whipped up raging bush fires in Malibu, the canyons and into San Diego. We watched the fires grow yesterday from a hot and sultry viewpoint at the Getty where we took Joe. We've had only 1 rainstorm in Reuben's lifetime and the ground is tinder dry from the record summer heatwave. We were thinking Summer's Almost Gone, spent at Children's, so at first the hot weather seemed like a blessing, a respite of summer heat just on the eve of winter and now, the wildfires...

Today we popped into Children's for a follow up on his new Mickey feeding tube and tomorrow, Tuesday, is the big day... a repeat BAER hearing test.

Family portraits

We had a card sitting around the apartment from our ob/gyn's office offering a free photo sitting, so the guy came along this morning and took some lovely family photos, of which there's a slideshow of about 100 on this link:

http://nathansons.morephotos.com/mp_client/login.asp?eventid=13424&eventstatus=0&categories=no&keywords2=no&groupid=0&bw=true&sep=true&ckw=false

The password is "Rueben" spelt incorrectly. To our families, if you'd like to order some prints, have them delivered here and we'll send them back with Joe.

Enjoy!

Home

And my own photos of the magical event...

At home, on the terrace, on my lap

Bright eyes

Last nap at Children's

Safe in Daddy's arms I

Sleep softly love

Cheeky Tonette

Coming home outfit

Playtime (with war wounds)

C'mon in, and close the door (by Jason)

My beautiful balloon

Safe in Daddy's arms II

Cutting ties

Big yawn

Golden thread

Yes mummy, of course I remember my playmat (right!)

Wow, it's my amazing hands again

More to follow. Neither the day nurse nor the critical medical supplies (suction cathetars, pulsox cables!) turned up so we've been a little busy. Gross negligence beyond description from both companies but that's another story.

With thanks to:

• 
  
  Anne-Marie and Aurora for the sunhat


• 
  
  Steph and Simon for the homecoming outfit (in newborn size!)


• 
  
  Anne and John for the blanket


• 
  
  Phil & Michelle for the onesie


• 
  
  Erica for the knitted cardi


• 
  
  Mama for his lips

Finally Reu is getting to wear clothes so there'll be many more thanks and photos opportunities of your wonderful gifts!

Photos of Reu's Lap of Honour around the CTICU, PICU, NICU and the floor to follow.

Code blue

I'm writing this from the nurse's station, sneakily using their computer, so apologies for its brevity and ineloquence.

On the eve of discharge from hospital, whilst we are busily making preparations at home for Reuben's homecoming, transforming a little used apartment into an oasis of delight and comfort for Reuben, we get a call from the social worker at Children's to say that Reuben has stopped breathing for "a few minutes". We recall Jiffy's information on the length of time it takes for the brain to be starved of oxygen, 4-6 minutes. Dr Kevin who'd been called up from the PICU as part of the crash team, gets on the phone and explains the Code Blue.

A Code Blue was called whilst Reuben was struggling to breath during his bath. He was deep suctioned, but the nurse was unable to remove the secretions from his trach. They just kept coming and were blocking his airway. The Code ensures that every available Dr and nurse, the crash team, rushes to the scene to resuscitate and administer oxygen. The Code is communicated to the experts in the PICU.

Dr Kevin Madden to whom we are so gratefully indebted for his compassionate care over these past 3 months, along with Dr Charlie Golden (Reuben's new paediatrician), have quite simply been amazing, healing both Reuben's and our own heavy hearts on so many occasions in the NICU (May-June) and PICU days. Always going above and beyond.

The incident is a worsening of that which befell when I arrived at Reuben's bedside on the Bad Day. We clarify that it wasn't minutes, but less than a minute, the time Reuben was unable to breathe. Our relief is that it wasn't his heart. I guess you could say it was a mechanical obstruction caused by a blockage in his airway.

I've stayed by Reuben's bedside during the night and he's slept through blissfully whilst on the humidifier, requiring little suctioning beyond the deep suction at bedtime and this morning, whilst Jason returned home so at least one of us was fit today to look after him.

The mucus plug, a heavy build up of secretions, caused the suffocation incident. Dr Charlie came up later to talk to us, to ask us how we feel about discharge today. Whilst racing along the Freeway to the hospital yesterday brought feelings of "this will delay his discharge considerably and we wouldn't want to take him home whilst he's unstable anyway", the realisation now is that this is the trach. It's something we just have to get used to dealing with at home, without the protection of the Code Blue crash team. We have specialist CPR training under our belt, we will have a nurse for 16 hours a day, Jason is on compassionate leave finally and previously untaken vacation, until the end of the year.

I thank everyone for their help in a rapidly deteriorating situation and thank too the wonderful PICU nurses who heard "Code Blue 632C? That's Reuben!!!" and shortly afterwards came up from the PICU to the floor... Tonette, Carole, Rachel, Jennifer and later Susan. It was most overwhelming to see your faces, to have that neck massage Tonette with thanks, to have your messages of support and empathy regarding the m/c which you'd read about on the blog.

I've missed seeing you all. Wayne (RT) got a few tears from me down the phone the night Reuben left the PICU. The last 3 months has quite simply been the happiest worst experience of our lives.

For now, we await the Drs decision re discharge whilst Reuben gazes around the room, Daddy having just arrived, suck, suck, sucking on not only his thumbs, Reuben that is, but 2 soft fists stuffed into his mouth...

Reuben's coming home on Monday

After 95 days in hospital on this admission, more medical intervention than most people have in a lifetime, bouts of pseudomonas, pneumonia, a cardio bypass, a heart attack, lung collapses, aortic valve cathetarisation, 2 throat surgeries, a natural pacemaker block, Mickey tube replacement, pick lines into his heart, 6 failed extubations and a tracheostomy, our Reuben is finally coming home on 15 October.

He leaves behind his need for oxygen support, a nebuliser and many meds, but comes home with a repaired heart, a tracheostomy, cardio, electrolyte and narcotic meds, the latter we are to ween him off at home. His weight is 5.17kg, up from 4kg upon admission.

The sweet 6 year old girl with the wispy afro hair in the hospital whom I shall call Macy to protect her privacy, has been living at Children's for a year. She comes into Reuben's room all the time, wheeling herself in and out, the nurses shooing her away.

She came up to me again yesterday, gave me a big smile and said

"Hello. How are you today? I was worried about you yesterday".

I told her she was a little angel from above. Macy hugged me again. Jason calls her trouble. "I'm not trouble" she replies and wheels herself out of the room with a cheeky little smile on her face.

Miscarriage

I didn't get to post the story, New beginnings Happy endings, which felt so right, the way this chapter should end. Instead I'm posting with great sadness about my miscarriage.

I conceived with Reuben's IVF siblings which all fertilised in August 2006. Reuben was one of the original 3 embryos transfered back then and the baby lost is one or more of the 3 surviving frozen embryos out of the 5 that went on to grow and develop and result in pregnancy.

It's hard to explain what this means to us. Our dream for the last year was that these embryos would survive and now we're dealing with 5 lost embryos and nothing left. It's the pain of a miscarriage in a pregnancy far further developed than is easy to explain. When you know there is human life awaiting its reawakening, you have such great hope. We wanted so badly for Reuben to have a sibling to look after him.

There is sadly little hope for me to conceive again, physically, emotionally and financially.

Our hope for the past year and our dreams for a lifetime have disappeared.

I have the physical part of the miscarriage to come in a week or so.

* * *

A 6 year old girl whom I shall call Macy to protect her privacy who is confined to a wheelchair and has been living at Children's for a year, came up to me and asked me why I'd been crying earlier. I said my little baby had gone to heaven. She took my hand and then hugged me. She told me she has a new mummy who works in the emergency room called Michelle and that she would soon be going home with her.

She came up to me again yesterday, gave me a big smile and said "Hello. How are you today? I was worried about you yesterday"

Cardiac complications

NEEDS TO BE EDITED TO PORTRAY THE CORRECT PICTURE AFTER CLARIFICATION. WITH THANKS TO DR BAR-COHEN

One of the complications from the heart bypass has been that Reuben has a residual murmur. The other, newly noted, is that he has an Ectopic Atrial Tachycardia (EAT), an unusually high heart beat (228bpm compared with 110s normal). EATs are rare arrhythmias most commonly found in children.

Last weekend we had a job working through what the likely causes were, we were all involved in noting physiological changes which might suggest another cause, withdrawal symptoms from narcotics? an infection? the fact that his intravenous line which sits on his heart is tickling it (the line was pulled out of his heart)? but everything came up blank and the Drs were stumped. Dr De Oliveira was stumped. Not what you want really.

Yet it took an electrophysiologist to review his heart rhythms to immediately see that Reu's tachys are caused by his SA node, the heart's natural pacemaker, not sending electrical impulses. As a result, cells in the Right Atrium think, there's no signal, let's send off our own signals with the result that multiple signals are sent out and Reuben's heart tachys to the 228bpm.

He's now on a Beta Blocker medication which manages cardiac arrhythmias, at the initial dose, slowed his heart so much that he had Bradys (low bpm), the opposite to Tachys (high bpm). So I suggested they drop the dose from 3mg to 2mg and his numbers are a healthier low 100s.

This picture provides an illustration of the location of the defects fixed:

• Ventricular Septal Defect - the large hole between the lower ventricles that was patched with his heart's outer membrane
• Atrial Septal Defect - the small hole between the upper ventricles also patched
• Pulminary Valve - the narrowed valve to the lungs was dilated
• Coarctation of Aortic Valve - the narrowed valve that brings oxygen rich blood to all organs of the body was dilated
• Patent Ductus Arteriosis - the valve that should have closed after birth was ligated

These defects lead to Reuben's congestive heart and the need for his cardio bypass on 20 August.

Last weekend was a tense time. Thanks Erica for helping me through it, yet again! We hope his heartbeat will steady out and that he can eventually be weened off this additional med. I asked the electrophysiologist if a pacemaker (meaning another cardio bypass) would be the worst case scenario and he said "You don't want to know the worst case scenario". That said, a pacemaker couldn't actually fix the arrhythmia and either the beta blocker can be weened in a few weeks time or Reu will have the arrhythmia for life.

It's a sad realisation, that perhaps, once a cardio kid, always a cardio kid. After yesterday's horror which has kept me up through the night, Reu is now in a room of 4 with a nurse in the room at all times. And in the bed next to us is sweet Marcio whom Dr Starnes performed his magic on also on 20 August and then discovered he had 3 valves so had to go back in again for a second bypass.

Remember too, my friend Vivian whose baby Carlos (di George syndrome) was admitted on 12 July as was Reuben and we were next door neighbours for 2 months? Well, after several weeks on the floor after discharge from the PICU and watching Reu go through the bypass and then the trach, Carlos's health hasn't been improving and with infection after infection, cold after cold, Dr Starnes suddenly decided to operate on Carlos next Thursday. Vivian called me because she knew we'd been precisely there. Congestive heart failure is all you achieve through waiting for a bypass.

I kindly ask for your thoughts and prayers to pass onto Vivian and Peter, who, like Jason, has been there day after day, week after week, month after month, whilst juggling the demands of their sweet 2 year old daughter at home. A very lovely family!

Bad day

An appointment I had first thing was postponed til later in the day, so I started to get things ready in the apartment for Reu coming home on Monday. I'd made some calls in the morning and when I finished washing bedding, there at the base of the machine was my mobile phone, washed and blow dried. All my numbers. Jason was charging a new one up for me and I picked it up from his office, very concerned it'd be late by the time I got to Reu and knowing he wouldn't be getting much attention.

When you move from the PICU (intensive care) onto the ward, nursing care drops in half. This happened on Tuesday night after two new trauma admissions arrived and Reu went to the top of the list of wellness, the ominous sound of the Baby on Board helicopter's propellor roaring above our heads. This means that Reu is often left by himself in a room with another patient and where I doubt his alarms can easily be heard down the corridor. It worries us sick. I remember Susan our primary in the PICU mentioning that you literally had to be there all the time, but after 3 months of PICU life, well, you have to live, you have to do things, you can't be there all the time. The other dad was sleeping on the sofa in that shared room anyway.

I was feeling frustrated with myself for the mobile phone incident wondering how I'd get all those numbers back again relating to Reu's development, schooling, Drs, and thinking how I desperately needed to get in and be with Reu and whilst doing so, reversed out of the parking spot outside Jason's office, pranging into his colleague's car. My first ever prang and something I feel absolutely terrible about although Carla is assuring me that it's all ok, no damage.

When I walked into Reu's room, the alarm was sounding that he was desaturating and I was met with the horror of dirty clothes through which I could see his chest retracting badly, struggling for breathe and looking grey, sweating and barely meeting my gaze. I immediately grabbed the suction cathetar and thought to hell with sterilisation and gloves (as Jiffy says, you can clear a virus with antibiotics later, but you can't...), poured a vial of saline water into his trach and began suctioning profusely. I got through another and yet another suction cathetar. There were so many mucus plugs that the process itself of suctioning them out of his trach only resulted in him having a completely blocked airway. I specifically asked that he be deep suctioned at night and first thing in the morning after I'd arrived yesterday to find him in good need of a suction.

I called the panic button and the nurse arrived soon after unaware that he'd been desatting and saying he sounded fine earlier. Dr De Oliveira, cardiologist, walked in soon afterwards and put her arms round me and the nurse took over. I just burst out crying and got Reu some oxygen. Dr De immediately ordered that Reu be moved to a room of 4 where there's always a nurse on attendance, reminding the nurse that he's chronic. That's sad to hear but it's true. If you fill his trach hole with thick mucus, what is there left to breathe through?

What if I hadn't arrived when I did? Reu has such a little leak left, that is, residual space left by the trach in his trachea through which sounds can be reverberated, that it's difficult to know, unless you're listening to an alarm, that he's in distress. At what point would a nurse have arrived? I felt more immediate distress than I have for a very long time and other than the 6 failed extubations, this was retraction and desaturation on the scale of when we rushed down the freeways to the ER on 12 July, the start of this long admission. It was at the time and I can say now in retrospect, horrific.

I gave my boy a proper bath for the first time in 3 months, taking all his wires and tubes off and restoring his beauty and dignity. It was the first time I've held him without him being attached to anything - whether wires, tubes, IVs, oxygen, nasal feeding tube etc, since birth. The trach tie velcro had scratched his neck and hadn't been replaced for 2 days, and the gauze was covered in secretions, another oversight.

His Gtube (feeding) Mickey button deflated 6 weeks ago and whilst I've been chasing up a replacement, he's since been on a Coreflo and during this episode the Coreflo spilt its contents of formula onto the floor. The nurse couldn't be certain of how much he'd lost, so basically, he lost the food for good. Surgery had been telling me that they couldn't replace the deflated Mickey with another until after discharge so I said, ok, discharge Reu, we'll sit in the garden and come in as an outpatient 5 minutes later. Our insurance company agreed. Trips back to the hospital are critical, but need to be kept to a minimum. Last time he came in as an outpatient, well, that was 3 months ago and 2 days later he was admitted.

I waited til Jason arrived at the hospital - we're going to make sure one of us is always there with him throughout the day til he comes home - and, after a pelt along the freeway, only relaxed when I sat in the Hampstead born dentist's chair which faced the Santa Monica Mts.

Sweet child of mine

"This blog is all about me"

I think at last I've captured how Reu really looks.

I have photographed him every day of his life bar 3 days when Jason did the honours, as part of a year's project to see how my baby grows and develops, how those imperceptible changes each day create such a great change over a year. The 6 month project will be up here soon.

Daniel

Daniel is deaf, Daniel is blind
Daniel hears, Daniel sees
Daniel cannot feed or breathe by himself without aids
Daniel has Downs, has neuro disorders
Daniel is bright and intelligent yet wears a frightened veil
Daniel looks or hears around for stimulation
Daniel is hard to see through the tubes, wires, machines and pumps which keep him alive
Daniel is a premie, Daniel is full term
Daniel is all and none of these
I see your young mother stand by your crib for a few minutes
The first time in a month
And I catch that rare glimpse perhaps when Daniel goes for surgery
To sign a consent after she's been tracked down
I watch the mother shifting a donated toy in her hands
She is lost
She doesn't know where to look
Yet the distance between her and Daniel is so great
She looks down at Daniel but feels her presence is lost because he can't see or hear her
Yet he knows she's there
He aches for her to touch him even if she thinks the vent stops her holding him
It doesn't
They are his bridges to going home, nothing more
The touch he feels is from the nurses and Drs
When he's prodded for blood
When his nappy is changed
When they hug him for a few hours in the wee small hours
Daniel is bereft of toys in his crib save the ones I've left him
His mother does not touch him
I can smell her fear and want to go and hug her
But there's patient privacy
So instead I hug the mums who aren't coping but are there
The dads who sleep by their baby's bedside
Night after night
Desperately clinging to their child's life
I want too to hold Daniel so very much
I do not want to criticize the mother
But find myself wrongly doing so
Yet I want so much to understand
I want to help her
I want to help Daniel
For whom my heart aches every day
Daniel needs his mummy's love
His daddy's kisses
A home
A family
Please learn to love him for what he has
Not for what he has not
Please grant him that dignity and respect
Daniel is every little boy and girl left unloved at every Children's

Reuben, can you hear me?

For 5 months, we have been told that Reuben has no auditory nerves based on 2 MRIs at different intervals, 5mm and 2mm, and yet he responded to 75db at his birth hospital in his left ear denoting a severe loss and no response in his right ear denoting a profound loss. The ENT (Ear, Nose, Throat) Drs too were unable to see the cochlears meaning neither hearing aids nor cochlear implants could help provide Reuben any hearing. Our approach towards communication has been basic sign language and eye contract, and Reuben's eyes dart to our lips when we talk to him.

Yet the inconsistency always nagged at us. How could he be severely deaf in one ear and yet have no auditory nerves, the two are contradictory? Severely means something. In the deaf community, hey it's almost a positive, better than profound! I would often cry at the loss of hearing. People want to know what we can "fix" regarding CHARGE and this seemed so savagely cruel, something that can't be fixed. Our then paediatrician would just say, that's too bad. So whilst we have been unable to take him out of the PICU these past 13 weeks for testing, dealing instead with critical survival needs rather than longer term development needs, I have been running my own controlled experiment in his left ear. When asleep, I would turn the handheld TV speaker to the ear and repeatedly, he would wake up. With this tiny morsel, I would never give up hope despite the medical opinion, even from audiologists to whom I've spoken outside the hospital. "There's nothing to work with".

Following his trach change in the OR on Thursday, the above is the news delivered by the ENT Dr. The presence of auditory canals which should contain auditory nerves and the presence of cochlears.

The implications are endless. Mainstream education opens up.

If you have any similar experiences or knowledge to share, please do! Our CHARGE babies consistently prove the Drs wrong do they not?

Guess what I'm going to be hammering on about this week at Children's...

A funny new smile

Completely out of focus, but a new smile emerged on the lips of the golden Reuster yesterday

Continued awe and wonder over the balloon, up and down, up and down, up and down