Various beeps in the background

Until now, arriving at Wren's bedside when he is still trying to sleep, I haven't had time to write about all those other aspects of hospital life which create the unforgettable atmosphere. Here are a few glimpses:

• Beeps. Anyone who has tried to get a kid to sleep in hospital knows about the beeps. They drive us crazy. During the critical care and recovery time you tolerate them because its reassuring to know someone knows, and could be responding to every vacillation in your child's vital signs. By the time you hit the floor you are starting to invent technology to implant the beeper in the specific nurse and have total silence. Could we have them wirelessly phoning the nurse's headset instead of alarming? I suspect that nurses are so inured to beeps that they could sleep right through them while the rest of us writhe and turn, jumping within a second to silence them. Of course, we have all learned how to silence alarms but only for 3 minutes without turning the monitor onto standby (which I do too at times when we go to telemetry). What we are supposed to do is diagnose and remedy any beep Wren has on the floor. This means retaping his toe pulsox and resticking his respiration monitors (3 wires he tosses off in bed)... without waking him. Is it worth it? Not tonight.


• Helicopters: Day and night, every few hours you hear helicopters. You don't hear them in 3W but whenever I went outside, even to the cafeteria courtyard, I have a good chance of a helicopter. The air ambulance lands on the left roof of LPCH and sometimes hovers overhead a while before swerving off away from us. In the CVICU you often get ambulance nurses [good god, I can't even remember the word for them I am so tired and brain dead - oh! Paramedics... not dead yet!] leaving with their stretcher/trolley thing piled high with bags. They must bring the patients in some way that is secret and fast but leave along with the rest of us.


• Construction: All day, you are surrounded by workmen. They carry their coolers at lunchtime, rolls of cable at 9pm, carts of tools and tape all day. As I was wheeling Wren about the floor yesterday he kept asking "what that noise?" as the roof was shuddering. I told him it was "drilling" and "tools" and he asked for "more drilling?" It was "too loud" I told him. To give the construction crew credit, they are the neatest, tidiest, most considerate workers I have ever seen. Well, you don't see them work because all work areas (however small) are encapsulated in tents before the tools are used. So all around the hospital you see these little white tents from which noises, and occasionally heads, emerge. I was told that once, when they didn't use the right tent, the roof flooded and part of the top floor. This may be a rumor. The worker who told me looked wry and amused.


• Wooshing: I don't know if its the air-conditioning, a ventilator, a noisy computer or just the oxygen mask which streams air above Wren's bed, but hospital rooms always have the hum of machines. Its a background wooshing like a white noise machine set a few notches too high.


• Hand sanitiser: Its everywhere. I know we are supposed to use soap as the first line of defence but apparently everyone has already fallen back to the secondary position. Nurses, families, kids in the playroom all get a perfunctory squirt of a goopy white stuff that smells of alcohol. It doesn't seem to be messing with my skin as much as the soap wash in the Seattle CVICU but perhaps that means it isn't working. On the plane I read Mother Jones which had an 'expose' on the soap industry. I think it mentioned the irony of our germ phobia while Australian doctors are combating the rise in asthma by feeding children dirt-tablets as medicine to build immunity. I just want to say now, we are not usually this clean. We will not be this clean again. Just give me a few months to recover, to regain my normal wallow.


• UV and Gloom: The lighting levels are strange in hospitals. The halls are that tepid level of institutional UV which is neither bright and cheerful nor gloomy. Enter a room and its a different story. The rooms are kept shaded most of the time - like little caves. However, each bed has a few light settings and none of them are mood lighting. They are just too local to feel BRIGHT unless you want BRILLIANCE (as if you are illuminated for surgery or a procedure or were growing dope in a cellar). None of it feels normal.

So far today
Discharge plans continue. Labs were done 4.45am. I think he is almost up for the day but now its Chest X-ray time.

Cheerful Morning

Morning Pictures
Wren is feeling cheerful this morning and I am feeling a bit rested too after 7 hours sleep. We remain in the 3-West intensive care where Wren is the least intensive but most conversational patient.

Before breakfast we looked at photos of home and played with the breast pump parts that are no longer needed. Wren is not sure whether the pump attachment is a trumpet or a toe-parasol. Here is is trying it out and reading pictures.



He is hooting "Mummy...Wren.... EAT.... egg... num-num" telling me about his breakfast.

Unfortunately, my 8 course breakfast of french toast with syrup and yoghurt and orange juice AND milk and cheerios (which would have kept all of us fed all morning) was lost in the transfer and we have the BASIC breakfast of unsalted scrambled egg with marshmallow-like white bread and petrochemical margarine. It is not going to get me down because Wren had a good night and only 20ml of chest-tube output in 24 hours.

We hope to lose the tube today and I will talk about the IV. The IV is is last remaining peripheral tube and its causing problems. Its leaking a serosanguinous mixture [that's our word-of-the-day Tam] fluid onto the "big bandaid" arm splint. If we leave the splint off it is even worse because his movement at the elbow occludes the line and causes backflow and leaking.

We will either remove or clean it today.

We have also been told that his sternal incision will be undressed today (uncovered) for better healing and observation.

Joshua is having a shower and will cycle over here in a little while.

3-West!

Wren has been prepared for transfer to 3-West. I left at 2pm to change shifts with Joshua and we received word that he will be transferred at 2.30pm. They are moving a patient from the critical-care hub of the CVICU into our spot and a new post-operative patient is coming into the unit.

Our room has already changed a lot today. The two older kids with pulmonary valve replacements were discharged. Not just to the floor, but home! Wren was third in line for the Ward but because they were discharged he got to go early.

We are very excited but now have to take a greater responsibility for his moment-to-moment care and will sleep in the room with him.

While I was there over lunch he had his central line removed and his dressing changed. The incision looks excellent. He now has only his chest tube, left arm IV and the pacer wires which stick out of his chest in an alarming way. Frost's friend Dylan would find it fascinating because they look just like wires to plug into something (which they are, kind of). They are there for "an emergency" and will be one of the last things to be removed.

Pictures
Here is Wren having his echo done yesterday. He was very good and watched a video about animals which included the fascinating fact that sloths can swim. We saw a segment of swimming sloths in a swamp. Its enough to take your mind off things.



Here is Wren this afternoon, shortly before central line removal. The central line goes into his neck and you can see the little white disc covering it. You can also see his "big bandaid" - the blue splint - which stops him bending his arm and occluding the IV. He is playing on the telphone, calling Ky-ky and saying "ello" in a singsong voice.

Heart Surgery is a Team Sport

After meeting with our cardiologist again this morning to discuss the Seattle and Stanford options we still do not know whether we are on Team Stanford or Team Seattle.
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NEXT STEPS:
Sept 18th 9am - Phone conference with Dr Hanley
Sept 18th 1pm - Second opinion with Dr Krable
Sept ?? - Early surgical consult with Dr Cohen
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Here are Dr L's responses to my questions about the Seattle Plan to save valve if possible but otherwise replace the aortic valve with a bioprosthetic:

1) If BAV is a connective tissue disorder causing dilation of the aortic root, what complications would this cause with a bio-prosthetic valve replacement?

Yes, this could become a problem. In Wren's case we don't see any dilation of the aortic root at this point although we wouldn't expect to. In fact, he has restriction in this area. But over time if this became a problem it would affect the valve in the same way as a pulmonary graft would be affected (leaking, etc) but at least his pulmonary valve would not have been damaged - it would still be in place.

2) In your experience, what is the likely lifespan of a bio-prosthetic valve from either deterioration or being outgrown?

The growth and degeneration are two processes that occur but we expect it to last about 10 years at this point. It can be less - say from 5 years but some last longer. In the Ross procedure the pulmonary valve has lasted more than 20 years in some people but it is more likely to last 20 years in adults, say from age 20 to 40 than it is to last from Wren's age to age 20.

3) What size valve is likely to fit Wren and what are the techniques and risks of inserting a larger valve in this position?
The surgeon can make pretty much any size valve fit. There are risks - you can ask the surgeon about those. The main risk is that if the valve is too big, we occasionally see this, it can obstruct the natural motion of the mitral valve because it needs something to force against but it can't be too big. So sometimes we see this post-op and we have to go and fix it.

4) What procedure will be used for the sub and supra valvular stenosis (patch? carving?)
We would use a Kono Procedure which would cut away the septum here [will insert picture] and patch that area. It will be sewn back to muscle in about 270 degrees (this is a three dimensional area) but about 90 degrees will be a patch.

5) What is an average recovery time for this procedure?
Ah, it depends. About 10 days... 12 days?

6) Could you put me in touch with someone who can give me information on the Number of cases and outcomes for this procedure?
That is something you will have to ask the surgeon. You can speak to Dina and schedule that surgical consult sooner [currently for 2 days prior to surgery].

When I asked Dr Lewin what he would do he didn't actually give us a recommendation. He emphasized that he had been part of the decision which is now "Dr Cohen's approach" - to do the valve replacement not Ross if the valve is not salvageable, implying he is party to one side of the controversy. He also gave us a lot more background on his views - how he has worked with and respects Dr Hanley a great deal, used to propose the Ross-Kono for all patients in this situation, saw many PV failures, changed his views and now is opposed in cases of BAV.

He said that if we don't reach our own decision about where to go we really have to decide "who to trust".

On one hand he feels that we have to choose a procedure because "this is a point of divergence" between Cohen and Hanley. He feels that Hanley will say that in my patients I don't see this problem [degeneration of PV in A position in patients with BAV] and perhaps "I do the surgery in a way to.." and we will have to see whether we are persuaded.

On the other hand we can consider the institution because "heart surgery is a team sport." On this count, he argued that the institutions themselves have similar levels of infrastructure and outcomes post-op but that the determination should be on the surgeon.

"They will make similar decisions with a different set of eyes"

I said that I felt popular views were that Stanford is better equipt and does higher volumes than Seattle. He felt that much of this information was "a popularity contest" although he laughed about saying this from a lower ranking on the List of Best Hospitals and questioned what volume was necessary for expertise to build up. He feels that the 12 bed CICU constantly full gives the Seattle team enough expertise to do a good job.

But we should also consider the level of family support we have here vs Stanford "in case a 2 week hospitalization turns into 2 months".

Josh was quite persuaded by this argument - he feels the advantage of being near home more keenly. I am more impressed by Hanley's reputation of excellence.

I have asked for copies of the notes and the cath tape to take to our NEXT second opinion on September 18th. We are going to see another cardiologist - Dr Kimberly Krable - who saw Wren prenatally.

We are hoping she agrees with someone so we have help with this impossible decision.

Do you want to help? We could decide by poll. Apparently there is so much doubt, projection, controversy and big UNKNOWNS that it would be as good an approach as any.

Stanford Opinion & discussion "To replace or not replace AV"

Here is the summary of my conversation with Dr Lewin. He is sending me a copy of the letter.

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The team Looked at the cath and echo findings. They agreed that Wren did need 'intervention'. Surgery should be done relatively soon given the parameters.

In particular, he needs relief of subaortic narrowing and supra-valve narrowing.

Approach:
They were cognicent of the small size of the valve but felt could potentially be spared and were hopeful and inclined to take the more conservative approach of leaving in the valve.

In leaving the valve behind they know its not going to be functional long term...

[Dr Lewin's comment: Of course it is preferable to leave in the AV in a young child because the alternative is not optimal but I am very worried about the valve....]

After the surgery for the repair of the SAS and supra-valve stenosis we will test the AV valve gradient and the fallback option, should we have an unacceptable gradient will be the Ross-Kono procedure.

[Dr Lewin spoke with Dr Cohen (Seattle Surgeon) about this approach and they are concerned about the issue of multiple bypass runs and potential cardiac dysfunction as a result of this strategy. If the AV gradient is too high they would have to put Wren BACK on bypass and expose him to further risk of heart, brain damage. Overall, a much longer run on bypass increases the risk considerably. Obviously, they are tolerant of a higher degree of risk in surgery while we feel more conservative there.

[Dr Lewin continues...."In a small child I am always in favor of saving the valve...BUT in this case we have already had intervention done on the valve -so I have added concern about leaving a valve that already have intervention on.

Also, Dr Cohen said that he can potentially get in an adult size valve which would delay the need for replacement...]

HANLEY: Go ahead with Ross-kono

[Dr Lewin: "Up here we are really concerned about the Ross-Kono for patients with a bicuspid aortic valve (BAV). It used to be thought that BAV was an isolated phenomenon but current dogma is that it is more of a global tissue abnormality and we have seen a fair bit of literature to show that patients with BAV have early deterioration of the (pulmonary valve) PV in the aortic valve (AV) position because it was never meant to do that sort of work in the high pressure AV position and it has similar deficiency as the BAV in terms of tissue composition.

so people are feeling more and more uncomfortable about doing the RK procedure on these patients. If you call around you will find people willing to do it, but its not widespread anymore.

It may be that that was a more generic statement about replacing the valve.. but...

Now, the Pacific NW seems be to endemic for AV disease so we have a lot of experience seeing what happens long term when you intervene in the AV and we are pretty nervous about that whole procedure and what Dr Cohen was recommending was a bio-prosthetic valve - a metal scaffolding with a valve in the middle which is better than pure animal valve - it degenerates slower than pure animal valve.

His answers to some of my Qs:

Q: How do they decide whether the valve should be saved?
A: In making the decision on whether to keep the valve they look at:
Real valve size.
Looking at leaflets, how thick, how pliable, how much motion.]

Q: Would he be on Coumadin with the bio-prosthetic?
a: No, It tets to the point of what is the best choice - mechanical valve you get adult valve size but you require anti-coagulation but not with a bio-prosthetic.

Q: What is the timing? You said "soon" - what does that mean
A: Its not a set time. If we did nothing he may be OK in a year or he may have a rhythm disturbance which would be [long pause] catastrophic.
Q: You mean he could have a heart attack and die?
A: Well, yes... or serious damage to the heart...

Q: Dr Hanley is very highly regarded. Why would he recommend the Ross-Kono if it is falling into disrepute? Could we call and ask whether he would do another kind of valve replacement?
A: Well, he wrote ROSS-KONO on the report and he didn't just write this off the top of his head so that is what he thinks we should do. We could call and ask but... well, this is what he thinks here. I presume he thinks that the articles, the data, is flawed and that we can 'get away' with the Ross Kono in the presence of BAV disease. I don't know....

My thoughts:
I am out of my depth in making this decision. Clearly, Dr L leans toward Dr Cohen's views. He is concerned about the Ross-Kono. I don't like the idea of a Ross-Kono either but I trust Dr Hanley's reputation. I like the idea of staying here but if there is a judgment call to be made I err on the established judgment of expertise - Stanford BUT I confess I have been swayed by this information about Ross-Kono and BAV PLUS neither of us want the R-K and another valve-replacement. I like the idea of a longer term more conservative appraoch.

BUT both surgeons present their approach as more conservative. Dr H's team are more conservative because they want to save the valve. Dr Cohen will also save the valve if he looks at it and thinks it may last a while [he said that too] BUT he is more suspicious of it right now. He feels that avoiding a long period on bypass AND another re-operation soon is more conservative.

Who is right? I Dunno.

I have set up an appointment with Dr Lewin for MONDAY 5th at 9am. Josh and I will talk through the issues.

AND

A Second Opinion on this mess with Dr Krabill at Swedish. Her earliest opening is September 18th but I can phone for cancellations "as often as you need to" said the receptionist.

Wait, I need to call again immediately.

Perhaps I am too wary but I feel that while our doctor here is fabulous he cannot be the source of the dispassionate advice I need right now.