Saturday, August 9, 2008

Can I have a soundtrack, please?

What with stomach flu, impending heart surgery, 2 boys on summer vacation and getting up at 5-something-am every day, it is not surprising that I am missing out on quality time with myself. I have been neglecting all those precious moments doing the bills, watching bad television, making food from scratch and doing laundry oh, and anything creative.

Now doing open ended creative things is very important for me. I can feel my mind making all kinds of relaxing connections when I play - kind of like a day-spa for the soul. But I haven't been doing ANY of it. I haven't drawn, made a necklace, squeezed mosaic into squishy cement, painted a mailbox or done a painting for Mum's 60th (overdue by 6+ months). I haven't even made a playlist on iTunes.

I feel like I am living life with a MUTE button and I am swearing at the Director - "can we have a soundtrack, please?"

This has gotten so bad that my subconscious has started weighing in. Last night I dreamt that I went over to Carrie and John's house and borrowed their laptop. John is the only full-time artist I know here so I guess my mind picked him as the symbol. As I walked around their house (they were supposed to be At The Beach) I admired all the artistic dioramas they had - little nooks with lights in, collections of shells, tiny people doing fun things - and wished I could have done them. In my dream I said "I wish I had time to make art".

Kind of explicit, huh?

The problem is that art is messy, open ended and adult-fun-art is not so good for the Two & Under set. So, its unlikely I can get into it any time soon. Still, perhaps a few beads on a string after dark can be arranged?

Today its sunny. Listening to the new Conor Obert album (and enjoying it). Its a day of birthday parties (2 of them), dinner out for Josh and I (stomach flu is past), helping tour a few more folks at school, running off copies of application folders (for school), cleaning my desk and watching some Olympics if I sit down without Wren asking for "muk muk muk" all the time.

Further conversations with insurance

I spoke with a case manager from our Health Insurer. They say we qualify for case management (not sure if I want to) and are sending out the information. It is voluntary.

The case manager is a pediatric RN and she explained our out-of-state coverage in more details. Basically, we are covered the same as at home as long as the institution AND providers are contracted with their local Blue Cross/ Blue Shield networks.

Lucile Packard is contracted as an institution and Hanley is contracted as a surgeon so it sounds straightforward. Not quite. She advised that I check with the hospital that everyone on the ICU, Cardiology, Surgical and Anesthesia teams are contracted as individuals. Apparently, hospitals are able to contract medical personnel who contract independently. So, we could be billed by an out-of-network physician at a covered hospital.

According to Billing at LPCH they have an institutional physician contract (or some words to that effect) and we will not find individuals who are not with Blue Cross etc.

Thursday, August 7, 2008

Image from Cath yesterday

This is one of the images we were given from Wren's cath. It shows the obstructions that are causing most of the problem. The large fuzzy black shape on the lower left is Wren's left ventricle. The surgeon has drawn two lines across the space leading out of the ventricle and the aortic valve. This shows that the sub-aortic obstruction which makes the width of the outflow tract much narrower (5.6mm) than the valve (10.2mm).

The longer line shows the potential valve opening from the base of the leaflets but those two bumps under the longer line should not be there. Instead, that should be a straight channel going into the valve.

Again, above the valve there is a pinched hourglass with a big bump - a supra valvular obstruction. This also needs to be fixed.

Both these obstructions make Wren's left ventricle work much harder than it should. His LV pressure was 150 under sedation and Dr J estimated it would be in the 200's when active. He also suggested that Wren's mitral valve was not really exhibiting its true motion due to the high LV pressures. They recorded slightly increased pulmonary pressures too (new to us) which shows the mitral valve is also stenotic. Right now, data suggests it is mildly stenotic but the obstructions further down make this hard to evaluate and the doctors were cautiously suggesting it is moderately affected.

This leaves the surgical team a lot to talk about - definite work on sub-aortic stenosis and 'above valve' stenosis. Probably improving of aortic valve since OHS is happening anyway and possible dealing with mitral valve - decision to be made later.

Getting the ducks in a row

This morning I have been on the phone to our insurance company and to Financial Services at Lucille-Packard Children's Hospital in California. After we confirmed the number of possible fixes required by Wren's heart both Joshua and I are leaning towards traveling down there for surgery.

So far, I have confirmed that Stanford Medical Center and Dr Hanley are "in Network" and we should pay only the out of pocket maximum for treatment there so it is an option.

We are being referred to a case manager to confirm benefits and that the surgery is "medically necessary" [in case a parent decides their child needs OHS on a whim?]

I am going to leave a message with Cardiology to ensure they send the data down for referral. I don't want to wait until after the team meets here next week although I am very interested to hear what they recommend.

Wednesday, August 6, 2008


Sorry for the delay in updating. We are home. We have been home a while (2.45pm) but since Wren is supposed to be "non ambulatory" [try telling that to a toddler] it has been hard work.

I took him in the car to the toyshop and we are enjoying a new piece of train track.

Wren is doing well but for a flushed face from a latex reaction (I think). He has a red rash the shape of the mask they used for the gas. I shall have to speak with the Dr about it next time.

Meanwhile, I am still putting together the information they learned from the cath. I shall scan and post the main image which shows the aortic LVOT obstructions later.

Waiting for Discharge

We are sitting in the darkened recovery room waiting for Dr J or Dr L to drop by. We need approval for discharge at 2pm. Wren is still asleep. It is strangely comforting to see the easy arcs of his 'respiration' and heart-rate alongside the 98% saturation. Perfusion of 5.6 but neither of us knows what that means.

Joshua is interested in getting out of here. He wants to poke Wren and wake him up to get the show on the road. He points out that Wren has not eaten the mac and cheese, the pudding and the applesauce we ordered.

I doubt he will want it when he wakes up.

We have been told to expect Wren to be "out of sorts" for the rest of the day but to be back to normal tomorrow. I hope so.

Collette (Dr Jones' assistant) tells us that Wren's case will be presented at Cardiology Conference on Monday. I am looking forward to knowing what approach is proposed. For some reason, escorting Wren to the OR was comforting to me. It made the whole surgery thing seem like a very complicated job. A routine, orderly job that can be done well. I don't think I should read that book "walk on water" because it makes it seem more like television. On TV things always have to go wrong to make for a good story.

Today I am glad to be a boring story, not made for TV at all.

In Recovery, discharge around 2pm

As I indicated before, they did not do any ballooning. The obstruction is sub-aortic and supra-valvular. Dr Permut, the surgeon, did a mini-consult with Dr Lewin and Dr Jones and said a resection and patch of both areas is probably the surgery they would recommend.

The aortic valve is a few mm larger than the obstructions but may also need some "repair" during OHS.

They expect the OHS in fall - although Dr J said 6 months - I yr, Dr Lewin said sooner and both said "Fall" (independently). We have yet to see Dr L today.

Wren was very upset in recovery and they called me in to nurse and calm him. He is flushed, a bit swollen about the face but doing OK now after Josh got him to sleep. His voice is a bit raspy from intubation and he liked the popsicle and iced water.

More later, I am just rushing to get us lunch in the recovery room. Other snippets:

1) Dr Jones said that Wren's heart is under a lot of pressure and showing issues with diastolic function of the LV, still mild but hard to assess since his parachute mitral valve is causing some obstruction too (BAD). It may be mild but shows some increase in pulmonary pressures indicated blockage, mild stenosis but poor function due to leaflet tether. May need repair or work during OHS.

2) LV Pressures 150 during sedation ie 200 active. (BAD)

I better get back now. We will be getting a surgery consult in the week(s) ahead. It is strange to be back in this world. The whole "procedure" of the place is reassuring - if you have to be here at least it is routine for the professionals. Now on to the routine of mexican cheesy lunch.

PS. Ran into Izzy, Wyndi and Steven in the cafeteria. Izzy was very sweet eating bagel. We have ordered Wren applesauce, pudding and mac and cheese. I hope he has not woken yet - need some sleep before I get back.

This adds 20lbs

Wren is coming OUT! They did not do any ballooning. The obstruction is under the valve so that indicates OHS. Crap but what we expected.

Here I am dressed for surgery.

Here are Josh and Wren on the Twin Falls hike on the weekend.

Wren is in surgery

We are waiting in the Family Resource Center at Childrens. Wren went into the cath OR at 8am. The procedure should take 2 hours with 1 hour being the cath intervention and 1 hour going in and out of general anesthesia.

They allowed me to walk him into the OR and hold him until he was sedated with gas. I picked Root Beer flavor but when I kissed him bye bye the gas did not smell like root beer to me.

Nurse Amy from CICU is our nurse today. It was great to see a familiar face although everyone is a bit familiar after our last dry run.

This morning we spoke to Dr Jones regarding the likelihood of his doing the ballooning of the valve and arch. He seemed more circumspect about doing it that I had expected. He said that they will only intervene if the valve or coarc are the dominant factor in the LVOT and arch gradient. There are expected to be many components but it is not considered worth the risk of a ballooning for a minimal improvement.

He is going to call us during the procedure to let us know whether they are going ahead with a ballooning. If not, it should indicate that the sub-aortic area is the major issue.

They are also going to see whether the mitral valve is involved (terror in my heart). Surely, I hope not. The echo has not shown trouble in the past but I guess we need that confirmed.

More soon.

Tuesday, August 5, 2008

Archipelago of updates / Cath tomorrow

I have missed so many events to update on that I am about to give up on them. The main problem has been illness. Wren gave the stomach flu to Joshua and I and we have only just recovered our wits in time for Wren's cath tomorrow [we hope].

So, in brief:

1) Frost has started swimming lessons. They are half an hour daily and he needed some cajoling to get into the pool this morning. "I feel shy" he said. "All the other kids have friends here." I guess it looks like that when you see a crowd of children and you are not in the water. Afterwards, he was very proud to have done two dives on his own for the first time, in 9 foot of water.

2) After being ill, all I can stomach eating and preparing is bland food. Frost has had a number of meals of hotdog and Wren is eating lots of tortelini. Wren is at the stage where he repeats almost everything he hears, even if he has no clue what it means. In particular, the hotdog has proven a stumbling blog. He calls hotdogs "underdogs". Josh says "It is confusing that a maneuver on a swing and a long piece of meat can have the same name."

3) Much of the rest of my family was in Duban, South Africa this week at a Memorial ceremony for my Grandfather who passed away recently. He had emigrated from south Africa in old age but many of his friends and relatives remained in Swaziland and South Africa. I have yet to hear how it went but wish I could have been there.

4) It is very hot in Seattle and I am going to lie in the shade this afternoon, pack a bag for hospital, arrange a schedule for Frost while we are at Children's, pack Frost's bags and mop the house to clean up after days of sloth.

5) We went for a hike with KapKa families at Twin Falls near north bend. It was a hike we "won" at the auction and everyone enjoyed it except me when I was carrying Wren up a near vertical grade on slippery path above the waterfall (no, we were in no danger of falling in). Wren loved, L-O-V-E-D throwing pebbles into the river. Frost loved playing virtual D&D with Matthew along the path.

Naptime for Wren now.