Saturday, November 8, 2008

Heart surgery is a triathalon.

We are heading back to the hospital to see how Wren has been doing overnight. Due to the internet issues, I may not post till later when I return for a nap.

I woke at 3am when he usually wakes up and had trouble getting back to sleep. I kept worrying about the remaining gradient and wishing there had been just a bit less. Its like wearing pants a bit too tight but not having a weight-loss option. Its the "what happens next?" feeling. Having heart surgery is not something you want to do regularly.

I was also remembering Dr Lewin saying that "heart surgery is a team sport" and I was lying there adding my own. From Wren's perspective "heart surgery is an abduction by aliens". For me "its like a triathalon I haven't trained for". I feel I have been on my feet or sleeping only part of the night or day for weeks even though this is only Day 1 of recovery.

Stanford is great but they don't have very comfortable spaces for families to be with kids in CVICU. Even the "nourishment room" is like the galley on a submarine with only one or two ppl able to squeeze in.

Thanks for the info about Versed. I shall keep talking to him and singing the little songs he likes. I have now drunk my coffee and can drive safely.

Update later.

Sleeping at the house tonight

We are home now for a short night of sleep. It is very hard to leave Wren in the CVICU. We just returned from another visit and contrary to how we were told that he would be heavily sedated, he was waking up and looking around. He even tried to say "dada" through the breathing tube in his mouth.

This is very distressing. I sat with him for a long while and he fell into a deep sleep. After about 45 minutes he started moving again, kicking a bit and lifting up his head. He is obviously in discomfit from the intubation.

The nurse gave him more versed and he settled again.

We think that our voices make him more agitated but it is good to be there to soothe him as he rouses.

There is no place to rest or lie down in the CVICU. Beds are close together with little space around so I do not know how we will manage to be with Wren when he is more alert and needs our company. We both hope he can be extubated tomorrow and move onto the next stage.

When I left he was asleep. The nurse said his chest tube output was tapering from 20 per hour to only 12 in the last hour. Not sure what the units mean - CC's perhaps?

Unfortunately, my nightmare of Wren waking and feeling he has been abducted and deserted has some truth in it BUT we are trusting in the fact he is still very dopey and will not remember this (as Joshua assures me he remembers nothing of his recovery from his appendectomy).

Sleep now. Thanks for all the emails and posts.

CVICU Visit and Post-Op summary

We have just returned home from the CVICU. We are going to eat and then return to see Wren. If he is stable I will return home to sleep tonight because it might be my last good sleep for a while.

Here is a picture of Wren in his CVICU bed. He has hedgehog with him. He still has a chest tube, catheter, central line, IV's and is intubated on the ventilator. While we were there they turned down the ventilator to 80.

How is he doing?
When we saw Wren he was still completely sedated from the OR. However, he started to rouse at one point and his blood pressure and BPM rose very rapidly. The nurse was still waiting for the orders to be delivered by pharmacy (he will be on fentanyl and morphine drips overnight) so they quickly gave him IV versed and morphine and he calmed down again to the same stable pattern.

Dr Hanley said he did very well in surgery and the anesthesia attending (Dr Boltz) said he was "like a rock". She was very pleased with him - no surprises.

What is the plan?
In the ICU, the team has a plan for every shift. The plan for this shift is to keep Wren sedated and stable. If he is stable on the vent they will start to turn down his medications and vent settings in the hope of extubating him tomorrow - not too late in the day. It just depends how he does.

He is being maintained on:
Milidrone (for heart function)
Versed (short term)
And something else to help perfusion.

They are monitoring chest tube output (it was about up to the 3 or 30cc when I looked) which is still slow but steady post-op but should stop over 2 or so days.

Was the surgery a success?
Yes, it was a success BUT it was not an unqualified repair. As we expected, this less invasive option did not make it possible to get all of the stenosis in the valve. Basically, the aortic valve IS too small and although Dr Hanley opened the leaflets a bit by cutting some attachment at the base of the leaflet AND shaved the leaflets where they had thickened a mild-moderate gradient remains.

In my previous post I said that Dr H would leave the repair if the gradient was <35. Well, it was 34. He says that it may come down a bit post-op but it will go up again over time as scarring develops. He hopes to make it till Wren is 7 or 8 when he should be able to fit a large enough valve to last till adulthood. His view is that you want a Kono to be the final valve replacement if at all possible - taking down konos is risky and complex.

So, we are relieved he has his valve and has a chance to do very well for years BUT of course we are anxious about the progression of gradient from mild-mod to MODERATE to SEVERE. Before surgery Wren's gradient was 75+ and classed as severe.

The other interesting comment was that while the patch above the valve was very straightforward, the sub-aortic tissue was very complex. It was dense, fibrous, scarred and extremely tight. It extended to the mitral valve and was attached to it.

Dr Hanley had to remove quite a lot of tissue in the resection to get at the obstruction.

However, he was pleased to see that both valves work well even though they are not normal anatomy. His mitral valve is only mildly parachute and his aortic valve is good for a bicuspid. He went so far as to say that IF the subaortic obstruction recurs in 2-3 years he would recommend a repeat opening of the valve and LVOT - perhaps being more aggressive in treatment of the AV.

This time, he achieved satisfactory improvement without regurg. He explained that when you work on a valve you have to balance leakage and constriction. If you do too much work to address constriction, you get leakage. If you have too much leakage you have to constrict the valve. In this case, there was no leakage immediately post-op.

Now, to dinner
Josh is serving spaghetti. Meanwhile, you can look at these two pictures of Wren dragging his animals around during the 5 hour wait AND the new LPCH train track.

OLD POST - While waiting (network died)

We spoke with Dr Hanley a short while ago and are now sitting in the hospital roof gardens. Joshua is trying to sleep on a low wall and wishes we had packed a pillow. The hospital is very very busy - all the seats in the pre-op waiting area, the CVICU waiting area and even some halls are full of families waiting. Its hard to find a spot to camp but we may try the parent room near the PICU later.

Dr Hanley was very reassuring. While we waited for him he told a huge family gathering (grannies, pink-eyed mother, couples clutching each other in worry and relief) that their daughter's valve replacement had been a great success and that the valve should last her at least 10 years. She was finished in the OR but they were holding her a bit while they 'finished up' so that the staff in the CVICU had time to clean the room.

The 3 hour delay Wren faced was due to the CVICU to Ward room shuffle. In the end our anesthesiologist got involved and an administrator and the rooms are moving.

What Dr Hanley Said
Dr Hanley said their plan is to save the valve and do the sub and supra valvar resections. He was very pleased with Wren's MRI yesterday. Apparently they had expected some of this EFE (scarring) which indicates more serious damage to the ventricle. They were very pleased to see none.

He feels that saving the valve is the best path for now because a valve replacement of any kind is a much more major surgery - doing the kono to insert the valve.

IF it is needed he will put in either a mechanical or a pig valve. PIG VALVE???? you say? Didn't you exclude that option? Apparently not.

Dr Hanley feels that at Wren's age they have to balance the years before reoperation with each option. The mechanical is usually good for 10+ years at Wren's age - requiring replacement at the growth spurt of puberty. The pig valve may last 5-10 years, depending on metabolism. The pig valve does not require Coumadin. The mechanical does. So, which is better depends on a bit of a judgment call. Of course, no Coumadin is better but a re-operation in 5 versus 10 years is not good either.

So, we are going to wait and see "Wren's anatomy".

Wren was taken into the OR around noon. Dr Hanley's part of a the resection and repair surgery takes 2-2.5 hours. Then he will come off bypass and they will test the repair with echo and cath/pressures. IF the gradient is <30-35 then surgery is over and he is closed and brought out of the OR within an hour or so. We may hear from Dr Hanley around 4.30pm.


If the valve repair does not work or looks problematic, he will let us know he is doing the replacement. That is a more 'major' surgery and takes lots longer. We will know if that happens - again, around 4pm.

Josh and I are rather jet lagged. We have been up since 5am and did not sleep very well. We didn't eat or drink this AM (grabbed a coffee and a bit of day-old bun while Wren slept) so by 12.30pm we were woozy. We have now eaten and I think I may head down for something sweet before reading my book to pass the time. By the way, for you Californians, I really like the weather here. The sky is brilliant blue, its in the high 60's and everything is bright and flowery. People speak another language (spanish) and I feel as if I am on one of the medical tourist tours to India. Even Whole Foods has different products.

Omens and Anecdotes
Having your kid in surgery can drive you loopy. This morning I was wary of omens. Joshua said that the fact Obama won is a GOOD omen. Here are other signs I have tried not to get excited about:
* I saw a BLACK squirrel. Josh googled it and there is a colony of black squirrels here. Wren loves squirrels but black is ominous. Is the black squirrel good or bad?
* I couldn't find hedghog puppet in the morning. Wren loves Hedgehog. Josh said we should go without hedgehog but that would have been bad so I hunted and found him. Hedgehog is in the OR too.
* The PACU are all excited because one of the nurses son is called Ren (with an R).
* During the long wait Wren drove his stuffed animals around in a red wagon. GEE-raaf, Untent, edge-og, KApi and Big animal enjoyed seeing the train and helping save tiny snails in the graden.
* The train on Level 1 has been replaced by a NEW train with lots of buttons to press that make horns, bells, announcements and lights flash.

That Surgery Soap
Some of you have asked whether we received that soap to wash Wren in the night before surgery. Yes, it was not fun. He did not like bathing in a strange and slippery bath. He cried. The instructions are to rub the soap into the body from neck down and then scrub/lather for 5 minutes. I think I managed three minutes. Wren did not like it and I didn't want to upset him because he was quite grumpy after anesthesia yesterday.

Now, getting coffee.

Thanks so much for all the comments and emails of support. It means a lot to know so many people care about Wren and us and are sending prayers and pretty-thoughts to us. I am sure they help.

4pm. - Wren is OUT in recovery

Anne - Good news: Wren is in recovery, off bypass, and Shannon and Josh will be able to visit him in an hour. He will be strongly sedated for the next 24 hrs - and intubated. He will be "brought round" some time tomorrow afternoon.

The surgery went WELL. Dr Handley did the repair below and above the valve. (did not have to call for a replacement valve).

The coarctation below was "very tight" and they had to do a lot of cutting there as it was attached to the mitral valve. But he says that the mitral valve looks to be in good shape (VERY good news).

The aortic valve seems OK and there is NO regurgitation.
So Shannon and Josh and all of us who have been on tenterhooks are very relieved.

Waiting to hear more

We spoke with Dr Hanley earlier and I wrote a long post about it BUT THEN THE NETWORK CRASHED and it is now stuck. I have now discovered a library where there is another network.

So, quickly.

We are doing OK, waiting. We expect to hear how the surgery is going when Dr Hanley has done the planned repair (resection) of the sub and supra valvar obstruction.

IF NOT, he may tell us that he is going to have to do the valve replacement. He hopes that does not happen because it is a major - well, more major - surgery and would add hours to the procedure.

We hope the first approach is successful.

I have found a resource center, a library, some chairs you can sleep in and free coffee.

Thank you for all your emails.

The librarian says the internet service provider is going to "send a technician" but she doubts they come on the weekend. That means we will have to post a bit less frequently than I had hoped.

2pm - We wait

Anne - Shannon phoned to say that they met Dr. Hanley and he has told them that around 4.30pm he will be able to let them know if the valve-saving option is possible. If not, he will proceed with the alternatives, valve replacement, which means a longer time in surgery.

12 midday - Wren is in Surgery

Anne - Shannon rang - Wren is now in surgery. It's been a long wait for the goahead.
Shortly, while Wren is with the anaesthetist, Shannon & Josh will meet Dr Hanley, the surgeon.

Then another wait, we think the surgery will take about 6 hrs.
Wait and pray...

10.45 - the waiting game

by Anne....
Shannon phoned to say, that at 10.30, they were still waiting. They had been told that Wren would be taken into surgery at 10.

Meanwhile, Wren is very hungry since he has not eaten or drunk anything since 3am. He has fallen asleep on Joshua, so we hope he has a rest and that he will be admitted soon.

Wren - surgery going ahead at 10am

posted by Anne (granny)

8am. Shannon phoned from the Lucille Packard Hospital a few minutes ago. They are waiting for Wren to be taken into surgery as the heart team are finishing the first case. The good news is that the hospital do have a room available for Wren post surgery and so they can go ahead. Shannon said that it was apparent from the tests conducted yesterday that Wren really did need this surgery.

Meanwhile Wren is rather fed up with being short of food (since 4am). Shannon has found a distraction for him - he found some small snails, "nunnus" in Zulu and Wren language, in the courtyard.

They have about another hour to wait.
We will wait and hope for good news later in the day.

9am Latest update - Wren will go into pre-op area with Shannon & Josh at 9.30 - with the operation to start at 10am.

From rainy Seattle

Friday, November 7, 2008

Pre-Ops Complete - 9am tomorrow

We have recently returned to the house from the hospital. It was a very long day and we have learned a great deal about the hospital. The only thing we failed to complete was the urine sample!

Wren had an EKG, echo, 5cc's of blood drawn (while sedated), clinic vitals and an MRI. The MRI took 2 hours and was the most invasive procedure. For sedation, Wren received versed which made him relaxed and conversational. He did not get very upset when they put the mask on him to put him under.

The goal of the MRI was to explore his heart function - the LV in particular. Since he had never had an MRI we were interested to see what was learned. There was some good news - Wren's LV has no EFE. Endocardial fibroelastosis can be seen on MRI as a white lining to the LV. That there is none is good!

We spoke with Hanson Quan, one of Dr Hanley's PAs. He obtained consent for surgery and told us that Wren is scheduled as second case, running partly concurrent with the first case which will overlap in the neighboring OR. He confirmed what many of you have told us, that there is a likelihood of getting delayed if a bed is not available in the CVICU (or if there is not ward room for a child being released from CVICU). However, based on current bed movement they are optimistic that Wren's case will go ahead tomorrow. A delay of a few hours is not uncommon and the anesthesia ppl were discussing leaving in the foot port access to rehydrate him if there is a delay. They decided it was too complicated and removed it to Wren's great joy.

Surgery Plan
Tomorrow the plan is for a 7am check in for a 9am case. Anesthesia and stuff would happen first so we may release him to the OR as early as an hour before.

We also discussed the surgery with Dr Quan. He said it is expected to last 6 hours from first anesthesia to recovery. He would expect Wren to remain sedated for 24 hours but be extubated around that time (or perhaps within first 24).

He explained that there had been a long discussion about Wren's case at their cardiology conference the week before. The discussion had been about the benefits of a single ventricle anatomy (if mitral valve failed) or a valve replacement if the aortic valve was poorer than hoped.

They also discussed the Ross-Kono and we repeated our concerns.

The plan NOW is to do the sub and supra valvar repairs as well as enlarge the aortic valve if possible.

The expectation is that valve repair will result in some aortic valve regurgitation. This lets some blood flow back into the LV and over time leads to left ventricle distension (enlargement). Currently, the LV is thick and muscular. However, Wren will have to be watched to see whether this regurg is manageable or is damaging his heart further to the point of needing more surgery.

The next surgery could be a valve replacement or "tweaking". But the goal is to get him years out of this procedure and they are quite hopeful of it being a success. The idea being that if he is quite a bit older when he needs a valve replacement he may be able to have an adult size valve.

We can but hope.

How is Wren Doing?
Wren is grumpy and upset at the hospital. He kept saying he wanted to go home and was scared (particularly at the echo). He did not like having no milk and said he wanted more milk NOW many times.

I am looking forward to him being in recovery, stable, being made comfortable so I don't have to think of putting him through this again any time soon.

Thursday, November 6, 2008

Flight of the Hedgehogs

I wanted to post these few pictures of our flight today. Wren was very excited at the airport and kept wanting to get down and rub his hands on things. I think I went through half a bottle of Purell just getting him on the plane and then I sat down to read my magazine (Mother Jones) and it had a two page article on the perils and evils and mass-marketing of germ-hysteria. I consider myself a special case at the moment (sticking bacitracin up your nose puts you in a class by yourself, right?) so I continued to use my poisonous wipes and potions but I did check the ingredients against the most carcinogenic components.

Here, Granny holds Wren before we head through the security checkpoints. It took ages to get through because we had so much stuff with the stroller, carseat and both our laptops as well as the usual travel luggage for a toddler.

When we were on the plane and the engines fired up, Wren became very sad. He said "very scared. Too noisy. All gone. GET OFF" Thankfully we distracted him with grapes and hedgehog and he fell asleep as soon as we leveled off (thanks to some baby-whispering by Josh).

He enjoyed the rest of the flight although the decent through clouds worried him. I drank an entire can of tomato juice (a big one) and I thought how much Frost would enjoy being able to order a soda when he comes to join us.

Over the last week, Mum has influenced me to drink a lot of tea. Tea=having a break so it has been fun to have tea-parties with the boys, sitting at table with nice cups and a cookie each. Both boys have been drinking tea but Wren really loves it and enjoys holding his precious china cup himself and saying "more tea??" after his first cup.

I spoke with Suzie (Seattle mom at LPCH) and she mentioned that many families at RMH had faced a surgery delay of a few days. I know this is possible but I am dreading that awful countdown where you wonder if its going ahead and what will happen if it does OR if it doesn't. I guess we are heading towards the precipice and we have done all we can for things to go well.

Bacitracin tastes bad in the nose

Our flights were uneventful which is always a good thing. Uneventful+flight. YES! We even arrived in San Jose early.

We have checked into the Stanford Inn for one night and hope to arrange our housesitting plan this evening. We have even been offered the car!

Meanwhile we are lugging huge amounts of luggage [why did I think Wren needed all his toys?]

I have left a message to speak to our 'contact' through SeattleCHD support group but right now we are going out to eat a Fish Taco. According to Josh, tacos in California are better than elsewhere!

I put bacitracin in my nostrils during our flight. According to a link sent by a friend, this helps avoid airborne infection. Yuck. The stuff still smells bad - like a petrochemical leak! I sure hope it was effective for the yucky smell/taste.

Wednesday, November 5, 2008

Thursday schedule

This afternoon I spoke with a PA at Stanford about Wren's pre-op appointments. I learned that he will be having an MRI on Thursday morning. He will not be able to eat solids after midnight or nurse between 7am and the sedation at 10am. Here is our schedule:

7.15am Registration and admitting
7.30am Clinic
8.30am Echo and EKG
10.00am MRI Check-in for sedation
10.30am MRI
11.30am Consultation

I think there will be an X-ray done at some point as well as a blood draw. Perhaps they can do those while he is sedated. We will learn more on Thursday.

Meanwhile, plans for non-hotel accommodation are looking extremely hopeful. When we arrive on Wednesday, we are going to meet a Stanford family who will be away for much of November. Through a friend of our neighbors, they have kindly offered to let us stay in their home on campus. This seems so wonderful that I am unable to believe it but they have said we can come over Wednesday PM to learn the ropes.

Josephine, the facilitator of our local CHD support group, has put me in touch with another Seattle family who have been down at Stanford for a month. Their newborn preemie (twin) who had an interrupted aortic arch repaired. They are being discharged on Thursday but I hope to speak with them and get advice to make our stay easier.

Yes, I have a new cellphone with the same number

In case you wondered. I never found the other one. I may not have your number in my cell yet (or ever again if I have lost the original) but you are welcome to call ME!

Almost ready

Its Tuesday - Election Day of course - and the last day I have for packing before we leave for Stanford & surgery. Since Mum arrived last week we have been very busy and the days have flown by.

I hope to have time to post a few pictures tonight but my desk is overflowing with documents and bills which have to be resolved before we leave, or worse, remembered in order to get on the plane.

Wren has not been helping. He has not adjusted to daylight saving and so is waking at 4.30am for the day. I keep the room dark for half an hour or so but it is a very early day and means you will not catch me up at 10pm.

So, here are a few details:

1) We leave tomorrow mid-morning. Our flight is at noon.
1B!) Frost will be in school on Wednesday as 'usual' as can be.
2) We will be spending Wednesday and Thursday night in a hotel but there is a chance (still unconfirmed) that we may be able to stay a few weeks at a friend's friends home on campus. We shall know more later.
3) Wren has a pre-op day full of appointments on Thursday 6th. We check in for the first appointment at 7.30am. He has X-ray, echo, EKG, anesthesia consult, blood draw, we meet Dr Hanleys PA and we see the lactation consultant. We will be told his surgery TIME if all goes well.
4) During surgery and recovery we may or may not have cellphones on. We will wait in the family waiting room of the cardiac unit (according to the pamphlet!) It should have internet connectivity but we can also be called via the waiting room phone: 650 498-2135.
5) We have been told that we may NOT receive updates during surgery so do not become fearful if we do not post progress reports. We will post as soon as we know anything and have a minute :) I may call and ask someone else to post and update for me.
6) Frost is staying in Seattle with Granny for at least a week. They may fly down next Thursday.

What do we need? Many of you have kindly offered help and assistance. I apologise if I have not returned calls. I am overwhelmed with everything. Here are some things we need:

1) IF Frost and Granny come down to Palo Alto they would appreciate a ride to the airport. We seem to be throwing money at everything recently and this would help. Driving our car is an option.
2) While FROST & Granny are away from 14th perhaps - we will need help feeding and visiting the cats.
3) Frost might like some playdates - the DON'T GET SICK thing still applies but is less urgent. IF Frost is sick he will not be able to visit Wren and will put Wren at risk of developing a cold during recovery.
4) Food: it would be great to have some frozen dinners delivered in the next week. Mum is trying to cook up some dinners to have on hand for when we return but I know that it would be lovely to have a few extras and not put it all on her plate (pun intended!)
5) Frost has never been away from both parents for more than one night. Please be supportive of him and give him a bit of extra TLC. He is quite comfortable at home and is not showing signs of anxiety but likes to play toddler games and is being a real dork after a week off school and playdates. I suspect he is bored and wants more attention!

THANKS So much to those who have dropped or mailed toys and gifts for Wren. I am going to email you personally but I just wanted to say that Okapi and Hedgehog will be making the journey with us and are already much beloved. Okapi is snuggled by Wren while Hedgehog seems to like extreme sports and to make Wren giggle like a