Woah, Tiger

The moment Wren arrived home he started rushing around. He is still wobbly on his feet and tender if he makes upward motions with his arms. He is very afraid when I take off his clothes (expecting pokes and tape removal?) and cries "all done".

Still, without all the bloody punctures, bruises, rashes from tape, incisions and the black stitch in his belly - you wouldn't know he was on a monitor in bed this morning. He walked around the garden, ran up and down the corridor, arranged all his toys, walked to the playground next door and ate two meals at table. It was very hard to get him to nap and he was so joyful at the idea of icecream for desert that he opened the carton himself and walked around licking it. Nobody stopped him.

Here he is in the garden receiving some special attention:



After I put him to bed we were talking about ways to keep him quiet tomorrow. We think we may have to let him watch some DVDs that he liked in hospital - like Big Bird in Japan and some Bob the Builder episodes. We can only read so many books and it is so wonderfully warm that you need a real alternative to running around the yard. However, according to the discharge papers, the patient should relax and rest for the first two weeks home. Hrmm.

We have been reading the hospitalization summary that we were given for our cardiologist. It just makes me mad. Its not anything particularly worrying - I mean, there are a few nuggets that make me a bit sad, like the fact he had a big thymus (indicating it was still busy building immunity and that it has been stored as a specimen after surgery. Can they DO that? Keep a bit of him in a bottle?). Also, there are so many numbers about gradient and peak gradient, and they vary so much, that I don't know what to think.

The thing that makes me mad is that the whole concern and explanation of the ST-elevations is laid out there in black and white but nobody would share that information with us. The concern was that Wren had a high level of Triponon post-op AND ST-segment elevations. The elevations persisted off and on on subsequent echos but the Triponon went to zero. The latest EKG was much better. So, there was some event in recovery and they were following it in recovery. It took ages for us to get that information and only through overhearing bedside conversations. This is just one example. I think I will do it differently next time.

[And I will definitely bring my own high quality bubble mixture. Cheap bubble mixture is just frustrating.]

Here are Frost and Joshua riding home from the Papua New Guinea grove and the Rodin Sculpture Park yesterday afternoon.

Andrea, your comment..

reminded me. While walking around 3 West I saw this photo of Drew on the notice board!



We are home! We have been playing in the garden. Unbelievable.

Brief update

Spend any significant time in a hospital and you'll get used to 'hospital time'.  If some procedure or appointment is scheduled to take 10 minutes, it'll take half an hour, you'll spend an hour beforehand in the waiting room, and you'll spend the next 45 minutes waiting for results.  If you're schedule for something at 10, it'll happen at 2.  Hospitals eat time like candy.

In comparison, getting discharged was a flurry.  The Nurse Practitioner took a stethoscope to him and signed off, half an hour later the cardiac team took a stethoscope to him and signed off, the nurse ran me through the post-discharge instructions in 2 minutes, I signed a few forms, picked up some documentation, and next thing I knew we were sitting in the car driving away from the hospital with all of Wren's balloons, blankets, and diggers stuffed in the back.

Shannon will have another update with some pictures once Wren is down to nap.

They made it home but Wren is too excited to nap. He is wobbly on his feet and enjoying playing animals and reading his new book, a gift from Frost's school friends. Frost is reading to him. Everyone is having a hard time believing the discharge instructions: no wrestling, rough-housing or activities that risk a chest injury for 3-6 months.

The Countdown to Discharge

Wow, things are really speeding up. I have left Josh at the hospital and we are all systems go for discharge. So far:

1) Peeing is resolved! It has been decided that it was a mixture of not enough fluid intake, slower response and lower dose of oral lasix. I think my drawing for Wren, invoking "Wren peeing" was also instrumental. It is Mommy going "hooray" when he pees.


2) EKG, X-ray, labs, echo were all good. The only fear in my gut is the old "how long will this repair last" question. His median gradient on the latest echo was 30 and peak was 60. SIXTY? I asked. They said it was that post-operatively too and probably varies a bit depending on how agitated Wren is. They feel that the median is fine in the moderate range.

3) ST Elevations on echo, much improved.

4) Lines and dressings are all off! No monitoring and no covered wounds. His chest incision is still covered by that invisible glue stuff but his chest tube stitch an hole are exposed.

4) He is in a fabulous mood, laughing, standing up and getting into mischief. Before the lines came out he was able to fix his toe pulsox himself by squeezing it and was using the respiration monitor leads as a puzzle "I take it out. Put it in. I DO IT!"


Last night we spent an hour and a half in the playroom. Wren was dressed for the first time since surgery (it makes him feel much better and safer) and I pulled out the leads because they kept alarming.

Pee Anxiety

The pee issue continues. Wren received lasix (PO) at 8pm last night but has not yet pee'ed more than 7g.

I keep poking his diaper anxiously but it remains crackly. (Oh, for a nice soggy warm bag of pee.)

Current theories are:
1) He needs more time to respond to oral lasix.
2) Not getting enough fluid.
3) He is hiding it somewhere.

His weight is normal (12.1kg) so perhaps he was hyper-inflated before.

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.

Joyful urination

This recovery stuff can drive you crazy. Today, Wren has been happy and there was lots of progress [pacer wires out. Last IV out] but there are still issues. The main one is Wren's rising anxiety about any contact with doctors and nurses. When someone comes to examine him, he flinches and cries. He says "No" and pushes their hands away. Sometimes I can distract him but if its anything to do with tape or stickers he is very afraid.

I sometimes think that the tape they stick to the kids and then wrench off (leaving red welts) is worse than the pokes. The blood pressure monitor is also a great trauma.

Thankfully, we are still on track for discharge tomorrow. The time of 10am has been mentioned!

I think the only obvious hurdle is Wren's belly. Although the chest tube has been removed his left lower abdomen is still very swollen. Also, today he failed to pass the lasix-pee-a-gallon test. He received his usual dose but didn't pee. The nurse noticed he hasn't pee'ed much during the day and certainly less than he usually does. She said not to make an issue about it because "sometimes the kids hold on because its the thing they can control. The more fuss we make about it the more he knows something is going on." Now, I am not sure Wren is holding on out of anxious control, but I want him to pee. Its one of those humps of anxiety from which I would rise in hallelujahs for a poop and a bit of urination.

Anyway, Wren recently made his first pee since afternoon and it was an average one. I am relieved but want more. I want waterfalls. I want a generous stinky diaper. Oh, the point this crazy business brings me to.

Echo, wagon rides and the pox

During Wren's full post-op echo this morning I was able to see the outflow tract area for the first time. It is amazing! Where there was a huge protrubance there is now... nothing! It looks like a big hosepipe. Its clear from the echo that Wren's whole LVOT and valve is smaller in diameter than the ascending aorta. I am not sure if that is 'normal' but it makes sense that for no gradient they would be close in size. Still, there was definitely less churn on the flow images.

We wait for the official readings of gradient and anatomy.

Chickenpox
Meanwhile, we are unsure whether Frost will be able to visit Wren since a boy at his school has been diagnosed with chickenpox. He is not in Frost's work group but they are in contact at times during the day. Frost has been vaccinated but (I just checked with his pediatrician) and Wren has not. I don't know why Wren has missed that shot since we try and keep up with all of them.

Sigh.

Wren is not on aspirin therapy so I hope there would not be complications in the unlikely case that he caught it from Frost or that Frost caught it too.

Frost wants to go to see Wren but while the nurse said it would be fine, the clerk said that they do not recommend visits for 3 weeks post-exposure. I am not sure how to read "recommend". Apparently, contagion is highest in the days prior to blistering but commonly breaks out 7-14 days later.

Wagoneering
We have been given a telemetry monitor and Wren has been on many circuits of the 3rd floor. He went "off monitor" to the echo lab! The battery in my camera was flat so I didn't get a shot but will later. It was very cute.

Thymus Lives

Post-op, I forgot to ask whether all or just part of Wren's thymus was removed. Thymus removal is necessary to access the heart. In children under-3 the thymus contributes T-cells but shrinks from a large organ to a very tiny one in an older toddler. Its removal is one of those things that surgeons and cardiologists generally dismiss as inconsequential but parents, and some recent studies, associate with lowered immunity in their heart kids.

I am pleased Wren has had the benefits of his thymus for so long but wasn't happy about it going away so I am happy to report that when the nurse looked up the OR notes for me it said "sub-total" removal of thymus.

That means there is still a bit left!

We are all well this morning. Mum arrived last night and we ate late so I am a bit extra tired this morning. Its supposed to be a hot day but not yet. The moon was full in the dark when I left and I was concerned to see a crumpled bicycle on the road on the way in. I checked but there wasn't anyone around. I had been thinking of cycling without a light and felt vindicated in taking the car.

More on that EKG issue

I spoke to the NP about Wren's EKG concerns and learned that they had done another EKG this afternoon. We are waiting for the Felllow and Attending to look at it and discuss.

She said that they are not very concerned about it but are watching it and hope it resolves. If it is a long term issue they may look at it in more depth. For now, they continue to monitor blood levels of troponin I. In my limited understanding, this gives an indication of whether the cells in Wren's heart are doing ok or are distressed (not receiving the blood they need). Even post-operatively - when his EKG was most 'funky' - his Troponin levels and other indicators of stress were normal. This is very reassuring.

The chest tube is out! Wren did very well and received some morphine to help with it. Unfortunately, due to a mix-up, they did not take out the pacer wires. Hanson came up to do it but the NP didn't run into him and so he drifted off.

People seem to spend a lot of time paging people on other teams and then waiting for them, missing them, repaging them. Everyone is busy and the small chances of meeting seldom co-incide. In fact, the X-ray tech and the nurses just had a fight while the surgical fellow was removing Wren's chest tube. She had come at the same time as the Fellow and he asked her to wait till he had removed the tube (because he needed a post-removal shot). The NP had asked for an x-ray of the emphysema in his abdomen.

The X-ray tech complained she had come back three times. The nurse blamed her for not waiting. Hansen Quan melted away. The NP was in the bathroom. ARGH!!! After the fight a new X-Ray tech came, in better humor.

Coming soon
Frost and Granny should be taking off from Seattle soon. Whoopee.

Packing List for Hospital & Stanford College Fund?

I have been riding the bicycle too and from the hospital today. It is a brilliant blue-skied afternoon with hundreds of students out on their bicycles. The lime tree has fruit on it and the tomatoes are still ripening in the garden. Its a very beautiful time of year and hot, despite the autumn colours and other signs of fall.

On the way home I was plotting about who I can send to Stanford. I know that advocacy is important for teenagers and its a way off for Frost but perhaps we better get his college fund started. I am all for sending him to Stanford. Then there is my sister in Australia. She is a very bright young thing and mature for her age. I can see her at Stanford doing medicine although it might be difficult for her to get into a medical program in South Africa due to the affirmative action policy to meet the needs of people of color who were excluded under apartheid. I shall have to plot on that count as well.

Even if I can't be a Stanford Graduate, I shall be one by proxy!

And I am going to buy a mug :)

Meanwhile, I was thinking about the objects that are most useful during our stay. Here they are:

1) A book you really like reading.
2) A cellphone.
3) A small portable laptop (my 17" is too heavy).
4) Transport (bicycle or car).
5) Layers with pockets (sweater or vest because hospital rooms vary so much).
6) Tape. I have used my tape many times to stick up things at Wren's bedside.
7) A stack of family photos. Wren returns again and again to look at pictures of him and the family doing things he loves.
8) A phone list or phone numbers in your phone.
9) A very small camera (my brother gave me his old tiny one and I would not have any of these pictures without it.)
10) A pen and notepad. To job questions and notes about rounds.
11) A decision to disregard for many small amounts of money (you can't feel guilty about buying carrot cake when you have been on your feet for 8 hours and are chewing off your fingernails.)

A day on the floor

Josh called me in the late morning to say there had been a big glitch. I felt my adrenaline start running until he explained that Wren had been woken after a 20 minute by the Nurse Practitioner doing her exam. Argh. I explained that was an inconvenience not a glitch!

Progress after Rounds
We had rounds a short while ago. They were uneventful. Basically, we measure how Wren is doing on two levels. The first is how is he doing in his recovery from surgery? He is doing very very well. His chest tube will be removed as soon as Hansen Quan is available and his last IV soon afterwards. Then he can take trips in the red wagon and will be on track for his Friday discharge.

The second level is "how is Wren's repair?" For me, that means how is his LV performing - what are the gradients, how is his EKG and how long will this last. The end part will have to wait but for now everyone seems pleased but still asking questions. The main question is the variability in Wren's EKG. Post-operatively it looked better than pre-op but still showed some "ST Elevations". These were reduced the next day and the Fellow commented that she was pleased it improved but concerned that the improvement meant that the previous day was not his baseline. Todays' EKG looked like the first - spurring talk of a repeat EKG on the 14th and concern about what is the cause. For those like me who have to google "ST elevation" - the most common cause is not getting enough blood to a region of the heart, as in a heart attack. So, its bad. But nobody is talking to us about it so I am seeking answers.

The Hospital as Factory. The Parent as Customer
So, I am very very pleased with the quality of care Wren is getting here but, as in every inpatient experience, I have two big complaints:
1) There is no single person who seems responsible for the patient's care. It gets passed along like a car down a production line.
2) Secondly, while everyone is respectful and regards our opinions seriously - there is no daily update given to parents. It feels as if we bought a car from a fabulous showroom and once the car was purchased [surgery] we were sent to the factory by mistake to watch it being produced and all the way along everyone thinks they are doing their job if the car is being made right. We don't need to keep the customer informed. We're busy.

But I would like to receive a daily update on Wren's progress, issues and concerns rather than have to enter the scrum of rounds to find it. I would like to have more than the most cursory nod to say "he is doing well." I would like someone to talk about the implications of ST elevations and to give me a picture of the pre-v-post operative picture. Are the concerns that something occured intra-operatively or during recovery? Is the concern that Wren's coronary artery is not receiving full flow due to some obstruction to flow in the aortic valve area or is it a legacy of prior obstruction? How long do ST Elevations persist? Nobody is answering the door.

I told the nurse I wanted to speak with a cardiology fellow and she suggested the NP. I suggested the cardiology fellow. She looked fed up. I said that I would at least like to speak to a cardiology fellow BEFORE we are discharged. I now imagine taking a stand and refusing to relinquish the bed until someone answers my questions.

Messing with Stuff
Wren wants to get up and go home. He has started messing with his lines, tubes and monitors. He sticks his feet through the bars of the crib and says "that me! That Me1" He pulls off the puls-oximeter every 10 minutes and says "I done it!" He is just bored and so am I. Plus, our room is super hot with a west facing window. If you hadn't heard, we are facing a mini-heatwave in CA with temps in the 70s today and 80 tomorrow!

He also sucks and chews on the cable to his heart-rate monitor and kicks the wires with his feet.

He calls "Want to get down now! Want to getting down. NOOOW.

Etcetera
And then there are some things that make me laugh. There was the sign in the PACU that I have been wanting to write about for days. It is a notice to staff "WHAT TO DO IF AN ADULT COLLAPSES IN THE PACU." Apparently, if an adult collapses or codes in the PACU they are screwed. The fine print notes that LPCH does not respond to adult emergencies and that Stanford Medical Center does not respond to emergencies at LPCH. I guess your only hope is that there is some kind of external medical team - paramedics - who can help and then transport you to the Stanford side. There were some suggestions about what staff should do to handle things in the meantime.

Another thing I'd noted is that women greatly outnumber men among medical personnel. Yesterday and the day before we had groups of 9 women rounding - everyone from Attending to fellows to residents were female. Echo techs: female. X-rays: female. Nurses: female.

However, there are men out there somewhere because half of the nurses are pregnant. A nurse told me that people often ask if there are many matches made at the hospital. She said it was rare because women favored pediatrics and so there was an inherent shortage of men in the hospital. In addition, the men who came were usually married (she speculated they were the nice, caring, family type!)

Its a great pity because never before have I seen so many gorgeous, divine, young, pretty nurses. Its like a Baywatch Hospital Edition. Blue scrubs and blonde pony-tales every which way just not plunging into the ocean. According to one nurse we spoke with, nurses like this hospital because its good and has great weather. A number of nurses come from the East Coast or Chicago to work here.

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.

New digs

Wren has been moved into his new temporary home.  It's in the Intermediate ICU, meaning that the nurses are in the room with the patients.  Wren doesn't actually need this; it's just the only bed that was available.  The bad news is that this means they might move him again when a normal floor room becomes available, but the good news is that Shannon and I don't feel we're obligated to have at least one of us in the room at all times so he doesn't wake up alone.

The room is quite an upgrade.  There's a bathroom en suite, so we don't have to climb the stairs to another floor anymore.  The incessant beeping of the monitors is gone, and he's upgraded from a VHS player to a DVD.  Maybe his next room will have Blu-Ray.  There's also a recliner next to his bed.

Most of his tethers are gone.  The lines in his neck and his right arm are out, and the line in his left arm isn't attached to a drip.  He just has the wires to the electrodes monitoring his heart rate and breathing, the wire to the pulseox on his toe, and the big impediment: his chest tube.  Those are all long enough that (as long as we're careful) we can pick him up out of bed.  Shannon held him in the recliner while we fed him dinner (a smorgasbord of mac n' cheese, broccoli, green beans, sprite, chocolate pudding, and lemonade). 

 We're hoping to get the chest tube out early tomorrow.  There's been a bit of a mixup in the record keeping.  Apparently in the ICU they monitor his tube output in a hand ledger, and there was an arithmetic error along the way that made it seem his output was much, much larger than it really was.  Shannon and I were sure there had been almost nothing out of it recently, but they were claiming he'd put out 40ccs, which was nonsense.  They found the error, and solved it by putting a negative entry in to square it, but that just confused the next shift of nurses on the floor and now they're still screwed up in the count.  I'm convinced that if they had the numbers right he would have had the tube out today.  It's minor compared to all of the other things that can go wrong in recovery, but the chest tube is my least favorite of his leashes and I'm looking forward to it going away.

Shannon took many pictures of Wren in his new room, but somewhere along the way he poked the camera too hard and the memory stick came loose, so none of the pictures were ever saved.  You'll have to take my word that they were adorable.

[Edited by Shannon to say:] Actually, I didn't know they put in a negative number. I thought they just figured out the error BUT tonight they told me he had put out 140CC (not 40!!!) in 24 hours which is what he did on the very first day post-operatively. I think that he really did 40CC in the 24 hours before morning rounds but almost nothing today. I asked the nurse to check it and work out the true number.]

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.

Improvements in Mood & Wren

I returned in time for rounding at Wren's bedside. Here are the highlights:

1) Arterial line & central lines can come out. [Was TAKEN out at 11am]
2) Chest tube needs to be watched another day. Output was 40CC in 24 hours, none in past 12 hours.
3) X-ray looks good.
4) Echo looked good (peak flow was 40, mean was 24). Suboartic repair looked clear but there was a very small flap of tissue. No obstruction.
5) Aortic valve showed no regurgitation.
6) Mitral valve looks stable. Still has about 9mm gradient as it was pre-operatively.
7) Wren is cleared to go to the floor TODAY but probably won't move today due to backups on the ward.
8) In the BEST case scenario Wren could be discharged on Thursday! Yes, you read it right - 7 days after surgery.

This is all speculation, of course. It may take longer and on hospital time it usually does. The earliest we would fly home is Monday morning but it is still very encouraging to think that things could move that fast.

Joshua is keen to take Wren on a roll in the red wagon but we would still have to take the IV pole with us for a little while. They still have him on a drip and IV lasix.

The only negative is that the chest tube crepitition (whatever the spelling) is still there, if a bit reduced. It is tender around the chest tube site and still crunchy. We are still weighing diapers and estimating how much juice he sucks or how much chocolate milk he gets with his cheerios. Yes, chocolate milk - I forgot to order the regular milk with his breakfast and there was only chocolate milk in the nourishment room fridge.

I am having early lunch (after shopping at the local Safeway which is awfully pricey) and will go back to see Wren shortly.

Love you all and thanks so much for the messages and support. I could not start to think of all the people I need to reply to.

Quick morning check in

Wren has had a great morning so far. He woke at 5.30am just after I arrived and was happy to find me able to give "muk". We watched the Wiggles and danced the Monkey (waving his hands over his head).

Wren loves the new monkey (a Curious George stuffie he was given by Child Life yesterday). He also has a new blanket.

I am sure that many of you heart families will share my gratitude to those nameless and faceless women who knit blankets and sew quilts for children in hospital. I have a beautiful collection of little quilts from Wren's various hospitalizations. This one is yellow (the quilt) but the snuggly blanket he was given the first night is also beautiful. I remember being so surprised that the first blanket was OURS and we could TAKE IT HOME!!

Anyway, I became McGyver and created a rope from folded Micropore hospital tape and stuck monkey to it and looped it through some medical hardware on the ceiling. If we tug one end of the line monkey goes UP and if you let go he falls DOWN. Monkey can also swing and hoot and be kicked.

I bet this is good/bad for chest tube output but it was certainly fun.

I left for shift change and returned to find Wren napping.

How is he looking?
He has received no medication overnight and is in a good mood today. His swollen belly is a little less distended and his left IV is not leaking much. He is very happy and moves easily despite no pain medication. He also seems more relaxed with the nurses.

Hopes for Today
We hope to have the arterial line removed. It is in his right hand and we refer to it as one of "the big bandaids."

We also want to see chest tube output down significantly. It was still 120 CC over 24 hours but most of that was in the first 12 hours. It was much less (30CC??) overnight.

Blood gases were great, platelets up to 218 (from 183 yesterday) and his hemacrit was in the 40s (was 30 yesterday) after his blood transfusion.

I wait to hear how the X-ray looked. I would like to make it back for Rounding around 9.30am so I should head in soon.

Backing up in the CVICU
The natives in the CVICU (our two older bedmates) are getting restless. Both are almost able to be discharged from hospital but neither have left CVICU. Granny mentioned that they may speak with their social worker about costs because the CVICU costs are significantly higher and their children do not require (or desire) to be there. They want to "work something out."

We are still happy to be here but we expect to hear talk of moving to the floor today or tomorrow, which means it may be days before he gets a bed! He needs to get a few more lines out before he can move.

I was told that five surgeries are scheduled today!

Heart Valves from Stem Cells
It is with mixed feelings that I read todays press release from the AMA conference saying that a research team is 5-7 years away from transplanting cord blood developed heart valves for children like Wren. It is so exactly what we hope for one day that I am inserting a big part below. I hope that these valves can be developed even if you don't have the cord blood from your own child. I feel sick at the thought that we could have saved Wren's cord blood and given him a chance, but didn't. I think I recall Dr Lewin saying something like if they do get this kind of technology they will be able to grow valves with donated cord blood.

Cardiologists at the University Hospital of Munich say they are 5 years to 7 years away from transplanting new heart valves into children with faulty hearts, derived from the children's own cord blood. The researchers reported the findings today at the annual meeting of the American Heart Association.

Heart valve abnormalities are one of the most common kinds of inherited heart defects. In these babies, the valves are too narrow or don't close as they should, keeping blood from flowing properly. While surgeons can transplant new valves from human or animal donors, or from artificial material, these valves won't grow as children do, forcing kids to undergo repeated operations to outfit them with new, larger valves, said Ralf Sodian, the cardiac surgeon who led the research.

``Imagine you had a child with congenital heart disease and this child has to be operated on every 2 to 3 years,'' Sodian said in a Nov. 7 telephone interview. ``It's very hard for children and parents. The goal is to do surgery once that would last a lifetime.''

Sodian and his colleagues collected umbilical cord blood from babies as they were being delivered and isolated a key group of stem cells that form the main tissues found in heart valves. After freezing the cells for 12 weeks to preserve them, they seeded those onto a biodegradable polymer scaffold in the laboratory.

The eight bio-engineered valves created by Sodian and his team acted much like natural heart valves when they were tested to see how they would handle blood flow and pressure, he said. The scaffolds will dissolve over time, leaving behind a fully formed structure made from the cells, he said.

I hope this works - at least for all those kids who need heart valves in the decades ahead.

Bedtime again

I felt quite depressed this evening thinking about the moderate gradient across the AV.

I spoke with the surgical fellow in the unit this evening about my concerns and he feels that its still a great improvement and better than doing a kono at this point.

Apparently taking down and redoing a kono is a big deal and it is preferable to do the initial kono with a larger heart to minimize the chance of damage. If Wren's aortic root continues to grow well it may even need no enlargement to have a valve replacement (I don't believe he was remembering Wren's case history when he suggested this, I have little hope of lasting that long prior to valve replacement BUT it was nice to feel that sense of options and not knowing instead of a sense of gloom). He said that Wren's AV was small and even a 16mm St Jude's valve may have been a stretch to insert.

I guess its good to air your fears because this is where we are now and we will face what comes next, next. Right?

I was talking about this with Carrie (mother of the 8 year old Meagan) whose daughter is having her 3rd surgery. She says that she feels you have to just face one surgery at a time and while its harder when the child is older, you are also better prepared.

Before we left I ran into her with a cup of 10 goldfish. She is bribing Meagan to eat 10 goldfish with the promise of having a pet mouse when they get home.

Ah, it makes me want a rat. Then again, even my RAT needed surgery (she developed mammary cysts) and that was traumatic in itself. No new pets. Wild free things only.

Happy news from Mia

I was just catching up on blogs and saw that Mia's baby Mimi just received her heart transplant at Seattle Children's hospital today!

I met Mia at our heart support group last month. Her baby had been waiting for a heart since birth 4 months ago.

We wish baby Mimi an easy recovery and look forward to her seeing the world outside the hospital she has lived in since birth!

Big Fears and Small Setbacks

LAP Line and other Progress
The LAP line is out. The cardiologist who did it said there was no bleeding but since Wren's platelets and hemacrit were low he ordered a blood transfusion. I think he is getting 150 ml.

The EKG is pending and the echo was brief. It did not confirm or deny the location of the LA line tip but they are looking on another screen to see if they can visualize it.

One of the residents came by to do an exam. His chest tube has been allowing air to gather under Wren's skin. If you touch his belly around the tube and quite far down, you feel a strange crunching of bubbles. Its called crepitation or subcutaneous emphysema. They redressed and packed gauze around the tube to try and slow it down. The chest tube is still putting out more than 50CC per 24 hours and won't come out just yet.

The Plan
Next line for withdrawal will be the arterial line in his right hand. I hope that will come out later or tomorrow.

They may talk about the "move to the floor" tomorrow.

How am I doing?
My feet are sore. I know its small potatoes compared with heart surgery but I would love to sit down and drink tea and talk about... well, potatoes or the news or the weather or fall trends in woman's boots. Or sleep.

If you have ever done a really long haul intercontinental flight this might feel familiar. Its as if you are just keeping on hopping from NY to London to Joburg to Dubai to Paris to LHR to Hong Kong to Sydney. You have no idea how long you've been going or what day it is or what time it is in that day. You see flashes of sunlight but it feels wrong - too bright for afternoon or too dark for lunchtime. You wish you could have someplace more private than an airport lounge or a chair 100 people have sat in last week.

You worry about your luggage and whether you will find it again. You have no idea when the flight will end or whether you will end up at your destination or somewhere obscure and unfortunate that is not written up in guide books. You learn to compromise and be thankful when you are not sitting next to someone with SARS or broad shoulders. You are constantly afraid you have lost your passport and you really love a latte and an internet connection.

What the H*CK is up with the LPCH internet gateway!!!! (I am now standing in the LPCH courtyard using the Stanford Hospital Gateway by pointing my laptop a certain direction.)

Worries
I am pleased by Wren's progress. My worries are about how long this improvement (halving the gradient so far) will buy us. I knew this was the risk in trying a less invasive procedure like either valve replacement option and I very relieved Wren has made it through but we have to ask "is it enough?" "Will his LV improve with the remaining gradient and how long will it take to recur if scar tissue forms?" I am thankful that we have come so far but it is always nice to think that you have done this FOREVER and there is no long term outlook without surgery sooner or later.

The Rennovation
While this is not really of widespread interest, all the nurses and staff are keen to talk about 'the move' to the new CVICU and ORs on the first floor. The new CVICU will have a parent lounge, space for parents to sleep by beds AND will double the CVICU and PICU beds. It will also increase ward space and have a transitional area between CVICU and 3-West.

I peaked down the corridor to the new ORs when workmen were going in and it looks very high-tech and pretty but I guess all ORs look that way uninhabited.

Apparently, they will not be getting more surgeons but will be able to schedule more surgeries - slots are currently booking into March right now - but they still expect the same delays and backups as beds on Ward hold up the moves.

Today, they are short of beds again and our neighboring 15 year old with a pulmonary valve replacement is moving down to a lower priority area (farther from the hub) and the transfer patient from Cleveland will be our bed-mate.

Monday Morning - more information

I arrived at the CVICU around 6am and found Wren waking up. He had received Ativan half an hour earlier when he woke and was distressed (I need to get in there earlier tomorrow but thought he would sleep longer since he went to sleep at 10.45pm).

He had a good night and was relaxed.

The unit is very busy this morning. There is a new case transferring in after lunch, a surgery scheduled and lots of rounds. I met the surgical fellow who was incredulous at the LAP numbers and ordered an echo. Apparently, Dr Hanley expects Wren's LAP to be good and stable in the 15-18 range.

I asked what the echo showed but they had not had time to read it (I think they want to talk about it before they get "the story" for the parents). The only things I overheard mentioned were that cardiac function was good, they could see no effusion to account for the low figures but that they could not visualize the tip of the line.

It is coming out this morning.

The cardiology attending - Dr Wright - said that there were not other methods to confirm LAPs but that they feel that since this X-ray is so much improved (now clear rather than fuzzy) and his pressures are stable - they expect the LAPS to have improved. Just not that much!

I shall head back after breakfast and hope to be there for the LA line removal. A surgery fellow will be there and they have blood on hand by his bed in case it causes bleeding or complications.

A+ Afternoon

We have returned for dinner after a long but very happy afternoon with Wren. When I went in after lunch I was shocked to see his LAPs reading "8". I checked the line and asked the nurse about it. She speculated that it was due to the placement of the feed and monitor - if it is above the height of the breastbone it can misread. We altered the setup but there was no change. It was EIGHT! Here is the monitor with the LAP in the bottom row.



He slept for a short while longer and then woke up and nursed and then played for an hour or so. The whole time he was reading 14 and under.

We played with the big mylar balloon Josh bought him and some of the new toys, including a stretchy rubber centipede. We looked at a pile of family photos we brought and he ate lunch of grapes, strawberries and cheese I brought from home, poking the fruit on a toothpick I had found in the drawer at home. Every since we discovered the sample trays at Whole Foods he has loved to poke eat his food.

Here he is with the popsicle from this morning and the new mylar balloon he likes to kick with his "snake". His snake is the new code for the puls-ox on his toe which he used to fight until it was given an identity by Josh.



Despite our best efforts, Wren could not go to sleep and at that point Josh arrived to sing. We sang for 30 minutes but he had still not slept again so we assumed he was in pain and gave him Torodol (a scheduled dose). He tried to sleep but was still uncomfortable so received Ativan an hour later. Then he kind of got goofy and we think he had a mild drug interaction. He was very tired but didn't sleep and was still awake when dinner arrived.

He ate mac and cheese, some beans and some graham crackers as well as the mango smoothie we brought for him. He has a regular snack bar in the nourishment room fridge - all his things with little stickers on to brand them his own.

Eventually it was 6.30pm and we wanted to head home for dinner. Shift change was coming so we left him awake but goofy with nurse Chris. We hope she managed to put him to sleep by singing or drugging.

We shall head back as soon as we have recovered with our pizza (now baking) and salad (with garden tomatoes).

I feel a lot more hopeful today - the glitches seem to be reduced and Wren was very much more himself, the outbursts were fewer and even when he was in his highest tantrum the LAPs were only in the low 30s.

Moving to the floor
I have asked a few nurses when they think Wren will be ready to head to the 3rd Floor. All have said by Wednesday - or even Tuesday PM if he continues like this. The move to the floor seems to be driven both by being stable and by the need for post-op beds. There is only one surgery Monday (2 surgeons are away) but a few on Tuesday. Wren may be moved out but is 4th in line for a Ward Bed. At the moment, Ward beds are more scarce than CVICU beds, so that may delay things.

The CVICU Neighborhood
I spoke with the family of the 8 year old girl with ToF. They were saying how much harder it was this time compared to her previous 2 surgeries. The issues of fear and knowing what is going on is very hard. I confess I think that heart surgery is difficult at any age. If you are 2 you don't know what is going on and that is your complaint. Come on a few years and its all about anticipation. Still, the 15 year old with the syringe in his earlobe is enough to give anyone hope.

Honorary Jewess

The home we are staying is belongs to a Jewish family. I just wanted to post for my Jewish friends to say I feel like an honorary Jewess down here. The car we drive has Jews for Obama bumper stickers on and another that says Mentshes in the Trenches. In the bathroom I read Jewish Living magazine and battle the difficulties of intra-faith marriages such as those between Asheknazi and Sephardic, or those who are Secular vs Religious and may have different plans on Shabbat.

I am learning about the work of the Jewish World Service and am careful to recycle the old newspapers.

I wash and put away the beautiful mug with Hebrew inscriptions and we make its simple to keep kosher in the kitchen by avoiding meat and just using the dairy cookware and cutlery.

The other night we googled the various Kosher symbols on the food we bought to check there wasn't anything naughty in any of them.

Of course, we are missing our Jewish genealogy but if I close my eyes I enjoy being a member of the Jewish community committed to social justice.

Bumps but doing OK

Everything is still good but, after a soothing early morning, we have had trouble keeping Wren calm. He is okay for a while after waking, particularly if he gets what he wants (Thomas on TV, nursing, a lollipop, a popsicle or a syringe of water to pay with) but after about 30-45 minutes he gets tired and agitated and wants to get up. His pressures spike, lines get occluded, we all rush into overdrive to soothe-disentangle-adjust-distract him and if we don't manage with that - to medicate him.

Josh has gone to sit with him now. He says his plan is to watch his fantasy football roster lose on the little g-phone screen. Wren is sleeping after a dose of Ativan and some Torodol.

Morning Rounds
We had morning rounds with Dr Fletcher (?) attending and Dr Colvin (ICU Fellow) as well as the usual team. The summary was that "he is doing well."

Discussion focused on the LAPs and what to do about them. Also, his overnight X-ray showed some pulmonary edema, described as "some fluff on the right side." The nurse assured me that they are not very concerned at this point. They decided to do a volume challenge - increasing Lasix (not Epi!) and trying to get off more fluid.

Part of the discussion was explaining to residents about the relationship between diastolic pressures and the LAPs. I didn't follow it all but it seems that if the Diastolic is up as well as the LAPS there is less concern at loss of coronary perfusion pressure - all over my head! Anyway, Wren's were going in the right direction.

His chest tube is still putting out a lot - 150 mls in 24 hours - so that is staying in a while. It is now more less bloody but still bright.

His IVs are Torodol, Zantac, Lasix and PRNs are morphine, versed, tylenol, benedryl and Chloryl hydrate. Lasix is now 6 hourly.

Platelets 183
Albumen 3.4
INR 1.2

Milestones
After morning rounds Wren had his Foley catheter removed (traumatic all that tape) and left foot IV which was occluded (lots more tape).

He nursed a few more times. At a lollipop. Ate some cheerios (about 8) and spoke a lot. He is still glum and wants to get up and go home.

The LAP line is still in, at least until tomorrow.

Feedback!
Thank you all for the emails and comments. Since there is no internet connection at the hospital I don't have much time to respond individually. We are not encouraging visits until Wren is a bit happier but please let me know if you ARE in the hospital. We are in the CVICU and I'd be happy to meet for a short while. We just grab breaks from time to time and I sometimes sleep a bit in the parent day room or the sleep lounge.

An Excellent Night

I arrived just as Wren was waking up and had been calling "Mama". He was decannulated and had drunk breastmilk through a straw overnight after refusing a bottle.

While I was there, the fellow came around and ordered his only medication (by drip) - Milrinone (sp) - turned off. His LAPs were low overnight - around 17 but down to 15 in the morning.

When I came in, Wren was very upset and demanding "milk". This is his usual habit at home and so I got out the straw and offered him a glass of expressed breast-milk which he usually gets fresh from the 'mommy-cow' in the morning. He pushed it away, splashing all over.

So, as his alarms were wringing and the nurse was busy with her other patient, I shifted him towards me and let him nurse at the side of the bed while standing on tippy toes. The nurse said she had never seen that before but it worked!

His LAPs went down to 12 and he was very very content. After nursing BOTH sides we watched some TV, read a few books, blew bubbles and played with elephant and hedgehog puppet.

After an hour he became agitated and I suggested he nap. It took only singing and patting and he fell asleep. I need to get back soon for rounds. Its shift change and we have a nurse named Dawn.

Going in shortly

I am going to see Wren while Josh gets an hour or so more sleep.

We saw him last night from 9-10pm and when we came in he was awake and eating a popsicle. Of course, as soon as we came the tantrums started. He wanted more numnums, to get up (he rolled onto his tummy to stand up twice yesterday) and wants the nasal cannula gone because his itchy nose is driving him nuts (narcotics cause this!)

We were very encouraged at how alert, communicative and more himself he was.

We managed to get him to rest without ativan but he couldnt' settle to sleep so we left after he received his Tordol, Benedryl, Ativan and something else I forget which is supposed to help with something else I forget too.

He was still raising his LAPS but not as much. He may have still been affected by Versed earlier (which decreases LAPs) but it would have been a while before. He liked to watch Bob the Builder on his overhead TV and was commenting on "rain" "yucky" and "Muck" on the screen. He also liked the bubbles the nurse gave us and made a valiant effort to pop them despite all the encumbrances on his arms. It was hard but we managed to get a number of bubbles in range for him.

He is now much more targeted in the lines he tries to pull out and was very upset when we told him that the red beads on his lines were not lollipops and he could not eat them.

I hope he has had a good night. The nurse was going to try and wean the nasal cannula from .5 litre O2 so it could stop bugging him.

Day 1 Summary and Evening transfer plan:

It is 5pm and Dr Andy Shin has taken over as attending. Our night nurse again will be Jin.

The plan is to continue to administer meds PRN (as needed) rather than returning to the fentanyl drip. Our day nurse, Amy, has been very concerned with the way the LAPs spike when he wakes up and moves or cries. She would prefer to go longer stretches without administering morphine or versed. All day he has been waking up and sleeping in short stretches rather than resting. She explained to Dr Shin "he spikes to 32 when he wakes up and he's not thrashing about or crying."

Dr Shin is more tolerant of this high LAPs. He explained to the fellow and nurse that this lower pressure is a big change from Wren pre-op. He can tolerate some higher pressures that would cause pulmonary edema in someone not used to it.

They are working to balance sedation against pressures when he is agitated. The orders are in for morphine, Ativan, tylenol and benadryl to be use as needed (PRN). He has orders for Tordol (like a prescription strength bene

Dr Shin would like to keep him calm but to space out the Ativan to avoid him being too medicated. He explained to the fellow that Wren is used to a higher baseline - 20-30 is OK. We want to keep him out of the 30's if we can but that 17 is excellent for him.





Here is the offending monitor showing the LAP measurement (left atrial pressures) on the bottom.

PS. The boy in the background (of the one photo of Wren) is amazing. He was the surgery after Wren and was brought in from post op about 8pm. He was born with ToF and was in for a pulmonary valve replacement. The evening after surgery he was sitting up and eating jello while sticking a syringe through his hear. He is a teenager with an ipod and a large ear piercing he likes to frighten the nurses with.

The first case (before Wren) was also a valve replacement in a girl who looks about 11. She is also up and very vocal and may leave CVICU tomorrow if they find a bed. The recovery can be so quick, its amazing.

Rounds

Rounds happen every morning. During rounds the attending, fellow and various residents come to the bedside of each patient. The respiratory therapist is also there. The on-call fellow gives a presentation of the case and suggests a plan for the day.

In a scene reminiscent of Gray's Anatomy, the Attending gives comments and ask questions of the junior staff and confers with any surgeons or cardiology staff on rounds. Sometimes, s/he points out diagnostic or management issues to the residents and they ask questions. Finally, the plan is set and the group moves off while the details are sorted out with the nurse.

Our nurse during the day is Amy which is a good omen because we loved Nurse Amy in Seattle.

I find rounds very interesting. During rounds the doctors discuss aspects of the case that they do not mention to parents. Typically, I am told the basic plan for the day and that he is doing "well" or that there is something of concern. With rounds, the underlying issues are discussed with the reasons for the numbers we see on the many monitors by the bed.

It is also interesting to see how many facts the younger doctors get wrong when presenting the case. Eg, below: Wren didn't really have just a membrane, when he came in post-op they said he had a RV resection and I heard that he had his aortic stenosis ballooned post-operatively (it was at 6 weeks of age). These were not problems in his care but its odd and the pedant in me wants to correct them.

Some Information from Morning Rounds 11/8
------- ONLY FOR HEART PARENTS AND THOSE INTERESTED IN MEDICAL HOO HA---------------
[Throughout this discussion, I found it informative that the focus was on the mitral valve sufficiency. So far, Wren's mitral valve has been beeping on and off the radar. Before birth, it looked ok. Around 1 year, it was "abnormal" but functioning well. After the latest cath it was "possibly a problem needing surgery". Pre-op it was deemed okay. During surgery the subaortic membrane/tissue was "peeled off the mitral valve where it was attached" and now the LAPs are a worry and there is discussion of mitral stenosis. This is a big deal for Shone's patients due to the complexity of mitral valve replacement and repair and the added difficulty of inflow and outflow tract repairs]

The fellow gave a presentation about Wren:
"Wren is a 22 month old with Shones Complex presenting with mitral valve stenosis and aortic valve stenosis. He has a subaortic membrane, a super-mitral membrane but a normal gradient across the mitral valve. From cath we saw no recurrent coarctation but AV narrowing. From Eco we see a bicuspid AV with super valvar AS and a fibro-muscular ridge. From MRI pre-operatively we saw a peak flow of 115 across the AV and 53 mm post operatively.

During surgery he had a fibro-muscular ridge resection, super valvar patch and some opening of the valve but the AV remains restricted.

He has chronic mitral stenosis with LA pressures aruond 22-25 post-op. They were 18-20 overnight and now 11-18. "

The nurse then hands the chart to one of the doctors who reads out the numbers:

LAP (left arm pressure): 11-17
HR (Heart rate): 136-160
BP (blood pressure): Low 88/44 H: 138/70 Average: 100/50
Saturation (sats): 98-100
Gases very good.

According to the attending he is having "a very nice recovery: and "everything looks good". He had no issues intra-operatively. Post-operatively he had ?? left coronary artery insufficiency. His EKG looked better.

Then the attending gives the final words and plan for the day. The plan for the day is to attempt intubation when he wakes up. Stop the drips of fentanyl and provide morphine and versed and let him wake up a bit more. Diurese him - he is to get lasix because his urine output has gone down a bit overnight but he is only a little fluid positive and not puffy. Overall it is "a good repair", X-ray good, gases good, NG tube can come out.

Another hypoplast
At this point another fellow walks in looking a bit disheveled. Someone asks him if he has seen his pager. He looks embarrassed and gropes around his scrubs: " I fell asleep and when I woke up I thought 'shit, where is my pager?" He pulls up his scrubs.
"You mean SHOOT, where is my pager!" adds someone else looking meaningfully at me.
The NP adds "A new hypoplast was transferred in"
"Oh good!"
"That was the only page. I'm glad I didn't let them wake you."

How long will this take?
Josh wanted to know, so I asked Amy how long she expects Wren to be in the CVICU and Ward if there are no complications. She says that it depends on keeping the LAPs constant. They don't mind them being on the higher side but they hope to see stable numbers not shooting up when Wren is agitated or moves as is the case at the moment.

If there are no complications he could be out of the CVICU in 3-4 days and discharged in a week. This seems very soon to me. Personally, I have read and heard so many things that can happen post-op, I just take things day by day. BUT we need to decide if and when Granny and Frost come down to join us and this gives us an idea.

Saturday evening update from Josh

Shannon and I have now settled into a Wren-monitoring rotation.  We eat breakfast and lunch together, but otherwise one is in the CVICU with him while the other naps or otherwise relaxes.  We'll leave him at the shift change at 7 when we have to leave the room anyway and he'll hopefully keep close to his normal sleep schedule and be willing to stay asleep for the night.  He certainly slept much better this afternoon around his normal nap time.

The nursing staff is all great and well qualified to take care of him, but there's definitely a difference when we're there.  We're more immediately responsive (since we're about a foot away from him in a chair) when he stirs or cries out, and we're more available to feed him sugarwater or read books to him for long stretches when he's conscious.  It makes enough of a difference that we're trying to be there as much as possible during the day.

Concerns

Wren's left atrial pressure is still high.  It was expected to be high and will likely always be high for him because of his condition.  Normal is apparently something below 10, but Dr Hanley wants Wren's to stay somewhere in the 16-20 range.  Through last night and this morning his pressure was comfortably in the mid teens, spiking up above 20 only when he got very agitated (unforunately frequent).  But lowering pressure is a side effect of one of his drugs (I forget whether it was the Versed or the Ativan) and once the drug was wearing off he was hovering at 20 even when fast asleep, so he's been redosed.  According to the nurse, the increased pressure could be a temporary side effect of swelling and inflammation in the heart after surgery, so hopefully it will drop down on its own.  I don't know what the next step is if it doesn't.

Wren still has a dopey left eyelid, and we're still worried about the possibility that he had a stroke.  The staff doesn't seem too worried about it and he doesn't seem to have any other symptoms, so it may just be idle worrying.

Wren's still full of tubes, and he hates each and every one of them.  If they're not itching him then they're getting caught on his feet, or they're sore, or he's rolling over and occluding them.  I measure progress in the number of lines that get pulled out of him, and so far the only progress on that front has been the breathing and NG tubes.

Progress

Through the morning, he was getting increasingly demanding for 'numnums' when he woke up, which was a binky dipped in sugar-water.  Feeding a near-2-year-old on drips off a binky is painstaking and unsatisfying work.  But around 5 hours after the tubes were pulled he was okay for clear liquids.  I asked the nurse if this included apple juice, and although she wasn't too excited (it's a little acidic), Wren was awake at the time and started chanting 'apple juice apple juice', so that was decided.  He guzzled half a can in a few seconds and naturally threw it back up shortly thereafter.  So he was limited to sips of water subsequently.

He's also becoming more familiar with the nurses and they're having an easier time settling him down, which might mean Shannon and I can be a little more relaxed when we're away from him for dinner.

Bumpy Day

I am home for a nap and a sandwich with tomatoes from the garden. It has been a hard day so far. The team is trying to balance pain and agitation without too much sedation. Sedation makes it harder for Wren to breathe and since it has been only a bit over 3 hours since he was extubated they are still watching respiration closely. However, if he wakes up too much his pressures go up because (even with pain management) he becomes aware of his discomfit and situation and wants to pull out lines, remove hand splints and just get up and go home.

For example, shortly before I left Wren woke up and was speaking in his hoarse little voice. He wanted more milk now. I asked for a binky with some sugar water to dip and Wren became very alert and calm taking the binky and dipping it in the sugar water then sucking it carefully. He did this for 15 minutes, talking a bit and being serious but very much himself.

Suddenly, he had a tantrum. He started kicking wires, I hadn't given him sugar water fast enough and he wanted to move and turn over but was prevented by supports and chest tube. His pressures started going up and up, his heartrate and resp alarmed and his left arm line occluded. It was chaos.

So, then he received doses of morphine, versed and is going to get chlorox. They just want him to rest more than he is able today.

Concerns
Wren's chest sounds rattly because he isn't coughing much. He has stridor and strains to breathe when he is asleep and stressed. When he is fully asleep it is much better.

His left eyelid is droopy. While this could be an effect of drugs we hope it wears off and is not a sign of a stroke. Wren is talking and moving normally so we are hopeful it is nothing serious but the nurse also noticed it and is monitoring it.

Left arm pressure. This continues to spike up to 29 when Wren is agitated. We hope it settles as he settles! It remains around 15 most of the time.

Good signs
Wren is extubated, moving around, talking and alert between doses. He is having a good recovery according to docs at rounds. More for my own records than everyone's interest - I will post some of the comments from Rounds later. As I said earlier, I learned a lot.

Got to nap now.

extubated

I am typing this on the diminuitive keyboard of Josh's google-phone. The words are like pin-heads.

NEWS - Wren was extubated around 7.30am. He was stable overnight and I got a lot of infoat rounds.

They are watching his left arm pressure which was a bit high overnight indicating his mitral valve was
or rather is, stenotic. Now they have come down after he relaxed.

Extubation was rough but he is on only 40% O2 cpap now aftr he desatted a bit rolling & crying. He can talk
& has a very quiet husky voice. More later.