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.