Saturday, January 27, 2007

Thinking of being a hippy

It was a lovely crisp afternoon with the sun low in the sky and everything looking clean and slightly golden. I went for a walk with Wren who has stubbornly refused to nap for more than half an hour since 10.30am. I was planning on an afternoon nap but that was not to be so I settled for a walk instead.

Originally I was trying to put him to sleep but Wren snuggled in the Moby Wrap he promptly took a nap. Since I couldn't figure out a way to extract him without waking him and I am not able to sleep on my feet safely so we walked anyway.

While I was walking along I had this strong urge to move out of the city and live in a cabin with solar panels and a goat and a nicely raked vegetable garden and a potbelly stove. I was thinking about a semi-rural community where I could spin wool and still get an internet connection and buy honey from someone with hives. Then I wondered whether it would be safe living further from Children's Hospital. It has been so nice to live 7 minutes from the Whale Entrance...

Meanwhile, Josh's colleagues sent us a huge bouquet of flowers while we were still in hospital but we were discharged the evening they delivered so the flowers were mislaid. This evening they were delivered to the door. They are wonderful - lilies, roses, something pink and spikey I don't know the name of. The bunch is definitely bigger than any I have been given before.

I hear Frost and Josh arriving home...

Friday, January 26, 2007

Mint icecream

Cheryl brought mint choc chip icecream for desert tonight and it was delicious. I don't think she had made it home before we had eaten dinner! Frost was very helpful and after he ate his quiche he 'served' me a large dollop and even wiped up the spills with a sponge.

Wren had a "normal" day at home today. He did his share of fussing and sleeping and eating and wanting to be held but that was about it. I don't think he was particularly happy or content but he wasn't miserable either which is more than I can say for Tuesday.

We bought a cradle swing and he had a nice long nap in that this afternoon. Frost thinks the cradle swing is a total entertainment center and whenever Wren is in it (trying to sleep or not) he wants to turn on the rotating monky/lion/toucan musical jungle with flapping leaves. He switches the soundtrack from beebop to lullaby and back again and wants to make it swing very energetically. I spend much time turning all the bits and pieces off. To give Frost credit, Wren seems quite interested in watching the show.

I am still anxious and feel a sense of unreality about being home. Before, I felt unreal in the hospital. I have already called the Heart Center once to speak to the nurse about the cath sites and whether Wren might have an infection. It turns out he doesn't which is good but I don't want to take any chances.

Thursday, January 25, 2007

Just so tired but home

We are all home and have the firelog on while Frost eats apple slices and Wren sleeps in the bouncy chair. I grabbed some cafeteria food on the way out.

They all seemed confident about discharging us but I am not really happy this time. Last time I felt Wren was getting better now I just feel we're waiting for the next bad news. I have really lost my optimistic confidence that it will all improve gradually and he will go on living like this long term. I know they say he could do fine but they use words like "tolerate"... too much. As in:

"many kids tolerate a gradient like that for years"
"It just depends what his body tolerates"

I don't want him to have to live with tolerance like a perpetual chain on his leg. I want him to live in ease and slow breathing.

After the surgery I knew he wasn't fixed in a normal way but I felt that the ways his heart is unusual were ways that he could - to borrow the word - tolerate. That's why this whole "new" issue of the second coarc and the sudden progression of teh aortic stenosis just shocked me. I was hoping for a year of being like this before our next lesson in heart anatomy.

I keep running it through in my mind but I am sure there were no new signs that Wren's condition was deteriorating until we saw that echo on Monday.

Even as we were discharged Dr Law said he thought the echos looked good but that this subaortic area may, need surgery later - open heart surgery, that is. Subvalvular aortic stenosis is not amenable to catheterization. I can just see myself knowing that hospital way too well and I wonder if all of us with kids who've had surgery live with this unknown hanging over their child or if it goes away and you reach a kind of tenuous stasis, some kind of equilibrium in which the reality of heart "danger" remains but you live with it, much like a pitbull next door. That known enemy.

We have another clinic visit scheduled for Monday. I suppose we'll get an echo and I can't claim to feel any joy about it this time.

A few hours before we checked out a new patient moved from Cardiac ICU to share the room with us. He is one month old and medivaced in from Boise, Idaho for a coarc repair. He had the same subclavian flap repair Wren had and also has aortic stenosis with a bicuspid valve. In his case the team are telling them they are "confident he is now normal and shouldn't expect problems". I envy them the sense that "this is it" for their child and that he is now "fixed". I don't think I can return to that hopeful complacency.

Sorry this is such a downer of a post. I feel sad and probably overtired and am not sure what to do next other than clean the house.


Wren is being discharged now. The cardiologist said the echo shows the areas treated in cath lab are looking great but there is still a gradient of about 20 in the descending aorta and around the sub-aortic area. This is a bit narrowed.

The cardiologist said the turbulence shows he "is not fixed" but much better. They will wait and see how his heart develops. The hope is that the left side becomes more efficient and flexible now that the load is reduced but there may be need for future surgery to address the sub-aortic or valve issues. There may not be.

We have a clinic visit in one week.

I am feeling relieved and anxious at the same time.

New Anxiety - echo turbulence redux

We have had the echo and are waiting to hear how it looks from the cardiologist Dr Law. I am feeling depressed and teary. After hearing how well the cath procedure went I expected to see little turbulence past the valve and through the arch. Instead it looked pretty much the same to me. There was high velocity flow even as far as the descending aorta.

It freaked me out.

The ward resident heard that we are anxious and said not to worry and that Dr Law will be up soonish. The resident still thinks we are going to be discharged, probably. We are all waiting on Dr Law.

I don't know how much more of this up and down, elation and terror, I can take. But I don't see that I have any options for "not taking it" either. Its not like I can grab my plastic and go shopping now, is it? (Even less so because Tara has my purse which I left at the Fremont School yesterday.)

A pulse! A pulse!

Dr Jones came by with sensitive fingers and doppler and found pulses in both feet! He ordered the heparin turned off and said we should keep him on baby aspirin instead and might be able to home today if the echo can be done and is reassuring.

The heparin is now GONE.

He explained that during the cath procedure they tried to use the left leg for acess but the femoral artery on that side had a blockage as they inserted the cath so they used the right side. After the procedure they did a contrast dye of that side to see what was going on and found that the ileac artery ??? was obstructed and had collaterals. This hasn't caused problems for his organs and his femoral artery is okay but means that they can't use that side for a cath procedure. Also, he suggested it happened during his first surgery when that side was used for a central line.

Anyway, neither vessel was damaged during this cath procedure (apparently they took images afterwards showing good flow) but the vessels can spasm afterwards and clots can form. This is why Wren was on the blood thinner, heparin. Now the vessels are open he no longer needs it.

Wren was so happy to hear this news that he smiled.

Morning reality

Joshua and I have returned to a long distance relationship. Here is the transcript of this morning's plans via chat and email:

Nobody has called yet.

Glad to hear you got some sleep. I'm still a zombie so I'm going to try to catch up after Frost leaves (if he leaves).

The diaper service diapers arrived.


8:08 AM me: Carrie is coming by... she emailed
8:10 AM J: at 8:30?
8:14 AM me: Yes

Sorry, the attending came around
Please put the zipper pounch in Frost's bag. It is to the left of the front door

8:15 AM J: done
how's Wren?

me: He is happy and chatty

8:16 AM He still doesn't have a pulse on the right but his leg looks better
There is a pulse on the left via doppler. So, we are waiting for the poeple with the most sensistive fingers - the cardiology attending due between 9.30 and 10.30 this morning

I have a maple bar for you

And I posted a picture of Wren swinging

8:17 AM Oh, please tell Frost that he is going home with Joshua and we'll fetch him from Joshua's

8:18 AM J: I wonder if sensitive fingers are a requirement to become a cardiologist
me: I think so.

Why are you a zombie? I had 6 hours sleep in 2 stretches and feel marvellous!

8:19 AM J: I need more sleep than you do

me: Uh huh
I think I'll try that one. I need more sleep than you too :)

J: I have evidence

me: Oh, can you tell Frost that Max is making lunch for him
8:21 AM J: I think this chat messed up my browser

24th January photos

This is Wren in his swing with a flash so it looks as if he's stationary.

And here is Wren in motion.

And here is my hospital breakfast selected from the buffet of options from donut to all-bran. All that is left is the danish and my decaf coffee.

A good night's sleep

Wren had a good and restful night. He slept in The Magic Swing - stationary - for most of teh night. He was tough to get to sleep but by midnight he finally fell into a good sleep and woke at 4am!

At 1.30am the nurses woke him for an IV blood draw which was horrible but afterwards he fell right back to sleep with a little rocking. At 4am he nursed and then slept till 6.30am for the grunty time...

He is now trying to sleep again and I am going to get breakfast.

The results of the blood draw was heparin level of just below 60. They want it in the range 60-80 so that should be okay for now.

Wren has a slight cough but is doing okay with it.

Wednesday, January 24, 2007

Complication - damage to blood vessels

Wren has been started on a heparin drip to help restore circulation to his legs. Apparently they did the cath on his right leg but also tried to gain entry on his left. As a result both are obstructed leading to a blockage of blood flow to the leg below the area where the catheter was inserted.

The attending cardiologist couldn't find pulses in either leg - or the left ones were very faint. His left leg looks mottled and his right is pale and cooler than the rest of him although still perfusing fairly well.

We are hoping the heparin works because they are keen to maintain the artery in case future cath procedures are needed. Apparently there are no other access points for caths and the cardiologist mentioned more aggressive and risky drugs which could be used if it was considered imperative to recover the veins.

Besides this being bad on its own it means Wren will not be discharged tomorrow. He is on a 24 hour Heparin drip through an IV in his left arm and will need a blood draw at 1am to check the heparin levels. HIs pulses will be checked regularly and we want them to improve in both feet. If the treatment works it will be THursday before we go home.

We also want some sleep - well, I do, anyway.

The Aquarium Cradle Swing to the rescue

Wren is back in the room but our plans for a quiet nap while he is still slightly sedated have not materialized. Wren seems very uncomfortable and cranky. His preference is to be held and nurse for ages but that was also painful for his hand which still has an IV. The cords get caught around his limbs and alarms keep sounding as his monitors malfunctioned with his kicking. He is also running a slight fever of 99.9, has a sore throat from intubation and is just generally pissy.

A dose of tylenol has not helped and he hasn't managed a real sleep since he came back 4 hours ago but teases us with little naps.

However, enter the Fisher-Price Aquarium Cradle Swing which has saved us. Wren is content to lie in the chair and not yell and toss and kick. I am thrilled. I don't know how long the soothing effect will last but I hope it is overnight. We have managed to turn the rotating fish on but the music off which is pleasing for all of us.

An A+ Result

At 10.45 we were told Wren was out of the cath lab and we could come down to the surgery center to meet the doctor. After an anxious half hour waiting for Dr Jones we were told the procedure was a complete success.

The initial examination showed that there was a pressure gradient of 56 across the aortic valve and of 21 across the aorta. The area of surgical repair was open but there was a shelf adjacent to the repair - another "coarctation" causing turbulence. They then performed a balloon dilation on both areas and they were both "very responsive". The valve improved to a gradient of 10 and the arch a similar amount.

The total pressure gradient from the valve to the descending aorta was 77 before the procedure and 18 afterwards. It was "an A+ result". There was no leakage at the valve now. Dr Jones felt that this should set Wren on "a better path". I didn't ask what the worse path was but I am sure it was dark and scary. The better path involves less muscle/more flexibility in the Left ventricle. He hypothesized that Wrens labor in breathing and fast breathing were due to some backup of pressure to the lungs and said this might not recover immediately but should put him in a good position to improve as "he gets used to his new plumbing."

I am now A+ happy and A+ exhausted.

Wren is extubated and in recovery. They are bringing him back to his room in about half an hour. If he looks good overnight he will be released tomorrow. We are not sure how long this treatment will last but Dr Jones said it could be many years. Josh immediately noticed that this means it could not be many years but I am feeling too pleased to contemplate the reverse implications right now.

I must remember to ask Dr Lewin what the aortic valve measured before and after (Dr Jones said it was on the small side but improved a lot).

Thanks again for keeping up on us and I will post more when we see Wren.

Wren went in at 8.45am

Dr Jones is the cardiologist doing the procedure. It should take around 2 hours. He was very very hungry by the time they came and took him in. I drove Frost to school with his peculiar lunch made up of gatherings from the hospital cafetaria breakfast: half a sticky bun, some canned pineapple, toasted almonds from the oatmeal topping and a bag of Sun chips. Not our usual fare.

We have a beeper and are waiting for updates.

Tuesday, January 23, 2007

The lights of laurelhurst are yellow

It is after 4am and the No Nursing rule is in effect (pre-op). I am apprehensive.

Thankyou all for the emails and comments of support. I email replies in my head but don't think I will do it right now. I should sleep, right?

Tylenot and the magician

I am staying over at the hospital while Josh is home. Its awful. Wren won't settle and its hard to soothe and carry him with all these wires attached. Plus, the damn monitors only raise my blood pressure. The longer he cries the higher his pulse and respiration. I overheard the receptionist say "...goes on like this give himself a heart attack". Now, she may have been talking about her boyfriend but I took it personally and tried harder to calm him. Nothing seems to work.

It was okay till they took blood draws to check his CBC and all that pre-op stuff and then there was the vitals check. He nursed for a short while and then started crying loudly and kept it up off and on for over an hour. I am exhausted. Why am I typing then? Cos my blood pressure is so high and he keeps grunting in the half sleep he has finally achieved with the help of a binky, more nursing, tylenol and a few worried visits from the nurse and the resident and the assistant resident.

They want to know what the problem is. WTF do I know? Being here? Being sleep deprived and having your blood squeezed out of you and trying to nurse in a too-narrow chair on a soggy pillow while monitoring patches tug on your skin? Having a constricted aorta that makes you breath super-fast and work hard to do anything? Being made to sleep in a bed that squeaks and wheezes like a steam-train when anyone touches it? Argh. I am venting.

I hope tomorrow is okay.

PS. Frost visited and was given a magician's hat by a magician doing tricks in the playroom. Frost loved it.

From room on Giraffe 4

Well, we're back into the hospital thing. Wren is in his metal crib and wrapped in those green, red and yellow bunny blankets. He has a heart monitor, a respiration monitor and a saturation monitor and is pissed off about it.

Anesthesia just came around and said Wren is the first case in one of the cath labs tomorrow morning which means he should start before 8am and leave the room by 7.30am. They want him to avoid nursing for 4-6 hours prior but may not need an IV unless they want to give him fluids during that time. Actually, we have just been told no nursing after 4am.

He is very grunty and complainy in the meanwhile.

We have also met:
1) Colleen the student nurse from Seattle U who will be following our case.
2) Our nurse Janelle.
3) The cardiology residents.
4) The cardiology doctor on call tonight.

We have yet to meet the cardiology doctor performing the cath procedure.

I went home for a short while to collect some things for Wren and it struck me how totally unprepared we were for this situation. The baby monitor is still on recording our empty bedroom, Wrens stuff is lying all over and the little seat he sits in while I make breakfast still has his blanket draped over it. We didn't even bring a binkie. I was so sure everything was going to be okay.

Now we are back adding to Wren's medical chart instead of reading books in bed and snuggling on the couch. It sucks.

I have asked if we can move to the part of the room by the window - we are in a double room and the other child was just moved out. They said okay but there is no-one to clean it so I am stranded in the shadowy side looking out over laurelhurst from a distance. Its scary, but its almost teh same view we had when Wren was sickest - in the Cardiac ICU. Although he still looks good now I can't help but wonder how much of this personality I ascribe to him is his own and how much is him struggling somehow with a compromised heart.

I am also hungry and need to make a dash for The Nourishment Room for some water and peanut butter. If I am going to be miserable I may as well do it with a mouthful of peanutbutter on wonder Bread.

Wren readmitted to Children's

Our cardiology appointment did not go well and he has been readmitted to children's pending the results of a heart catheterization procedure which will probably be performed tomorrow morning. Based on the results of the cath they will either 1) do nothing, 2) Do some ballooning during the cath procedure or 3) schedule Wren for open heart surgery on bypass.

The Detail:
While x-rays, weight, BPs are all good the echo showed two areas of concern. Firstly, there is a moderate degree of turbulence around Wren's aortic valve (already bicuspid it is now showing signs of not opening fully and there was a differential of 30). This is my first pass at being told numbers for differential pressures so if someone can explain that 30 I would appreciate it.

The second, and more serious, problem is a high degree of turbulence across the aortic arch near the surgical repair. The area of teh repair looks good but about 2mm before the repair is an area of added turbulence. On echo there appeared to be another area of coarctation but it may have been an artifact of the image. In that case the turbulence would have been a result of the valve restriction... which is a bit unlikely being relatively far away to see turbulence, but possible. If there is another coarc in the position close to major arteries he may need open heart surgery since it is both close to the recent repair and the arteries. The very thought of going back to surgery so soon is just breaking my heart. He's no longer just a brand new baby - he's a little guy who has expectations of comfort and knows us...

So, here are the options:

1) They find the turbulence is not so severe and do nothing.
2) They find the turbulence is caused by the valve and is severe and balloon it.
3) They find the turbulence is caused by a blockage in the arch and balloon it.
4) The blockage is in the arch but they don't feel it is safe to balloon it and recommend OHS.

We are in the Giraffe ward if anyone needs or wants to call. Dr Leewin felt it wasn't safe to send us home before the procedure because Children with this prognosis can be "on a slipperly slope" with symptoms manifesting suddenly. Josh is at the hospital waiting to hear when the procedure will be.

Cardiology appointment today

This morning (8-10.30am) Wren has his first post-discharge cardiology appointment. We have an echo first, then the usual checks and finally an appointment with Dr Lewin.

I had a nightmare about the appointment in which we were referred to the "nephrology" department and they wanted to scan me for an NG tube which was lost somewhere. I had to wait for hours in an administrative department staffed by social workers which looked very like an apartheid era "pass office" for "migrant workers". It was scary. Then I heard over the intercom that my mother and Frost had been carjacked and shot.

I woke up very alarmed but (this not being South Africa) no-one had been carjacked.

I hope no-one is carjacked today and the appointment goes well.

Sunday, January 21, 2007

Some sleep, more ounces

Wren slept a bit better last night. After an hour of fussing and yelling he fell asleep at 11.30pm and slept for 2 hours, nursed then slept ANOTHER 2 hours before doing the hourly thing until 8am! I am much more rested.

We put him in the wedge when I could remain awake and that may have helped him (although he has slept really well flat too).

Other good news comes from a visit to Sari G our naturopath. She met Wren this morning and we weighed him in her office. He weighs 11 lbs 7 oz - up from 9lbs 10.5oz 10 days ago. The only reason that could be bad is if its fluid retention but he doesn't have any signs of this like he did before.

I am cautiously optimistic for our appointment on Monday.

Frost's cough is no worse and Sari said his chest is clear and its all in his upper airways. His tonsils are a bit swollen but not infected so we hope he will get over this soon.