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...
Saturday, January 27, 2007
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.
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"
or
"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.
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"
or
"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.
Discharge
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.
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.)
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.
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:
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.
CHAT:
8:08 AM me: Carrie is coming by... she emailed
8:10 AM J: at 8:30?
8:14 AM me: Yes
[PAUSE]
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
brb
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.
CHAT:
8:08 AM me: Carrie is coming by... she emailed
8:10 AM J: at 8:30?
8:14 AM me: Yes
[PAUSE]
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
brb
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.
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 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.
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