Wren had his 1 week post-discharge follow-up with Dr Olson this AM. The big question in my mind was whether the surgery had been a success. In general, it was good news. His LVOT overall pressures are much improved from pre-op. They measured 21 mean and 30 something peak (3 mm/s) over the whole area.
Wren himself did very well considering his anxiety. Stitch came out without too much drama, echo was peaceful, EKG was efficient. It was lovely to see our familiar nurse Jenny at the clinic.
There were two negatives:
1) Wren has a pleural effusion. For now we are "watching" it and hoping not to see signs of complications. He received a chest X-ray which will be repeated in 2 weeks at our next visit.
2) His mitral valve 'issue' has progressed. It showed mild-to-moderate regurgitation (up from trace-mild) and a higher gradient/ ejection speed.
3) Wren should receive Synagis this year (a real insurance headache for those of you who have tried) and we should keep him away from "ill family members". Like Frost who has a cough? Not really possible.
I am hoping the mitral issue settles down to a lessor number but I will have to practice my positive thinking and visualization to wish it wholeheartedly. Waiting for Dr Olson I was full of dread and couldn't imagine good news. I was getting into a full-blown panic before I took a deep breath. I shall be thinking of rays of light and some rainbows around the aortic and mitral valves. I should buy a pretty bunch of marigolds to offer to some benevolent spirit of Thanksgiving. After all, we are home and he is running around and his incision "looks beautiful" by all accounts. Dr Olson even confirmed that Wren's heart sounds "less like a washing machine."
"What a miserable day" says Mum, looking out the darkening window. Its not really. Its just the Seattle weather getting to us all. We need a sun box and some vigorous exercise. And more coffee, since Mr Mr woke at 4.45am and had only a short nap (for him).
Thank you for continuing to give us such support. I feel like a bit of a black hole of pessimism and choc-chip cookies. This appointment was not the problem.
Saturday, November 22, 2008
Friday, November 21, 2008
The Stem Cell Issue
Does anyone else have mixed feelings with all the press about advances in stem cell developed organs? I have been reading about the woman who received a transplanted windpipe developed grown with her own cells and the earlier report on the development of heart valves for children and again and again I wish we had saved Wren's cord blood.
At the time it was a real option. We knew he had a heart problem and there had been early reports on heart attacks being treated with stem cells to restore heart function. I looked into it and received all the forms from Cord blood registry but then I decided not to. I think there were a number of reasons:
1) It is expensive. I think we were quoted $2,000 upfront and then an annual fee in the $100s.
2) The critics said that if widespread treatments became available one could receive donated cord blood from public registries.
3) The long term viability of cryogenically stored blood is unknown although widely held to be good.
4) Our cardiologist at the time said that Wren's heart condition (in utero) was not a factor in whether or not to store the blood.
5) I felt I was grasping at straws and not being realistic about the chance of it being needed.
But now I wish we had. Its not that the treatment is available right now or that the cells could not be obtained elsewhere (eg from his own bone marrow) or that they could be used. A friend told me that there are even companies that will bank your child's milk teeth when they fall out to secure the stem cells in them! Its just that having the cord blood banked would give me a good feeling, a hope that a development I had not anticipated and cannot control would come and perform a miracle. I would like to have that straw to grasp at and imagine as I lay in bed at night.
Do you think I could make Wren lose his teeth early if we needed them? Get some calipers?
Are there any other parents of kids with bodgy heart valves who are watching these developments with hope and dread? Hope that our children will qualify for a 'native' grown valve that will make all these nightmares go away and dread that we blew it by not storing blood or the technology won't be ready or tested soon enough or will take a decade for FDA approval and then we'll have to go to Spain or Japan or England and camp in the street when we get home (because we'll have sold our homes to pay for it overseas).
I think I am still feeling post-surgery anxiety and its looking for something to hang on, right?
At the time it was a real option. We knew he had a heart problem and there had been early reports on heart attacks being treated with stem cells to restore heart function. I looked into it and received all the forms from Cord blood registry but then I decided not to. I think there were a number of reasons:
1) It is expensive. I think we were quoted $2,000 upfront and then an annual fee in the $100s.
2) The critics said that if widespread treatments became available one could receive donated cord blood from public registries.
3) The long term viability of cryogenically stored blood is unknown although widely held to be good.
4) Our cardiologist at the time said that Wren's heart condition (in utero) was not a factor in whether or not to store the blood.
5) I felt I was grasping at straws and not being realistic about the chance of it being needed.
But now I wish we had. Its not that the treatment is available right now or that the cells could not be obtained elsewhere (eg from his own bone marrow) or that they could be used. A friend told me that there are even companies that will bank your child's milk teeth when they fall out to secure the stem cells in them! Its just that having the cord blood banked would give me a good feeling, a hope that a development I had not anticipated and cannot control would come and perform a miracle. I would like to have that straw to grasp at and imagine as I lay in bed at night.
Do you think I could make Wren lose his teeth early if we needed them? Get some calipers?
Are there any other parents of kids with bodgy heart valves who are watching these developments with hope and dread? Hope that our children will qualify for a 'native' grown valve that will make all these nightmares go away and dread that we blew it by not storing blood or the technology won't be ready or tested soon enough or will take a decade for FDA approval and then we'll have to go to Spain or Japan or England and camp in the street when we get home (because we'll have sold our homes to pay for it overseas).
I think I am still feeling post-surgery anxiety and its looking for something to hang on, right?
Wren's insight
This, from Wren in California. Granny was showing Wren a laughing buddha and Wren was examining him carefully.
Granny: Buddha has no hair, like Daddy.
Wren: Like Dadda [stroking head]
Me: What happened to Daddy's hair?
[pause]
Wren: Dadda's hair not working.
Granny: Buddha has no hair, like Daddy.
Wren: Like Dadda [stroking head]
Me: What happened to Daddy's hair?
[pause]
Wren: Dadda's hair not working.
Thursday, November 20, 2008
Distracted
This morning (at 6.15am) I staggered into the kitchen to put on coffee and came face to face with a raccoon eating our catfood. It didn't even run away so I did.
Joshua shouted "get the broom" when he heard my shriek but by the time I came out of the bedroom and found the broom the beastie had left.
Last night I had a good sleep but Frost had nightmares and Granny was worrying about losing suitcases and toys we have not seen since Stanford (hedgie is missing!!!) I have been becoming very anxious about the checkup on Friday. It is okay during the day but in wakeful sleep during the night I worry about the remaining gradient and imagine ancestor-figures dressed as cardiologists who wag long fingers at me and say "this will not last, my child." I have started to wonder how parents of children facing multiple surgeries survive. Are they in therapy with specialists for sick children? How do you reconcile the innate happiness of a child in the now and the insidious fact 'something is, or may be wrong RIGHT NOW' or tomorrow.
While down in Stanford at the playroom I met a mother and her 2.5 year old son. They were waiting for a bed before he could receive methotrexate for his leukemia. She described how they found he had cancer. They were out camping and his leg swelled up. She thought he had been bitten by an insect and took him to the local town hospital where they could find no bite, so did a scan. He had a huge blood clot and a massive area of 'tumor'. He was airlifted to Stanford where he is now an outpatient, hairless, and wearing those little knit caps often given to children in chemo.
As a parent, you are always vigilant for owies, cars, falls, bullies and other potential dangers. But once you know the details of heart defects and leukemia, how do you calm down again? Its like living with the sound of a medivac helicopter arriving on your roof every day, all the time. So, we are doing well settling into home life. Wren loves his toys and "want play diggers" and cars and animals and read books and all the other joys but to mange a metaphor hugely - there is always that "thud thud thud" in the back of my mind - and I am not looking forward to Friday's echo.
One odd thing in the post-op reports is that the numbers for Wren's pre-op and post-op gradients vary widely. On some reports the mean gradient was 41, peak flow 73, intra-operatively under anaesthesia it was 115 peak and 65-70 mean. Post-op (in OR) it was 34 mean and 61 peak. Recovery echo it was 24 mean and 41 peak (fewer angles). Pre-discharge it was 33 mean and 61 peak. In one post-op summary they say that the mean gradient pre-op was 34 (So, in some studies there was NO improvement in gradient over the AV!) Why did we do surgery if this is the case? Now, it is possible that the gradient they are measuring IS across the AV rather than the entire outflow tract area - perhaps intra-operatively they were measuring the entire obstruction rather than elements of it, although I thought that was only possible on cath. I should look up his cath numbers and see what they say. And of course, we will be able to ask Dr Olson questions on Friday.
Mum and I are hoping to go out for coffee and a pedicure today. Its cheaper than therapy!
Joshua shouted "get the broom" when he heard my shriek but by the time I came out of the bedroom and found the broom the beastie had left.
Last night I had a good sleep but Frost had nightmares and Granny was worrying about losing suitcases and toys we have not seen since Stanford (hedgie is missing!!!) I have been becoming very anxious about the checkup on Friday. It is okay during the day but in wakeful sleep during the night I worry about the remaining gradient and imagine ancestor-figures dressed as cardiologists who wag long fingers at me and say "this will not last, my child." I have started to wonder how parents of children facing multiple surgeries survive. Are they in therapy with specialists for sick children? How do you reconcile the innate happiness of a child in the now and the insidious fact 'something is, or may be wrong RIGHT NOW' or tomorrow.
While down in Stanford at the playroom I met a mother and her 2.5 year old son. They were waiting for a bed before he could receive methotrexate for his leukemia. She described how they found he had cancer. They were out camping and his leg swelled up. She thought he had been bitten by an insect and took him to the local town hospital where they could find no bite, so did a scan. He had a huge blood clot and a massive area of 'tumor'. He was airlifted to Stanford where he is now an outpatient, hairless, and wearing those little knit caps often given to children in chemo.
As a parent, you are always vigilant for owies, cars, falls, bullies and other potential dangers. But once you know the details of heart defects and leukemia, how do you calm down again? Its like living with the sound of a medivac helicopter arriving on your roof every day, all the time. So, we are doing well settling into home life. Wren loves his toys and "want play diggers" and cars and animals and read books and all the other joys but to mange a metaphor hugely - there is always that "thud thud thud" in the back of my mind - and I am not looking forward to Friday's echo.
One odd thing in the post-op reports is that the numbers for Wren's pre-op and post-op gradients vary widely. On some reports the mean gradient was 41, peak flow 73, intra-operatively under anaesthesia it was 115 peak and 65-70 mean. Post-op (in OR) it was 34 mean and 61 peak. Recovery echo it was 24 mean and 41 peak (fewer angles). Pre-discharge it was 33 mean and 61 peak. In one post-op summary they say that the mean gradient pre-op was 34 (So, in some studies there was NO improvement in gradient over the AV!) Why did we do surgery if this is the case? Now, it is possible that the gradient they are measuring IS across the AV rather than the entire outflow tract area - perhaps intra-operatively they were measuring the entire obstruction rather than elements of it, although I thought that was only possible on cath. I should look up his cath numbers and see what they say. And of course, we will be able to ask Dr Olson questions on Friday.
Mum and I are hoping to go out for coffee and a pedicure today. Its cheaper than therapy!
Monday, November 17, 2008
Better night
We did better last night. Wren woke at 3am for the first time [milk & Tylenol] and then finally for the day at the now-customary 4.48am. We are now packing and drinking coffee with the dregs of the milk.
Here are a few pictures of the boys yesterday - watching koi from the bridge in the garden pond and Wren holding his digger made from balloons which we had made at the farmer's market.
Wren has not yet bathed or showered. He is very anxious undressed and barely let me wipe him down with a wet cloth last night. When he hears a bath running he worries for a long while, checking that its not Wren-bath. He does not like me to be in the shower either - running around telling everyone that Mummy is in the shower, all-done soon - until I am out.
Once again, I have no idea what to do about the tape residue all over him. It has become darker and darker as it has accrued mess and is now little black patches of sandpaper. The only thing that works is acetone but I can't use that on his skin this time!
Here are a few pictures of the boys yesterday - watching koi from the bridge in the garden pond and Wren holding his digger made from balloons which we had made at the farmer's market.
Wren has not yet bathed or showered. He is very anxious undressed and barely let me wipe him down with a wet cloth last night. When he hears a bath running he worries for a long while, checking that its not Wren-bath. He does not like me to be in the shower either - running around telling everyone that Mummy is in the shower, all-done soon - until I am out.
Once again, I have no idea what to do about the tape residue all over him. It has become darker and darker as it has accrued mess and is now little black patches of sandpaper. The only thing that works is acetone but I can't use that on his skin this time!
Another day in the sun
Today we enjoyed yet another Californian summer day. Wait, its fall... but I would not know it. Wren is feeling good, shows no sign of fatigue but still has tenderness around his belly.
We went to the Farmer's Market for a while in the morning. Unlike Seattle markets - it was full of restaurant quality booths tempting us with crepes, fresh clay oven roti (we loved watching the roti's puff against the walls of the oven) and even a tropical fruit stand selling guava's, rambutan, apple banana's (pisang susu from Indonesia) and tamarind pods. We are having a hard time keeping Wren quiet even though we carry him around. At home he rushes around following Frost and wanting to get involved in anything going on.
He is also having trouble sleeping - he wakes every half hour for many hours at night. I suspect he is in pain and have been giving him Motrin at night. He also receives lasix 1.2 mg 2X a day and is peeing ok.
We leave for Seattle tomorrow morning but we are not ready! I have so much more to write but even more to do. We are looking forward to being home, sort of. This whole period feels quite surreal and I am only reminded of its intensity off and on during the day, such as when we hear an air ambulance approaching.
We went to the Farmer's Market for a while in the morning. Unlike Seattle markets - it was full of restaurant quality booths tempting us with crepes, fresh clay oven roti (we loved watching the roti's puff against the walls of the oven) and even a tropical fruit stand selling guava's, rambutan, apple banana's (pisang susu from Indonesia) and tamarind pods. We are having a hard time keeping Wren quiet even though we carry him around. At home he rushes around following Frost and wanting to get involved in anything going on.
He is also having trouble sleeping - he wakes every half hour for many hours at night. I suspect he is in pain and have been giving him Motrin at night. He also receives lasix 1.2 mg 2X a day and is peeing ok.
We leave for Seattle tomorrow morning but we are not ready! I have so much more to write but even more to do. We are looking forward to being home, sort of. This whole period feels quite surreal and I am only reminded of its intensity off and on during the day, such as when we hear an air ambulance approaching.
Sunday, November 16, 2008
Not normal but happy
Yes, we are still here. Drinking chamomile tea and trying to relax and tell Wren to take it easy. He is still wobbly on his feet after naps and I am trying not to panic and think he had a stroke or is damaged neurologically. Granny and Josh say it is due to the effects of drugs and being in bed a week. He improves after being up half an hour.
We drove to the coast this afternoon. It was beautiful - brilliant blue skies, tepid weather - lovely big waves with a few surfers - and kept Wren in one place for a couple of hours. We carried him about but he loved to dig and explore the sand on his own.
Wren and Frost played being "geologists" in the pebbled sea-cliffs of Half Moon Bay. Wren said "I found it" and collected rocks. Frost collected "samples" for his collection.
Too tired to write but all is well. Of course I remain fearful - I jump at things and worry about how long this will last... I want it to be forever but its not.
Anyway, Wren had a great day. He remains anxious and won't bath. He dislikes having his belly or chest touched and does not like to change clothes. If he sees pictures of himself in hospital he says "Wren had owie."
I hope he feels better and regains his confidence and well-being soon. Being at the beach definitely helped.
We drove to the coast this afternoon. It was beautiful - brilliant blue skies, tepid weather - lovely big waves with a few surfers - and kept Wren in one place for a couple of hours. We carried him about but he loved to dig and explore the sand on his own.
Wren and Frost played being "geologists" in the pebbled sea-cliffs of Half Moon Bay. Wren said "I found it" and collected rocks. Frost collected "samples" for his collection.
Too tired to write but all is well. Of course I remain fearful - I jump at things and worry about how long this will last... I want it to be forever but its not.
Anyway, Wren had a great day. He remains anxious and won't bath. He dislikes having his belly or chest touched and does not like to change clothes. If he sees pictures of himself in hospital he says "Wren had owie."
I hope he feels better and regains his confidence and well-being soon. Being at the beach definitely helped.
Saturday, November 15, 2008
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.
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.
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.
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.
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