This afternoon I spoke with a PA at Stanford about Wren's pre-op appointments. I learned that he will be having an MRI on Thursday morning. He will not be able to eat solids after midnight or nurse between 7am and the sedation at 10am. Here is our schedule:
7.15am Registration and admitting
7.30am Clinic
8.30am Echo and EKG
10.00am MRI Check-in for sedation
10.30am MRI
11.30am Consultation
LUNCH
I think there will be an X-ray done at some point as well as a blood draw. Perhaps they can do those while he is sedated. We will learn more on Thursday.
Meanwhile, plans for non-hotel accommodation are looking extremely hopeful. When we arrive on Wednesday, we are going to meet a Stanford family who will be away for much of November. Through a friend of our neighbors, they have kindly offered to let us stay in their home on campus. This seems so wonderful that I am unable to believe it but they have said we can come over Wednesday PM to learn the ropes.
Josephine, the facilitator of our local CHD support group, has put me in touch with another Seattle family who have been down at Stanford for a month. Their newborn preemie (twin) who had an interrupted aortic arch repaired. They are being discharged on Thursday but I hope to speak with them and get advice to make our stay easier.
Wednesday, November 5, 2008
Yes, I have a new cellphone with the same number
In case you wondered. I never found the other one. I may not have your number in my cell yet (or ever again if I have lost the original) but you are welcome to call ME!
Almost ready
Its Tuesday - Election Day of course - and the last day I have for packing before we leave for Stanford & surgery. Since Mum arrived last week we have been very busy and the days have flown by.
I hope to have time to post a few pictures tonight but my desk is overflowing with documents and bills which have to be resolved before we leave, or worse, remembered in order to get on the plane.
Wren has not been helping. He has not adjusted to daylight saving and so is waking at 4.30am for the day. I keep the room dark for half an hour or so but it is a very early day and means you will not catch me up at 10pm.
So, here are a few details:
1) We leave tomorrow mid-morning. Our flight is at noon.
1B!) Frost will be in school on Wednesday as 'usual' as can be.
2) We will be spending Wednesday and Thursday night in a hotel but there is a chance (still unconfirmed) that we may be able to stay a few weeks at a friend's friends home on campus. We shall know more later.
3) Wren has a pre-op day full of appointments on Thursday 6th. We check in for the first appointment at 7.30am. He has X-ray, echo, EKG, anesthesia consult, blood draw, we meet Dr Hanleys PA and we see the lactation consultant. We will be told his surgery TIME if all goes well.
4) During surgery and recovery we may or may not have cellphones on. We will wait in the family waiting room of the cardiac unit (according to the pamphlet!) It should have internet connectivity but we can also be called via the waiting room phone: 650 498-2135.
5) We have been told that we may NOT receive updates during surgery so do not become fearful if we do not post progress reports. We will post as soon as we know anything and have a minute :) I may call and ask someone else to post and update for me.
6) Frost is staying in Seattle with Granny for at least a week. They may fly down next Thursday.
What do we need? Many of you have kindly offered help and assistance. I apologise if I have not returned calls. I am overwhelmed with everything. Here are some things we need:
1) IF Frost and Granny come down to Palo Alto they would appreciate a ride to the airport. We seem to be throwing money at everything recently and this would help. Driving our car is an option.
2) While FROST & Granny are away from 14th perhaps - we will need help feeding and visiting the cats.
3) Frost might like some playdates - the DON'T GET SICK thing still applies but is less urgent. IF Frost is sick he will not be able to visit Wren and will put Wren at risk of developing a cold during recovery.
4) Food: it would be great to have some frozen dinners delivered in the next week. Mum is trying to cook up some dinners to have on hand for when we return but I know that it would be lovely to have a few extras and not put it all on her plate (pun intended!)
5) Frost has never been away from both parents for more than one night. Please be supportive of him and give him a bit of extra TLC. He is quite comfortable at home and is not showing signs of anxiety but likes to play toddler games and is being a real dork after a week off school and playdates. I suspect he is bored and wants more attention!
THANKS So much to those who have dropped or mailed toys and gifts for Wren. I am going to email you personally but I just wanted to say that Okapi and Hedgehog will be making the journey with us and are already much beloved. Okapi is snuggled by Wren while Hedgehog seems to like extreme sports and to make Wren giggle like a Youtube.baby.
I hope to have time to post a few pictures tonight but my desk is overflowing with documents and bills which have to be resolved before we leave, or worse, remembered in order to get on the plane.
Wren has not been helping. He has not adjusted to daylight saving and so is waking at 4.30am for the day. I keep the room dark for half an hour or so but it is a very early day and means you will not catch me up at 10pm.
So, here are a few details:
1) We leave tomorrow mid-morning. Our flight is at noon.
1B!) Frost will be in school on Wednesday as 'usual' as can be.
2) We will be spending Wednesday and Thursday night in a hotel but there is a chance (still unconfirmed) that we may be able to stay a few weeks at a friend's friends home on campus. We shall know more later.
3) Wren has a pre-op day full of appointments on Thursday 6th. We check in for the first appointment at 7.30am. He has X-ray, echo, EKG, anesthesia consult, blood draw, we meet Dr Hanleys PA and we see the lactation consultant. We will be told his surgery TIME if all goes well.
4) During surgery and recovery we may or may not have cellphones on. We will wait in the family waiting room of the cardiac unit (according to the pamphlet!) It should have internet connectivity but we can also be called via the waiting room phone: 650 498-2135.
5) We have been told that we may NOT receive updates during surgery so do not become fearful if we do not post progress reports. We will post as soon as we know anything and have a minute :) I may call and ask someone else to post and update for me.
6) Frost is staying in Seattle with Granny for at least a week. They may fly down next Thursday.
What do we need? Many of you have kindly offered help and assistance. I apologise if I have not returned calls. I am overwhelmed with everything. Here are some things we need:
1) IF Frost and Granny come down to Palo Alto they would appreciate a ride to the airport. We seem to be throwing money at everything recently and this would help. Driving our car is an option.
2) While FROST & Granny are away from 14th perhaps - we will need help feeding and visiting the cats.
3) Frost might like some playdates - the DON'T GET SICK thing still applies but is less urgent. IF Frost is sick he will not be able to visit Wren and will put Wren at risk of developing a cold during recovery.
4) Food: it would be great to have some frozen dinners delivered in the next week. Mum is trying to cook up some dinners to have on hand for when we return but I know that it would be lovely to have a few extras and not put it all on her plate (pun intended!)
5) Frost has never been away from both parents for more than one night. Please be supportive of him and give him a bit of extra TLC. He is quite comfortable at home and is not showing signs of anxiety but likes to play toddler games and is being a real dork after a week off school and playdates. I suspect he is bored and wants more attention!
THANKS So much to those who have dropped or mailed toys and gifts for Wren. I am going to email you personally but I just wanted to say that Okapi and Hedgehog will be making the journey with us and are already much beloved. Okapi is snuggled by Wren while Hedgehog seems to like extreme sports and to make Wren giggle like a Youtube.baby.
Saturday, November 1, 2008
Quick update
We had fun trick or treating tonight. Wren was a little red dragon and Frost was a cowboy with a fake beard and mustache. Both were very motivated to "tick or teat?" [said in a high voice like a little bird] as Wren puts it.
Frost wearied of carrying his candy bag after a while, it was extremely full.
None of us is ill (touch wood) - Frost's morning of sniffles resolved - and although I have moments of panic when I hear someone cough or have a sun-sneeze, we seem to be doing OK for now.
I have yet to start packing anything.
I think I am in a kind of denial and taking it step by step. This step is to get over the weekend without illness. At that point I will start to throw things into bags.
I have managed to buy a replacement cellphone (if you find a white Virgin phone lying around you can recycle it!) with the same number. I have also been arranging basics like carpool for Frost (thanks Reiko) and building up a pile of toys to distract Wren in adversity. We still need more.
Mum and I had a quick trip to Value Village this morning and I found a pair of suede Birkenstocks in my size. They are brand new and feel fabulous so I had some luck! We also bought some Playmobil Union and Confederate soldiers for Frost which pleased him mightily.
I know that the reality of going away is creeping up on me. Last night I had a nightmare that it was Wren's surgery this morning and I had forgotten to stop him nursing in the night. I am also anxious and sad about leaving Frost for a week. I have never been away from him for that long before - the longest has been 2 nights for meditation retreat some years ago! He does not seem worried about it but I know I will miss him.
Tomorrow I have to do some errands but Mum and I hope to have time to take the kids for a walk in Discovery Park and perhaps have some fish on the wharf. Wren likes to watch the boats and seagulls. They both like the hunt for mushrooms in the forest.
The whole heart surgery thing seems surreal in this context.
Frost wearied of carrying his candy bag after a while, it was extremely full.
None of us is ill (touch wood) - Frost's morning of sniffles resolved - and although I have moments of panic when I hear someone cough or have a sun-sneeze, we seem to be doing OK for now.
I have yet to start packing anything.
I think I am in a kind of denial and taking it step by step. This step is to get over the weekend without illness. At that point I will start to throw things into bags.
I have managed to buy a replacement cellphone (if you find a white Virgin phone lying around you can recycle it!) with the same number. I have also been arranging basics like carpool for Frost (thanks Reiko) and building up a pile of toys to distract Wren in adversity. We still need more.
Mum and I had a quick trip to Value Village this morning and I found a pair of suede Birkenstocks in my size. They are brand new and feel fabulous so I had some luck! We also bought some Playmobil Union and Confederate soldiers for Frost which pleased him mightily.
I know that the reality of going away is creeping up on me. Last night I had a nightmare that it was Wren's surgery this morning and I had forgotten to stop him nursing in the night. I am also anxious and sad about leaving Frost for a week. I have never been away from him for that long before - the longest has been 2 nights for meditation retreat some years ago! He does not seem worried about it but I know I will miss him.
Tomorrow I have to do some errands but Mum and I hope to have time to take the kids for a walk in Discovery Park and perhaps have some fish on the wharf. Wren likes to watch the boats and seagulls. They both like the hunt for mushrooms in the forest.
The whole heart surgery thing seems surreal in this context.
Thursday, October 30, 2008
A Murder of Crows & no RMH
While Wren was napping this afternoon the house was besieged by crows. There were about 100 of them. They perched on the wires facing our house, filled the cedars to either side of us and watched us from the tall trees across the road. I cannot recall the correct word for a crow noise but it was not just cawing. It was shrieking and rasping and kwarking.
Their complaint?
Our fake crow Halloween decoration had fallen to the ground overnight and looked injured or dead. Some feathers had come off and a pinkish foam was revealed.
I went out (into the hubub) and brought it inside. They investigated then slowly dispersed. We now have a regular number of crows hanging about.
I also received a call from Ronald McDonald House to say that the big Mac did not have space for us during our stay. They have referred us to another neighborhood Inn at a discounted rate. We shall see and compare.
Their complaint?
Our fake crow Halloween decoration had fallen to the ground overnight and looked injured or dead. Some feathers had come off and a pinkish foam was revealed.
I went out (into the hubub) and brought it inside. They investigated then slowly dispersed. We now have a regular number of crows hanging about.
I also received a call from Ronald McDonald House to say that the big Mac did not have space for us during our stay. They have referred us to another neighborhood Inn at a discounted rate. We shall see and compare.
Frost has a sniffle
Frost has been blowing his nose this morning. He is super-vigilant about washing his hands and talks about germs. In the morning paper there was an article about rhinovirus surviving 48 hours on household surfaces. In a study of people with early cold symptoms they found the virus on fridge handles, remote controls, bathroom faucets, light switches and other commonly touched surfaces a few days later.
At this point I guess we just wait and see who gets what and what happens. There is nothing more I can do about it.
Meanwhile, Mum arrives from Australia this afternoon. She is coming via San Francisco and should be landing there soon. That will keep us happy and busy for the next few days and allow me to get things packed and ready if we do manage to keep well enough to go.
Here is the Frostism of the morning:
FROST: Daddy gets to do lots of special things in his secret times.
ME: When are his secret times?
FROST: Its between 10.30pm and 2am when we are not here.
ME: What do you think he does?
FROST: He gets to eat snack, do stuff on his computer and play video games.
At this point I guess we just wait and see who gets what and what happens. There is nothing more I can do about it.
Meanwhile, Mum arrives from Australia this afternoon. She is coming via San Francisco and should be landing there soon. That will keep us happy and busy for the next few days and allow me to get things packed and ready if we do manage to keep well enough to go.
Here is the Frostism of the morning:
FROST: Daddy gets to do lots of special things in his secret times.
ME: When are his secret times?
FROST: Its between 10.30pm and 2am when we are not here.
ME: What do you think he does?
FROST: He gets to eat snack, do stuff on his computer and play video games.
Tuesday, October 28, 2008
Unschooling
*******NOTE: I HAVE MISLAID MY CELL PHONE FOR 4 DAYS. I WILL NOT ANSWER OR RECEIVE MESSAGES ON IT UNTIL IT IS FOUND.*********
We have decided to take keep Frost out of school until we leave to reduce the chance of contracting one of the fall infections going around. Of course, this is not guaranteed to work and Frost had a clear sniffle this afternoon. I guess we are doing our best and if he gets a cold and then Wren gets a cold it is just the way things will be.
We leave in 9 days - the day after election day - so he may have the chance to overcome a mild virus but not one of the seasonal coughs and colds that linger.
We had a good day of no-school. We took a bicycle ride around Magnuson park and watched diggers and rollers and compactors making playing fields. We discovered mushrooms hidden under leaves and threw stones into Lake Washington. For snack, we harvested some apples overgrown with brambles. Frost found a long stick and poked some down from a tree and Wren gnawed on one. They were deliciously crisp, sweet and cold.
Frost was interested in mushrooms and wondered whether gills versus pores was an identifying feature. I have promised to show him the mushroom identification guide this evening when the noisy-throwing-one goes to sleep.
Later this afternoon we opened our bale of straw and started to spread it around the yard. Frost lost a bouncing ball over the fence (ever time we play outside he loses a toy over the fence!)
Its time for bathtime and the bedtime roller-coaster.
We have decided to take keep Frost out of school until we leave to reduce the chance of contracting one of the fall infections going around. Of course, this is not guaranteed to work and Frost had a clear sniffle this afternoon. I guess we are doing our best and if he gets a cold and then Wren gets a cold it is just the way things will be.
We leave in 9 days - the day after election day - so he may have the chance to overcome a mild virus but not one of the seasonal coughs and colds that linger.
We had a good day of no-school. We took a bicycle ride around Magnuson park and watched diggers and rollers and compactors making playing fields. We discovered mushrooms hidden under leaves and threw stones into Lake Washington. For snack, we harvested some apples overgrown with brambles. Frost found a long stick and poked some down from a tree and Wren gnawed on one. They were deliciously crisp, sweet and cold.
Frost was interested in mushrooms and wondered whether gills versus pores was an identifying feature. I have promised to show him the mushroom identification guide this evening when the noisy-throwing-one goes to sleep.
Later this afternoon we opened our bale of straw and started to spread it around the yard. Frost lost a bouncing ball over the fence (ever time we play outside he loses a toy over the fence!)
Its time for bathtime and the bedtime roller-coaster.
Saturday, October 25, 2008
Spiderwalk and a little illness
The kids are obsessed with Halloween and it seems to have been going on forever. Wren throws tantrums on car trips when we drive past "'alloweens" too fast for him to gaze upon. This evening Frost went to the Zoo Pumpkin Prowl with Zephyr and came back with his first stash of (mostly healthy) treats.
Wren is so compelled by Halloween that he insisted on taking "big spider" to the park with us. These are the pictures at the park on Monday.
Wren brings the spider to the park. It is hard to carry and one leg keeps falling off.
The spider discovers puddles of water and gets "bit wet".
Spider tries hanging on a bar. Wren can do it too.
Spider goes for a swing. Other children gather to look at spider and I scan them for signs of imminent sneeze and respiratory distress. One little girl is covered in mucus and keeps wanting to take spider. I suggest we take spider for a walk up the hill and Wren chases and throws him down again.
Last night Wren had a very interrupted sleep - waking about 5 times for varying lengths and seeming to settle with Tylenol. This morning he told me he had sore ear, sore throat and sore head. I don't think that was all true but his lymph nodes are swollen and he may have had a sore tummy. Its possible he is a bit allergic to Kiwi fruits which he had for the first time yesterday but since Frost woke with a painful upset stomach (and was off school) it may be a virus. He seems fine at bedtime but is a little stuffy in the nose and snores lightly.
Wren is so compelled by Halloween that he insisted on taking "big spider" to the park with us. These are the pictures at the park on Monday.
Wren brings the spider to the park. It is hard to carry and one leg keeps falling off.
The spider discovers puddles of water and gets "bit wet".
Spider tries hanging on a bar. Wren can do it too.
Spider goes for a swing. Other children gather to look at spider and I scan them for signs of imminent sneeze and respiratory distress. One little girl is covered in mucus and keeps wanting to take spider. I suggest we take spider for a walk up the hill and Wren chases and throws him down again.
Last night Wren had a very interrupted sleep - waking about 5 times for varying lengths and seeming to settle with Tylenol. This morning he told me he had sore ear, sore throat and sore head. I don't think that was all true but his lymph nodes are swollen and he may have had a sore tummy. Its possible he is a bit allergic to Kiwi fruits which he had for the first time yesterday but since Frost woke with a painful upset stomach (and was off school) it may be a virus. He seems fine at bedtime but is a little stuffy in the nose and snores lightly.
Wednesday, October 22, 2008
Stanford Surgery package arrived
We now have lots of homework and information to complete. Some points and issues:
1) Wren will need 4 units of blood during surgery. Do we want to offer our blood for him? We may not be able to be designated donors because They require blood 48 hours prior to surgery to allow time for processing and testing. We can either provide "designated donors" or use the general blood supply. Josh would like to donate if he can. I am investigating.
2) We need to know Wren's blood type. This is not in the notes I have. It may be in his chart records I requested but I have mislaid them in the reorganization of the office. If I can't find them and we can't get them from Children's he will need a blood draw for blood typing at our pediatricians.
3) We check in for pre-op at 7.30am on the 6th November. We need to give Wren a good bath the night before surgery. The actual surgery time will be posted on the pre-op day and we will be advised at that time.
4) If Wren gets sick between now and surgery we need to see our pediatrician to evaluate whether he can have surgery. In general, he cannot have respiratory infection or fever or exposure to chickenpox. Diarrhea and other conditions may delay surgery too.
5) Child Life only consults with children age 3+. I am going to investigate this. We really liked Child Life's involvement up here.
6) There is no sleeping in the CICU rooms - you are supposed to stay and sleep in the Parent Waiting Room nearby. The ward rooms usually provide a sleeping facility.
7) We will be approached to consent for Wren to participate in 2 clinical trials. One deals with post-operative wound infection through the application of silver dressings to the sternal wound. The other involves the use of heparin post-operative. The latter is endorsed by Dr Hanley, our surgeon.
Got to run. Hoping the floor installation shows significant progress and Wren is still napping a short while more.
EDIT: We have found the medical records. Wren has A+ blood type. I am B+. Joshua does not know his. The kitchen floor is done!!
1) Wren will need 4 units of blood during surgery. Do we want to offer our blood for him? We may not be able to be designated donors because They require blood 48 hours prior to surgery to allow time for processing and testing. We can either provide "designated donors" or use the general blood supply. Josh would like to donate if he can. I am investigating.
2) We need to know Wren's blood type. This is not in the notes I have. It may be in his chart records I requested but I have mislaid them in the reorganization of the office. If I can't find them and we can't get them from Children's he will need a blood draw for blood typing at our pediatricians.
3) We check in for pre-op at 7.30am on the 6th November. We need to give Wren a good bath the night before surgery. The actual surgery time will be posted on the pre-op day and we will be advised at that time.
4) If Wren gets sick between now and surgery we need to see our pediatrician to evaluate whether he can have surgery. In general, he cannot have respiratory infection or fever or exposure to chickenpox. Diarrhea and other conditions may delay surgery too.
5) Child Life only consults with children age 3+. I am going to investigate this. We really liked Child Life's involvement up here.
6) There is no sleeping in the CICU rooms - you are supposed to stay and sleep in the Parent Waiting Room nearby. The ward rooms usually provide a sleeping facility.
7) We will be approached to consent for Wren to participate in 2 clinical trials. One deals with post-operative wound infection through the application of silver dressings to the sternal wound. The other involves the use of heparin post-operative. The latter is endorsed by Dr Hanley, our surgeon.
Got to run. Hoping the floor installation shows significant progress and Wren is still napping a short while more.
EDIT: We have found the medical records. Wren has A+ blood type. I am B+. Joshua does not know his. The kitchen floor is done!!
Monday, October 20, 2008
If an asteroid struck earth would Wren's surgery be delayed?
I didn't get a good sleep last night. Wren woke at 2.30pm and his desire for 'milk' borders on pugnacious. I have been trying to wean him from his multiple night nursing so I let him cry a while. Eventually, he became hysterical and cried "Mummy come back! Mummy gone out," so I rushed in to console him. He was live wired and hiccoughing and it took half an hour to get him back to sleep (without nursing) then he woke when I tried to creep out. I caved after an hour and a quarter and nursed him to sleep.
For the final hour of sleep I had vivid dreams.
We were in Stanford and Dr Hanley and his team of cardiologists was trying to speak with us about Wren's case the following day. The problem was that I was like one of those old people in a recliner with a tartan blanket over my legs and I kept falling asleep while he was talking. Finally, I decided that it would be okay to fall asleep and let them handle everything.
But I was woken from my sleep, still in the hospital, by a giant explosion in the sky.
I looked up and a huge black cloud was barreling outwards expelling pieces of things from space. There was an ironing board, pieces of a plane, ropes, buildings - all exploding outwards at 30 000 feet. In retrospect it was an image from a show called Time Warp in which we watched men blending up cellphones in slow motion.
After the first explosion there was a period in which it became like a firework display with triangles of blue lights moving in slow arcs. I thought "ah, its an alien invasion."
Everyone started running to hide from the debris that fell from space. It was raining huge raindrops of molten stone and the sky was cut up by lines of billowing black clouds and chunks of cars thudded down.
Eventually, things quieted down and nobody nearby was injured. Crowds of people gathered in the hospital room and discussed what it was. Someone asked whether it was Aliens (which is what I thought) but a doctor said he had received word from NASA that earth had been hit by a huge asteroid and "they are sending a fleet of jumbo jets into the cloud to see what's in there."
I just thought "F*ck. Will Wren get his surgery tomorrow?"
For the final hour of sleep I had vivid dreams.
We were in Stanford and Dr Hanley and his team of cardiologists was trying to speak with us about Wren's case the following day. The problem was that I was like one of those old people in a recliner with a tartan blanket over my legs and I kept falling asleep while he was talking. Finally, I decided that it would be okay to fall asleep and let them handle everything.
But I was woken from my sleep, still in the hospital, by a giant explosion in the sky.
I looked up and a huge black cloud was barreling outwards expelling pieces of things from space. There was an ironing board, pieces of a plane, ropes, buildings - all exploding outwards at 30 000 feet. In retrospect it was an image from a show called Time Warp in which we watched men blending up cellphones in slow motion.
After the first explosion there was a period in which it became like a firework display with triangles of blue lights moving in slow arcs. I thought "ah, its an alien invasion."
Everyone started running to hide from the debris that fell from space. It was raining huge raindrops of molten stone and the sky was cut up by lines of billowing black clouds and chunks of cars thudded down.
Eventually, things quieted down and nobody nearby was injured. Crowds of people gathered in the hospital room and discussed what it was. Someone asked whether it was Aliens (which is what I thought) but a doctor said he had received word from NASA that earth had been hit by a huge asteroid and "they are sending a fleet of jumbo jets into the cloud to see what's in there."
I just thought "F*ck. Will Wren get his surgery tomorrow?"
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