We have recently returned to the house from the hospital. It was a very long day and we have learned a great deal about the hospital. The only thing we failed to complete was the urine sample!
Wren had an EKG, echo, 5cc's of blood drawn (while sedated), clinic vitals and an MRI. The MRI took 2 hours and was the most invasive procedure. For sedation, Wren received versed which made him relaxed and conversational. He did not get very upset when they put the mask on him to put him under.
The goal of the MRI was to explore his heart function - the LV in particular. Since he had never had an MRI we were interested to see what was learned. There was some good news - Wren's LV has no EFE. Endocardial fibroelastosis can be seen on MRI as a white lining to the LV. That there is none is good!
We spoke with Hanson Quan, one of Dr Hanley's PAs. He obtained consent for surgery and told us that Wren is scheduled as second case, running partly concurrent with the first case which will overlap in the neighboring OR. He confirmed what many of you have told us, that there is a likelihood of getting delayed if a bed is not available in the CVICU (or if there is not ward room for a child being released from CVICU). However, based on current bed movement they are optimistic that Wren's case will go ahead tomorrow. A delay of a few hours is not uncommon and the anesthesia ppl were discussing leaving in the foot port access to rehydrate him if there is a delay. They decided it was too complicated and removed it to Wren's great joy.
Surgery Plan
Tomorrow the plan is for a 7am check in for a 9am case. Anesthesia and stuff would happen first so we may release him to the OR as early as an hour before.
We also discussed the surgery with Dr Quan. He said it is expected to last 6 hours from first anesthesia to recovery. He would expect Wren to remain sedated for 24 hours but be extubated around that time (or perhaps within first 24).
He explained that there had been a long discussion about Wren's case at their cardiology conference the week before. The discussion had been about the benefits of a single ventricle anatomy (if mitral valve failed) or a valve replacement if the aortic valve was poorer than hoped.
They also discussed the Ross-Kono and we repeated our concerns.
The plan NOW is to do the sub and supra valvar repairs as well as enlarge the aortic valve if possible.
The expectation is that valve repair will result in some aortic valve regurgitation. This lets some blood flow back into the LV and over time leads to left ventricle distension (enlargement). Currently, the LV is thick and muscular. However, Wren will have to be watched to see whether this regurg is manageable or is damaging his heart further to the point of needing more surgery.
The next surgery could be a valve replacement or "tweaking". But the goal is to get him years out of this procedure and they are quite hopeful of it being a success. The idea being that if he is quite a bit older when he needs a valve replacement he may be able to have an adult size valve.
We can but hope.
How is Wren Doing?
Wren is grumpy and upset at the hospital. He kept saying he wanted to go home and was scared (particularly at the echo). He did not like having no milk and said he wanted more milk NOW many times.
I am looking forward to him being in recovery, stable, being made comfortable so I don't have to think of putting him through this again any time soon.
Friday, November 7, 2008
Thursday, November 6, 2008
Flight of the Hedgehogs
I wanted to post these few pictures of our flight today. Wren was very excited at the airport and kept wanting to get down and rub his hands on things. I think I went through half a bottle of Purell just getting him on the plane and then I sat down to read my magazine (Mother Jones) and it had a two page article on the perils and evils and mass-marketing of germ-hysteria. I consider myself a special case at the moment (sticking bacitracin up your nose puts you in a class by yourself, right?) so I continued to use my poisonous wipes and potions but I did check the ingredients against the most carcinogenic components.
Here, Granny holds Wren before we head through the security checkpoints. It took ages to get through because we had so much stuff with the stroller, carseat and both our laptops as well as the usual travel luggage for a toddler.
When we were on the plane and the engines fired up, Wren became very sad. He said "very scared. Too noisy. All gone. GET OFF" Thankfully we distracted him with grapes and hedgehog and he fell asleep as soon as we leveled off (thanks to some baby-whispering by Josh).
He enjoyed the rest of the flight although the decent through clouds worried him. I drank an entire can of tomato juice (a big one) and I thought how much Frost would enjoy being able to order a soda when he comes to join us.
Over the last week, Mum has influenced me to drink a lot of tea. Tea=having a break so it has been fun to have tea-parties with the boys, sitting at table with nice cups and a cookie each. Both boys have been drinking tea but Wren really loves it and enjoys holding his precious china cup himself and saying "more tea??" after his first cup.
I spoke with Suzie (Seattle mom at LPCH) and she mentioned that many families at RMH had faced a surgery delay of a few days. I know this is possible but I am dreading that awful countdown where you wonder if its going ahead and what will happen if it does OR if it doesn't. I guess we are heading towards the precipice and we have done all we can for things to go well.
Here, Granny holds Wren before we head through the security checkpoints. It took ages to get through because we had so much stuff with the stroller, carseat and both our laptops as well as the usual travel luggage for a toddler.
When we were on the plane and the engines fired up, Wren became very sad. He said "very scared. Too noisy. All gone. GET OFF" Thankfully we distracted him with grapes and hedgehog and he fell asleep as soon as we leveled off (thanks to some baby-whispering by Josh).
He enjoyed the rest of the flight although the decent through clouds worried him. I drank an entire can of tomato juice (a big one) and I thought how much Frost would enjoy being able to order a soda when he comes to join us.
Over the last week, Mum has influenced me to drink a lot of tea. Tea=having a break so it has been fun to have tea-parties with the boys, sitting at table with nice cups and a cookie each. Both boys have been drinking tea but Wren really loves it and enjoys holding his precious china cup himself and saying "more tea??" after his first cup.
I spoke with Suzie (Seattle mom at LPCH) and she mentioned that many families at RMH had faced a surgery delay of a few days. I know this is possible but I am dreading that awful countdown where you wonder if its going ahead and what will happen if it does OR if it doesn't. I guess we are heading towards the precipice and we have done all we can for things to go well.
Bacitracin tastes bad in the nose
Our flights were uneventful which is always a good thing. Uneventful+flight. YES! We even arrived in San Jose early.
We have checked into the Stanford Inn for one night and hope to arrange our housesitting plan this evening. We have even been offered the car!
Meanwhile we are lugging huge amounts of luggage [why did I think Wren needed all his toys?]
I have left a message to speak to our 'contact' through SeattleCHD support group but right now we are going out to eat a Fish Taco. According to Josh, tacos in California are better than elsewhere!
I put bacitracin in my nostrils during our flight. According to a link sent by a friend, this helps avoid airborne infection. Yuck. The stuff still smells bad - like a petrochemical leak! I sure hope it was effective for the yucky smell/taste.
We have checked into the Stanford Inn for one night and hope to arrange our housesitting plan this evening. We have even been offered the car!
Meanwhile we are lugging huge amounts of luggage [why did I think Wren needed all his toys?]
I have left a message to speak to our 'contact' through SeattleCHD support group but right now we are going out to eat a Fish Taco. According to Josh, tacos in California are better than elsewhere!
I put bacitracin in my nostrils during our flight. According to a link sent by a friend, this helps avoid airborne infection. Yuck. The stuff still smells bad - like a petrochemical leak! I sure hope it was effective for the yucky smell/taste.
Wednesday, November 5, 2008
Thursday schedule
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.
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.
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.
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