Wren has come down with a stomach flu. He threw up every 15 minutes or so from 6-8am and then frequently after that until a nap (and a bit during nap). He finally rested for a few hours and felt better but pediatlyte was not enough. After noon he snuck into the garden and ate raspberries. I stopped him but it was too late. A bit later there was more throwing up of raspberries and he tells me his tummy is sore. He cries. He talks about "vom vom".
It is very sad.
I just nursed him to sleep but he has woken again. He sleeps fitfully and is obviously in tummy pain.
Of course, I only hope he gets over this in time for his cath... the hope is there because Frost had a brief episode last week and was fine later in the day. But neither have had a fever.
Thursday, July 31, 2008
Wednesday, July 30, 2008
Frost is SEVEN
I have been writing almost exclusively about Wren recently but much has been going on in Frost's life. This post is to catch you up on Frost's 7th birthday and his party which was last weekend.
Frost looked forward to his birthday with great zeal. One day I asked him what he wanted to do that day and he said "plan my birthday". The next day it was "think about my birthday" and things continued this way through the countdown to Saturday 27th July. Frost had his party over a week after his actual birthday because of our vacation in Oregon. The only good thing about Wren's postponed cath was that it gave us more time to focus on birthday preparation and we used every second.
Frost's birthday party was at the Bellevue Lego Store. We had an hour of supervised 'freeplay' with Star Wars themed lego. It was a great success. Not only did the boys enjoy making their creations - fleets, armies, bases - but the lego store employees played with them creating imaginary battles between the Sith and the Jedi (their base versus the boys' creations). This made the time pass quickly. The shopping for party favors afterwards was also a lot of fun.
After the Lego store event we returned home in our minibus convoy (thanks to Susan and Brian for driving some kids) of 4 adults and 11 kids. At home we had a quest for jewels which the kids earned and found around the house. They were guided by a web-based application Josh wrote which prompted them with questions for each stage. It was pretty nifty.
Josh, Frost and I on his birthday.
Frost building his army at the Lego Store.
The board I made (and painted) with nooks to place 100 jewels earned in the quest. Frost referred to this as the Knight's Shield.
The boys (and Eve) making Sundaes.
Frost looked forward to his birthday with great zeal. One day I asked him what he wanted to do that day and he said "plan my birthday". The next day it was "think about my birthday" and things continued this way through the countdown to Saturday 27th July. Frost had his party over a week after his actual birthday because of our vacation in Oregon. The only good thing about Wren's postponed cath was that it gave us more time to focus on birthday preparation and we used every second.
Frost's birthday party was at the Bellevue Lego Store. We had an hour of supervised 'freeplay' with Star Wars themed lego. It was a great success. Not only did the boys enjoy making their creations - fleets, armies, bases - but the lego store employees played with them creating imaginary battles between the Sith and the Jedi (their base versus the boys' creations). This made the time pass quickly. The shopping for party favors afterwards was also a lot of fun.
After the Lego store event we returned home in our minibus convoy (thanks to Susan and Brian for driving some kids) of 4 adults and 11 kids. At home we had a quest for jewels which the kids earned and found around the house. They were guided by a web-based application Josh wrote which prompted them with questions for each stage. It was pretty nifty.
Josh, Frost and I on his birthday.
Frost building his army at the Lego Store.
The board I made (and painted) with nooks to place 100 jewels earned in the quest. Frost referred to this as the Knight's Shield.
The boys (and Eve) making Sundaes.
Tuesday, July 29, 2008
Follow-up to Children's last Friday
Over the weekend I submitted "Feedback" about our bad experience being bumped last Friday. I tried to make it constructive and pointed to the things that were a particular problem:
1) The fact it happened.
2) The last minute notice.
3) The lack of empathy (from everyone except the Cardiology Social Worker) and,
4) The feeling of being left without any 'advocate' in our medical team.
Today, I received a call from the Director of the Children's Heart Center - Joni Blanchard (??). She had a very easy manner and I felt she was looking for ways to do things better. She said that she had investigated what happened on Friday and it was a combination of issues. In addition to the Hospital running with little capacity, I learned that the main problem was that Dr Johnston did not request a bed when he booked Wren's cath. She did not know why he did not do so (perhaps he did not read the details enough to know the high odds of requiring an overnight stay or it could have been an error). Regardless, a bed can and should be booked beforehand despite what he told us to the contrary.
On this point, apparently our bed booking for August 7th is "contingent". This means we are on a waitlist for a solid booking and could have Wren's bed booking bumped for higher priority cases. However, on Tuesday 5th there is a "solid" bed booking available at a time Dr Jones has an opening. I am waiting to hear from Briana [surgery scheduler] whether this is first case or something later - we will have to make a decision then but a confirmed bed sounds less risky for a repeat bump.
I also asked about the continuity of care and advocacy for Wren. I wanted to know who was our point person on the Children's Staff. When you have a cardiologist it feels like you have a primary relationship with them because of the continuity of treatment. I feel that Dr Lewin is like Wren's heart care manager but perhaps they don't perceive it in that way. Perhaps they feel that the whole Heart Center works together. From a patient perspective, it seemed that once Wren was referred for cath, the cath interventionists became his entire medical team and existed in a vacuum from other areas of the hospital. I suggested to Joni B that we would like to know who is primarily looking out for Wren beside us. For example, I would have appreciated a call from our nurse at the Children's Heart Center or from Dr Lewin (who is on vacation this week it turns out). If 'our' nurse had called and said "I will make sure Dr Lewin knows what is going on" or he had called us at a later point that would have left me feeling that they 'cared' or at least was overseeing things and making sure that their patient was treated with appropriate priority.
We now have a confirmed reschedule:
Tuesday 5th August at 6.15 am (first case on early start day is 7.30am)
1) The fact it happened.
2) The last minute notice.
3) The lack of empathy (from everyone except the Cardiology Social Worker) and,
4) The feeling of being left without any 'advocate' in our medical team.
Today, I received a call from the Director of the Children's Heart Center - Joni Blanchard (??). She had a very easy manner and I felt she was looking for ways to do things better. She said that she had investigated what happened on Friday and it was a combination of issues. In addition to the Hospital running with little capacity, I learned that the main problem was that Dr Johnston did not request a bed when he booked Wren's cath. She did not know why he did not do so (perhaps he did not read the details enough to know the high odds of requiring an overnight stay or it could have been an error). Regardless, a bed can and should be booked beforehand despite what he told us to the contrary.
On this point, apparently our bed booking for August 7th is "contingent". This means we are on a waitlist for a solid booking and could have Wren's bed booking bumped for higher priority cases. However, on Tuesday 5th there is a "solid" bed booking available at a time Dr Jones has an opening. I am waiting to hear from Briana [surgery scheduler] whether this is first case or something later - we will have to make a decision then but a confirmed bed sounds less risky for a repeat bump.
I also asked about the continuity of care and advocacy for Wren. I wanted to know who was our point person on the Children's Staff. When you have a cardiologist it feels like you have a primary relationship with them because of the continuity of treatment. I feel that Dr Lewin is like Wren's heart care manager but perhaps they don't perceive it in that way. Perhaps they feel that the whole Heart Center works together. From a patient perspective, it seemed that once Wren was referred for cath, the cath interventionists became his entire medical team and existed in a vacuum from other areas of the hospital. I suggested to Joni B that we would like to know who is primarily looking out for Wren beside us. For example, I would have appreciated a call from our nurse at the Children's Heart Center or from Dr Lewin (who is on vacation this week it turns out). If 'our' nurse had called and said "I will make sure Dr Lewin knows what is going on" or he had called us at a later point that would have left me feeling that they 'cared' or at least was overseeing things and making sure that their patient was treated with appropriate priority.
We now have a confirmed reschedule:
Tuesday 5th August at 6.15 am (first case on early start day is 7.30am)
Saturday, July 26, 2008
New cath date
We have a new date for Wren's 'surgery'. He is going to be first case with Dr Jones on Thursday 7th August.
I am more comfortable with Dr Jones and not being Friday (first we were offered a Friday with Dr Johnston).
I am more comfortable with Dr Jones and not being Friday (first we were offered a Friday with Dr Johnston).
At least we scored a free sheep
During admission to the hospital patients are allowed to choose a stuffed animal and Wren chose a sheep. When we were told that the surgery could not proceed, yet, Joshua said:
"Well, if it is canceled Wren scored a free sheep!"
I think this shows that Joshua has taken the postponement of surgery much better than I have. He considers it an inconvenience but not a major one. I counter that this is because I handle the greater part of preparation, scheduling and support so the decision weighs on me more than him. The truth is that he is just less inclined to worry than I am. The main problem with rescheduling is that I will have to go through all the sleepless anxiety over again.
Here is Wren with the Free Sheep (I wanted him to choose the bunny so I shall take the bunny next time).
Here Wren and Josh watch the TV on the ceiling. Wren alternated between changing channels and pressing the Emergency Page button.
"Well, if it is canceled Wren scored a free sheep!"
I think this shows that Joshua has taken the postponement of surgery much better than I have. He considers it an inconvenience but not a major one. I counter that this is because I handle the greater part of preparation, scheduling and support so the decision weighs on me more than him. The truth is that he is just less inclined to worry than I am. The main problem with rescheduling is that I will have to go through all the sleepless anxiety over again.
Here is Wren with the Free Sheep (I wanted him to choose the bunny so I shall take the bunny next time).
Here Wren and Josh watch the TV on the ceiling. Wren alternated between changing channels and pressing the Emergency Page button.
Surgery CANCELLED
We arrived at Children's on time and Wren was admitted. We waited for half an hour in the triage area while a range of residents and nurses conducted questionnaires, took pressures and dressed Wren in his Scooby-Do hospital gown. Wren handled the "no muk" fairly well and only asked occasionally.
Finally, a nurse said that anesthesiology would be in any-minute to take Wren back.
Two minutes later, Dr Johnston (interventionalist) came in and told us that the hospital had no beds available. Since the procedure could require angioplasty and hence an overnight admission, they could not begin the procedure.
After cutting through a lot of bullshit and evasive partial-apologies it emerged that:
1) The hospital is "full" due to families choosing to have elective surgeries over the summer vacation.
2) They doubted a bed would become available until after lunch. It was a 50/50 chance. Wren could have apple juice but then would have to wait to find out.
3) If a bed became available they would have to fit Wren in around other emergency and scheduled caths so it could be evening.
4) Friday is a bad day for surgeries because the hospital seems to bump more on Friday.
5) We could wait and see or reschedule.
6) The next opening could be on Tuesday or up to 3 weeks time.
7) The only way to be sure we are not cancelled again is to have an overnight admission pre-op so we already possess the bed. This is not insurance approved or hospital policy but it can be "worked" if this is a real concern.
Can I just say F*CK again - two posts in a row?
I am alternating between anger and crying. I am just so let down after all the anxiety and preparation of the past few days. I can't seem to speak with the staff at the hospital without crying and am still intensely disappointed with the manner in which they handled the cancellation:
1) At the very last minute.
2) By only semi-apologetic senior staff who clearly wanted to just get us out of there and rescheduled.
Finally, someone sent in a Cardiology Social Worker who at least listened to my feelings and complaint. When I tried Jeanettes "this is not acceptable" Dr Johnston perked up a bit and asked that I make my complaint to the hospital.
What the Doctors do not understand is that from a patient perspective they are the hospital. A shoddy administration that cannot anticipate capacity until 20 minutes before operation reflects on the whole institution. I feel let down by cardiology as well as the schedulers.
Of course, we are all ready to be bumped for Emergency Cases - I have been prepared for that all along - but to be bumped 20 minutes before procedure because there is no 'room at the inn' is very difficult to cope with.
Finally, a nurse said that anesthesiology would be in any-minute to take Wren back.
Two minutes later, Dr Johnston (interventionalist) came in and told us that the hospital had no beds available. Since the procedure could require angioplasty and hence an overnight admission, they could not begin the procedure.
After cutting through a lot of bullshit and evasive partial-apologies it emerged that:
1) The hospital is "full" due to families choosing to have elective surgeries over the summer vacation.
2) They doubted a bed would become available until after lunch. It was a 50/50 chance. Wren could have apple juice but then would have to wait to find out.
3) If a bed became available they would have to fit Wren in around other emergency and scheduled caths so it could be evening.
4) Friday is a bad day for surgeries because the hospital seems to bump more on Friday.
5) We could wait and see or reschedule.
6) The next opening could be on Tuesday or up to 3 weeks time.
7) The only way to be sure we are not cancelled again is to have an overnight admission pre-op so we already possess the bed. This is not insurance approved or hospital policy but it can be "worked" if this is a real concern.
Can I just say F*CK again - two posts in a row?
I am alternating between anger and crying. I am just so let down after all the anxiety and preparation of the past few days. I can't seem to speak with the staff at the hospital without crying and am still intensely disappointed with the manner in which they handled the cancellation:
1) At the very last minute.
2) By only semi-apologetic senior staff who clearly wanted to just get us out of there and rescheduled.
Finally, someone sent in a Cardiology Social Worker who at least listened to my feelings and complaint. When I tried Jeanettes "this is not acceptable" Dr Johnston perked up a bit and asked that I make my complaint to the hospital.
What the Doctors do not understand is that from a patient perspective they are the hospital. A shoddy administration that cannot anticipate capacity until 20 minutes before operation reflects on the whole institution. I feel let down by cardiology as well as the schedulers.
Of course, we are all ready to be bumped for Emergency Cases - I have been prepared for that all along - but to be bumped 20 minutes before procedure because there is no 'room at the inn' is very difficult to cope with.
Friday, July 25, 2008
Cath today
Its almost time to head to Children's Hospital for Wren's cath today. We are the first case, scheduled to start at 8.30am with some time in admission and sedation before that.
Unfortunately plan Juice Hydration interfered with plan Sleep-Till-6 and so we have been awake since 4.10am with some periods of denial lying while Wren shouted and cried "Mama" and I told Josh he was going back to sleep. Some time a bit after 5am Josh dispelled the myth and we have been playing with our special new Bob the Builder Muck and Lofty duplo.
More later.
Unfortunately plan Juice Hydration interfered with plan Sleep-Till-6 and so we have been awake since 4.10am with some periods of denial lying while Wren shouted and cried "Mama" and I told Josh he was going back to sleep. Some time a bit after 5am Josh dispelled the myth and we have been playing with our special new Bob the Builder Muck and Lofty duplo.
More later.
Can I freak out about not nursing?
Wren has his cath tomorrow. We check in at 7.15am and his procedure starts at 8.30am. Sedation is somewhere in between.
I have just received the instructions for food, milk and clear liquids. He cannot have any solids or milk including breastmilk after 12.30am. He can have water, apple-juice,pedialyte or 7-UP until 4.30am and nothing after that.
7-UP at 4am?
No nursing after midnight?
F*ck.
Wren is not going to like this at all. He nurses at least twice between midnight and 8am and does not like 7-UP, water, juice or anything in a bottle at 4am. I mean, if its hot and he is really thirsty he will drink it any way but not otherwise.
I guess we will work it out but the woman who called us was an automaton without any empathy which left me with a bad taste in my mouth (or ear, rather).
I had better go out and get some apple-juice/7-up or other clear liquid in case he wakes at 4am.
I have just received the instructions for food, milk and clear liquids. He cannot have any solids or milk including breastmilk after 12.30am. He can have water, apple-juice,pedialyte or 7-UP until 4.30am and nothing after that.
7-UP at 4am?
No nursing after midnight?
F*ck.
Wren is not going to like this at all. He nurses at least twice between midnight and 8am and does not like 7-UP, water, juice or anything in a bottle at 4am. I mean, if its hot and he is really thirsty he will drink it any way but not otherwise.
I guess we will work it out but the woman who called us was an automaton without any empathy which left me with a bad taste in my mouth (or ear, rather).
I had better go out and get some apple-juice/7-up or other clear liquid in case he wakes at 4am.
Thursday, July 24, 2008
Quick update
Its Wednesday, I am tired already. I am trying not to get sick - its not anything serious but I have had painful sinus and ears for 2 days. Today Wren is grumpy - not acting sick really but his temperature was 100 when I took it, once. I doubt that is significant if not for the fact that I am feeling on the verge of something and he is seldom more than a day behind.
We had a new neighborhood cat visit us today and by chance met his owner who is a UW grad student and ... BABYSITTER! She suggested we call her if we ever need an evening babysitter. She lives over the back fence which would be super convenient.
I am feeling plump. I saw my reflection in a shop window and I had that bulge of flesh around the bra-strap on my back that signals "fatty" to my guilt.
I am contemplating a reactive dinner of salmon and vegetables to overcompensate for all the penne pasta in cream sauce that I nibbled on when Wren said "more muk NOW" instead.
Yawn.
How does the house get totally messed up in 24 hours. It was so pretty before Frost came home.
We had a new neighborhood cat visit us today and by chance met his owner who is a UW grad student and ... BABYSITTER! She suggested we call her if we ever need an evening babysitter. She lives over the back fence which would be super convenient.
I am feeling plump. I saw my reflection in a shop window and I had that bulge of flesh around the bra-strap on my back that signals "fatty" to my guilt.
I am contemplating a reactive dinner of salmon and vegetables to overcompensate for all the penne pasta in cream sauce that I nibbled on when Wren said "more muk NOW" instead.
Yawn.
How does the house get totally messed up in 24 hours. It was so pretty before Frost came home.
Sunday, July 20, 2008
Night, interrupted
We arrived home from the beach yesterday evening and everyone was happy to be home. We appreciate our Tivo, Wren was thrilled to find all his toys (and wanted to take every one out to re-possess it) and Frost was happy to find more birthday presents.
Happy 7th Birthday Frost!
However, I did not get a good night's sleep last night for the following reasons:
Happy 7th Birthday Frost!
However, I did not get a good night's sleep last night for the following reasons:
- We were woken around 3.30am by a cat trapped in the basement mewling. Josh got up and released the cat.
- I could not get back to sleep thinking about the news that my grandad died while we were away. He was 97. I did not hear the news (because, apparently, it is inappropriate to email this kind of information and nobody could reach me on the landline at the cottage). I managed to reach my cousin's wife Van in Australia and she told me that he had post-operative complications after a fall in which he broke his hip. My uncle managed to be with him before he died and a funeral is being held next Friday. My mother is leading a complex and long tour of Australian scientists and museum patrons in Namibia and I do not think she will be able to attend which will be hard for her.
- I had just got back to sleep around 4.30am when we were woken by a racoon coming in to eat cat food. We have recently installed a "racoon proof" catdoor with magnetic entry for the cats. It seems the racoons have learned to get in by tapping the door, catching the flap and lifting it up to get in (it is locked if you try and push it in but not swinging and lifting). Josh got up to chase them away.
- I could not get back to sleep worrying about Wren's upcoming cath and the news that Marin's surgeon told her mother [Marin had the subaortic surgery a year ago] the area had not grown post-surgery and that this meant a more aggressive approach was needed. I kept wondering what would be suggested for Wren and whether it would work.
- Wren woke to nurse at 5am. He slept till 6.30am but I had only just got to sleep because my neck was very painful. Yesterday I tore a muscle in my neck while running after Frost in the park. I can't rotate or look up and this makes rolling over in bed very sore. I am walking like a robot and rotating from the waist. Ouch.
The night is over. Its morning and we are all awake except Josh who will sleep till noon to recover from the vacation of early risings and all those animal intruders overnight.
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