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).

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.


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.

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.

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?


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.


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:

  • 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.