Friday, August 1, 2008

Stinky Poo

This morning Wren had a particularly obnoxious poop in his diaper. As I changed it, he had me in fits saying "stinky poo" with a theatrical grimace. I don't think I have posted Wren speaking, so here he is in "Stinky Poo."

Wren much recovered

We have not had any throwing up for about 21 hours which is a very good sign. Wren still has low appetite for anything but "muk" and applesauce and still has an upset stomach. Still, I consider him on the mend. He is a bit more sleepy and clingy but nothing like yesterday.

Josh is working from home today so I can keep afternoon appointments after I had to cancel our babysitter. Frost is in dragon drawing camp.

My mother, who has been on a grand natural history tour of Namibia, Zambia and South Africa should have reached the relative civilization of Cape Town. I hope to catch up with her soon.

Thursday, July 31, 2008

Quick Update - Wren is sick

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.

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.

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)