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)


Izabell said...

we will stop by and see you that dya. Izabell has the big othro apt that morning at 1030. we will be keeping you and wren in our thoughts the entire day!

Shannon said...

Hi Wyndi
I hope it works out and we are indeed visitable in the later morning. I am not trusting anything just yet!

The actual cath should be done in 2 hours so it is possible Wren would be out of the cath lab by 10.30am. I think they told us that he is in recovery for an hour and probably on the floor after that.


Jennifer said...

It is wonderful that you had the courage to write a complaint in the first place. Now, it seems you have everything squared away and had some questions answered. However, I also find it very annoying that the hospital staff and doctors just tossed you and Wren around that first time. A lot of energy, both mental and emotional, goes into scheduling surgery for your child, don't they realize? What may be just another day's work for them is your child's life that they're talking about. Argh. I can go on about this, but I won't. I will send positive energy your way and pray for you and Wren as always. He has grown to be such a handsome little man since the first time I met him on this blog. Try to enjoy every moment with him from now until cath day.

Shannon said...

I wrote a long email containing feedback and wish I had kept a copy because I thought about it a long time and really wanted to get that message across. I don't think they did anything egregiously bad like hurt my child or shout at us but I really sensed a huge divide between patient and provider experience in the whole interaction.

I think I captured it well when I wrote to Children's that "when you reschedule a child's surgery it is not like asking the parents to 'take the next bus'. It is asking them to repeat a very stressful and difficult process of facing the possible loss of their child'.

I think that some of the senior staff and residents saw it as 'all in a day's work' while it was a very big deal for us.

Thanks for your support.

Izabell said...

shannon Have you called child life specailists? t you can see if they can schedaul wren so that they can be in the recovery with him while your still not allowed. They are. I think this because they will be there to make sure wren is supported, played with bubbles singing while he is in recovery or just monitored by someone who is there for him and not only there for his medical needs. you can call them at children's line and ask for child life services and try to set it up. then on the floor they will check on him and help the stay become a little more friendly... play mat in room on floor ect.. you tell them what wren likes what you would like done for him to help keep him more comfortable and keep the hospital stay as friendly or less scary as possible. you can also sign a release to get wrens bed changed to a full bed instead of a crib so that you han sleep with him in the rrom and possuibly both get some sleep. you will not be able to leave the room with out help though because of the safety issue :bed vrs bared in crib

Lauren said...

It's interesting, my folks had the SAME problem with my mom's OHS back in November- no one point person to deal with all the issues regarding my mom - including things like post surgery follow up and oh say... coumadin levels post surgery. They had a nice talking with the folks at the U of M hospital as well and they made some significant policy changes because my dad spoke out. So good for you telling them what they need to do!

Hang in there and let me know if we can help in any way.