trip to philly .....maybe?

I am always amazed that days in the hospital can go by so quickly and yet seem so long.  There are days when I look at the clock thinking, how can it already be 5 pm?  I've been in this room all day and it feels like I have done nothing.  But tending to a three year who has developed some major anxiety can keep you really busy!

It has gotten to the point that any time we pull out detachol (it's magic in a bottle that gets sticky tape off skin) or put on masks, she immediately starts to cry.  Masks are worn for all dressing changes.  So when you have five chest tubes and two IV's, it seems all the day consists of is dressing changes.  Her anxiety has also expanded to loud voices and crowds.  Unfortunately, those are also not easily escaped, especially when you're so cute.  We are trying to manage it by keeping her nurses the same, explaining everything that is happening and trying when possible to keep extra 'friends' out of her room.

This past week has been filled with small setbacks.  Monday afternoon we were prepared to bring her off the vent but the team was still very concerned about her drainage.  They decided to postpone extubation.  They reached out to a handful of other hospitals to see if any were able to do lymphatic imaging.  We were trying to gather any data possible to send to Children's Hospital of Philadelphia.  Any procedure would require her to be intubated, so the team thought it best to wait a day and find out if any facility could help.  Since none had the capabilities, we removed Lucy from the vent Tuesday morning.  After coming off the ventilator, she was put on high flow oxygen, so her nose is completely obstructed.  She has her NJ tube in the right nostril, the NG tube in her left nostril and the oxygen cannula over both of them.  Luckily none of it seems to bother her all that much.

She was still displaying signs of major discomfort, which was due to constipation.  Her x-ray showed a mass that was not moving.  Two days of enemas and Mira LAX and she was a different girl.  As we started talking about feeds, the NG tube that was sucking out blood and bile from her stomach started to consist of mostly blood.  They called in the GI doctor and they think she developed a stomach ulcer, coupled with the heparin, the bleed was not clotting.  The heparin was stopped but we are still seeing a lot of stomach bile.  We are not sure what the next steps will be except to continue to give medication to help heal.  Then we saw a partial collapse of her upper right lung, we started treatment and with in a day it was showing improvement.  Because of the aforementioned anxiety, we ended up stopping treatments as soon as we could.  When she is grabbing and crying for them to stop, sometimes you just have to throw in the towel.

On Thursday, Dr. Penk came to talk to us about the likelihood of going to CHOP.  It is the only hospital that does lymphatic system imaging and intervention.  At the end of last week, her drainage was still pretty high, so we decided to start all the paperwork for the procedure and transfer.  Since it was nearing the weekend and a holiday weekend at that, we don't have a lot of information.  But here's the gist, the doctors use dynamic contrast MR lymphangiography to identify abnormally leaky vessels and then occlude them.  This stops the drainage and then she can heal.  We know transport will be out of Midway and one of us can go with her.  That means one of us will need to book a flight last minute to get out there.  We also have no idea of recovery time or if we know the lymphangiography works, that we can come back to Advocate to finish the rest of her recovery. I really don't want to leave Advocate, it scares me to death...new doctors, nurses, new everything.  But I also know, if they are telling us this is our best option, we have to try it.   The earliest we would go out to Philadelphia is Thursday, however, if the team feels that the drainage is slowing down, we can postpone.

On top of being extubated another big accomplishment for Lucy is she sat all by herself.  She was so proud, she gave me a smile.  It has been over 3 weeks since has sat without any support, so we applaud even the littlest of milestones

 And she got some of her friends to join in on the fun.

Another milestone we hit was first haircut.  Although not planned, as you can see from the picture below it was a MUST.  A big thank you to our friend Katie for her help in making it a great experience!

We have a little time to let the back grow out, but at least she is not laying on a dreadlock.

 We are continuing to pray that her drainage decreases and ask that new prayers for Lucy's anxiety be added.  We are doing everything we can to try to ease her fears!
Just to reiterate my first point....I started this blog post at 8 am this morning, it's now almost 9 pm and I am just finishing it up!