cath and lowering oxygen

The other night I am sitting at the Ronald McDonald House talking to Mike about heart transplant and getting a heart and everything that it entails.  And we both say, "I can't even believe this is a conversation we are having right now!"  Not in the sense that we can't believe our circumstances, but that starting a family and having kids would ever lead down this road.  Heart transplant.  I have said it a million times.  Holy crap.  We are four weeks in and it's all still very surreal.

We are slowly starting to get into a schedule.  For most of Lucy's hospital stays I have been able to be on leave or use vacation time, but with the time it take to receive a heart, right now that just isn't an option.  This will be the first time we'll be in the hospital for an extended period of time where I will have to juggle work and the hospital (Mike's been doing it from the get go and I give him major props!!).  I am forever grateful to have two wonderful bosses that have worked with me to make a schedule that benefits both of us.  My office is in the loop and I have been working remotely since Lucy arrived.  Recently there had been talk of consolidating two city offices and moving to the Merchandise Mart.   The move would have extended my walk from the train maybe another 5-10 minutes.  I desperately did not want that to happen because when I started going back into the office (completely arbitrary date) I didn't want a longer walk.  Flash forward to our transfer to Lurie Children's hospital.  I am now going into the office once a week and the Merchandise mart is half mile closer than my current office.  Oh how that move would have benefited me now and it just goes to show you, nothing turns out how might expect.

Two weeks ago Lucy went for her catherization.  A couple people asked why she had to go for another one (she had one beginning of March before our transfer).  The first one was just diagnostic.  Lucy was in no shape to handle any intervention, so they just wanted to get her lung pressures.  After being on milrinone for two weeks, she was in much better shape.  Their plan was to balloon the stent in her left pulmonary artery and coil of some collateral vessels.  She went down to the cath lab around 2:30 and was down there until almost 6 pm.  They were not able to balloon the stent, but instead had to do a second stent inside the original.  Five collateral vessels were coiled as well (3 on her left and 2 on her right).  Collateral vessels are abnormal blood vessels that connect the aorta with the pulmonary arteries.  The human body is so smart, it recognizes that Lucy's blood is below normal oxygen saturation.  It creates these vessels to get more blood to her lungs to help increase the oxygen.  However, with her physiology, they were flooding her lungs with blood increasing the lung pressure.  It's another vicious cycle.  Lung pressure is high, so the blood takes the path of least resistance, her fenestration to her heart.  The heart then pumps that blue blood to her body, through the aorta.  The collateral vessels, pull some of the blood and push is back to the lungs.   The coiling of these collateral vessels will allow her fontan physiology to work and bring up her oxygen saturation.

Unfortunately in the last week, we have seen the opposite effect.  Her saturations have been dropping slowly.  She has been resting between 65 and 68 percent with a couple significant drops while sleeping to the 50's.  We have moved back to high flow and last Tuesday nitric was added.  The bad part about all of this, it makes it really hard to leave the room for walks.  Lucy has again stumped us.  We are looking to maximize her pulmonary medication and slightly increase diuretics to see if that will help.  At this time we are not sure if any other procedures have benefits that will out weigh the risks.  We are praying that God will help to lift her oxygen saturations and she can come off nitric and high flow.  We just want her to be able to move about the unit and get physically stronger as she awaits her new heart.  If you pray, pray with us please!


Two extra things!
First we want to thank everyone who has donated to our youcaring page.    We are so grateful and already feel relieved that when Lucy's new heart arrives we won't have to think twice about taking unpaid leave from work.  I say this often, but we are truly blessed to have so many people that love, support and pray with us.   https://www.youcaring.com/lucyshannon-1141532


Second, this is a post from Lucy's new Facebook page: At the Heart of Lucy.  https://m.facebook.com/heartoflucy/
If you missed it, we are starting a project, creating a book of friends.   If you are so inclined, see the below and help us fill her book!

📣 📣 📣 Project Alert 📣 📣 📣

****************EDITED****************
Please print photo and send in mail.  Do not send via email or messenger.  Part of the fun for Lucy will be opening the mail!
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Lucy loves to look at pictures on our phones.  Since they are not always available, I want to put together photo albums of all her friends.

Here is where we need your help!!!!
1.  Print a 4x6 picture of you, your family or your kids
2. On the back of the photo list the following
   -name and ages of people
   -city and state you live in
   -what you are doing in the photo or a fun   
      fact about you
3.  Send to
      Ronald McDonald House
      C/o Betsy Shannon
      211 E Grand Ave room 1102
      Chicago, IL 60611
4.  Share and tag friends....the more people that see this, the bigger Lucy’s friends book can be!!!!

Each day we’ll open one or two photos and add them to our book. 

We’ll thank everyone in advance for sending photos!!

!