Wednesday, May 29, 2019


     We finally made it home at 0300 yesterday. We were exhausted but home. We spent the day sleeping, napping, doing laundry, seeing grandparents and just enjoying time together.  We have a followup appt on Monday with cardiology here to get the all clear to resume more normal activities.

Monday, May 27, 2019

Today is not our day

     We were so pumped to be able to fly out today that we were up early finishing all of our last minute rmh prep. We were making our last minute decisions about when to leave for the airport when we got the dreaded email. Our flight on Spirit was delayed from 2pm to 4pm. We slowed down our pace of packing until we got another email stating the flight was delayed until 8:56pm. At that point, we had to extend our rental car return and look for other options if there were any. Southwest was the only other airline with any flight into Nola tonight and it was $515 per person. Frontier had a flight that left at 6pm and arrived in pensacola at 9pm and we could easily rent a car and drive the rest of the way. We decided that was our second best option and we would book it if the Spirit flight was delayed any later. I was anxious to just sit at the rmh which is 30 mins away from the airport so Brett humored me and we went to sit in the cell phone lot. This way, Livi could nap and we wouldn't be far away if the situation changed. The situation changed again and the Spirit flight was pushed back to 11:57pm with an arrival time of 0115. We decided Frontier was our best bet so we hightailed it to the rental return and to buy tickets and check in. As soon as we checked our bags, Brett asked the dreaded question.... Is the flight delayed? Only about 20 mins was the response so we proceeded through TSA. As soon as we got to the nearest screen, the delayed signal popped up and we saw the dreaded 7:30pm flight departure. Then it changed again to 8:45pm. This means that we would get to FL even later with a 3 hour drive ahead of us. Brett quickly realized that the rental car place closed at 11pm and we were set to land at 10:53pm....too close for comfort. He is determined to get us home much to my disagreement that one night in a hotel in either Philly or FL isn't that big of a deal. So now we sit while Brett watches his phone for delayed alerts and we try to have Livi rest.

   She is great in the morning, but as the day goes by, she quickly turns into Oscar the grouch. The closer and closer it gets to bed time, the more pain that tends to creep up as well. The last two nights she has cried herself to sleep because she just can't get any relief. She has been doing extremely well so far today but the warning signs are slowly showing themselves. She truly wants to get home and see her brother and sister whom she has missed desperately. I know the anticipation and adrenaline will only last so long. Hopefully, we have things shift in our direction once today and we can finally get out of Philly.

Sunday, May 26, 2019

Discharged to stay close

    We were given the go ahead to be discharged. Olivia even said she would dance for discharge.... It was an interreptive dance....but it was a dance. Since she spiked a fever Friday night, we have to stay close for a few days to make sure her blood cultures are normal and that she doesn't spike again. We are getting used to not so many monitors and watchful eyes which always sends my mom worry into overdrive. Hoping for an uneventful few days medically and to slowly get our independent sweet girl back.

Chilling in philly

    Since Olivia had fever Friday night, the plan was for us to be discharged Saturday but stay in the area for pain control and to make sure she didn't spike again. Once discharged, we all settled into the Ronald McDonald house in New Jersey but also wanted to pass the time. They had a showing of the Pets 2 movie and we thought sitting wouldn't be a big deal. Olivia enjoyed the movie and loved to tell Delilah all about it. Yesterday and today has been a learning curve for Brett and I. Until yesterday, we never really thought about how much and how blessed we were that Olivia was able to do so much. Since discharge she has been limited. She can't run, jump, ride on bumpy roads, sit for longs periods, lay down for too long, carry anything heavy, walk long distances or get bumped by a person or bag. We have also learned that at 7 it is extremely hard to manage her pain. She waits until the pain is excruciating before saying anything which means we are playing catch up. We have also learned that we have to be very specific about exactly what to expect. Today, she randomly asked us to promise no more lies. When we probed further, she said.... Yall lied to me about coming up here and just seeing the doctors. We tried to explain that we told her about what we knew about but that sometimes things change. I don't think she really bought it. We have found a local circus for today's activities.

Saturday, May 25, 2019

Lymphatic Intervention for Plastic Bronchitis Improves Outcomes in Patients with Congenital Heart Disease

Here's a cool study they released on some of the early lymph angiograms they have done.  This is the procedure Olivia had. 

Olivia feeling better this morning, and ready to go.

She says her belly pain is getting better, but her back pain still hurts.  Melanie and Olivia took 2 laps around the unit today and she looking more upright as she did it.  She keeps talking about going to the ronald mcdonald house and getting out of here.  She said I'm not in pain anymore, just my head and my back hurt, and my stomach some.  Hopefully today will be good!  I'll update you guys tonight. 

The best part about hospital life is getting fed like you are a baby.  Without a ton of will to eat, we are helping her along.   

All clear so far

I came in from the Ronald McDonald house this morning and luckily the resident came in right after me.  He told us that all the labs, and tests came back negative and clear.  There is nothing out of the ordinary.  Perhaps all the walking around and returning to normal is working itself out through a fever.  The back pain could be from laying on a flat MRI table for a hour.  They said you can expect fever up to 5 days post-op. 

We are waiting for rounds sometime around 10am or so to occur.  Then we will hopefully have a better picture of what moving forward will be like.  The resident this morning asked me my thoughts on going home with belly pain of a 5 or 6 out of 10.  I told him i'd have to run it by my nurse wife when she wakes up (from the uncomfortable couch bed) but I mentioned that we intended to stay 2 days locally at the Ronald McDonald house before jetting back home.  It makes me think we might get discharged soon with those kinds of questions.  Of course, we'd have to have a protocol for how to manage it, and when to come back./

I'm probably not explaining it correctly, but with the lymph system being one of the bodies junk movers (fat, and waste) as it returns to normal, it too is figuring out its new normal.  Dr. Dori separated the lymphatic system into the top half of her body and the body half of her body.  Now that the bottom can't flow into the top things are settling out and pooling in her lymphatic system as it learns the new normal.  A good bit of this can go to the stomach, and the body reacts to it kind of like an infection and that is why fevers can occur.  In the upper half of her lymphatic system there is all sorts of weirdness from her special lymphatic network.  Dr. Dori glued a good bit of the bad areas to prevent the upper half of her system from pooling into the lungs. 

I finally have time to post this, but we got to capture some images from Olivia's MRI. It is some interesting stuff, and very confusing at the same time.  When you look at this image you should notice how the lymph system looks below the green line.  This is where it is nice and lined without any leakage.  If you look at the top half you can see where things are leaking as it gets cloudy, instead of clean lines.  The contrast just kind of comes out and spreads around, if it was contained in the lymphatic network it would not do this.  At the top right is where her thoracic duct is support to connect to the inominate vein in the neck, but she does not make that connection.  Instead the lymph just kind of pools at that top right spot and leaks back into the lungs.  He placed a lot of glue in the upper half network to try to close some things off. Medical science doesn't know  a lot on the intricacies of the lymphatic system, but somehow the body will work around the glued portions and still find a way to perform the duties a lymphatic system should.  Hopefully we only need this procedure once, but sometimes you might need it a second or third time.  Dr. Dori did feel like he got it all, but unlike with a heart catheterization they don't go back and double check.  It would be too hard on the body to check after it is done. 

I also now have time to post and was able to make the last 2 or 3 blog posts.  I backdated them.  I apologize for not keeping you guys updated.  We do really appreciate all the thoughts, prayers, love and support.  Olivia knows she is loved back at home.  We have had several tears over missing her brother and sister, and she is definitely done with being here.  However, all the facetime's we have done and all the help back at home is making things bearable.  We can't thank everyone enough!