April – 2012 Cardiology Update: What’s Next?

And you think you're having a bad day?

As you can see, someone had a rough morning. Lil’ Sophie had blood drawn, cardiologist appointment, & an Echo on her heart and lungs. Here’s a refresher for you (and us).

Sophie has:

Cardiology –

Atrial Septal Defect (ASD) – a hole in her heart

Pulmonary Valve Stenosis (PVS) – faulty valve that has been temporarily replaced. Her new valve will not grow with her so it will need to be replaced again in the future.

The biggest cardiology issue is that Sophie was born with one lung much smaller than the other. With that, came narrow arteries leading out of the heart to that lung – equating to low oxygen levels in her body. The narrowed arteries caused the Pulmonary Valve Stenosis and continues to stress the replaced valve. This condition results in blood backing up into her heart which has the hole between the 2 chambers (ASD). Long term effects without preventative surgeries will deteriorate her heart & shorten her lifespan. So Lil’ Sophie will see many Cardiology visits in her future.

Today was time for her re-evaluation. Obviously, none of these issues are better, however she’s holding her oxygen levels fairly well. She’s not showing signs of breathing distress, blue coloring, and her O2 was 99 in the office (Yay!)  Her Dr needs to continue to correct Sophie’s heart and lung issues but he really needs her to get bigger for more successful surgeries. Since she’s doing fairly well, he decided that she does not need another heart cath procedure at this time and is willing to wait for another 3 months barring no oxygen issues.  Yippee!!

Liver –

Sophie’s new liver is doing fantastic!  But as you may recall we had some bile duct issues that have been lingering. Basically one of the liver donor’s bile ducts went into shock during the transplant and could not be reopened after repeated attempts. So in the final procedure the surgeon created a new bile duct using a stent. In the picture above you may have noticed a white cap by the bandages on her belly – this is one end of the stent.  The stent is shaped like a “U”, ironically called a U-tube (hardly as entertaining as videos). One end literally goes in one side of her belly and then out the other side of her belly. There are small holes in the center of the tube (inside her belly) that allow bile to flow from her liver to her intestine. The goal is to eventually have her body create enough scar tissue inside around the tube to support the new canal walls, keeping them open, so that the tube can be removed. But this will take many small steps to get to that point.

The Plan:

The plan is, every 3 months Sophie will have surgery to remove the current stent (tube) and put in a slightly larger one to continually stretch the bile duct they created. How long will this go on?  No one really knows. The surgeon said that due to her complicated anatomy he had to do things a little differently for her, so he thinks it could take up to 5 years. Ugh!!  Oh, did I mention that we aren’t supposed to get the tubes wet. Think about that for a second… that’s right, no baths!  I’m having a hard time with that one. Once a week I sit her tiny tush in the bathtub with shallow water. Shhh…. Don’t tell the Children’s Hospital!  😉   Sophie LOVES it too!  I’m trying not to be bummed by the fact that she won’t be able to enjoy our community swimming pool – for a very long time.  Ok, I digress.

Both Cardiology and the Liver team are coordinating on Lil’ Sophie’s behalf. Every 3 months the operating room is booked and both surgeons come together and work on their areas of expertise. As I stated earlier, Cardiology has decided to step out for this one and wait an additional 3 months. So next Weds, April 18th Sophie will go in for 1 procedure – the stent change. Each time we’ve done this  “routine procedure”, Sophie’s ended up in ICU for various reasons. The last time she was in so much pain she couldn’t sit up for 4 days post-op. That is NOT normal.   A surgeon unfamiliar with Sophie, filled in for her procedure. From now on, we are insisting that only Sophie’s core team members be allowed to perform her surgeries.  The Children’s Hospital is honoring this request.

So if you think about it, say a little prayer for us next week as the previous experience has left us a little apprehensive. Thankfully, we will have the surgeon that’s been a part of our team from the beginning. So it has to go better, right?

And hey – anytime you get the notion say a prayer for us, because, as I’ve now explained ,we still have a long road ahead. I don’t like to bore/confuse people with all this medical mumbo jumbo, but I wanted to clarify why so many surgeries are in our future.

I don’t usually post all these details because I want you to know that over-all Sophie is doing great! She’s out of immediate danger. She’s feeling good and happy. So thank you for all the prayers you’ve said for us in the past, and for ones you’ll speak on our behalf in the future.

Sophie’s a miracle that has been blessed by your caring thoughts and prayers. We are so grateful for all of you!

Sophie was so ready to leave, she pushed her own stroller out the door.

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~ by Jenny Bagwill on April 13, 2012.

8 Responses to “April – 2012 Cardiology Update: What’s Next?”

  1. Thank you for the update and for explaining – it really is good for us to know. Soph’s a little trooper – she’s demo’d that over and over. She’s not gonna slow down and neither will our prayers on her – and your – behalf. Love the pic of her taking her stroller & gettin’ the heck outa there 🙂

    • She’s definitely shown she’s a trooper, holding her own. The nurses & technitians comment on how strong she is for being so small. A fighter all the way! Thanks for the continued prayers!

  2. Thanks so much for sharing all the details with us as it truly helps in praying specifically. Encouraging word as well….so rejoicing with you for the miracles God has done. Continuing to pray and sending HUGS your way. Will you be in Bloomington/Peoria any time soon? I LOVE the picture of Sophie pushing her stoller out of the hospital

    • Thanks Shelly! My parents moved even farther away from Blm/Peoria – so now each trip I’ve taken to see them I’ve been busy in their area. But one of these times I may take a trip and stay in a hotel in Blm or something so I can spend time seeing all of you guys. I miss you. I love what your doing with your business too, btw! Maybe I can see you this summer, sometime. We appreciate the prayers!

  3. […] not including any pictures this time because the last post with the crocodile tears sums up our view for this weekend. We’ve had one sick girlie on our […]

  4. […] skin tissue to adhere itself to the tube (and to be quite honest, we don’t want it to, as we will continue to have to change this tube out). So the growing skin tissue became an irritant to the site. It’s possible this will continue […]

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  6. […] is doing fantastic (despite her other medical issues).  She’s eating well, happily playing, understands and follows directions, she’s […]

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