Harlie's hospital stay just got longer

[Lifeisgood]

Hi. I just thought I would give another update on Harlie. She developed chylothorax (lymphatic vessels leaking fat into her chest cavity) after her heart surgery in March. We have been in the hospital for 3 weeks now. Normally, you just switch their formula over to Portagen for a few months, and all is well. However, Harlie doesn’t like to conform to normal. So far, the Portagen is not working.

Today she had another cyanotic episode and I knew the chyle returned. It fills up her chest cavity, preventing her lungs from being able to expand. The docs said it was very unlikely – yet it started draining again (she still has a chest tube in). So, now we have to start the whole process over again – no more feeds through the g-tube. She’ll be on TPN for at least 5-6 days and then we’ll try again. The goal is to let the vessels scar down during the TPN time, then re-introduce Portagen (a less fatty formula).

So, that just bought us at least 2 more weeks in the hospital!!! I am thankful that we are close to home and that I really like our nurses (most of the time). But I am so disappointed that this is turning out to be a difficult fix. We have other time sensitive issues that need to be fixed that can't be done until 6 weeks after she is completely recovered!!! Sometimes I feel like we aren't getting anywhere! UGH.

Well, hopefully my next post will be better. Thanks for listening!

Take care,
Christy

[suzanne2545]

Christy- Not again! I can't believe I'm reading that. What a long haul for you and poor Harlie. I hope that plan B works out and they can get her successfully on the portagen quickly! Everything in its time!

Hang in there.

Suzanne

[faywrayy]

So sorry to hear this!! I hope she's on the mend soon and home before you know it!

Best
Angela

[Ann]

I'm sorry to hear that Harlie is having such a difficult time recovering. I think all of us feel like our kids take the "road less traveled", but it sure sounds like Harlie beats them all ... she's certainly out-doing Jack for being the exception to the rule. Hang in there.

[TommysMommy]

Harlie and Tommy have the same birthday! They are the exact same age! I am sorry to hear she is having complications. Tommy goes to the PC tomorrow to have his monthly tests done. We are waiting for sats to drop low enough to require our #2 surgery as well. I COMPLETELY understand!

[marqus'smom]

awww i really hope things get better soon!!!

[lovemymak]

You poor thing! This has really been a long haul for all of you. I hope that little Harlie will improve quickly.

Sarah

[LKN]

I hope this is just a little bump in the road and she is home soon. Our prayers are with you both.

[Jordansmom]

Oh no, you guys don't even get a chance to catch your breath. That all sound scary, and this is for Harlie Get better soon little one

Cathy

[JWorthington]

Oh dear, it's just one thing after another right now! Hope you get over this hurdle quickly and are on the way home before you know it.

Good luck sending good vibes across the pond.

Juliex