Tuesday, May 14, 2019

Fighting back against Plastic Bronchitis

Dr. Natarajan, Olivia's CHOP cardiologist, got us on the schedule with Dr. Dori.  She had said we would do an initial consult, and then come back for an intervention.  The initial consult would involve some x-rays a heart cath, and a Lymphatic MRI.  They will check for any issues in her circulation that could be causing the high pressures, and then they will move on to mapping her lymphatic system.  Hopefully, these diagnostic caths and MRI's will paint a clear picture to fix the problem. 

CHOP scheduling has been flaky, and we have been waiting to get a date for 2 weeks.  We finally called yesterday to check, and they said "oh yeah, you are scheduled for May 21."  Yesterday we were left with a lot of uncertainties and the stress of the logistics and what exactly the next week would entail.  Fast forward to today, the picture is a lot more clear.  The nurse practitioner for Dr. Dori called and said that Dr. Natarajan suggested Olivia take part in a research study as part of the diagnostic cath.  We need to be at CHOP this coming Saturday morning where she will be admitted to the CCU until Tuesday when they will do the procedure. 

The research study is to help get FDA approval for a nebulizing treatment called t-PA.  It has been used for a few years to help but they are working to get plastic bronchitis added to the list of what nebulized t-PA can treat.  In order to do that the research study needs to measure the blood absorption of the t-PA.  This means every 6 hours Olivia will get a nebulized t-PA treatment, and a once a day urine and blood sample.  Hopefully participating in this study can help someone else out in the future.  Olivia will just be hanging out in the hospital Saturday to Tuesday morning.  We have participated in every research study CHOP has asked us to be a part of because we want everyone else to follow suit.  With enough research who knows what can happen for Olivia and other HLHS'ers as they grow up. 

On Tuesday she will have the heart catheterizaion and a lymph angiogram with an MRI.  If they find anything obvious they will do an intervention, to save us a second trip.  Sometimes they see a big lymph leak pouring into the lungs and they can go ahead and embolize (glue) it closed.  We have done a lot of research and sometimes they fix it the first time, some times it might take another lymphatic embolization to get it to work. 

If she has a intervention she could be at CHOP for up to 2 weeks recovering.  However, she has always recovered fast so hopefully we won't be there that long.  If there is no intervention we will be out in 1 day or so.  Poor Olivia is going to miss her dance recital pictures, and her last days of school.  She is a little upset, but we have promised her the world to keep her spirits up.  Any form of bribery is worth the smile it puts on her face right now.

Tonight we told the kids what's happening this weekend, and Olivia did not take it well.  She started off laughing, then giggling, then nervous laughing devolved into big tears and sobbing.  Nathan and Delilah did their best to cheer her up and got her laughing again.  We went to dinner and had a great night as a family.  She is lucky to have such amazing siblings, not many 15 year old boys would be so caring and thoughtful.  He even wore the paper hat at Buffalo Wild Wings.  Olivia could have chosen any restaurant but she said the mac and cheese at BWW is the best (not sure about that).  Needless to say we are all scared about this next chapter in Olivia's journey.  We are hoping a visit or two to CHOP will get us through this troublesome complication, but who knows.  I will continue to be optimistic and not worry until they tell me to worry, and Melanie plus her medical knowledge will have her worrying about every possible outcome. 

We will be celebrating our 16th anniversary on Wednesday, the day after her procedure.  Maybe it means I won't have to get a gift, ha ha.  I think we would both tell you that our two grief handling personalities have made this whole journey bearable.  I can't thank Melanie enough for every up and down we have shared raising our kids.  Every day we get to see Olivia's amazing smile, her crazy giggles, and sneakiness has been priceless.  Like all her procedures that have come before, our heart warrior will fight like hell and remind us why she has always been our hero. 

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