Maddie's heart cath was scheduled for this Friday but unfortunately, we've had to cancel it due to her having a little head cold. I know...sounds crazy. Our life has become so normal with her but in preparing for her 7th heart cath, we knew keeping her healthy was a priority. Easy to say, hard to do. I teach preschool, I have lectured those mother's enough and they are all very respectful of the "well-child policy" so we tried there. We tried limiting her going into grocery stores, public places, etc. but she still came down with a stinking cold. It's frustrating and times like these remind me that I am raising a child with a chronic illness. Her heart will never be fixed. Catching a simple cold then having a heart cath is not good- her risk for infection increases and the policy is to cancel. I'm grateful they always have Maddie in mind, her medical team is amazing.
As of now, her cath is rescheduled for Dec. 11th. Dr. Johnston is calling it an interventional cath as he's hoping to close her fenestration (hole created in her heart used as a pop-off for blood flow), as well as looking for & taking care of any collateral vessels as well as making sure her pulmonary arteries are wide-opened and growing well. After her Fontan, we knew she'd need to go back to the cath lab...just the timing was the question. After three open-heart surgeries and six heart catheterizations, we should be pros at this but it doesn't get easier. She knows she has to go back and when we've talked about it, she's anxious and tears up. I swear the older she gets, the harder this is.
She needs to have a good 2-3 week window of health- being clear of any illness. It feels impossible. We have four children, two of which attend public school. I teach 11 other children two days of week, preschool in our home. She takes ballet once a week. We spend lots of time with family and cousins. Can we just put her in a bubble and carry on with life? Bryan and I differ on how much we want to expose her...wished this was easier at times. What a balance it is between having her experience a normal life but compromising her health in achieving that goal. Prayers for keeping Miss Maddie healthy are always appreciated. Just want to get this cath over with. 28 days to go.
3 comments:
Sorry. Hope she feels better fast, so she can get that ol' cath over with.
it is just a poopy time of year. Severin is scheduled for the Fontan on Thursday, and they are willing to take him even with a slight cough. I have been crazy keeping everyone else healthy. Let me know when you find that balance, it seems to escape me too. Feel better Miss M!
:( I'm sorry. It's already no fun anticipating a procedure and it's even worse having to cancel it at the last minute and go through that anticipation all over again. Sending thoughts and prayers for Maddie to feel better soon!!
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