Titus's very own 3D model of his heart is being printed this week and Dr. Manning and his team will decide which surgery he will undergo at their conference next Wednesday. We will be praying for wisdom and a clear, unified decision!
http://www.ksdk.com/story/news/health/2015/02/26/3d-model-helps-doctors-during-toddlers-heart-surgery/24039449/
Thursday, February 26, 2015
Sunday, February 15, 2015
Waiting and Wishing
Latest Updates:
1. Titus's team met on Wednesday January 28th and discussed Titus's latest echo and his physical profile. They also included a surgical team from Boston Children's Hospital who will serve as our second opinion since they seem to not have a clear picture of which surgical fix for Titus will be best. Dr. Manning, the lead surgeon for Titus's case, is leaning toward the 2 stage Glenn/Fontan route due to the location of his valves and the distance the aorta is from its "normal" location. However Boston requested more information before they could state their recommendation. They have requested a sedated MRI, Echo, and Cath procedure (where they can measure pressures, measure distance and relation, and inject dye into the circulation to create images). They will use the data from these three procedures to print a 3D version of Titus's heart...I wonder if we will get to see or keep it?!? We will head to St Louis this week to have those completed.
These procedures are fairly routine, however the cath is invasive so it does carry a certain degree of risk AND he will also be sedated which comes with its own set of risks. Prayers for an uneventful visit that gets them all the information they need is greatly appreciated! We also hope they can meet next Wednesday and come to a unified decision on what they feel is going to be best for Titus.
Everyone has been hopeful for the two ventricle repair to be possible, and it is likely we could find a surgeon willing to do it, but if it isn't going to be a good two ventricle repair than he is no better off. We would much rather have a good single ventricle circulation (which we already know he is a great candidate for) than have a leaky or potentially weak 2 ventricle repair.
In the meantime, Titus has been growing like a weed, rolling over like crazy, smiling, giggling, grabbing for everything in site, he is such a ham! He is now over 17lbs but has definitely slowed down a bit. The slow down is probably due to being so close to needing surgery, but also because we had a couple unexpected hiccups. As if things couldn't get more exciting around here, I had an emergency appendectomy on Thursday. Until they were able to schedule surgery I could not eat or drink and it was well over 24 hours...that hit my milk supply hard and then adding in the stress of the surgery and recovery and we had a couple challenging days where he was not getting what he needed. He still is refusing a bottle so he just waited it out! Its been extremely challenging at times since I cannot take pain medication while breastfeeding too, I think he sometimes picks up on my discomfort while he is laying on my belly nursing. Thank goodness for the Lords ability to heal and comfort....
Evan & Titus PJ Party
Found his feet!
A couple hours post-op snuggling the boys!
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