Introduction

Our sons Charles George Fitzpatrick and Henry Michael Fitzpatrick were born prematurely on November 16, 2013 at a gestational age of 24 weeks and 1 day. Their "due date" was March 7th, 2014. We started this site on November 28th.

Both Aly and David will be posting to the site. While you will probably be able to tell who is writing by our writing styles, we will sign off on our entries with our initials so you will be sure of the author.

Thursday, December 19, 2013

Thursday 12/19/2013 12:35 update

So this morning has been nothing short of insane. Charlie was showing all the classic signs of a catastrophic brain event and David and I thought that we would be losing our Charlie. But then slowly, Charlie started showing everyone that it wasn't over. To the surprise of everyone the tests that were run all came back normal.

How can this be? What is going on? Good questions. Well, the theory at the moment is that the two things that were scaring everyone were maybe not from exactly the same root cause. Let's start with the seizure-like movements. They've stopped and we are assuming that they were related to the hydrocephalus, which is fluid in the head. The urgent procedure by the neuro-surgery people relieved the pressure and the symptoms stopped. 

The heart rate being low, the blood pressure being high and the bradycardia events have not exactly stopped but the assessment of them has rather changed. Here's the theory; Monday's surgery led to Tuesday's crash leading to Wednesday's weaning from Tuesday's medicine. By Wednesday night, Charlie was still on steroids, which can increase the blood pressure and lower the heart rate. Still with me? Charlie's heart rate is lower than "normal" but there's some level of explanation for that.

We are trying to work out what Charlie's normal is after the surgery. In order to do that, we need to give him time to heal and to get all the support we gave him out of his system. 

However, what isn't being explained above is the heart rate dropping. The bradycardia events we mentioned are actually a dip in the heart rate. Where it is true that if you drop from a low baseline, you get to alarming lows more quickly and more often, there is still a question as to why it is dropping at all. 

So, after reading this if you feel like you still don't really know what is going with Charlie don't feel bad, nobody else does either. We will update again when a clearer picture develops. 

(A&D) We wrote this one jointly because both of us are fried emotionally and we needed the joint brain power to make this slightly coherent. 

3 comments:

  1. Thank you for the update guys. What a roller coaster!!!!!! Sending Charlie love and light as he heals to every portion of his being. xoxoxo

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  2. What a little fighter Charlie is!!!! Love to you all, Phyllis

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