He had a PICC placed in his leg this afternoon and that procedure went well. It will make it easier for them to draw blood going forward.
Then this afternoon while I was holding him, his heart rate, sats, and breathing plummeted. Thankfully Jesse was nearby and able to get him to start breathing again. The whole team came in at that point to assess him and get some medications going. He is currently getting a continuous EEG to monitor brain activity. They think he may have had a seizure but are unable to say for certain. It was extremely scary. And it’s so hard to hear him cry and not be able to comfort him. He has to stay in the bed and can’t eat for now, so he’s upset. Hopefully this was a one time episode and he will be okay. We both thought we had lost him today. Jude needs a break. His little body is having to work so hard to just survive.
Sending prayers to Baby Jude, all of your family, and his healthcare team. I learned of your journey through a friend on FB. My Heart Warrior is 21 years old. He also had the Completion of the Fontan 18 years ago at Children's in NOLA. Now that he is an adult with CHD we travel to Dallas Children's for care. Just like our other kids I worry about him everyday. They are all adults and only one has health issues...I still worry about them all everyday. That never changes. I just worry a little more about that Heart Baby of mine. Hang in there mama! This journey is not for the weak of heart. There is a reason God chose you and your family. Sending prayers from Toledo Bend, Louisiana.
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