Sunday afternoon,
Well Brad and I just got back from Indy. What a great day! Brady is trying to open his eyes, and move around a little:) Jamie I was so happy to be able to see you guys and see the progress Brady has made! You guys are a very close loving family and that love and support will guide you through all of this. I got to spend a little bit of time with Haylee to, what an amazing little girl. You could tell how much she loves her brother. Brady keep up the good work. Here is Jamie's latest e-mail
Today was great. First thing this AM, the Neurologist came in and read the EEG from the last 24 hours and said that there was no indication of and more seizures (sub clinical or clinical). She finally had a huge smile on her face too! The P-ICU doctors came in next and turned the feeding tube off so they could come back at 1:00 and pull the tubes out because he has been breathing on his own. 1:00 came around and they pulled the vent tubes (still has the feeding tube). Brady began to open his eyes for the rest of the day--just squinting, but it is more than we have seen for 6 days, so to us it was awesome. He's still very tired though and it will be a process. So, needless to say, I finally got to hold Brady today for about 30 minutes. It was amazing. His heart rate went down (was stable--in comparison to when people are poking and prodding him or moving him or whatever the case may be), he was breathing better and he just seemed at pease, like he was finally home. What a great feeling:) Jay and I ask for continued prayers as Brady continues to open his eyes, progress, be diagnosed and then leave with a plan. Day by day. One thing that Riley has taught me is patience, and lots of it. We're still looking at being here for a week or so, so keep up the good work. Thanks again and I look forward to sending more positive updates.
Well Brad and I just got back from Indy. What a great day! Brady is trying to open his eyes, and move around a little:) Jamie I was so happy to be able to see you guys and see the progress Brady has made! You guys are a very close loving family and that love and support will guide you through all of this. I got to spend a little bit of time with Haylee to, what an amazing little girl. You could tell how much she loves her brother. Brady keep up the good work. Here is Jamie's latest e-mail
Today was great. First thing this AM, the Neurologist came in and read the EEG from the last 24 hours and said that there was no indication of and more seizures (sub clinical or clinical). She finally had a huge smile on her face too! The P-ICU doctors came in next and turned the feeding tube off so they could come back at 1:00 and pull the tubes out because he has been breathing on his own. 1:00 came around and they pulled the vent tubes (still has the feeding tube). Brady began to open his eyes for the rest of the day--just squinting, but it is more than we have seen for 6 days, so to us it was awesome. He's still very tired though and it will be a process. So, needless to say, I finally got to hold Brady today for about 30 minutes. It was amazing. His heart rate went down (was stable--in comparison to when people are poking and prodding him or moving him or whatever the case may be), he was breathing better and he just seemed at pease, like he was finally home. What a great feeling:) Jay and I ask for continued prayers as Brady continues to open his eyes, progress, be diagnosed and then leave with a plan. Day by day. One thing that Riley has taught me is patience, and lots of it. We're still looking at being here for a week or so, so keep up the good work. Thanks again and I look forward to sending more positive updates.
3 comments:
Megan,
If I understand correctly, do they still not have any knowledge as to why this has happened???
they have an idea but are not 100% sure. The are waiting for test results.
Metabolic disorders are extremely complex. I understand how Jamie and Jay must feel trying to make sense out of what the specialists are saying. The good news is that metabolic disorders are more understood than ever before. Even in the last five years there has been more research being done in this area than ever before. In light of trying to reach for a positive, Brady is under better care than he would have been years before.
-Stacey
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