Natalie – Status Update
April 3, 2026
The day began again with disappointment. Natalie has been awake and alert and waiting to be extubated for several days. It is difficult to explain, the doctor's just don't think you are ready yet. I am glad I trust the doctors making the decision, but I lack the words.
Again, there is an effort to get Natalie out of bed and into a chair. Her head has been tipping to her right and it is stretching her muscles so she has neck pain and is struggling to hold her head straight which makes the chair uncomfortable.
Midday, Natalie and Joshua's neurologist showed up and gave a thorough check on both of them. The pulmonologist was happy with their progress and the decision was made to extubate one today and one tomorrow. The initial decision was to extubate Joshua. This made Natalie very disappointed when we told her. Several minutes later the decision was made to switch the order and do Natalie first. This made Natalie very happy.
The extubation was slow, but the recovery for Natalie was stressful. She wasn't comfortable with everything going on. She felt there was a bit of 'bait and switch'. She was looking forward to talking to mom and dad, but wasn't able to because of the mask she was wearing.
Eventually, Natalie settled in and she had a very good day. She was able to maintain her high stats even with low oxygen input (30%). It looks like they have all the protocols necessary to keep the tube out this time. Now the hope is that there is no overnight regression and that we can begin seeing progress tomorrow when they introduce the high flow nasal cannula.