May 1 - Morning Update: Natalie and Joshua
May 1 - Morning - Natalie and Joshua Update
It has been a couple days since I have posted. The really good news is that both kids are continuing to improve. Yesterday, Natalie took another walk to Joshua's room. Also, yesterday, Joshua took some steps as well. For the first day in 7 weeks, I have had both kids taking physical steps. It is really weird to make the leap from RSV, a respiratory illness to taking physical steps. Here are the two reasons why this is so very critical.
First, there is the work both Natalie and Joshua need to do to combat the atrophy. Being mostly motionless for 6+ weeks is brutal. It is proving to take a great deal of effort to begin earning back the walking skill that both Natalie and Joshua had when they entered the hospital. The very act of walking and standing is incredibly taxing. When I visited Joshua's room yesterday, the nurse was talking about how well Joshua did just standing, giving Joshua credit for standing for a full minute. Joshua corrected him, telling him it was only 40 seconds. That is how much the atrophy has taken from Joshua. Joshua was also pleased to walk 10 steps yesterday. On a typical day before RSV, Joshua would walk over 3000 steps.
Second, there is the important cardiovascular benefit to walking. Several weeks ago, the kids doctor spoke of 'motion as medicine'. As Natalie and Joshua are walking, they are also exercising their respiratory system. This has been seen watching Natalie and the impact on her respiration when walking to Joshua's room. The first time, her respiratory system was so fatigued, they had to connect her back to the vent to help with her breathing. The second time, yesterday, they began modifying how she was receiving oxygen, giving her a high flow canulla so she could walk and talk, and maintain a healthy oxygen level. All of this is improvement, but it is a long way from being able to leave a hospital setting.
What is needed to leave a hospital setting? As I started answering this question, I realized there is too much going on for me to give a solid answer to this question. What I can answer is what is coming next. What is coming next is the work towards 'decannulation', which is the removal of the trach and the closing/healing of the stoma (the opening in their necks). Before this can be done, they need to be able to demonstrate the ability to live with the trach capped. Natalie has done this for a few hours, with the high flow cannula. The hope is that they will be able to live without the trach and without supplemental oxygen. That is what both Natalie and Joshua are working towards.
In addition to decannulation, there is the goal for the return of their mobility. These are the primary two things being worked on at this time for Natalie and Joshua as they are working towards their healthy departure from the hospital.