Getting Out

It has been so amazing to be able to be together as a family. We are so thankful for every day, every hour, every minute, and every second that we get to spend together. We are so thankful for our donor family to be able to see Nevaeh go through these milestones! We took Nevaeh to the Heart Dash 5K and Fun Run! She loves being outside, she is not able to be out in the elements as much at this moment not just because it has been cold out, but because of her trach she is more sensitive to whenever polling levels are high. When it is windy she seems to cough a lot more as well. Which means we have to suction her more to keep her airway clear. Marlee’s birthday was awesome! It was great that the girls got to spend it together, Nevaeh was actually supposed to be at OCH but it got rescheduled because of high amounts of sickness in the facility. So her 3 day stay got scheduled for the last week of November, Wednesday afternoon her stay got cancelled for the same reason. So we will be talking to the pulmonologist and ENT (ear, nose, and throat) specialist to see if we can look into alternative options for her to be able to come off the vent that doesn’t require her to have a full 3 day stay at OCH. It is a blessing that they were able to communicate with us about her not being able to go. We have been so excited for her to move to her next step with going towards getting decanulated (removing the trach) just the steps to getting there have seemed a little harder to obtain during this time. With her being immunosuppressed it has always been in our minds to have her stay anywhere that is high populated similar to a hospital will of course have a higher chance of her getting sick. So we are just waiting to see what our next steps will be to try and get Nevaeh off the vent. Thanksgiving was amazing we only had 3 people over this year, but it is more than what we have had sense Nevaeh has come home. She got her to try her GG’s homemade mashed potatoes and she loves it! I was eating some key lime pie and she thought that looked good so she grabbed it! I like that things are somewhat sitting into a normal pace at home as well. Even having to do trach care every day and trach changes every week, 5 am breathing treatments. It all for sure has become our new normal. Nevaeh’s eating by mouth is going amazing! She is transitioning to a meal replacement because she is not able to eat enough by mouth, and her toddler formula isn’t giving her enough calories for her to gain weight at a steady pace.

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