Rebekah

Music to Our Ears!

Rebekah has Trisomy 18 and wasn’t even expected to survive to birth and, when she did, we left the hospital at 6 days old on hospice care, not uncommon for trisomy 18 patients. But she did survive! And she fought daily from life-threatening blue spells for the first month of her life, showing us that she was fighting with all of her being to be here. We took her off hospice and, after extensive testing, it was determined that Rebekah had very severe obstructive apnea and some tracheal malacia. The doctors weren’t too sure what to do, but we finally came to an agreement to try a trach. Rebekah was trached at 6 weeks of age for severe obstructive apnea, and it was definitely a decision that saved her life! But along with the trach came the mourning of not being able to hear our baby girl anymore, the stress that comes with having to constantly suction a trached patient, and (for Rebekah) the realization that she was breathing was too shallow at night and it would make her SATs drop so she needed oxygen.

The hospital Speech Language Pathologist is a big passy muir valve fan, and she had us testing out a PMV before Rebekah even left the hospital. We started out at 5 minutes a day, and slowly increased the time from there. Her obstruction would occur mostly on inhalation, and Rebekah took to the PMV like a champion since she could breathe in through the trach and exhale with the PMV. After about a year of use, we had worked up to being able to wear a PMV all day long and even at night. We did several sleep studies with and without the PMV to verify the safety of using it, and were given the all clear to use it 24x7!

The PMV has been so wonderful for Rebekah! Hearing her voice for the first time after her tracheostomy was music to our ears! It definitely improved her ability to swallow too. She manages her secretions so much better and, once we built up to wearing it around the clock, she rarely ever needs suctioned anymore! I also worry less about aspiration because of it. Having Rebekah be able to “voice” herself at night is such a huge relief. Probably the best part is that she stopped needing oxygen at night once she was wearing the PMV all night, because it encouraged her (in her sleep state) to breathe more deeply and her SATS stayed in a good range.

We LOVE our passy muir valve and would encourage anyone with a trach to try one!

Susan, Rebekah's Mom

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