Parallel Universe

For the past week it feels as if we are living in a parallel universe. A universe where no one sleeps, people are in and out at all hours, and you are afraid at any moment that your world may change forever.

Nicholas has been in the PICU at Doernbechers Children's Hospital since last Thursday. He has a respiratory virus that is causing him to desaturate because of the mucus build-up in his upper airway. He was intubated last Monday night because he was having such a difficult time breathing even with increased bi-pap settings and respiratory treatments. All day Monday he cried and struggled to breathe. His respiratory therapist changed the settings several times on his bi-pap to try and give him some relief, but nothing was working. When we were told that they wanted to intubate, Jeff and I were beside ourselves with worry as the doctors were optimistic but explained the risks associated with intubation in a child with SMA are high. We sat by his bedside and prayed with him. We uttered the most difficult words that have ever passed our lips: that we love him and if God called him home, he could choose to follow the angels into Heaven. Thankfully, our prayers were answered and the intubation was successful. Nicholas had two full days to rest and allow the ventilator to breathe for him and give his weak little body a much needed break.

He was successfully extubated yesterday afternoon and has been resting a lot and has been able to get out a lot of junk in his upper airway with regular treatments which consist of albuterol & saline nebs, the vest, cough assist and deep suctioning. He has a long way to go to get over this illness, but we are feeling very optimistic that with some time and much needed respiratory therapy, he will be able to come home before Christmas. It would be our own small Christmas miracle.

When Ella comes to visit Nicholas in the hospital, he is beside himself with joy. It is truly the only time we see him smile lately. The love he has for his sister makes my heart swell with happiness.

Nicholas is lucky to be at Doernbechers where he is getting the best care. He has some pretty great nurses. Calley is our favorite night nurse and Stephanie is our favorite day nurse. They are so attentive to his needs and try their best to make him feel comfortable and happy.

Last weekend Jeff had an easy time getting him to smile when he blew bubbles around the room. Then he let Nicholas blow bubbles with his bi-pap mask which Nicholas thought was so funny.

Every day I see a bit more light come into his eyes, but it so difficult to live in this parallel universe feeling constant anxiety and fear that things could change at any moment. Please keep our sweet child in your prayers.