A'mist the Excitement

There has been some excitement these past couple of weeks. Last week, we didn't have our regular nurse because she was on her honeymoon. That of course through our routine off having new nurses come into help. Early in the week, Sophia started her therapies. I already love her therapist. She is wonderful with her. She sings to her has the work on her physical therapy. She is even showing Sophia some signs. This week the PT said she already saw improvements in Sophia. Yup, my girl's a rock star. Therapy is going to be so great for her. The trach collar is allowing her to have more tummy time. I actually believe she is starting to love tummy time. Which is great because getting her neck strong is the goal. Late in last week, Sophia started feeling yucky. She started breathing faster, high heart rates, thick secretions etc. So we had to make an emergency trip up to Riley. The doctors said she may have been working through a virus and sent us home with a few tips to help her work through it. By the weekends end she was feeling better. But not before she gave mom a little scare Saturday during bath-time. I had just finished her bath and was changing her trach ties when the little miss that it would be fun to tug on her ballard. POP came the trach. Of course a few curse words slipped from my mouth as this momma acted quickly and had the new trach in and secure in a matter of seconds. Talk about an adrenaline rush. There was no time to think just react and thank goodness I react well under pressure. Its the teacher in me that thinks quick. Both of these events just remind me that how in a instant things can quickly change with Sophia. Which brings me to yesterday, John and I were moving Sophia to the kitchen so she could swing and watch her momma cook dinner. The transport went smoothly and as I laid her into the swing I noticed a HISS. I immediately checked all of her tubes and could not find the culprit. John then said well maybe she's decannulated. I skeptically checked and sure enough, her trach was completely out and laying against her neck. So we immediately rushed her into the crib, laid her down, and had the new trach in and secure like clockwork. That was good team work. We both just moved to what we needed to do without even giving orders to the other. I am still completely baffled on how this decannulation happened because I can't recall anything pulling or snagging. Nothing. Sophia obviously just likes to keep her mommy on her toes. So in less than a week, Sophie successfully decannulated herself not once but twice. So I have had two emergency changes in one week. What a rush. Today, was a busy day as well. We went back to Riley for our swallow study. I gave her a couple of tiny droppers of formula and cereal as they watched her swallow on an xray. The first two swallows were successful. My heart started to smile and then the third swallow she aspirated into her airway...SIGH. However, being the optimist I am choosing to take this all as good news in the since she has shown improvement. On the first swallow study, she aspirated right away and showed no engagement in swallowing. Today, she was initiating a swallow and had two successful ones. Improvement is improvement. So for now, she cannot have food by mouth because it still proves unsafe but at least we are moving forward. Speech said they would like to revisit the swallow study once we reach the pacimere valve. Our original appt of June 7 was moved back until the 14th due to her cold. Today, we just finished the last round of an hour and a half trach trials and tomorrow we move onto an hour 45 mins for the next three days. The doctor wants Sophia to be on 2 hour twice a day trials before we move forward. She is doing wonderfully on the collar. I just can't wait to hear the next steps for her. So amist all the excitement these past couple of days, we have still found plenty of times to smile. Smiling's the best, we love smiling. :-)