Monday, January 7, 2013

Sadbh’s update – January 7th 2013


Sadbh slept like a log throughout the night and Julie had to suction a number of times.
At 5:50 I went down to take over from Julie in the hopes that Sadbh would sleep until 7 however Sadbh was in Julie’s arms and she was very upset. She wanted Katie and since she was so upset her secretions were building up quite a bit.
I suctioned as quickly as I could while Julie tried to comfort her. A short while later Katie arrived on the scene but Sadbh was still very upset.
Sadbh’s trach was filling up with a lot of secretions and her breathing was becoming more labored. After calming her down and clearing her trach we contacted the hospital to see if it was still okay for Sadbh to come in. Unfortunately, we got through to their voice mail so after leaving a message we decided to get her ready and head in for her appointment.

Considering that Sadbh had not eaten or had a drink since last night, she was in a very cheery mood. We fully expected that she would go stir crazy looking to be fed.
Check in at the hospital was painless and when Sadbh started to ask for food we broke out one of her new toys to distract her.
Dr. Inglis appeared in the waiting room and came over as soon as he saw us. He wanted to double check to make sure that we were not planning on the Botox injections and he was confident that Sadbh’s cough and thick secretions would not prevent us from going forward with her surgery.

The nurse called for Sadbh as we wrapped up with Dr. Inglis and as soon as we were brought into the pre-op clinic. She weighed in at 25 lbs and measured 2 feet and 9 inches.
It was not long before they were ready for her and off she went. Katie accompanied her back to the operating room and Sadbh went under as soon as they administered the anesthetic.

Less than half an hour later we were paged to meet with Dr. Inglis and the result was very much the same as the last bronchoscopy visit. He has noticed some slight improvement and did mention that we could look at a couple of surgical options to open up her airway, however he did suggest that we stay the course and wait to see if they heal themselves eventually.

He did laser off some granuloma above the stoma site and this will certainly open up her airway.

As soon as we were finished talking with Dr. Inglis we headed back to the clinic to wait for Sadbh.
After a ten-minute wait we could hear a very upset little girl coming down the hallway. The sound of her secretions in her trach get very loud when she’s in distress so we knew straight away who was coming.
She was so pissed off and she was really irritated with the IV in her wrist. It was heartbreaking as she pleaded with me to remove the IV. It took another ten minutes or so to calm her down and eventually she fell asleep.

When she woke up she was a lot less irritated and as soon as the nurse could see that she was holding her food down she removed the IV and oximeter probe.
Sadbh was delighted with this and not long afterwards we were discharged and we were on our way home.

Sadbh sang all the way home and was in such a great mood.
It seemed that she got this burst of energy as soon as we arrived home and she could not stop running around the house. We were very surprised with how happy she was.
As expected, her secretions were plentiful and also had a trace of blood after her surgery. We were not concerned, however we did keep a close eye on her throughout the rest of the day.

After an hour or so of burning up her energy it was time for a bath and trach care. It took her a while to fall into a deep sleep and once her heart rate dropped down to her normal sleeping rate, we started trach care. She did not budge once and afterwards she slept for three hours.
Katie even managed to take a nap for an hour or so. We were all wrecked from such a hectic morning.

Sadbh finally woke up with a huge smile. As soon as she was up she started a coughing fit. I was able to clear her trach without any difficulty and was rewarded with another big smile.

As soon as she was up and dressed, the fun and games continued. She was very eager to help out in the kitchen and after spotting me with a towel over my shoulder as I prepared dinner she too grabbed a towel and wore it over her shoulder.
Her appetite had returned in full and Sadbh had a massive dinner. As a treat we allowed her to watch a cartoon while she ate and after she finished her dinner she got some ice cream.

Later on she Skyped with her aunt and cousins in Portland and she could not stop kissing her cousins through the iPad.

Bedtime was hilarious as she tried to get as many binkys into her mouth as possible. At one stage she almost had four in there.
It took a while to get her off to sleep but she eventually dozed off.
Larissa is back working tonight so we know Sadbh should get a good nights rest.



All the best,

Wayne, Katie and Sadbh.

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