Sadbh’s update – December 4th 2012

Larissa was back working last night and it was a good thing since Sadbh was so restless. Her heart rate was up and down, however Larissa made sure that she kept sleeping.

It all worked out and Sadbh slept right through until 7:10.

She woke up in a great mood and was ready for breakfast as soon as she was dressed.

Once her belly was full it was time to head downstairs to play in the basement for a while.

Shortly after Caity started her shift she took Sadbh out for a walk for 40 minutes in the sunshine until the weather changed resulting in a quick retreat back to the house.

Sadbh had a lot of fun and enjoyed being out in the good weather while it lasted.

It was a good time to have lunch and Sadbh had a big appetite.

Once she was done eating it was time for Sadbh to play with her crayons so Granddad thought it would be a perfect time to try out her trach cap.

She did great and lasted without any problems for 9 minutes.

A short while later it was time for her bath and trach care. It all went well and Sadbh got to sleep for almost an hour before we woke her up so she could make it to her appointment at Seattle Children’s Hospital to see Dr. Inglis.

Sadbh was happy to see Katie but was still obviously very tired.

Sadbh did get very fussy when she was getting checked in and after a big struggle she weighed in at 26lbs and measured 2 foot and 9 inches.

Thankfully she calmed down after we were brought into Dr. Inglis’s room and even asked us to put her cap on while we waited for the doctor to come in.

We decided to hold off until Dr. Inglis came in so he could get a chance to see how she did.

Sadbh was very shy as soon as Dr. Inglis and his assistant, Pam, entered the room and she had no desire to put the cap on. Thankfully she eventually allowed us to put it on and she  was soon chasing bubbles around the room. She managed to tolerate the cap for the duration of our meeting and did not need to have it removed for almost 45 minutes. 

Dr. Inglis was very encouraged by how good Sadbh was doing while her trach was capped and both Katie and I were floored when he concluded that he felt that Sadbh would probably be close to being able to have her trach removed.

He instructed us to keep practicing using the cap more often and for longer and that we should even test using the cap while she slept at night. We would continue to keep her hooked up to her oximeter to make sure her blood oxygen level remained in the upper 90% range and if she can maintain for an extended amount of time without any difficulty that our next steps in a couple of months would be possible decannulation.

Even though her vocal cords were not fully working he implied that they were opening enough to allow her to breath without the need of a trach.

As you could imagine, Katie and I were shocked and over the moon with this news.

We have our homework to do for the next month and cannot wait until our next visit with Dr. Inglis in January.

After we left the hospital we headed off to University Village to meet up with Nana, Granddad, Ali-Baba and Santa.

They were all thrilled with the good news and they could not stop hugging Sadbh.

Sadbh was not thrilled to see Santa and had no desire to sit in his lap. She was bawling crying and did her best to get as far away as possible. Thankfully after a while sitting on Katie’s lap she finally calmed down long enough for the photographer to take a few good family shots. As soon as we were done with the family photo we tried to hand her off again to Santa but she got very upset to we decided to call it a day.

I was wondering why it was so quite at Santa’s hut and as we were leaving I discovered it was due to the fact that Monday’s and Tuesday’s are typically for pet photos.

The rest of Sadbh’s evening was fun and we capped her trach a few more times. She did great and averaged around 30 minutes each time.

We even tried capping her trach for 5 minutes after she fell asleep and she did well. Her blood oxygen level averaged at 99%, however her heart rate did fluctuate a little and you could tell that she was uncomfortable.

Obviously, we will have to keep practicing using her cap in the hope that she will get used to the sensation so we can get her closer to having her trach removed sometime in 2013.

New photos.

Photos from December 4 2011.

All the best,

Wayne, Katie and Sadbh.