Sadbh’s update – December 7th 2013

Sadbh woke up at 7:30 in a great mood after a great night sleep. As usual she wanted to head upstairs to Mommy. She helped out by unhooking her equipment herself and next thing we were off upstairs.

All in all Sadbh had a very lazy day. We got trach care out of the way around 11am and since Sadbh was looking tired we all jumped in the car to go for a spin. Katie and I hoped that she would take a nap but she was too happy checking everything out to fall asleep.

Oddly enough, after an hour and a half of driving around Sadbh eventually fell asleep, unfortunately we were only ten minutes from home so it was not a long sleep.

This evening she was wired to the moon but got to Skype with Aunt, Uncle and cousins in Hong Kong.

When it came time for bed she wanted to go to sleep alone and kicked Mommy out of the room. This lasted for a few minutes before she was calling for Mommy to come in to sit next to her while she went to sleep. Within minutes she was fast asleep.

She still has a lot of secretions and needs to be suctioned. Thankfully she does not have a cold but it seems that she is dealing with the equivalent of a runny nose.

New photos.

Photos from December 7 2011.

Photos from December 7 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 6th 2013

Sadbh had a good night and woke up around 7. She was very congested so after a few suctions we gave her a nebulizer and eventually managed to get her airway clear.

Breakfast was served early as we planned on going to the zoo as soon as it opened. Sadbh was vey excited and ate her food with enthusiasm.

It was a sunny morning but frigid cold so the zoo was quite empty. Even the penguins were complaining about the cold.

Sadbh was eager to make her way to the carousel so she could ride the horses. She really enjoyed herself and did not want to leave.

As we continued through the zoo Sadbh was starting to feel the cold so we decided to head back to the car to get her warmed up.

Sadbh had napped on the way home so when it came time for trach care she was wide-awake. It took a little convincing to get her swaddled and ready for trach care but once we got her set up it was a breeze.

The rest of Sadbh’s evening was spent playing, reading, watching her iPad and singing for uncle Neil.

When it came time for bed she sang, “so long, farewell” from the sound of music and she managed four encores.

New photos.

Photos from December 6 2011.

Photos from December 6 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 5th 2013

Sadbh needed to be suctioned a few times during the night and Helen was able to take great care of her.

All in all she had a good night sleep and she woke up well rested around 7am. She wanted to get upstairs to Mommy but was willing to hang out with me for a while so we could give Mommy a rest before waking her up.

Caity, Sadbh’s nurse supervisor stopped by to recertify Sadbh and Sadbh was excited to see her.

Sadbh’s morning was full of fun and she was very tired when it came time for her nap. She was very cooperative for a change and she really enjoyed the Christmas carols that Jenna sang to her.

When asked if Santa was coming she said “No, because I’ve been naughty”. I have to applaud her honesty and it seems that she took the easy way out. Rather than be pressured into being good with the promise of Santa coming with nice toys, she has resigned to being naughty while writing Santa off from the very start.

It took a while for Sadbh to fall to sleep but she eventually did and slept soundly for ages.

She woke up in a wonderful mood and had so much energy.

For the next hour or so we flew around the house in her pretend rocket ship.

Bedtime was also a lot of fun and we did a good job at tiring Sadbh out.

New photos.

Photos from December 5 2011.

Photos from December 5 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 4th 2013

Sadbh slept great and did not have to be suctioned. She was congested after she woke up and I managed to suction a couple of nice mucus plugs from her trach.

After breakfast we gave her a nebulizer and this helped keep her trach clear and easy to suction.

It was frigid cold so with Sadbh bundled up nice and warm we headed off out for a stroll. She did not want to go at first but as soon as she saw all the frost she got excited and wanted to go find Frosty the snowman.

Oddly enough we did find Frosty the snowman but it was a decoration hanging over the doorway of a house close to Nora’s woods.

Sadbh enjoyed being out in the crisp cool air and by the time we got back home she had worked up quite the appetite. She had a huge feast and she could hardly keep her eyes open by the time she finished.

Our plan was working as we planned on changing out her trach as part of her monthly trach care schedule.

We are actually almost a week behind due to a delay with our medical supply company processing our orders. Unfortunately they delayed our orders for the past few months but thankfully they are working to get us back on schedule for next month. Fingers crossed.

Trach care went well and when it came time to put in the new trach it took a moment to get it in. Her head was turned slightly to her right, which reduced the size of the entryway for her stoma.

She slept right through and only woke up when I was tying up her trach ties.

She had a fun evening and was very excited when Mommy arrived home.

We showed Mommy how Sadbh sits on my legs pretending to be on a horse. It was so funny and Mommy could not stop laughing. 

By now she was extremely tired and when it came time for bed she was out like a light in seconds.

New photos.

Photos from December 4 2011.

Photos from December 4 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 3rd 2013

Helen suctioned once during the night but overall Sadbh had a great night sleep. In fact since Helen was working we all got a great night sleep. She’s great when it comes to looking after Sadbh and she’s so quiet.

Sadbh woke up just after Helen left at 6 and she was in an excellent mood.

When it came time for Mommy to leave she was not pleased. In her excitement her trach filled up with secretions so we suctioned her trach and gave her a nebulizer. Thankfully her lungs sounded clear so it seems that she’s not dealing with a serious cold.

She had a fun day playing, reading and painting and when it came time for a walk she was simply too tired.

As soon as she finished her snack we gave her a bath and Jenna helped with trach care.

Once we were done she fell asleep for a couple of hours and hardly moved the entire time.

In the evening Sadbh and I used a laundry basket and pretended that it was a space ship. She could not get enough and had me running her around the house for ages. It was quite the work out and she refused to allow me to slow down when I got tired.

When it came time for bed she wanted to go to sleep by her self but was soon calling for Mommy to come snuggle her to sleep.

New photos.

Photos from December 3 2011.

Photos from December 3 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 2nd 2013

Sadbh slept well but needed to be suctioned a few times throughout the night. Katie set her up with a saline nebulizer first thing this morning and this helped humidify her trach.

She was running a little temperature so Jenna and Katie gave her some Tylenol which seemed to help quite a bit.  Sadbh loved the grape flavor and immediately asked for more medicine.

As I headed back to work for the first time in three months I asked Sadbh for a hug and a kiss but she did not care. She turned to Katie and said “Mommy, you don’t go to work”. I at least hoped that she would give me a kiss but she was more concerned with the prospect of Katie leaving that she hardly even noticed me.

Eventually, I was able to steal a kiss before heading off.

Sadbh had a fun day with Nini and Jenna and when it came time for trach care she asked for Nini to hold her trach and for Jenna to clean. Everything worked well and not long afterwards Sadbh fell into a deep sleep.

Sadbh woke up in a fantastic mood and with a lot of energy to burn. As soon as I walked into the house she came running and gave me the biggest hug. It was quite the greeting.

Ali-Baba and Kirk came over for dinner this evening and by then Sadbh was like a zombie. She is definitely fighting something and it was very obvious in her eyes.

Despite this she was in a very good mood and was still full of beans.

It was hard saying good-bye to Nini and Sadbh did not want her to leave. Hopefully she will be able to come back for a visit early in the New Year.

Sadbh was exhausted when it came time to go to bed but she still put up a fight. She got a nice big snuggle in with Mommy and after a while she soon dropped off to sleep.

Crystal called in sick for tonight’s shift however we were fortunate that Helen was available and signed up to take of Sadbh tonight.

Even though I went back to work today after three months leave of absence, it was also my last day of work. Katie and I recently made the tough decision that I would pack in my job to be a full time stay at home dad.

Even though we are still a long way from resolving Sadbh’s bilateral vocal cord paralysis, it became apparent that it would benefit Sadbh immensely for me to stay home to provide her consistent care. She has made fantastic progress in daytime trach capping over the past three months. We have gone from a daily average of three hours per day to over ten hours.

New photos.

Photos from December 2 2011.

Photos from December 2 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 1st 2013

Sadbh’s temperature and heart rate was normal throughout the night but she needed constant suctioning. Shortly after Danielle arrived Sadbh had a hard time breathing so Katie and Danielle suctioned to clear her airway.

Danielle suctioned almost every hour but thankfully Sadbh slept right through the night.

This morning her airway seemed very dry but, after some suctioning, Katie was successful in removing a sizable mucus plug.

We gave her an Albuterol nebulizer and this helped clear her lungs up a bit, however we still had to suction a lot throughout the day.

Despite all this Sadbh was in an excellent mood and had so much energy. She wanted to make sure that everyone in the house was awake and could not wait to go downstairs to wake Nini up.

It was a very windy day but rather than staying indoors we headed over to show Nini the Fremont and Ballard markets.

The Ballard farmers market was quieter than usual but this did not dampen Sadbh’s spirits. She loves the market and enjoyed the extra free space for a change.

Before we headed home we stopped off to see Ali-Baba and Kirk. Sadbh was so excited when she found out that we were stopping by.

Sadbh was exhausted when it came time for bed but before she went down we gave her a saline nebulizer. Her lungs sounded better this time around so we decided not to bother with the Albuterol.

Hopefully she will have a better night tonight.

After three months leave from work to look after Sadbh I am returning tomorrow. It’s going to be hard to go back to work, but thankfully it will not be for long.

New photos.

Photos from December 1 2011.

Photos from December 1 2012.

All the best,

Wayne, Katie and Sadbh.