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.

Sadbh’s update – November 30th 2013

Danielle worked an hour later this morning and Sadbh was still sleeping soundly when she left at 7. I was fully expecting her to wake up shortly afterwards but she slept in until 8. She must have been exhausted.

Su Jin stopped by later in the morning to meet up with Nini but unfortunately Sadbh was a little cranky when she arrived.

Sadbh was very tired when it came time for trach care but as usual she had no desire in going to sleep. We managed to get trach care taken care of and once we were done we headed off to Green Lake. The hope was that she would either fall asleep in the car or once we got her into her stroller but Sadbh did not want to miss out on any of the fun.

She wanted to get a Christmas tree so we picked one up on the way home. Needless to say the evening was full of excitement as we got the tree set up with lights and all the decorations. Last year Sadbh smashed a few of the decorations in an attempt to help out, this year she was a much more helpful and thankfully all the decorations survived.

By bedtime Sadbh was wiped out. She has been running a slight temperature today and her heart rate is a little higher than usual. We’ve also had to suction more times today than we have in the last month.  Hopefully it is nothing serious and that she will be fine in the morning.

New photos.

Photos from November 30 2011.

Photos from November 30 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 29th 2013

Sadbh slept great and was up at 7 ready for action. She joined us in bed for a snuggle but soon got bored and wanted to go play downstairs.

After such a busy Thanksgiving we decided to relax and take it easy for the day. We had a lot of fun playing with Sadbh and when it came time for trach care she did us a huge favor and too her nap.

In the evening Katie and Nini went out for dinner so Sadbh and I hung out at home and ate ice cream and watched a couple episodes of Wallace and Gromit. She loved them and wanted more but it was soon bedtime.

Unfortunately, she had no desire to go to bed so it took almost an hour and a half before she finally gave in and fell asleep.

New photos.

Photos from November 29 2011.

Photos from November 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 28th 2013

I took over from Crystal at 6 this morning and she was almost out the door before I could get any information on how Sadbh’s night was. It was like trying to get blood out of a stone but soon I was able to get the details of Sadbh’s night. Typically the night nurse will provide a detailed rundown of how the night went before leaving.

Regardless, Sadbh had a good night and woke up upset shortly after 7. She really wanted Mommy and had no interest in seeing me. I was able to convince her to calm down long enough to be able to unhook her equipment so I could bring her upstairs to Mommy. From then on she had a great morning.

We were hosting Thanksgiving so it was a very busy morning around the house. Sadbh was in a very good mood and kept herself busy playing with her toys as we prepared dinner.

She put up her usual fight when it came time for trach care but eventually she calmed down and allowed us to get things done. After trach care she fell asleep so we were able to blast through the rest of the dinner preparations.

Sadbh was sad that a couple of her friends could not make dinner since they were sick. In fact we were all sad that they could not make it.

She was excited though to see Luna and Cora when they arrived.

They girls did not hesitate in getting down to some serious fun. They had so much energy and it did not run out until well after 10.

Thanksgiving is such a wonderful holiday and we are so grateful to get to spend it with great friends and to have Nin spend her first thanksgiving with us. We are also grateful for our friends and family that could not make it tonight or that were travelling.

New photos.

Photos from November 28 2011.

Photos from November 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 27th 2013

Sadbh woke up bright and early and could not wait to get upstairs to Mommy.

After a nice snuggle we headed downstairs to see if Nini was up. Nini was still fast asleep so Sadbh snuck into her room to try and wake her up. Nini must have been in a very deep sleep as it took almost ten minutes for Sadbh to finally wake her up.

As soon as Sadbh was done with breakfast we headed up to Trader Joes for a walk and it was the slowest walk ever. Sadbh took her time and she enjoyed every step of the way.

To speed things up I gave her an occasional piggyback but she thought it was funnier to block my eyes so I could not see where I was going.

Nini helped out with trach care today and she did a fantastic job. Sadbh fought us hard and when she finally gave in we were all exhausted. Unfortunately, she would not go to sleep afterwards so it make for a long tiresome day.

Surprisingly Sadbh had a fun evening and spent most of it playing with Nini.

Bedtime came easy and just before she went to bed she came running out to the kitchen, grabbed me by one of my back pockets and dragged me backwards into her bedroom while laughing her head off. When I asked her if she wanted me to snuggle her to sleep she grabbed the other pocket and dragged me out of her room. It was so funny.

Crystal, our night nurse, handed in her notice to the agency yesterday. We were looking for a replacement anyway as she is very noisy and does not seem to be fully focused on Sadbh throughout the night.

We meet with a potential candidate this even and while she seemed to be well qualified we have reservations and don’t think she will be a good match for us.

New photos.

Photos from November 27 2011.

Photos from November 27 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – November 26th 2013