Sadbh’s update – January 31st 2013

Sadbh spiked a fever not long after Larissa’s shift started so Larissa gave her some Ibuprofen and got her back to sleep.

Her temperature dropped back down and her other vitals stabilized and Sadbh had a good night sleep.

She was wide-awake and very happy a little after 6am. Unfortunately, Larissa had already left so Sadbh could not thank her for taking good care of her during the night.

After breakfast she had a busy time playing with her kitchen and she was over the moon when Ali-Baba arrived.

They both got caught up on some good playtime and Sadbh was so excited.

When it came time for trach care, Sadbh was pooped and fell into a deep sleep after she was done with her bath.

Trach care went well but Sadbh only got 45 minutes sleep. This worked out quite well as she got to spend more time playing with Ali-Baba.

Sadbh had an appointment with her homeopathic doctor, Krista, today and she received an Opium remedy for her troubles.

She was very tired all evening but was still quite playful. She had Granddad and her doggie, Regal, lying on the ground pretending to sleep, much to everyone’s amusement.

Bedtime came much earlier than usual tonight as Sadbh fought hard to keep her eyes open.

She was very cuddly and full of kisses, but was out for the count by 7:20. Her temperature was starting to climb over 100 so we gave her Tylenol just before she dozed off.

New photos.

Photos from January 31 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 30th 2013

Sadbh had a better sleep and was a little bit more relaxed. She was up at 7 and was in a good mood. 

Caity was working today and Sadbh was happy to see her.

There was a break in the weather so Sadbh, Nana and Caity got to head out for a quick stroll. Sadbh was delighted to get out of the house and she really enjoyed the walk.

Trach care went well until Sadbh woke up as Caity was securing the trach ties, however, Sadbh soon fell back to sleep so they were able to finish up without any problems.

She slept for over two and a half hours and woke up in a better mood.

Caity noticed that Sadbh was running a temperature slightly higher than usual so she kept an eye on her respiratory rate and heart rate throughout the day.  Thankfully both were tracking as normal.

When it came time for bed tonight, Sadbh’s temperature and heart rate were starting to increase. This is a definite sign that she’s fighting something. Hopefully it’s nothing serious and that she will feel better in the morning.

New photos.

Photos from January 20 2013.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 29th 2013

Sadbh slept a little bit better last night, but still not great. She woke up a very happy little girl around 7:20 and was very hungry for breakfast.

Despite the wet weather, Sadbh got to head out for a nice walk through the neighborhood. She was bundled up nice and snug in her stroller and she was delighted to be outside.

It was a fun filled morning and when it came time for her nap she was wiped out. She slept for an hour and a half and woke up very hungry. As soon as she was dressed she devoured a plate of pasta, cheese and other yummy foods.

Later in the afternoon Sadbh had an appointment with her cranial sacral doctor, Dr. Cavanaugh. He had some serious work to do since she was so sick over the past few weeks. He relieved a lot of pressure around her neck and torso due to all the coughing and extra effort to breathe.

It was a very productive visit and Sadbh will undoubtedly feel much better as a result.

We all had a wonderful evening and Sadbh had so much fun. It was amazing the amount of energy she had and when it came time for bed she had no desire to slow down.

I prepared her a nice bath however it seemed a little bit too hot for her royal highness. She actually asked me “daddy, cold water please” and of course I could not let her down.

It took forever to get her to sleep. I usually keep the monitor close to me as Katie tries to get Sadbh to sleep. This is so I can respond if needed.

Tonight I heard Sadbh say, “Wayne, water please”. At least she has manners.

She finally fell asleep so Katie and I started trach care. It went well until we were securing her trach ties. She woke up extremely upset and fought us tooth and nail. It was very stressful and but we were able to secure her trach tie and eventually get her calmed down.

New photos.

Photos from January 29 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 28th 2013

Sadbh had a restless night and woke up at 7. She immediately started to ask for Granddad and Nana and could not wait for the fun and games to start.

She had a great morning with plenty of playtime. She worked up a big appetite and ate a huge breakfast.

We are narrowing down our nanny candidates so today one of the nannies came by to meet my parents for a second interview.

It was a very good meeting and Sadbh got to play with her for a couple of hours.

Next it was time for Sadbh to take a nap. She had no problem going to sleep and slept for an hour and a half.

After dinner she wore her trach cap for 22 minutes until her airway started to get very dry. She had been wearing her Passy Muir Valve all day and I think it dried out her trach.

Later on she got to Skype with her aunt Trish and cousin Conor in New Zealand. She had a good laugh with her cousin and she had a great time showing off her many hats.

Later when it was time for bed, Sadbh started wearing the glasses and mouth from her Mr. Potato Head toys. It was comical and eventually she was stark naked running around with her favorite woolly hat and glasses.

Even though she was very tired, it took a while to get Sadbh to sleep. She was wired and had no desire to sleep.  Just before she dozed off, she suddenly grabbed her kitty cat and said “kitty fly” as she moved kitty through the air.  She then turned and started giggling, cracking herself up about the flying kitty.  It was hysterical.

As soon as she dozed off we were able to manage trach care.

Hopefully she will have a much better night sleep tonight.

New photos.

Photos from January 28 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 27th 2013

Sadbh slept like a log and did not budge all night. It must have been a boring night for a change for Julie, as Sadbh did not even need to be suctioned once.

Julie finished her shift at 6 and Sadbh slept on for another 45 minutes. She woke up very happy and gave me a big smile as soon as she saw me.

After breakfast she started to have a coughing fit but thankfully she did not get sick.

We had a fun filled morning and before we knew it, it was time for her nap and trach care.

It was another wet day so our plan was to let Sadbh sleep for a while as we prepared all her equipment and snow clothes, and as soon as we were ready we would put her into the car and head up to the mountains for a bit of fun in the snow.

Sadbh slept through trach care but woke up just as Katie and Granddad were finishing up. She was in a happy mood and after Katie explained what our plan was she could not stop talking about snowmen.

She was too excited to sleep in the car and as soon as we arrived at Snoqualmie Pass, Sadbh could not wait to get out of the car. It was snowing like crazy and she was looking out the window with a huge smile on her face.

Katie bundled her up good and proper and handed her out to me while she got ready. Sadbh had this hilarious look on her face. I sat her up on the top of this snow pile and she just sat there in complete awe of all the snow around her. Granddad built her a little snowman and she was delighted with it.

The fun was only starting as we headed up the hill for some sledding. Sadbh was nervous at first but was soon asking for more.

She was having a fantastic time but we could hear that her airway was starting to dry out due to the cold dry air.

We figured that she would sleep on the trip home but she was still very excited from all the activity.

Bedtime came earlier than usual for Sadbh and she was full of hugs and cuddles. I have a scruffy beard since I haven’t shaved in a few days and Sadbh just sat there and rubbed my chin for a while. She couldn’t stop laughing and we thought she would never go to sleep.

She finally gave in and dozed off into a deep slumber.

Julie is working again tonight so we are sure that Sadbh will get yet another good night sleep.

New photos.

Photos from January 27 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 26th 2013

Since we did not have a nurse last night, Granddad and Nana took the first shift and watched over Sadbh until 1am. I took over from 1 to 6 and thankfully Sadbh slept great. She did wake up around 2 and was very upset. It did not take long before she calmed down and soon was fast asleep.

Katie took over at 6am and as I headed upstairs Sadbh started to talk in her sleep. She started saying, “meow” and both Katie and I had a hard time trying to stifle our laughter.

She finally woke up 45 minutes later and she was in a great mood. For breakfast Sadbh had three bowls of cereal and still had room for more food.

We meet a potential new nanny today and Sadbh liked her. She had all the necessary qualifications and seemed very interested in taking care of Sadbh. We now have three promising candidates and hope to make a decision in the next few days.

Sadbh was very tired when it came time for her nap so we had no problems getting her to sleep for trach care.

We are training my mum on trach care so she joined in to watch how we do it. Sadbh slept for about 45 minutes after trach care and despite the lack of sleep she had a lot of energy.

She had a great evening and even got to wear her Passy Muir Valve for quite some time. At one stage she wore her cap for 15 minutes without any problems. Hopefully we will be able to get her back on track after setback for the past couple of weeks.

It was a fun evening and she got to spend most of it playing with Granddad and Nana.  

Julie is back working tonight so we should all be able to get a good nights rest.

New photos.

Photos from January 26 2012

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 25th 2013

Sadbh had another great night sleep and woke up in a great mood at 7 o’clock. She did not want to leave her crib and just wanted to play. Later on she had a big coughing fit and ended up getting sick all over the place.

It was a very scary moment but thankfully she did not get sick on or around her trach.

Sadbh was ready to go after she was cleaned up and could not wait to play with Granddad.

She had a big breakfast and afterwards she headed out for a walk around the neighborhood with Nana, Granddad and nurse Caity. She really enjoyed one house in particular. It is owned by an artist who has his creations set up all over the house and fence. Sadbh was fascinated and even got to meet the owner.

The house was surrounded with vintage motorcycles, pick up trucks and cars It was quite the experience.

Trach care was later in the day and Sadbh slept for almost 3 hours and woke up in a fantastic mood.

She wore her Passy Muir Valve for a couple of hours but all of a sudden she had difficulty breathing.

Her airway dried up quite a bit so I had to suction and drop saline in to moisten it. This worked and she was soon able to relax and breathe much easier.

Both of us were very stressed out and after all the commotion we were able to relax.

She had a great evening playing with Katie and me and when it came time for bed she was a little giddy. It took a while longer than normal, but soon she was off to sleep.

We just received a call from Sadbh’s night nurse letting us know that she is sick so both Katie and I will be taking turns looking after Sadbh through the night.

New photos.

Photos from January 25 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 24th 2013

Sadbh slept great and she was so relaxed she even set her heart rate alarm off a couple of times.

She finally woke at 7 and was very excited to see Nana and Granddad.

Granddad was first to get up and Sadbh had a great time playing with him.

She could not wait for Nana to wake up and was thrilled when she finally did. Since Nana retired she has gotten very fond of sleeping in.

Later in the morning since the weather was nice, Sadbh, Nana and Granddad all headed out for a nice long walk through the neighborhood. They came across a couple of dogs that Sadbh really likes. One of the dogs likes to play fetch so he usually nudges his ball out through the fence in the hope that it will get thrown back in so he can fetch it. This kept Sadbh entertained for ages and she really enjoyed all the excitement.

On the way home they came across a flock of redbreasts forging for food. Sadbh watched in awe and was fascinated with all the activity.

She had a great evening and was so full of energy.

When it came time for bed we gave her a bath and she insisted on filling up her tub with her toy fish, a mechanical frog and her bath books. There was hardly any room for her but it all worked out and she had fun.

It did not take long to get her to sleep and as soon as she was out Katie and I managed trach care. Katie was extremely quick since we were both tired and got it done in 7 minutes.

Sadbh slept right through and was in a deep sleep when we placed her in the cot afterwards.

New photos.

Photos from January 24 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 23rd 2013

Sadbh had a decent but not a great night sleep. She woke up around 1am and it took an hour and a half for Larissa to get her back to sleep. She really only fell into a deep sleep around 5.

She woke at 7 and it was off to the kitchen for breakfast. She had a good appetite and devoured her food.

Caity worked today and Sadbh was happy to see her. They had a fun morning and when it came time for her nap Sadbh insisted on a bath even though trach care wouldn’t happen until later.

She slept for a couple of hours and had a big appetite when she woke up.

I arrived home and Sadbh was in a fantastic mood. She grabbed a bunch of her hats and before I knew it we were running around the house wearing her hats. It was so much fun and she could not stop laughing.

My parents arrived back from their holidays and Sadbh waited eagerly by the front window for them. Her long wait paid off and she was ecstatic as soon as they walked in the door.

She could not get enough of them and when it came time for bed she wouldn’t go. She got so upset and it took a while to get her calmed down.

Katie and I managed trach care as soon as she was asleep and thankfully she slept right through the whole thing.

New photos.

Photos from January 23 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 22nd 2013

Sadbh had such a deep sleep last night and she only moved a couple of times. Her blood oxygen level was where it was supposed to be and her heart rate dipped down below 75 a few times setting off her alarm.

It was really good that she is finally getting a well-deserved rest.

Larissa kept a close eye on her all night and made sure that she was comfortable.

Sadbh woke up just before 8am and she was delighted to see Katie looking after her.

She had a big breakfast and soon afterwards it was time to play with her coloring books and crayons.

Unfortunately, she did not have a nurse working today so Katie stayed home to look after her.

It was a fun filled morning and even Ali-Baba came by to add to the fun.

Eventually Sadbh grew sleepy so Ali-Baba gave her a bath while Katie prepared for trach care.

Sadbh slept like a log afterwards but only slept for and hour and a half.

After her nap she was very playful. She insisted on playing with the seat of her stroller and Elmo had to join her.

Her evening was spent playing and having more fun. She greeted me with a huge smile when I arrived home from work and immediately started to help me bring my things into the house.

We interviewed another candidate for the nanny position this evening and initially Sadbh was not too pleased. She definitely did not like the fact that there was someone else in the house taking the attention away from her. The nanny handled it great and was very sweet towards Princess Angry Bird. Sadbh warmed up to her soon enough and she started to have a lot of fun playing with her toys after we all headed down to the basement.

Katie had a much easier time getting Sadbh to bed tonight and she was out cold by 8. Interestingly, her blood oxygen level was hovering around 93% so we kept a close eye on her until Larissa took over at 10.

New photos.

Photos from January 22 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 21st 2013

Sadbh woke up around 11pm last night and this time Julie knew exactly what song she needed to sing to get Sadbh back to sleep. It worked a treat and Sadbh was back to sleep in no time.

She had a good night but never really fell into a deep sleep. That said, she slept until 6:45 and when she woke up she was in a great mood.

Since we did not have a day nurse today I stayed home from work to watch after Sadbh.

Both Sadbh and I had a fantastic day and she kept me busy chasing her around the house. She had a few coughing fits in the morning but thankfully did not throw up like she has over the past week or so.

By noon I could tell that she was getting very tired. It took a little bit of persuasion to get her to go to bed but she fell asleep in my arms as I sang her “the wheels on the bus”. She quickly fell into a deep sleep and did not move once for the first two hours and after she changed positions she slept on for another hour.

Yet again, she woke up in a great mood and after getting dressed we headed out to the kitchen for lunch. She had a nice big lunch and afterwards it was time to play with her coloring markers. After a while she got bored with her coloring books so she started to draw on her arms. She really liked the end results and called them flowers. Thankfully they are washable markers so I was able to clean her up with out any problems.

After dinner Sadbh, Katie and I were hanging out in the basement when Sadbh walked up to me and gave me a kiss on the cheek. I was completely taken by surprise as I usually have to plead with her for a kiss, and only then does she give me her cheek to kiss.

She did this a couple more times and it left me floored.

For the first time in almost two weeks, Sadbh wore her Passy Muir Valve. She did struggle at times due to all the secretions and at one point she grabbed my hand and walked me to the suction machine and told me that she wanted to be suctioned. Other than that she did great but it got to be a bit much for her after an hour, so I changed it out for her humidifier nose.

It took over an hour to get Sadbh to sleep tonight and since we did not have a second set of hands helping out today we had to do trach care after she finally fell asleep.

Unfortunately Sadbh would not cooperate so we had no choice but to forego trach care for today.

New photos.

Photos from January 21 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 20th 2013

Sadbh had her best night all week and her vitals were all where they should be. She did wake up shortly after midnight, after an apparent nightmare, however Julie sang her back to sleep. When she picked Sadbh up to rock her back to sleep, Sadbh would say "no" for each song that she started to sing. Julie tried a few different song until she came to "wheels on the bus" and Sadbh said yes with a big smile. What a diva!

She did not budge until 7:20 when she woke up with a huge smile.

Her morning was great apart from a little puke session, but all in all her energy level was back and she had a lot of fun playing around the house.

Later on when she started to show signs of getting tired we poured her a bath and started to get everything set up for trach care and her monthly trach change. Trach change was actually scheduled for yesterday, however we gave her another day so she would have more energy and feel a little more rested.

This worked out quite well and she slept right through the whole thing.

She did wake up as soon as we finished, but she was in a happy mood and wanted to eat.

Later on she Skyped with her cousins in Portland and they played with her over the computer, much to her delight.

She had a great evening and since the sun was out we decided to head out for a quick walk. She had not been out of the house apart from going to the hospital or the doctors all week, so you could only imagine the excitement in her eyes. It was very cold so we bundled her up extra warm and set off for Nora’s Woods.

It was actually good for us all to be out since Katie and I were also starting to go stir crazy from being cooped up in the house for so long.

Everything was going great so we pushed on up to Madrona to take a look at Mt. Rainier and Lake Washington from Sadbh’s favorite viewpoint.

She started a huge coughing fit along the way and ended up puking up all over her glove and blanket. Katie was quick to get her cleaned up while I suctioned her trach. She recovered well so we decided to keep going since we only had a couple of blocks to go. It was worth it since the view was so spectacular and Sadbh had a blast wearing my gloves. Her hands looked huge but she did not mind in the slightest.

Later this evening she started coughing again and unfortunately she ended up getting sick again. We could tell that she was not very comfortable so we hooked her up to the nebulizer and gave her some Tylenol and her antibiotics. Her secretions were constant and she needed to be suctioned nonstop.

Even though she had a couple of hours to go before her bedtime she was finding it very hard to keep her eyes open.

By now both Katie and I were exhausted and our nerves were frazzled. I had just mentioned to Katie that I was glad that Su Jin was working in the morning so both of us could go back to work when all of a sudden Katie received a text from Su Jin letting us know that she was sick and would not be working in the morning.

Unfortunately, none of the other nurses can cover the shift tomorrow so one of us will have to stay home to look after Sadbh.

It took a while to finally get Sadbh to sleep and we are hoping that she settles down to a nice relaxing night sleep.

New photos.

Photos from January 20 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 19th 2013

Sadbh turned the corner last night and her blood oxygen level improved as the night wore on.

She awoke around 5am and asked for her mammy. She was in a much better mood when Katie came down.

Her appetite had returned and she had toast, banana and strawberries for breakfast.

Unfortunately, she had a huge coughing fit and puked up all over the place. She covered herself, Katie and half of the basement.  Oddly enough she was still in a good mood.

Compared to the past few days, Sadbh was full of beans and wanted to play and have fun.

She had a great morning and around 10 she started to show signs of getting tired. We gave her a nice bath and got her ready for trach care.

After taking her meds, we swaddled her up and soon she was fast asleep.

Trach care was easy today and once we were done we placed her in the cot.

She was quite relaxed, however her blood oxygen level was down between 90 and 92%.

I watched over Sadbh while Katie took a well-deserved nap. I set up the oxygen bag and placed it next to Sadbh’s trach allowing her blood oxygen level to increase to 98%. After a while I turned it off only to watch her level drop back down to 90%.

She woke up the next time I started to give her oxygen and was very upset. She wanted her mammy and would not take no for an answer. Thankfully her excitement got her blood oxygen level back up to an acceptable level so the only thing I had to work on was getting her calmed down without waking Katie.

Eventually she caved so I got her dressed and we headed out to the kitchen for a bite to eat.

The next few hours was spent playing and having fun.

She took another nap around 3:30 and this time Katie sat with her to make sure her blood oxygen stayed above 93%.

About an hour after falling asleep her blood oxygen hit 98% and her heart rate finally dipped down to 98. Both Katie and I were delighted and knew Sadbh had turned the corner and was on the road to recovery.

She had a very good evening and had a lot of energy after her two-hour nap.

It is also good to see her eating again.

When it came time for bed it took a while to get her settled down. Her heart rate was quite high and we figure this was a result of the nebulizer. The Albuterol medicine that we gave her seemed to perk her up so she was extremely giddy and playful at bedtime. She wanted Katie to turn on “The wheels on the bus” video on the iPad and when this was not happing she started to sing the song. It was very amusing to say the least.

Julie is working again tonight so Sadbh will be well taken care of.

New photos.

Photos from January 19 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 18th 2013

It was a very long night but Sadbh slept well for the most part. Thanks to Tylenol and Ibuprofen her temperature stayed below fever but still remained higher than normal.

Her heart rate and repertory rate was also higher than normal and her blood oxygen was hovering around 94%. At one point she stood up in her cot and asked for water, in which she gulped down with great satisfaction.

I covered the first part of the night and at 2:30am Katie came down to take over.

Sadbh woke up around 7:30 and was still very weak. She only wanted to sit in Katie’s arms.

She had an appointment for 8:50 with her pediatrician, Dr. Hathaway so we got her ready and headed off.

Sadbh’s appetite returned as we waited in the clinic and so too did her energy level. She was eager to walk around and you could tell she wanted to make up for being so out of it all week.

The interesting thing that we noticed today was that if Sadbh was left to play, she would have all this energy for 10 to 20 minutes, and then all of a sudden she could hardly keep her eyes open.

Dr. Hathaway could tell that Sadbh was slowly improving; however she still gave her a couple of shots of the vaccination. 

We went over Sadbh’s night in great detail, specifically the details around Sadbh’s blood oxygen dipping below 90%.

Dr. Hathaway was surprised by this and asked us to keep an eye on her blood oxygen level throughout the day and night. Her recommendation was that if it dips below 93% for an extended amount of time that we should bring Sadbh into the ER as it could potentially mean that her infection could be developing into something worse.

By the time we were back in the car, Sadbh was out cold and very comfortable.

Ali-Baba stopped by to play and Sadbh was excited to see her.

After some light fun, Sadbh started to get tired and before long we were managing trach care.

For the past couple of days, Sadbh has not allowed us to swaddle her for trach care. We were thinking that it might have something to do with her breathing, so we decided to forego the swaddle today.

Ali-Baba helped out by holding Sadbh’s arms securely, while I held Sadbh’s trach in place so Katie could clean.  She was very good and did not put up a fuss whatsoever.

Sadbh was ready for some food and water. We tried to give her some pedialyte but she kept refusing it.

Later in the day Sadbh got to chat with Granddad, Gerdie, in New Zealand and instantly asked about Nana’s sore foot. My mum had hurt her foot some time ago, nothing serious, and Sadbh keeps saying “Nana, owwa” while pointing at her foot. Despite being sick herself, she still has time to think about others.

Her energy level improved throughout the evening but by bedtime she was exhausted again.

Her respiratory rate, heart rate and temperature were all good, however her blood oxygen level hovered around 91%.

This had us very worried so we gave her oxygen to bring her saturation level back up and called her doctors office.

The on-call doctor called us back eventually and explained that as long as her blood oxygen level stayed 93% and above, we should be fine. It was okay for us to administer oxygen if it dipped below, however if it continued through to tomorrow that we would want to bring her in.

Julie is working tonight and by 11pm Sadbh’s blood oxygen level was at 95%.

Hopefully she will maintain this rate for the rest of the night.

New photos.

Photos form January 18 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 17th 2013

Larissa had a tough night and Sadbh’s vitals where all over the place. Her temperature was on the high side, as was her heart and respiratory rate.  She had quite a few coughing fits and had to be suctioned constantly throughout the night. All in all, Larissa did a fantastic job keeping Sadbh comfortable, despite the situation.

I took over from Larissa at 6 and hoped that Sadbh would sleep on for a while so both she and Katie could get some rest.

Unfortunately, this was not the case and Sadbh woke up just as I entered the room.

She was not happy and wanted her mammy but she instantly calmed down as soon as Katie arrived.

Her morning was quite rough and she threw up a couple of times after having coughing fits.

Kara worked today and just after she arrived we loaded Sadbh up in the car and headed off to the doctor.

Sadbh was completely out of it during the short drive to the clinic and started to get sick all over herself just as we pulled into the car park. It was a very stressful moment as she was still buckled into her car seat and she even got some over her trach.

Dr. Hathaway was quick to see us and after checking Sadbh’s lungs she had her nurses take some blood samples so they could test to see if there were any other issues.

They also gave Sadbh two shots of her antibiotic, one in each leg, to speed up the process and she also gave her a nebulizer to help open up her airway and lungs.

Sadbh was not happy with all the injections and having to breath in the Albuterol mist.

Thankfully the tests came back negative for any other viruses.

When we arrived home, Sadbh was wrecked and she and Katie had a nice, snuggly nap in the living room.  Then the doorbell rang and it was Ali-Baba!  When Sadbh opened her eyes and saw her, she was over the moon.  She was extremely delirious as she walked her grandmother around the house, but she was having fun and it was great to see her up and about for a change.

It wasn’t long before she was wiped out again so Katie and Kara decided to start trach care.

The medical supply company came through very quickly on a request for a nebulizer, but I had to drive to their office to pick it up. Thankfully traffic was not a problem and I made it back half way through trach care.

By now Sadbh was wide-awake so Ali-Baba had joined in trying to help keep her still. She did not want to be swaddled so between Kara and Ali-Baba they had to work hard to keep her from moving around.

By the time she finally fell asleep she was extremely exhausted from working so hard to breath. Thankfully Kara was watching over her when she noticed Sadbh’s blood oxygen level drop down into the low 90’s. The color from her face started to drain and she was turning blue. Katie and Kara pulled out the oxygen mask and turned on her oxygen to 5 litres to bring her oxygen level back up. We are so grateful for Kara’s quick response.

Sadbh’s evening was up and down, but she definitely showed some signs of improvement. She drank lots of water and apple juice and even ate most of a slice of toast.

She was much more receptive to taking her medications and did not put up as much of a fuss when it came to her nebulizer.

We just received word that Sadbh’s night nurse cannot make it tonight so Katie and I will take shifts throughout the night to make sure that Sadbh is ok.

We have another appointment with Dr. Hathaway in the morning and we are hoping that Sadbh has a much better night tonight.

New photos.

Photos from January 17 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 16th 2013

Sadbh’s night started off quite bad as she had a big coughing fit that resulted in her getting sick. After she fell back to sleep, Larissa had to suction constantly until approximately 1am. Larissa kept her temperature stabilized by giving her Tylenol on schedule and thankfully the rest of the night was fairly restful for poor little Sadbh.

I took over at 6 and Sadbh slept soundly for another hour until I woke her up to give her some more Tylenol. She was not happy and started coughing intensely.

She had another difficult day and was quite exhausted throughout. She had no appetite and we had to work hard to get her to drink fluids to keep hydrated.

Katie received a call from Sadbh’s pediatrician and the results from her culture test were in.

Sadbh tested positive for HIB (Haemophilus influenzae type B) and her doctor wanted Katie to bring Sadbh in so they could give her a new prescription for antibiotics.

The rest of her evening was spent lying in my arms. She had absolutely no energy and her temperature kept spiking around 104. Even though her blood oxygen level was in the mid 90’s, her respiratory rate was in the 60’s. Her usual respiratory rate is in the low 30’s.

We checked online to learn more about HIB and I think Katie and I both lost another 10 years off our lives when we started to read about Meningitis and it’s potential outcome.

Despite giving Sadbh Tylenol at 5:30pm,her temperature still did not show any signs of abating. Her heart rate also increased to the mid 170 range so Katie contacted Sadbh’s pediatrician’s office to see if we should head to the hospital.

Thankfully her doctor called us right back and gave us the green light to give Sadbh some Ibuprofen to help lower her temperature and heart rate. It took a while but this seemed to do the trick.

Her doctor also reassured us that Sadbh had a different strain of HIB and she was not at risk for Meningitis since she had already received the vaccination for that. Phew! That was a huge relief for both of us. 

Larissa is working again so we know that Sadbh will be well looked after.

Her doctor asked us to come in first thing in the morning to give her an injection of the antibiotics so it will start to take affect immediately.

New photos.

Photos from January 16 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – January 15th 2013

She slept until 8:15am, but when she woke, it was clear that she was still feeling pretty crappy.  Su Jin was working today and Sadbh was happy to see her. 

Unfortunately, though, nothing was much fun since she didn’t feel well and Sadbh cried and clung to mommy for most of the morning.

She spiked a fever again around 9am and we gave her some more Tylenol, which kept her feeling comfortable for most of the morning.

When it came time for trach care, Sadbh had a great time playing in her bath.  She fell asleep quickly, but just before we got her all setup, she started a big coughing fit and ended up puking up everything she had eaten that morning.  After several suctions to make sure her airway was clear, it was time for bath #2.  She again had a ball the water and afterwards, she fell into a deep sleep. 

Trach care went well and she slept on until almost 3pm when her fever spiked again.  Her temp soared above 103 degrees and we again gave her more Tylenol to bring it back down.  It was 30 min before she was alert again and ready to get out of Mommy’s arms (at least for a few minutes).

She was very happy when Daddy arrived home and the evening was spent watching “Wheels on the Bus” and Skyping with Nana, Grandad, Conor and Josh in New Zealand.  Conor very sweetly told Sadbh that he had said a prayer hoping that she will get better quickly.

There is one song in “Wheels on the Bus” that Sadbh loves.  She grabbed Katie this evening when it was on and she showed Katie how she could sing along to it. 

When it came time for bed, Sadbh fell asleep very quickly.  Unfortunately, moments later, her fever spiked again and it was quickly up above 104 degrees.  Katie gave Sadbh some Ibuprofen and we are watching her very carefully to see that it comes back down.

Luckily, Larissa is working again tonight so we know Sadbh will be well taken care of.

New photos.

Photos from January 15 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 14th 2013

Sadbh had a horrible night and spent most of it coughing. We were called down not long after midnight to help out as she was having such a tough time.

While Katie and Julie suctioned, I elevated the head of her mattress so it was tilted.

I took over from Julie at 5:30 and kept an eye on Sadbh for the next couple of hours. She woke up around 7:30 and Katie took over.

Since Sadbh was so sick, Katie decided to work from home so she could help Caity if needed. This worked quite well as Sadbh’s coughing persisted throughout the day.

She found it hard to keep her food down due to all the coughing and later in the morning her temperature started to rise.

By mid evening her temperature was 103.7 and she had absolutely no energy.

She had no appetite and since she had not eaten in a couple of hours we were starting to get very worried.

Katie called her pediatrician’s office and when they called back they advised that, due to her trach, we should take her into urgent care at Children’s.

Thankfully Children’s is only 10 minutes away so we bundled into the car and headed off.

After checking in with urgent care we found out that they are not equipped to deal with trachs, so they advised that we check into the emergency care. We were very hesitant due to the high risk of exposing Sadbh to who knows what, however, the nurse we worked with in urgent care was extremely helpful and secured us a room in ER so we could bypass the standard ER check in process.

The ER team was great and really took good care of Sadbh. She was well passed her bedtime by now and she was getting very upset, however they gave her some crayons and pictures to fill in.

After running all her regular tests, they suctioned her trach to get a culture for analysis. She ended up giving a huge cough and launched a loogie that landed square on one of the nurse’s forehead. Thankfully the nurse laughed about it and explained that it was one of the things she was warned about in nursing school.

After that they took an X-ray of her chest and lungs to see if there was a chance of pneumonia. After reviewing the X-ray they could see a spot that indicated that she might actually have pneumonia so they prescribed antibiotics, amoxicillin. Since none of the local pharmacies were open when we finally left the hospital the doctor gave Sadbh a dose to get her started.

When the nurse asked her to open wide, Sadbh obliged and opened her mouth as wide as she could so the nurse could give her the antibiotics.

We were finally discharged shortly after midnight and Sadbh was fast asleep as soon as she was bucked into her car seat.

Larissa was already at the house and had everything set up and ready to go. She even changed out Sadbh’s bed sheets.

We gave Sadbh a thorough sponge bath, much to Sadbh’s annoyance, but she was off to sleep moments after she was dressed in a clean pajamas.

Sadbh was a superstar all day and despite moments of fussiness, she did great.

We are so lucky to have such great night nurses. Julie really took great care of Sadbh last night, and tonight Larissa jumped into action as soon as she heard that we had to go to the hospital.

Now I’ve got to find a pharmacy that’s open 24 hours so we can fill her prescription for her morning dose.

New photos.

Photos from January 14 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 13th 2013

Sadbh had a similar night to the one before and needed to be suctioned a few times. When She only woke up once while Julie suctioned, and as soon as Julie was done, Sadbh gave her a big smile and went back to sleep.

Her heart rate did increase into the 125 to 140 range from 4am onwards and remained there for the rest of the morning until she woke up at 7. Her typical sleeping range is from 90 to 115.

She started to call for Katie but she immediately relaxed as soon as she realized that I was in the room with her.

Since we were all up so early we decided to go get the shopping done for the week. She was quite happy going through the grocery store pointing and naming all the foods that she knew.

Since we have been having such a difficult time getting consistent daytime nursing coverage for Sadbh, we have decided to take control of the situation by hiring a full time nanny with the nurses as secondary back up.

After we find a candidate that has all the qualifications we will arrange for trach training with the RT team at Children’s and also with my father for the last few months of his stay here.

We have been reviewing applicants and today we met the first candidate. Sadbh liked her immediately and she seemed to have the qualifications necessary to look after our princess.

We have a couple more candidates to meet with this week and possibly more later in the week or next week.

Sadbh was getting very tired by the time the interview was wrapping up so we finished up and got Sadbh into the bath as soon as we could.

She got to Skype with my cousin and his daughter, Abby, in England.

Despite being very tired she was full of smiles and even blew them a bunch of kisses.

Trach care went well and Sadbh slept for two hours.

She was not quite ready to get up after waking up and sat in her bed reading for 45 minutes or so.

Later on we headed downtown for a spot of shopping and Sadbh loved checking out the mannequins.

She was running around like crazy and it was hard to keep up. She really had a lot of fun.

She was exhausted by 7pm and was fast asleep by 7:30. Her heart rate is up and down and we can tell by the look in her eyes that she is fighting something.

I hope it’s nothing too serious and that she will feel better tomorrow.

New photos.

Photos from January 13 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 12th 2013

Sadbh had a good night sleep and even though Julie had to suction four times, she did not wake until after 6:30.

It was an early start to the day and Sadbh had a lot of fun.

It was a very cold day so we decided to stay indoors. This did not bother Sadbh as we each took turns having fun with her.

When it came time for trach care, Sadbh had fallen into a deep sleep allowing us to manage it without any problems. She slept on for an hour and a half and woke up in a great mood.

After her lunch she was playing in the nook when all of a sudden I heard her calling me by my name. I went in to find her lying on her belly pretending to be hurt. I picked her up and started to kiss her owwa and noticed her turn her head away as she was trying to hide her laughter. She did this a couple more times and she had both Katie and me cracking up with laughter.

Her friend Dylan was celebrating his second birthday today so we headed over to join in on the festivities. His party had a construction theme and Sadbh was delighted when she got her very own hard hat.

All her friends were there and they had so much fun. Sarah and Gerry did a fantastic job setting up the house with all sorts of construction work areas and toys and it was great to see all the kids getting along so well.

When the birthday cake came out and everyone started to sing “happy birthday” to Dylan, Sadbh seemed to think that we were singing to her. The expression on her face was priceless.

The energy in the house intensified after each of the kids got their share of cake and soon there were children running and racing everywhere. It was a fun evening and Sadbh really enjoyed herself.

Just when we thought things couldn’t get any more exciting, Dylan’s pet cat came up to join in on the fun and Sadbh was surprised. She could not believe that she was so close to this ginger cat and she even got a chance to touch it.

When it came time to leave Sadbh was surrounded by Cormac and Dylan. She received big smooches from each of them and was excited with all the attention that she received. I prepared her for a serious talk on the journey home, however she was wiped out and was soon fast asleep.

We will have to have the chat tomorrow after she wakes up.

Thankfully she was in a good mood when we had to wake her up to change into her pajamas and to brush her teeth. As soon as she was all bundled up she was back to sleep and comfortable in her cot.

She had a wonderful day and will hopefully have a great night sleep.

Unfortunately, I shrunk Katie's favorite cashmere sweater today, however on the positive side, Sadbh got a brand new cashmere sweater today.

New photos.

Photos from January 12 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 11th 2013

Sadbh seemed to have a nightmare at one point during the night as Julie found her crying in her sleep.

She woke up just after 5:30 and after an hour of cuddles Katie managed to get her back to sleep for another hour.

She had a fun morning and was surprised when Ali-Baba stopped by to hang out.

When it came time for a nap, Ali-Baba was free to help out so she and Caity managed trach care.

Sadbh slept for three hours and had a huge appetite when she woke up. She sat in her high chair eating for almost an hour and was just wrapping up when I arrived home from work.

She was in such a great mood and we had so much fun playing until Katie arrived home. Sadbh was excited to see her mommy and even more excited when we all bundled into the car and headed over to visit her friends Clodagh and Cormac.

Sadbh was over the moon when she arrived at her friends’ house and immediately they started to have so much fun.

Clodagh has a lovely toy kitchen set and Sadbh was busy preparing food and making a big mess. Later they all got to watch some telly and all three kids were very cozy sitting next to each other.

They all got along so well and when it came time to leave, Sadbh wanted to stay. She put up such a fuss and tried her best to remove Katie’s scarf and jacket.

Bedtime was much later than usual and after a few coughing fits and suctioning, Sadbh dozed off into a deep sleep.

Hopefully she will have some sweet dreams tonight.

New photos.

Photos from January 11 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 10th 2013

Sadbh slept great and woke up at 6:15 in a very good mood. Katie gave her the iPad so she could watch one of her “wheels on the bus” movies and this made her morning.

She had a great day and she ended up taking a nice long nap while out strolling through the neighborhood with Caity.

I arrived home to find a very happy and playful little girl. All went well until we headed upstairs to get my camera. Sadbh was playing on the bed when she slipped off and hit her head on the way down. It was quite the bang and it startled poor little Sadbh.

Thankfully she was not hurt but she did end up with a lump on the back of her head.

Neil came by for dinner tonight and Sadbh was shy at first. It was very hard to make dinner since Sadbh was so clingy, however after a while she warmed up and relaxed a little.

She was very tired when it came time for bed so we gave her a nice bath and got her ready for trach care.

It took about 40 minutes or so for her to finally fall asleep, however she kept telling Katie how much she liked “Uncle Neil” before finally dozing off.

Trach care went well and Sadbh slept right through.

Julie is back on shift tonight so Sadbh should get another good night sleep.

New photos.

Photos from January 10 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 9th 2013

She had another great night and Larissa did a great job suctioning when needed to keep her airway clear.

Sadbh woke up just before 7 and even though she had a slight coughing fit, she did not get sick and was in a great mood.

She had a great morning and was full of energy when Caity started her shift at 8:30.

Naptime came late today and Sadbh slept for two and a half hours. She was well rested when she woke up and she had a huge appetite.

We had a very fun evening after I arrived home from work and things only got better when Katie arrived home.

For some reason or other Sadbh had a strong craving for oranges.  She told me this repeatedly by pointing at a picture of an orange in her book and saying “Orange please”. Katie picked some up on the way home and Sadbh was delighted.

We had to wait until Sadbh went to sleep to manage trach care and by the time she finally fell asleep we were all exhausted.

We were able to manage trach care easily enough and thankfully Sadbh slept right through.

New photos.

Photos from January 9 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – January 8th 2013

Sadbh had a great night and only needed to be suctioned two or three times.

By 6:10 she was wide-awake and very happy to see Katie.

Her trach filled up with thick secretions so Katie had to suction until it was cleared.

Caity worked today and Sadbh had a fun morning. It was a very wet day so Sadbh was house bound all morning.

Unfortunately, we did not have a second set of hands today so we postponed trach care until tonight when Sadbh was going to bed.

She only had a short nap today but was in a great mood after she woke up.

As soon as she was up it was time for lunch. Sadbh had a huge appetite but later on she ended puking it all up after a big coughing fit.

I got home in time to sign Caity out and Sadbh was still in a great mood. We spent the next couple of hours having fun playing with kitchen set and making a fort in the living room.

Just before Katie arrived home we got to Skype with the gang in New Zealand and Sadbh was thrilled to see Nana and Granddad. Her cousin Conor showed Sadbh the train set he’s sending to her and she was excited to see it chugging along the tracks.

Sadbh had another coughing fit and ended up puking all over her room, all over Katie and me. She made such a huge mess, however she felt much better after we were able to suction her trach.

Bedtime was much later than usual and unfortunately just as Sadbh was dozing off she had another bout of coughing. With that came the puke, suction and clean up. She was a trooper throughout it all and still managed to give us both hugs and kisses.

After she finally fell asleep we were able to manage trach care. By now Sadbh was exhausted so we were able to take care of it quite easily and Sadbh slept soundly.

As Katie and I were getting ready to go to bed Larissa came out to let us know that she just checked Sadbh's lungs and that they sounded clear and good. 
We are very fortunate to have such good night nurses.

New photos.

Photos from January 8 2012.

All the best,

Wayne, Katie and Sadbh.

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.

New photos.

Photos from January 7 2012.

All the best,

Wayne, Katie and Sadbh.