Sadbh’s update – May 6th 2013

Sadbh slept great and only needed to be suctioned a few times during the night.

Katie overslept by 20 minutes and thankfully Helen was very cool about it.

When Sadbh finally woke up she was having difficulty in breathing and Katie had to suction quickly to remove a few mucus plugs.

Sadbh had a massive appetite for breakfast and ate so much food. Afterwards, Sadbh and Nini got down to some serious playtime.

Amy had the day off today and Nini was meeting with some friends so Sadbh and Larissa had the house to themselves.

It was another beautiful day so Sadbh and Larissa headed out for a nice walk in the warm sun.

Sadbh was being lazy today and rode along in the stroller rather than walking. She made up for the lack of activity by keeping up a constant chatter about everything and everyone that they saw.

When Sadbh arrived home it was time for a bath. Larissa gave Sadbh a bath in the large tub using her regular small blue tub. This way she was able to put in more water than usual and Sadbh got to play with all her bath toys.

She had a wonderful time and did not want to leave.

Sadbh agreed to leave only after the mummy, daddy and baby ducks went to sleep.

Sadbh had a nice long nap and woke up in a great mood two hours later. She had a ferocious appetite and ate everything that was put in front of her.

After lunch Sadbh and Larissa planted sunflowers in the back porch and thankfully Sadbh did not get too dirty.

She had a great evening with Larissa and was in a wonderful mood when I arrived home from work.

Katie and Nini had an appointment so Sadbh and I got to spend the evening together.

Due to a big rash on her bottom, Larissa gave Sadbh a break from wearing her nappy for a while and she was so happy with the freedom.

We talked about letting us know when she wanted to use the bathroom in the hope that she might be miraculously potty trained all of a sudden.

Just when I was starting to believe that she was instantly potty trained she reminded me of how foolish I was by making a nice big mess in her room and walking it all the way into the bathroom. Thankfully it was a number one and not a number two.

We had a wonderful evening chasing each other around the house and playing hide and seek.

She was eating dinner when Katie and Nini arrived home and greeted them with a huge smile when they walked in the door.

Since Larissa was working solo today she was unable to do trach care.

Katie and I took care of it just before bedtime and Sadbh was very patient the whole way through.

When we finished she simply wanted to climb into her cot and go to sleep.

It was a fun day and, by the end of it, she was pooped out.

New photos.

Photos from May 6 2011.

Photos from May 6 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 5th 2013

Sadbh slept well and woke up before Danielle’s shift ended at 6. Sadbh is usually sleeping through Danielle’s shift so she was surprised to see someone she did not know sitting there looking after her.

She was relieved a few moments later when Katie popped her head in the door.

After breakfast I installed black out curtain in Sadbh’s bedroom so she could nap easier during the day.

While I was setting things up Sadbh got to Skype with my folks back in Cork. Granddad even wore Sadbh’s ladybird hat that Sadbh stashed in his suitcase before he left. My two aunts, Doreen and Mary, were visiting and Sadbh was thrilled to see everyone. She was in a fantastic mood and kept blowing kisses and telling my parents that she loved them.           

While Katie and Sadbh were out talking with our next-door neighbor, Anna, the fire department pulled up in a big fire truck to check the fire hydrant on the street and needless to say Sadbh was very impressed.            

Things got very exciting when they were called away to an emergency and with their sirens blaring they took off down the street.                        

It was another beautiful day in Seattle and since Nini only has a few more days with us we decided to do trach care early and head over to Alki Beach to check out the scene.

Sadbh watched Kipper as Nini held the iPad and as Katie and I managed trach care. She did great and soon we were all loaded into the car and heading off to West Seattle.

Thankfully Sadbh took a nap along the way so we decided to take advantage of her sleeping and headed off to a nursery to get vegetables for the garden. She woke up just as we arrived at Alki and soon we had her coved in sun block and ready to go.

Alki Beach was packed solid and Sadbh could not stop smiling. She got to walk barefoot in the sand and when the waves splashed up on her legs she was surprised how cold the water was.

There were loads of motorcycles, flashy cars, dogs and all sorts of fun things for Sadbh to look at.

Sadbh had a fantastic evening and helped us in the garden.

We gave her a nice bath just before bedtime. Unfortunately we got her trach tie wet while washing her hair so after she was dried off we had to manage trach care for the second time. She was very corporative and did not fuss.

Thankfully we got it done very quickly and soon Sadbh was falling asleep in Katie’s arms.

New photos.

Photos from May 5 2011.

Photos from May 5 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 4th 2013

Sadbh had a very good night and despite being suctioned a few times, she slept right through until 7:20.

I took over from Danielle at 6 and got ready to deal with any mucus plugs that might come up.

I received the biggest smile when she woke up and instantly got a huge hug and a kiss.

She did require quite a bit of suctioning and had a few smaller plugs. But all in all everything went well and she did not experience any difficulties in breathing.

Sadbh was starving so Katie made pancakes and fruit for breakfast.

At one point, Sadbh was on her changing table I popped my head into the room while wearing a strange scarf. Sadbh’s reaction was priceless when she looked at me and said “oh my god”. It was hilarious and we were all in hysterics laughing.

It was a beautiful day so Katie and I wanted to get out and enjoy the sunshine. We decided to manage trach care as soon as possible and this meant managing it while Sadbh was awake. After a quick chat with her and a bribe of cookies we got under way and were successful in getting it done without any problems.

This was a great result and removed a huge amount of stress for the rest of the day.

Our first stop was University village. As Katie and Sadbh waited for me outside one of the shops a guy pulled up on his motorcycle. Sadbh was waving like crazy and when the guy got off he walked over, shook her hand, said hello little girl and introduced himself as Dimitri.

Sadbh was smitten and Katie grew very worried about Sadbh’s interest in motorcycles and the guys who ride them. Thankfully for Katie she has a good 14 or so years to work on changing Sadbh’s mind.

Traffic was horrible today so we were very lucky to get trach care out of the way earlier. Sadbh napped for an hour and a half in the car as we crawled through town.

Su-Jin worked this evening for a few hours so Katie and I could go out on a date night. Sadbh was out playing in the back garden with Nini when Su-Jin arrived and she over the moon when she saw her.

She had a wonderful time playing with Nini and Su-Jin for the evening and after a big dinner she started to show signs of getting tired.

By 7:40 she was out cold and thankfully she did not have any more coughing fits.

It was great to see Su-Jin as we had not seen her in ages. She was blown away by Sadbh’s development and Sadbh had a great time teaching Su-Jin a bunch of her favorite songs. Every time Su-Jin would get a chorus wrong Sadbh would be quick to correct her. Very entertaining to say the least.

New photos.

Photos from May 4 2011 part 1. Part 2.

Photos from May 4 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 3rd 2013

Sadbh’s update – May 3rd 2013

Danielle kept a close eye on Sadbh last night and only suctioned a few times.

Sadbh slept great and woke up just before 7.

She had a few minor plugs in her trach but it was not as bad as yesterday.

Katie was able to suction her trach clear and afterwards gave her an Albuterol nebulizer treatment.  Nini was there to help and Sadbh and Nini watched Kipper for a little while during the treatment.

Soon Amy arrived and it was breakfast time. Then Larissa joined and Sadbh continued to eat a breakfast of champions, including toast with jam, yogurt, 2 bowls of O’s, and a whole banana. 

After she was finished, Amy, Larissa and Sadbh got ready to go and they all headed out into the sunny day for a walk. They walked up to the field at Seattle University where they played a game of “chase me”, which Sadbh thought was fantastic.

There were dogs playing fetch and one of the dogs even came up to Sadbh to check her out. The dog’s owner was surprised and mentioned to Amy and Larissa that her dog was normally very shy and never approached people.  

They then headed into the church there and Sadbh thought of Nana and Granddad, as this was one of the places they loved to take her to.  On the way home, Sadbh played with sidewalk chalk on the yard outside the church and ended up with a large audience of students checking her out. 

She then ate a cereal bar, fruit leather and had milk and strawberries on the way home.

After a great walk and lots of snacks, the gang headed home.  Sadbh was very excited to take a bath and she even helped Amy fill the tub with water.   She soon fell fast asleep, but shortly afterwards had a large coughing fit so Larissa and Amy decided to forego trach care.

Sadbh had a very long sleep and woke up after I arrived home at about 4:30.  She ate a good meal again and when Katie got home awhile later, we decided to talk Sadbh through trach care and then all go for a walk.  Sadbh was a star, as always, and she stayed very still while we managed trach care. I promised her ice cream if for staying still and this obviously worked.

We headed off to Madrona and Sadbh enjoyed the walk. We stopped off to say hi to the chickens along the way however Sadbh was a little be afraid of them for some reason.

We decided to stop off for dinner along the way and Sadbh was keen to climb all over the place. We had to give her Katie’s phone so she could watch Kipper. This worked a treat and kept Sadbh calm until her ice cream arrived. She was interested for the first few spoon full’s and then lost interest.

On the way home there was a really good jazz band playing in another restaurant so Sadbh popped her head in the door to check them out. She was in her element and the band lapped her up. When their song finished Sadbh gave them a huge round of applause and they all waved to her as she headed off with Katie.

It was quite the experience for her.

Bedtime was a very painful experience, as Sadbh had no interest in going to sleep. She was tossing and turning and was very playful.  She finally fell asleep at 11pm. The more excited she got the more often we had to suction. Thankfully she eventually tired herself out and fell into a deep sleep.

New photos.

Photos from May 3 2011.

Photos from May 3 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 2nd 2013

Sadbh slept well but needed to be suctioned a few times throughout the night.

Katie slept right next to her and was very quick to react any time Sadbh needed to be suctioned.  At one stage, Katie woke up and Sadbh’s foot was coming through the crib and kicking her in the face.  Sadbh was still fast asleep.

When Sadbh finally woke up just before 7 she was delighted to see Katie right there next to her cot.

Not long after waking up Sadbh’s airway became obstructed due to a mucus plug. Katie reacted immediately and worked to clear the obstruction. It took a while and at one stage Katie was thinking through steps to perform an emergency trach change. Thankfully she was able to clear the airway but the coughing and gagging caused Sadbh to vomit.

As soon as everyone’s nerves had settled down and Sadbh was cleaned up it was time for breakfast. Sadbh had a huge appetite and impressed Nini with the amount of food that she devoured.

Soon after breakfast Ali-Baba arrived and Sadbh insisted on a tea party for everyone in the kitchen in the basement.

Then it was time to get outside and into the garden for some fresh air and some fun in the sun.

She used her new wheelbarrow and shovel to dig in the dirt and she had a lot of fun.

It wasn’t long before Sadbh was growing tired so Ali-Baba gave her a bath. She was very upset when Ali-Baba left but eventually she soothed herself to sleep allowing Larissa and Amy to manage trach care.

She slept for an hour and shortly after waking up she experienced another airway plug.

Larissa reacted quickly and started to suction her trach. The blockage did not seem to give way and Larissa noticed that Sadbh’s skin tone was starting to change to blue and her blood oxygen dipped down into 78% for an instant but hovered in the mid 80’s for a minute. Her blood oxygen level should be as close to 100% as possible and never be below 93%.

She grabbed the oxygen bag and gave Sadbh oxygen to get her levels back up and this helped out immensely.

Sadbh started a huge coughing fit and threw up quite a bit. She allowed Larissa to keep working on clearing her airway and eventually she was successful.

It was an extremely stressful moment for everyone and thanks to the quick reaction of Larissa and Amy, Sadbh pulled through.  Larissa said that Sadbh was a champ.

She was in a great mood for the rest of the day and when it came time for bed she was exhausted.

We adjusted her bed so her head is elevated to help keep the fluids in her lungs from pooling in her airway.

New photos.

Photos from May 2 2011.

Photos from May 2 2012.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – May 1st 2013

Sadbh slept great last night and Helen suctioned her trach a few times as needed to help keep it clear.

Katie took over at 5:30 as Helen had to leave early and thankfully Sadbh slept on until 7:30.

It was time for a nice long snuggle with mommy and as soon as she was awake it was time to head downstairs to see her visitor.

Sadbh was so happy when Nini opened her bedroom door. She knew that Nini was coming but was ecstatic when see saw her standing right there. After a huge hug and a lot of kisses, Sadbh quickly began to show Nini all her toys.  Then they all headed upstairs for breakfast.

Sadbh was chatting up a storm and had a lot to say for herself.

Larissa arrived a short time later and got to join in on the fun dancing around the living room with Sadbh and Nini. Unfortunately, Amy could not work today.

It was a beautiful day so they all headed out for a nice long walk in the sunshine. Sadbh really enjoyed getting out of the house after being cooped up for a few days. She was especially excited when they came across a fire engine parked on the street.

One of the fire fighters started to talk to Sadbh and was very impressed when she told him that she was two while also making the sign with her fingers. He invited her to come visit their fire station.

Eventually she started to get tired so it was off home with the three ladies so Sadbh could have a bath, a nap and trach care.

Everything worked out well while Larissa held and Nini cleaned. 

Sadbh slept for two hours and when she woke up she hung out in her cot reading books and playing with her stuffed dog.

She spent the evening in a fantastic mood and was delighted to play with Nini.

Helen has the night off tonight so Katie is going to spend the night with Sadbh to make sure she sleeps well and to keep her airway clear from mucus plugs and the likes.

It’s going to be a long night but hopefully everything will go well and that both ladies will get some good rest.

New photos.

Photos from May 1 2011.

Photos from May 1 2012.

All the best,

Wayne, Katie and Sadbh. 

Sadbh’s update – April 30th 2013

Sadbh had another really good night however Helen suctioned a number of times throughout the night as Sadbh’s lungs sounded very goopy.

Since we had Sadbh’s appointment in the afternoon, Larissa started her shift at 6am and took over from Helen.

When Katie arrived down a short time later Sadbh was already awake and happily playing with Larissa.

After a big breakfast Sadbh got to play with her new stickers and stamp set that she got from Conor the day before. She wore her trach cap for 50 minutes and despite all the secretions she tolerated it quite well. In fact she was able to cough up her secretions past her vocal cords and into her mouth.

By 10:30 Sadbh was having her bath and getting ready for her nap. Amy read some bedtime stories to her and within twenty minutes Sadbh was fast asleep.

After sleeping for two hours Sadbh woke up in a great mood. She was quite hungry and after a big feed it was time to play while Larissa and Amy got all her equipment ready for the trip to her appointment.

I arrived home to a very happy little girl and she looked so beautiful in the dress that her friend Clodagh gave her. She was excited to see me home earlier than usual and was even more delighted when Katie arrived home not long after.

Sadbh’s appointment with Dr. Inglis did not go exactly how we had hoped. Considering her progress over the past few months he felt that she was not quite where she should be to be decannulated.

He did say that if we decided to remove her trach that she would probably be able to breathe without it but would be more prone to experiencing respiratory issues.

His recommendation was to stay the course as is and to check back in July to see if she has made any further progress.

Our objective between now and then is to get Sadbh wearing her trach cap all day and night without her experiencing any discomfort.

He has noticed that she is improving slowly and that her progress has not yet reached a plateau and as a result he is optimistic that her vocal cords could begin to work eventually. When, we do not know.

During our meeting with Dr. Inglis Sadbh started to get very fussy and needed to have her trach suctioned. Both Katie and I tried to focus on what Dr. Inglis was saying while also trying to clear her airway and keep her calm. It was a very intense moment and by the time we were done we had to ask Dr. Inglis to go over all the details and options again.

Dr. Inglis has been extremely supportive from day one and has never pushed any options on us regardless of how strongly he feels one way or the other. We trust him 100% and know that he has Sadbh’s and our best interests at heart.

Considering that we could make the decision to go trach free sooner rather than later, we decided to stay the course since the negative outweighs the positive.

It was a long drive home with our hopes of a trach free summer squashed. I have to keep reminding myself that in the grand scheme of things that it could always be worse.

A couple of hours before bedtime we gave Sadbh some Albuterol through a nebulizer to help clear out her lungs.

She was so hyper for the rest of the evening and thankfully she had a lot of fun.

We managed trach care while she was awake as she was way too wound up to sleep. Thankfully she allowed us to get it done and soon afterwards she was fast asleep in Katie’s arms.

Nini arrives tonight from Munich and Sadbh will be so excited when she sees her when she wakes up in the morning.

New photos.

Photos from April 30 2011.

Photos from April 30 2012.

All the best,

Wayne, Katie and Sadbh.