Sadbh’s update – December 7th 2012

Sadbh had another great night and slept until 6:30. At one point she woke up and looked at Julie. Julie said “Hi Sadbh” at which point Sadbh took her binky out of her mouth, said “Hi” and promptly put her binky back in and lay back down to sleep.

So far it seems that having night nurse coverage throughout the entire week, rather than a few nights, is really benefitting Sadbh and her sleep schedule.

She was eager for breakfast and had herself a big breakfast.

Sadbh wore her Passy Muir Valve all morning and when Katie left for work she got to venture out into the garden.

She had so much fun playing and reading and after thirty minutes or so it was time to head back into the house.

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

Sadbh got a chance to try out her trach cap and tolerated it for 13 minutes.

Trach care was late today and Sadbh was exhausted. Everything went well and Sadbh slept for a couple of hours.

She woke up in a very good mood and wanted another bath.

One of the distractions that we use when she wears her cap is water. Sadbh really enjoys pouring water from one cup to another and generally splashing around. 

Taking advantage of this opportunity, we capped her trach for a second time and Sadbh had a great time.

She tolerated the cap for 16 minutes this time and she really enjoyed herself.

The funny thing is that there were four adults and a toddler in the bathroom.

The problem with her new found love of playing with water is that any time she hears the water going she comes running wanting to play with it. Washing ones hands has now become a Sadbh control issue.

When I arrived home, Sadbh was eating her dinner and watching Sesame Street. After she had enough telly it was time to turn it off. Sadbh wasn't too happy about this and started to call "Gerry! Gerry!", her Granddad's name. It was hilarious. 

Later on she was in her element playing with Nana so I took a nap on the couch. All of a sudden Sadbh came running up to me, gave me a big kiss and then instructed Nana to do the same. 

Her evening was spent coloring with her crayons, having fun with her toys and trying on her new hat and gloves.

She was in a fantastic mood but you could tell that she was getting very tired.

When it came time for bed, Sadbh was very happy and playful. Shortly after Katie placed her in her bed she sat up and said, “all done” and wanted to get back up.

After a few more attempts she finally fell asleep.
At one point as Katie tried to get Sadbh to sleep, Sadbh suddenly started laughing and calling out "Ali-Baba". Katie responded by making the baby sign for Ali-Baba and "silly".  She asked Sadbh if Ali-Baba was silly and Sadbh responded "yes" with a smile and a giggle.  Then she went off to sleep.

New photos.

Photos from December 7 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 6th 2012

Sadbh slept great and woke up in a very good mood at 6:30.

After a hefty breakfast she was ready to play and wore her Passy Muir Valve the whole time.

She was able to get out into the garden for a few minutes to play before it started to rain.

Around 11am she wore her trach cap for a total of 20 minutes. She did great and was in a very happy mood.

Shortly after noon she was starting to get tired so it was time for a bath, a cuddle and then off to sleep so Granddad and Caity could manage trach care.

It went well however Sadbh only slept for an hour.

She had a great afternoon and was in a fantastic mood all evening.

Sadbh was wearing her trach cap when I arrived home and she was very happy playing with her bubbles and water in the bath. She lasted for 24 minutes and did not struggle whatsoever.

Katie and I met with a potential new day nurse this evening and Sadbh took an immediate shine to her. We chatted for well over an hour and our initial impression was good.

The hope now is to see if she can job shadow one of next week’s day nurses and after that we can see how she does working solo.

Thankfully she has plenty of experience with trachs and she also seems to have a good way with toddlers.

Sadbh was delirious when it came time for bed and had Katie and I dancing and singing “Ring a ring a rosey” for twenty minutes or so. She could not stand straight and was laughing her little head off.

Thankfully we did not have any problems getting her to sleep and hope she has a good nights rest to make up for her short nap today.

New photos.

Photos from December 6 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 5th 2012

Sadbh slept like a rock last night and did not budge. Her heart rate and blood oxygen level were good all night and she did not wake up until 6:40.

She was a little off when she woke up and did not have much of an appetite.

Her mood improved after she got a chance to get out into the garden and she was very content playing in the sunshine.

Around 10:30 it was time to head out for a walk with her nurses Caity and a new nurse, Heather, who was job shadowing today.

A couple of hours later Sadbh was ready for her nap and trach care. Just before she had her bath they capped her trach and she did great for almost 7 minutes before she had enough.

During trach care, Heather got to watch as Granddad and Caity cleaned.

Thankfully everything went well Sadbh slept soundly for a couple of hours.

Sadbh had a fun evening and was in a very playful mood. We tried capping her trach and this time she lasted 22 minutes before she got fussy.

Katie was late arriving home and Sadbh really missed her. She arrived just before bedtime and Sadbh was ecstatic when she heard the car coming down the driveway.

Both Sadbh and Katie got a chance to play for a short while and then got a big snuggle in when it came time for Sadbh to go to bed. It was a nice ending to Sadbh’s day and it did not take long for her to fall asleep.

We were going to cap her trach tonight after she fell asleep however we decided not to since she has a couple of teeth coming in and her trach was very goopy with secretions as a result of her drooling.

New photos.

Photos from December 5 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 4th 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New photos.

Photos from December 4 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 3rd 2012

Sadbh was a little restless last night and ended up kicking her humidifier hose off a few times.

Thankfully Julie was very responsive and kept Sadbh comfortable and connected throughout the night.

I had the day off of work so I took over from Julie when her shift ended at 6am. Sadbh was in a deep sleep so I was hoping that she would sleep on for another hour or so.

No such luck and Sadbh woke up in a very cranky mood.

After disconnecting her equipment and putting a humidifier nose on her trach, we headed upstairs to Katie in the hope that she might settle down and go back to sleep.

Sadbh had no desire to go back to sleep so we eventually headed downstairs for breakfast.

Sadbh was delighted and she got to watch her Baby Signing Time DVD while she ate.

Caity was working today so Sadbh had plenty of people to keep her occupied throughout the day.

Even though she woke up quite early, she wasn’t ready for her nap for quite some time.

Trach care went well and Sadbh slept for almost two hours.

As soon as she woke up it was time to head off out to get photos for her Irish and American passports.

I was nervous that she would not sit still while the photos were being taken, however she posed perfectly and everything worked out great. She is such a superstar!

Afterwards we headed across town to Katie’s office so Sadbh could meet some of Katie’s colleagues.

She had a great time and was fascinated with all the people she met.

Sadbh has her pre-op appointment with Dr. Inglis tomorrow so we hope she gets a good nights rest tonight.

Larissa is back tonight so we are sure Sadbh and the rest of us will also get a good night sleep.

New photos.

Photos from December 3 2011.

All the best,

Wayne, Katie and Sadbh.a

Sadbh’s update – December 2nd 2012

Sadbh had another great night sleep and it seems that it was a fun night according to Julie who informed us that Sadbh had a number of giggle fits throughout the night.

She slept in until 7:40 and was ready for her breakfast. Katie dressed her up in a very cute skirt and white tights.

It was a windy but very sunny morning so we started to get ready to head out for a long walk. Unfortunately, the sky filled up with big dark clouds and it started to downpour just as we were ready to leave. We were fortunate with the timing since we had not left yet, so it was back to playing indoors.

Sadbh had a lot of fun and after a few hours of play it was time for her bath and trach care.

She woke up about half way through trach care and both Katie and I were extremely surprised that she just lay there smiling as I held her trach and Katie cleaned. She even got playful and allowed us to take care of business without any fuss whatsoever. It was very impressive and it actually brought tears to my eyes to see how good she was.

Since she was awake we got her dressed, fed and then we all headed out to Bellevue Mall for a drive.

Sadbh was fascinated with the huge Christmas trees throughout the mall and also Rudolph and the other reindeers that were hanging from the ceiling.

Sadbh was running on fumes by the time we arrived home however she was still very playful.

By 7 she was delirious so we got her ready for bed and it did not take more than a couple of minutes before she was in a deep sleep.

New photos.

Photos from December 2 2011.

All the best,

Wayne, Katie and Sadbh.

Sadbh’s update – December 1st 2012

Sadbh slept great thanks to Julie and she did not wake until after 7:30.

Katie took over from Julie at 6 and when Sadbh woke up she was thrilled to see Katie in the chair next to her bed.

After disconnecting all of Sadbh’s equipment, it was time to head up stairs and into our bed for a snuggle.

Sadbh had a great morning and got to Skype with her Uncle Ger and Aunt Ann back in Cork. She was thrilled to see them and when it came to go she blew them both kisses and told them she loved them.

We set up the living room as a mini photo studio and dressed Sadbh up in a couple of lovely dresses for her Christmas photo. She looked so beautiful and cute, she was the best model ever.

After a while she started to get tired so it was time for her bath and trach care.

Everything went well but we found a big sore on the back of Sadbh’s neck. It was obviously very sore as she would flinch every time we touched it during cleaning.

Katie dressed it up really well and you could tell Sadbh was a lot more comfortable as her heart rate dropped down to her deep sleep level.

She slept for an hour and woke up sad. I worked hard to cheer her up and soon she was laughing her little head off.

Even though she was still very tired, she had no interest in going back to sleep so it was time to get up and have something to eat.

As soon as Sadbh was finished with her lunch we headed over to University Village to get out of the house and for Sadbh to stretch her legs.

Sadbh loved all the Christmas lights and music and atmosphere. She could not stop smiling and waving at all the other little kids. She really enjoyed herself.

Sadbh had a treat of home made guacamole with her dinner this evening. She could not stop dipping everything on her plate into it.

Bedtime came quick enough and it didn’t take long for Sadbh to doze off.

She should have another good night since Julie is working tonight.

New photos.

Photos from December 1 2011.

All the best,

Wayne, Katie and Sadbh.