Sadbh’s update – July 12th 2014

Sadbh only needed to be suctioned once during the night but her lungs were still quite goopy regardless.

I took over from Danielle at 6 and Sadbh slept on soundly until close to 7:30.

She was in a good mood and happy to see me, but when Mommy popped her head into the room Sadbh’s smile grew from ear to ear.

As soon as she was up and out of bed she helped Mommy with breakfast. The two ladies had a great time together.

We had a busy morning but Sadbh got a chance to talk with Granddad who had just arrived back in Cork from his trip in Europe. She even got to talk with her cousin Fionn.

We had trach change scheduled for earlier in the week but since she was sick for the first few days we postponed it until she was feeling a little better. She really dislikes having her trach changed but we were able to bribe her with a new plush pony of her choice. She wanted a pony named Rarity so we talked all day about what she had to do to get this reward.

She seemed to be onboard until it came time to change out her trach so things got a little stressful until we could convince her that everything would be ok.

Sophia was extremely helpful in trying to keep Sadbh distracted.

Sadbh kept her head back exposing her neck allowing Katie to remove her old trach. Unfortunately, as soon as the trach came out she moved her head back down blocking the stoma. Despite this we were able to get enough of an opening and I was successful in getting the new trach in through the stoma and into her airway.

Sadbh was initially upset but she soon realized that everything was fine and she then calmed down.

Ali-Baba and Kirk stopped by to hang out and since it was a scorcher of a day they all hung out and played in the garden.

In the evening we headed over to Clodagh and Cormac’s for movie night for the kids. Sadbh was delighted to spend the evening with her friends and even though she had a nice dinner she could not get enough cookies and brownies.

Bedtime was much easier tonight and Sadbh was fast asleep before Danielle arrived.

New photos.

Photos from July 12 2011.

Photos from July 12 2012.

Photos from July 12 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – July 11th 2014

Sadbh had a good night and slept right through until half past seven. She only needed to be suctioned a few times and was in a great mood when she woke up.

After breakfast Sadbh and I got busy with finger painting out on the back porch. She really got into it and came up with some really interesting paintings.

For lunch Sadbh, Kipper, Tiger and I had a picnic in the back yard. It was a very hot day so I made sure that Sadbh sat in the shade so as not to get any sunburn.

By two Sadbh was starting to get very cranky. I asked if she needed a nap and thankfully she said yes. She slept for almost three hours and woke up in the greatest mood.

Sadbh’s friends, Clodagh and Cormac came this evening and Suzie helped Mommy with trach care. It was a team effort as Sophia held the iPhone for entertainment purposes while Suzie held Sadbh’s trach and while Mommy cleaned. Clodagh was on stand by but was content watching the iPhone.

Everything went well and before long Sadbh was out in the back yard with her friends.

Dylan and his parents arrived shortly afterwards and soon all the kids were having a wonderful time together.

Once dinner was devoured Sadbh and her friends took turns getting pulled around the garden in the red wagon by Clodagh. Actually, Clodagh was strong enough to pull her three friends around while the two boys were hanging off the sides.

Bedtime was a lot later than usual and it took ages to get Sadbh to sleep. Despite arriving just before 10, Danielle waited until almost 10:40 before taking over looking after Sadbh.

New photos.

Photos from July 11 2011.

Photos from July 11 2012.

Photos from July 11 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – July 10th 2014

Sadbh slept much better and only needed to be suctioned a few times. Her oximeter probe needed to be changed out just before midnight as it kept triggering the alarm settings. Thankfully it was only a technical issue and not an issue with Sadbh.

She slept in later than usual but woke up in a good mood wanting to put on her new My Little Pony clothes. She had a lot of secretions in her lungs that needed to be cleared out so I gave her an albuterol nebulizer and with that I was able to suction her trach to clear her airway as best as I could.

Sophia was spending the day with Cormac and Clodagh today so I had Sadbh all to myself. We had a great morning and Sadbh got to chat to Nana in Cork and to Granddad in Austria. She was delighted to chat to them both.

Sadbh’s condition improved throughout the day and we spent a lot of the day outside playing in the garden. She was so happy to be outdoors playing with paper airplanes and balloons but by lunchtime she felt tired and wanted to take a nap. True to form, she did not sleep and was up and back in action within half an hour.

Sophia eventually arrived home so Sadbh quickly ditched me and had fun with Sophia instead.

Katie and I managed trach care just before putting Sadbh to bed and soon afterwards she was tucked into bed for a good night sleep.

New photos.

Photos from July 10 2011.

Photos from July 10 2012.

Photos from July 10 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – July 9th 2014

Sadbh slept well through the night and her heart rate, blood oxygen level, respiratory rate and temperature were all normal. This was a good sign especially since we did not give her any medication.

Helen did suction a few times to keep Sadbh’s trach clear and noticed that her secretions were down low in her lungs.

Our objective, when Sadbh woke up, was to make sure she could get up out of bed and to see how much pain she had in her neck. We were concerned yesterday evening about the risk of meningitis but were relieved when her fever broke earlier in the evening.

Caity stopped by for a recertification just as Sadbh was waking up.  Sadbh was in a much better mood but she did not want to get up and refused to turn her neck complaining that it was sore.

She insisted on a couple of band-aids and had Mommy place them on the achy parts of her neck.

After some persuasion we were able to get her up and into her armchair for a saline nebulizer, as her trach was full of secretions.

After that we decided to give her an albuterol nebulizer and this helped clear her lungs further.

Sadbh had breakfast in the dining room and watched a movie with Sophia. Her mood was improving all the time and as soon as she was done with the movie it was time for the fun and games to start.

Her appetite had also improved and she had a huge lunch.

She still required occasional suctioning but not as much as the last couple of days.

She was starting to get tired but then there was a knock at the door. It was the FedEx guy delivering a package for Sadbh. She was so excited when I opened it and showed her the contents. It was a box full of all sorts of wonderful clothes with all her favorite ponies from our friend Denny. It cheered her right up and she could not wait to try them on.

Unfortunately for Sadbh she had to wait until after naptime but she went to sleep for a couple of hours without any problems.

Sadbh was a little groggy when she woke up at first but when she saw me sitting there she turned around and said, “ Oh my God, what are we going to do today?” It was so funny and then she said, “ let’s get dressed up in my new pony clothes.”

The rest of her day was much better and I was able to cap her trach rather than using a nose. It was the first time that her trach had been capped since Sunday and she was able to manage her secretions without any problems.

Trach care was a little later than usual this evening but Sadbh did not mind. She still has a lot of secretions and we gave her a nebulizer right after trach care.

She was extremely helpful but she did not go to sleep until almost 10pm. 

New photos.

Photos from July 9 2011.

Photos from July 9 2012.

Photos from July 9 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – July 8th 2014

Sadbh slept well until around 5 and required numerous suctioning to clear her trach. Helen gave her Tylenol to help lower her temperature and to reduce her discomfort.

Katie headed down to help out close to 6 and Sadbh was obviously happy to see her. Sadbh was very floppy and did not want to be cuddled.

Katie and Helen gave Sadbh a saline nebulizer to help loosen up her airway.

She also complained of neck and head pain and when I came down I prepared a heat pack to make things more comfortable for her.

Sadbh dropped back to sleep and slept soundly until 10. We took turns suctioning her trach and when she woke up she was hungry for watermelon and cantaloupe.

She was in a great mood but complained about having a sore neck and a headache.

As a result she would not get out of bed or sit up all day.

She even got to talk to Granddad on the phone this morning all the way from Austria. She was so happy to talk to him.

For dinner she wanted chicken noodle soup and after all my effort working hard in the kitchen to make it from scratch she only wanted the noodles.

Not to worry, she ate it down along with some bread followed by more watermelon and cantaloupe.

Trach care was difficult tonight as it was hard to turn her neck from side to side. She was so brave and put up with us allowing Katie and me to get it done.

Even though she is still dealing with a sore neck, some headaches and a lot of secretions her temperature was normal this evening and when she dropped off to sleep her heart rate was normal.

I hope she has a good night’s sleep and is able to get out of bed when she wakes up in the morning.  If she has a fever tonight or if she wakes up in pain, we plan to take her into the hospital to get checked out.

New photos.

Photos from July 8 2011.

Photos from July 8 2012.

Photos from July 8 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – July 7th 2014

Sadbh slept soundly for the first few hours. Her oximeter started to alarm shortly after 1am with her blood oxygen level dipping down below 92 percent every twenty minutes or so. Initially we thought that the oximeter probe might be failing but soon Sadbh was having a very difficult time breathing as her trach and airway was filling up with secretions.

Katie and I were quick to react and with Katie suctioning while I kept Sadbh calm we were able to clear her airway getting her blood oxygen level back up to the high nineties. Despite being able to breathe easily, Sadbh was still in a state of panic and kept trying to pull at her trach as if it was capped.

Eventually she calmed down and fell back to sleep.

This went on for the rest of the night and we had to suction her trach every half and hour or so to clear her secretions.

Her temperature was slightly high as was her heart rate, however her respiratory rate was normal after each suction.

Since we were already scheduled to head back to Seattle today we got the ball rolling as early as we could. It still took four hours to pack up all the stuff into the car.

By now Sadbh was definitely fighting something but she was in a fairly good mood. She kept saying “I am a little bit sick” and “I don’t want to get any one sick” and shaking her head with sorrow.  We gave her a saline nebulizer and some Tylenol before hitting the road.

To make the journey as comfortable as possible we downloaded a movie for her to watch on her iPad and we were off.

Everything went fine for the half hour of the journey and as we entered the town of Hoquiam Sadbh coughed and then started to vomit up everything she had eaten this morning. It happened so quickly that by the time I pulled over she had puked all over her trach and trach ties.

Katie and I with the help of Sophia got Sadbh out of the car and prepared to clean her up. Her trach and neck were covered so Katie and I had no choice but to carry out an emergency trach care on the side of the road with poor Sadbh lying on a blanket on the ground.

Our friends Gerry, Sarah, Derek and Suzie pulled in as they drove by and were also a huge help. It was very stressful for everyone and we were so grateful to have such fantastic friends right there to help out.

Sadbh was also a superstar and kept calm the entire time allowing us to get the job done without any difficulty. At one point we thought that we might have to do a trach change but thankfully we were able to get her cleaned up and back into clean clothes.

As soon as we got back on the road Sadbh fell asleep and slept the rest of the journey back to Seattle.

Once home Sadbh had a nice long bath and after dinner we did trach care.

She got to finish off the movie that she did not get to see earlier.  Her fever started going up again and we needed to suction several times an hour to keep her clear. We gave her Ibuprofen to help get her temperature down and just before bed we gave her another saline nebulizer to moisten up her secretions so they don’t get sticky.

Helen is working tonight so we know Sadbh will be in great hands.

New photos.

Photos from July 7 2011.

Photos from July 7 2012.

Photos from July 7 2013.

All the best,

Wayne, Katie and Sadbh

Sadbh’s update – July 6th 2014

Sadbh slept great but woke up a little earlier than Katie and me. We were hoping for a little sleep in but Sadbh was wide-awake and wanted to get up. In order to get a little sleep in we plugged Sadbh in to watch Kipper and Katie and I got a chance to sleep in a little longer.

After breakfast we joined the rest of the gang and headed down to the beach. We covered Sadbh’s trach up with a bandana to keep it protected from the sand. As soon as we arrived she wanted to wear her bikini and since it was kind of cold the only way I could appease her was by putting her bikini on over her clothes. It worked and soon Sadbh was off running into the surf. This was unexpected and before I knew where I was I was up to my ankles in water, despite wearing my runners.

Sadbh had so much fun running in and out of the surf and as soon as she rejoined her friends she was knee deep in sand and water.

It was so much fun watching the kids enjoying themselves on the beach but it was definitely stressful making sure that Sadbh’s trach and airway was kept clean and free from sand.

After a couple of hours it was time to head home. We gave Sadbh a bath to wash off all the sand that she smuggled off of the beach and when we managed trach care we found a lot of sand around her trach, but we were able to clean it up.

The rest of the evening was spent playing with her friends and making s’mores by the campfire.

Bedtime was much later than usual and Sadbh was out cold before we were able to get her home.

New photos.

Photos from July 6 2011.

Photos from July 6 2012.

Photos from July 6 2013.

All the best,

Wayne, Katie and Sadbh