Wednesday, August 20, 2014

Sadbh’s update – August 20th 2014


Sadbh slept like a log and woke up very happy just before half seven.
She did not have much of an appetite but was more obsessed with spending her morning playing with Sarah and Edgar. She had a lot of fun and by the time they finished up she had worked up an appetite.

Sarah and Edgar headed out to meet a friend and to do a spot of sightseeing and Sadbh was sad to see them go.
We had a fun day regardless and scoured the house for all sorts of scary creatures and monsters.
We also got to chase bubbles in the garden while wearing wellies and a tutu. Well, Sadbh did anyway.  What better way to spend the day?

Sadbh’s voice is still very quiet and she did not want to wear her trach cap. Since she was wearing her humidifier nose she built up quiet a lot of thick secretions. As a result I gave her a saline nebulizer and read her a book. By the time the nebulizer was finished she was fast asleep in the armchair.

An hour later I had to wake her up as it was starting to get late. She wasn’t too happy until I broke out a Popsicle and this changed everything.

We got trach care out of the way as soon as Mommy arrived and Katie realized one of her biggest nightmares. We found a little insect next to Sadbh’s stoma and after further inspection we discovered it was a fruit fly. It was still moving a little.  Thankfully we caught it and can only imagine what would happen if it went inside.

After trach care we headed out for pizza with Sarah and Edgar. Sadbh knew that she was going to get ice cream so she demolished her pizza so she could satisfy her sweet tooth.

Bedtime was very late and she did not fall asleep until almost ten PM.






All the best,

Wayne, Katie and Sadbh

Sadbh’s update – August 19th 2014


Sadbh had a wonderful night and woke up shortly before Helen’s shift ended. She had a good chat with Helen and was delighted when Mommy came in to take over.

Sadbh had a dentist appointment first thing so we had to hustle to get out of the house and to her appointment on time.
The dentist was happy with her teeth and Sadbh managed to snag so many stickers and cool gifts on her way out.

As soon as we got home it was time for a saline nebulizer since Sadbh’s trach was extremely goopy. I had to suction quite a bit to try and clear it but unfortunately it did not clear 100%. She was fine and it did not slow her down.
Sadbh’s suction catheters come bagged and after stocking up her cabinet she managed to find a couple of these bags. Before I could get them off her she was wearing them like socks and was running around the house laughing her head off.
She even wore them when she took a nap and any attempt to remove them was foiled.

The rest of the day was spent searching through the house for monsters and forest creatures. We had so much fun playing and I was impressed with her energy and imagination.

Katie’s cousin, Sarah and her husband Edgar, came for a visit. Sadbh was shy and wanted me to play in her tent rather than sit and chat with our guests. As usual, she eventually came around and warmed up to everyone.

Bedtime was a nightmare tonight and Sadbh would not go to sleep. She finally fell asleep around ten.





All the best,

Wayne, Katie and Sadbh

Monday, August 18, 2014

Sadbh’s update – August 18th 2014


Sadbh slept like a log and woke up around seven. She was in a very good mood and despite having to fast for her surgery she did not ask for anything to eat or drink.

Check in at Children’s went well and Sadbh was well behaved despite the long wait.
Dr. Inglis stopped by before the anesthesiologist team came to go over the procedure and what to expect afterwards. He reassured us that we were making the right decision. We have had the upmost respect and confidence in Dr. Inglis since the first time we met him and we know that he has Sadbh’s best interest at heart.
Shortly after Dr. Inglis’s visit the anesthesiologist team came in and got Katie suited up in a bunny suit so she could walk Sadbh back to the operating room. Sadbh loved the bunny suit and out of nowhere she asked Katie to hop. We were cracking up.
It’s never been easy for Katie to watch Sadbh get put under however today was extremely difficult as all of a sudden Sadbh got very upset and tried to resist.
For the next hour or so, all we could do is wait. Finally the pager went off, so we set off to meet up with Dr. Inglis. The procedure went well and Dr. Inglis made the cut in her left vocal cord. Prior to making the incision he observed the movements in her cords to see if one was working better than the other. He determined that they were both working similar to each other however the left side was not as strong as the right, so with that he made the cut in the left vocal cord.
He went over the surgery in great detail and addressed all our questions thoroughly.
We had to wait another twenty minutes or so until Sadbh was ready to be brought back to the patient recovery room. She was so upset and in obvious discomfort. She had the IV in one hand and kept trying to grab at her trach asking for us to get the knockout gas out.
Since she was so upset she started to build up quite a lot of secretions in her trach so I got busy suctioning to clear it out. The secretions were slightly pink which meant there was some bleeding from the vocal cords. This was normal and as long as it was not red we were in good shape.

The suctioning gave Sadbh some instant relief so she kept asking for me to suction out the knockout gas from her trach. This went on for the next forty minutes or so and thankfully I had a big batch of suction catheters in the suction bag.
The nurse staff in the recovery ward is amazing and one of the nurses gave Sadbh a couple of popsicles just before administrating a dose of morphine. It still took a while before the morphine kicked in so Sadbh was still uncomfortable until it did.
Eventually she calmed down and devoured both popsicles before getting discharged.

Her voice is so much quieter than usual and a little raspy. Dr. Inglis explained that she will be like this for a week or so as the vocal cord heals and then she should have her full voice back.
We are going to give her a break from capping her trach at night for a week also but she should be able to tolerate the cap day and night as soon as they are healed.

Sadbh was in a much better mood for the rest of the evening but was definitely not herself.
We gave her a bath and got trach care done as soon as we could.

Kim and Finn stopped by to say hi and Sadbh perked up when they arrived. She really likes Finn and they got to spend a little while hanging out together.
The rest of the evening was spent eating more popsicles and after dinner she devoured a couple of bowls of ice cream.

Sadbh was out like a light an hour before bedtime so hopefully she will have a nice nights rest.






Thank you all for the support and well wishes.

All the best,

Wayne, Katie and Sadbh

Sunday, August 17, 2014

Sadbh’s update – August 17th 2014



Sadbh had a much better night and slept right through until half past seven. She was delighted to see Mommy sitting there next to her.
We had a nice relaxing morning sitting out on the back deck in the sunshine and Sadbh was very playful.

After lunch it was time to go to our friends Carey and Ron’s wedding ceremony. Sadbh looked beautiful in her dress and she could not wait to see Carey’s wedding dress. On the way into the church Sadbh got to pick a couple of flowers. By now she was quite tired and getting restless but fortunately she behaved and stayed relatively calm throughout the entire ceremony.

The reception was scheduled a few hours later so we headed home, got Sadbh all cleaned up and ready for trach care. At this stage she was extremely restless but we managed to get trach care done without any problems.

Kara, one of the great nurses from Children’s, came by this evening to watch over Sadbh. At first Sadbh did not want us to go to the reception but as soon as Kara arrived she could not wait for us to leave. Sadbh had a fantastic time with Kara.

It’s been really hard tightening up the germ free bubble that Sadbh lives in, especially in preparation for tomorrow’s surgery. While all of Sadbh’s friends had a wonderful weekend playing with each other we had to play it safe and keep her isolated from everyone. Because of this Sadbh does not get the interaction that she needs with kids her own age but it’s very important to keep her healthy ahead of the surgery. We are also very lucky to have a great group of friends that understand and support us.






All the best,

Wayne, Katie and Sadbh

Saturday, August 16, 2014

Sadbh’s update – August 16th 2014


Sadbh’s day started very early as Mommy accidentally set off the security alarm just after Danielle left. Once Sadbh was awake there was no hope in getting her back to sleep, especially since Mommy was up.

We had a busy morning taking care of things around the house and just after trach care Sadbh got to Skype with Sophia back in Germany. Sadbh was exhausted but very happy to chat with her big sister on the computer.

Our friends Carey and Ron are getting married this weekend and today they had a celebration picnic in a park by the lake. Sadbh fell asleep for a few minutes on the way but woke up just after we arrived. We had hoped that she might sleep on for a while since she was so tired but Sadbh is not one to miss out on a party.

Shortly after arriving at the party Sadbh spotted a couple of kids and went to ask them their names. She was quite pleased with herself.
When she was done making new friends it was time to play some miniature golf. She had so much fun and was obsessed with a mini house that was set up on stage three.
 
Bedtime was later than usual and despite the early start and lack of sleep Sadbh took her time in going to sleep. It was almost ten by the time she finally fell asleep.





All the best,

Wayne, Katie and Sadbh

Friday, August 15, 2014

Sadbh’s update – August 15th 2014


Sadbh slept like a log and woke up on time a few minutes after half past seven.
We had an early ultrasound appointment and Sadbh was excited to see her new sibling moving around inside Mommies tummy. 
It did not take long before Sadbh got bored but despite this she was extremely well behaved and still very excited to see baby Taco on the monitor.

The weather was dodgy today so Sadbh and I hung out at home all day. She got very tired around noon and wanted to take a nap. Once in her pajamas she was determined to bounce around her bed and taunt me through the monitor. I figured she would burn herself out but after a while it was very obvious that this was not going to happen so I changed her back into her clothes and we got busy playing around the house.

It was an exhausting afternoon, as Sadbh seemed to have so much energy. We did have a lot of fun and Sadbh had a fantastic time playing hide and seek.
Shortly after Katie arrived home we managed trach care but Sadbh wanted to watch Curious George afterwards. You could tell that her brain was melting from watching cartoons so we switched it off and not long afterwards she came back down to earth.

We had a fun evening and when it came time for bed Sadbh fell asleep very quickly.

Our friends Kim and Finn were due to return today to spend the weekend with us but since Sadbh’s surgery is scheduled for Monday Kim decided it would be best to stay with other friends to prevent Sadbh catching any colds or similar. We really appreciate Kim being so considerate but are very sad not to be able to spend the weekend with them.





All the best,

Wayne, Katie and Sadbh

Thursday, August 14, 2014

Sadbh’s update – August 14th 2014


We decided to give Sadbh a break from wearing the PMV and trach cap last night to allow her a good night sleep and as a result she slept great right up until quarter to eight.

She was aware that Sophia was leaving today and as soon as she was up and out of bed she asked if she could wake Sophia up.
Instead of disturbing Sophia, Sadbh headed upstairs and hung out with Mommy as she got ready for work. She was in a very happy mood and it got better when Sophia arrived for breakfast.

As Sophia was finishing up her packing Sadbh decided to make a card for her. She got busy with her colored paper, scissors, glue and a horse sticker. She also made one for Sophia’s parents but forgot to give it to her to take home. Later when she realized that she had forgotten it she decided that she would have to have her trach out soon so we could all fly to Germany to give Sophia’s parents their card.

Sophia and I got trach care out of the way as soon as possible and the girls enjoyed a fun filled morning together.
Soon it was time to head to the airport and after getting Sophia checked in we headed to the security gate to see her off. It was really sad and after a long good bye Sophia headed off through security. Sadbh kept calling out to her telling her that she loves her and misses her and to come back soon. Just as Sophia disappeared through security I noticed that she left her coat in the stroller. Sadbh noticed it too and at the top of her lungs she shouted “Sophia, you forgot your coat”. Thankfully Sophia was not too far in and was able to retrieve her coat with the help of the security guards.

Sadbh was fine throughout all of this but as soon as we turned to leave she got very upset. So upset that it took a while for me to calm her down before I could feel comfortable driving away. She was exhausted and not long after we got on the freeway she was fast asleep.

Sadbh woke up as I carried her out of the car and again she was extremely upset. Sadbh has a silent cry and since she cannot vocalize when she is upset she kept asking for Mommy by using baby sign. It was heartbreaking to see her so upset and after half an hour or so I was able to cheer her up.

As soon as Mommy arrived she explained how much she missed Sophia and did not want her to leave.

Just as Sadbh was going to bed she turned and asked Katie “who is coming tonight? Is it Helen?” When Katie informed her that Danielle was coming Sadbh responded with “tell Helen, I mean Danielle to keep this on me all night” referring to her cozy blanket. She is very much a character.

           




All the best,

Wayne, Katie and Sadbh