Sadbh's daily update: September 2016

Friday, September 30, 2016

Sadbh’s update – September 30 2016

Sadbh had a bit of a rough night. Her blood oxygen and heart rate were stable throughout the night however she was working quite hard to breathe.

Around half past one she woke up complaining of a headache and this is quite typical when she has a tough time breathing.

She was a little grouchy when she woke up but she seemed well enough to go to school.

We scheduled an appointment with her pediatrician for after school and thankfully her lungs seemed to be clear however Dr. Hathaway did notice that Sadbh has an ear infection. She was confident that Sadbh could fight it off without the need of meds but she prescribed medicine for it since it was the weekend and incase things got worse.

We gave Sadbh a saline nebulizer and a steam bath before bedtime to help her clear out as much gunk out of her lungs as possible. She did well but ended up having a huge coughing fit.

Bedtime was easy as she was so tired.

New photos.

Sadbh photos from September 30 2011.

Sadbh photos from September 30 2012.

Sadbh photos from September 30 2013.

Sadbh photos from September 30 2014.

Sadbh photos from September 30 2015.

Cillian photos from September 30 2016.

Cillian photos from September 30 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Thursday, September 29, 2016

Sadbh’s update – September 29 2016

Sadbh is doing much better however she still has a lot of gunk that she has to clear.

This causes her to have a lot of coughing fits but all in all she is on the mend.

We still have her sleeping in with us so we can keep a close eye on her. This works quite well as we do have to respond to her numerous times throughout the night.

New photos.

Sadbh photos from September 29 2011.

Sadbh photos from September 29 2012.

Sadbh photos from September 29 2013.

Sadbh photos from September 29 2014.

Sadbh photos from September 29 2015.

Cillian photos from September 29 2016.

Cillian photos from September 29 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Wednesday, September 28, 2016

Sadbh’s update – September 28 2016

Sadbh had another good night and felt good enough to go to school.

Katie met with the principle, teacher and the school nurse this morning to discuss Sadbh’s situation over the past week and to bring them up to speed on how to care for Sadbh if needed.

She had a good day and only needed to go to the nurse once. The nurse was able to clean Sadbh’s neck and to apply a fresh dressing to her stoma.

Seattle schools ended two hours earlier today and it was just as well. When I picked Sadbh up from school she was completely knackered and could not wait to get home and take a nap. She first had lunch but soon complained of a headache so I got her confortable on the couch and applied a cold damp towel to her forehead. She was soon out like a light and slept for almost two hours.

The rest of her day was good, but before bedtime she was complaining of a pain in her ear. I hope she doesn’t have an ear infection.

New photos.

Sadbh photos from September 28 2011.

Sadbh photos from September 28 2012.

Sadbh photos from September 28 2013.

Sadbh photos from September 28 2014.

Sadbh photos from September 28 2015.

Cillian photos from September 28 2016.

Cillian photos from September 28 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Tuesday, September 27, 2016

Sadbh’s update – September 27 2016

Sadbh slept great but had a slight fever when she woke up. She was also still congested and since it was draining through her stoma we decided to keep her home from school.

She was in a much better mood today and as a treat we both headed to the cinema to watch a movie after dropping Cillian off with a sitter.

Sadbh and I had a wonderful time and started to plan our next movie date immediately after.

She still had a lot of congestion throughout the rest of the day and even her little brother started to feel sick with a fever in the evening.

We gave Sadbh some Tylenol and a saline nebulizer before bed and as soon as she hit the pillow she was out fast.

New photos.

Sadbh photos from September 27 2011.

Sadbh photos from September 27 2012.

Sadbh photos from September 27 2013.

Sadbh photos from September 27 2014.

Sadbh photos from September 27 2015.

Cillian photos from September 27 2016.

Cillian photos from September 27 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Monday, September 26, 2016

Sadbh’s update – September 26 2016

Sadbh had a good night however she was very congested when she woke up.

She was having a tough time clearing her airway so we decided to keep her at home.

We held off on giving her steroids but gave her Albuterol via her nebulizer and this seemed to help her clear some of her congestion.

Sadbh was in an amazing mood all day and was full of love and laughter.

By evening she had developed a slight temperature so there is a good chance that we keep her home from school tomorrow also.

New photos.

Sadbh photos from September 26 2011.

Sadbh photos from September 26 2012.

Sadbh photos from September 26 2013.

Sadbh photos from September 26 2014.

Sadbh photos from September 26 2015.

Cillian photos from September 26 2016.

Cillian photos from September 26 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sunday, September 25, 2016

Sadbh’s update – September 25 2016

Sadbh slept well and woke up feeling well. She is still congested so we gave her another dose of Steroids and Albuterol.

It was another day of mood swings so Katie brought her to the zoo to cheer her up.

By evening she was completely wiped out and hardly touched her dinner. Her face was flush and pink so Katie brought her up and gave her a bath.

She passed out moments after going to bed.

Her breathing sounded much better than before but we are going to keep a very close eye on her throughout the night.

New photos.

Sadbh photos from September 25 2011.

Sadbh photos from September 25 2012.

Sadbh photos from September 25 2013.

Sadbh photos from September 25 2014.

Sadbh photos from September 25 2015.

Cillian photos from September 25 2016.

All the best,

Wayne, Katie, Sadbh and Cillian

Saturday, September 24, 2016

Sadbh’s update – September 24 2016

Sadbh had a much better night, thanks to the medicine.

The medicine however has its downsides. The steroids tend to make you very irritable, aggressive and very difficult to please. The Albuterol amps you up, makes you hyper and gives you so much energy. The two of these combined in a 5 yr old is a recipe for trouble.

All day long Sadbh was bouncing off the walls and going through severe mood swings.

It was extremely difficult for Katie and I to deal with and to maintain our patience.

We tried on numerous occasions to get her to take a nap but it was impossible due to the Albuterol.

We even went for a walk around Green Lake with Sadbh in the stroller in the hopes that she would pass out, unfortunately this did not yield the desired results.

Bedtime was quick and after one last inhaler of Albuterol she passed out from sheer exhaustion.

New photos.

Sadbh photos from September 24 2011.

Sadbh photos from September 24 2012.

Sadbh photos from September 24 2013.

Sadbh photos from September 24 2014.

Sadbh photos from September 24 2015.

Cillian photos from September 24 2016.

Cillian photos from September 24 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Friday, September 23, 2016

Sadbh’s update – September 23 2016

Sadbh’s medication eventually kicked in and she became a lot more comfortable. Her heart rate, respiratory rate and blood oxygen levels stabilized however she was still working harder than normal to breathe.

The on call doctor from Children’s never did call us back so we decided to bring Sadbh to bed so she could get some well deserved rest.

Her night was better than expected but when she woke up she was still exhausted and extremely fussy.

We decided to keep her home from school and immediately contacted Dr. Inglis at Children’s to schedule an appointment. We also scheduled an appointment with her pediatrician.

It was a very long day and we spent most of it the hospital and clinic.

Dr. Inglis discussed three options that we need to consider for Sadbh since her airway is prone to swelling when she gets sick.

The first option would be to keep her stoma open a while longer in the hope there is some medical advancement for airway management, valves that would allow air flow without impacting voice etc.

Another option would be to put the trach back in to reduce the risk of airway blockage.

The third option would be to consider using a C-Pap machine for when she sleeps to help keep her air flow where it needs to be.

We are considering combining the first and last options.

He want’s to hold off on closing Sadbh’s stoma for a little longer to see how Sadbh does.

Dr. Hathaway checked Sadbh over to see if there was a risk of pneumonia and after administering Albuterol she was satisfied that Sadbh’s lungs were clear and that she was dealing with an inflammation of her airway. She prescribed Albuterol and advised us to keep up her steroid usage for the next three days to help keep her airway open as much as possible.

Sadbh was exhausted from the crazy day visiting hospitals and clinics. By bedtime she seemed to be doing better than she was last night.

We hope that she has a better night and gets plenty of rest.

New photos.

Sadbh photos from September 23 2011.

Sadbh photos from September 23 2012.

Sadbh photos from September 23 2013.

Sadbh photos from September 23 2014.

Sadbh photos from September 23 2015.

Cillian photos from September 23 2016.

Cillian photos from September 23 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Thursday, September 22, 2016

Sadbh’s update – September 22 2016

Sadbh had a very rough night last night and worked very hard to breathe. We brought her into our bed so we could keep a close eye on her.

Around three in the morning she woke up complaining of a headache which did not come as any great surprise.

She was exhausted when she woke up. We decided that she was well enough to go to school but it was a struggle to get out the door in time.

Katie left Dr. Inglis a voice mail to let him know of the developments and he called back immediately with advice and his direct phone number. He also renewed Sadbh’s prescription for steroids to help with her airway.

School went well and she had a couple of play dates to look forward to afterwards.

The first was with her friend Ellie-Bea at the zoo and the two girls had so much fun.

Later in the evening Katie and I had a meeting at the school to review the curriculum with the teachers. Suzie took care of the kids and since it was Katie’s birthday we went for dinner on the way home.

The kids had a great time with Suzie and Clodagh and bedtime was fairly easy since they were both so exhausted.

Unfortunately Sadbh started to experience difficultly breathing not long after going to sleep.

We were on our way home with Suzie called us and when we arrived Sadbh was struggling to breathe.

We had collected her prescription for steroids on the way home and this was to help open up her airway.

Suzie did an amazing job keeping Sadbh calm and even endured numerous bouts of puking.

We gave Sadbh her steroids as soon as we could and a short time later we also gave her some Tylenol to help stabilizer her. Her respiratory rate was very high, as was her heart rate, however her blood oxygen level stabilized after giving her oxygen.

We contacted the on call otolaryngology specialist at Children’s to see if we should bring Sadbh in so we are currently waiting to hear back from him on our next steps. Sadly Dr. Inglis is not working tonight, as he would be quick to respond and with the right advice.

Obviously we are hoping that Sadbh stabilizes for the night and that she can avoid having to go into hospital.

New photos.

Sadbh photos from September 22 2011.

Sadbh photos from September 22 2012.

Sadbh photos from September 22 2013.

Sadbh photos from September 22 2014.

Sadbh photos from September 22 2015.

Cillian photos from September 22 2016.

Cillian photos from September 22 2015.

All the best,

Wayne, Katie, Sadbh and Cillian