Sadbh’s update – March 9 2016

Today was a very long, stressful and exhausting day.

Sadbh had lots of coughing fits throughout the night, especially earlier on. The coughing fits became less frequent as the night wore on but when they came they lasted for five to ten minutes.

She had a slight fever after she woke up so we waited until her pediatrician’s office opened and made an appointment.

Dr. Hathaway was quick to get us in and after checking out both kids decided to give Sadbh a stronger dose of steroids and a Racepinephrine nebulizer.  She needed us to stick around for two hours to see how Sadbh managed with the Racepinephrine and during this time she consulted with the on call ENT doctor at Children’s.

Dr. Inglis was off today but he had briefed his team on Sadbh in the event that she would be admitted for care.

After Dr. Hathaway and Dr. Johnson (the on call doc at Children’s) had consulted they felt it was best that we bring Sadbh in to ER for further evaluation.

Due to Sadbh’s symptoms, both Katie and I had anticipated that a visit to Children’s was on the cards so we headed home to grab an overnight bag and headed off.

We spent over five hours in the ER at Children’s and had to explain our situation to five different doctors or nurses.

By the time we were done they concluded that Sadbh’s lungs were in good shape and that the croup that she was dealing with was isolated to her vocal cords.

They told us that we had done a good job taking care of Sadbh so far and gave us a prescription for two doses of a stronger steroid to give as needed. We were also told that it would take another week or so before Sadbh would be feeling right.

Both kids were tired and miserable throughout this experience.

Traffic home was a disaster and by the time we got home the kids were complete zombies.

We quickly got them ready for bed and both were out in no time.

Unfortunately Sadbh’s blood oxygen level was dipping into the low 90’s and it was not long before her coughing fits returned in full force.

Katie and I set up her oxygen and also got her saline nebulizer going. It helped slightly but we both feel that it is going to be a very long night.

New photos.

Sadbh photos from March 9 2012.

Sadbh photos from March 9 2013.

Sadbh photos from March 9 2014.

Sadbh photos from March 9 2015.

Cillian photos from March 9 2016.

Cillian photos from March 9 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 8 2016

Sadbh had a much better night but had a huge coughing fit that lasted a couple of hours. She slept in our bed so we could keep a very close eye on her and thankfully this helped us keep on top of things when she needed us.

It was a very long and exhausting day. Cillian is as sick as Sadbh but he seems to be managing quite well despite everything.

Sadbh on the other hand is having a much more difficult time managing her secretions and seemed to spend the day coughing.

We kept her medicated with two doses of steroids and Ibuprofen or Tylenol, as needed, a couple of saline nebulizers and lots of fluids.

Thankfully her blood oxygen level was normal all day as was her heart rate. Her respiratory rate was much higher than usual though.

Bedtime was a chore, as she did not want to wear her pulse ox probe. She was quite delirious from everything and poor Katie was wiped out by the time Sadbh finally settled down.

It is going to be a very long night with the amount that she is coughing.

New photos.

Sadbh photos from March 8 2012.

Sadbh photos from March 8 2013.

Sadbh photos from March 8 2014.

Sadbh photos from March 8 2015.

Cillian photos from March 8 2016.

Cillian photos from March 8 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 7 2016

Friday and Saturday nights were tough for Sadbh and she had a lot of stridor when she slept.

We had our suspicions that she might have been fighting something but since she did not have a fever or any other symptoms we figured we would just keep a close eye on her and hope that she would be fine.

Shortly before 1 this morning she started to struggle to breathe and immediately we knew that she was in distress.

Katie responded quickly to Sadbh to see what she could do while I ran downstairs to locate her oxygen tank and Ambu bag.

We also hooked her up to the Oximeter and her blood oxygen level was at 80 when it should be in the upper 90’s if not at 100%. Anything below 93% could be dangerous, especially for an extended amount of time greater than a minute or two.

We also ran the shower on hot to help clear her airway with steam and after giving her a dose of steroids she started to calm down.

By now her blood oxygen level bounced back up into the mid 90’s and she seemed to be a lot more comfortable.

Her breathing was still very labored and after twenty minutes or so we moved her into our bed and gave her a saline nebulizer to help clear her airway.

It took an hour or so for her to get closer to her baseline but she was definitely fighting something and her lungs sounded very congested.

With her surgery only a few hours away we contacted Dr. Inglis and his team to get his take on the situation and to figure out our next steps.

He was very upset when he heard the news and agreed that we should cancel the surgery. He did want to meet with us to go over the situation so we arranged to meet him between surgeries in the afternoon.

When Sadbh woke up this morning she was in a great mood and had so much energy. She was disappointed to learn that she was not going to have surgery.

Our friend, Kathy, came by in the afternoon to look after Cillian while the rest of us headed over to Children’s Hospital to meet with Dr. Inglis.

Thankfully we did not have to wait for long and got to meet Dr. Inglis shortly after we arrived.

He checked Sadbh’s lungs and after we went through her ordeal he assured us that, considering everything, it was good that this happened now rather than after the surgery.

He offered to have Sadbh admitted to stay in overnight if we wanted but agreed that she would be better off at home with us under close observation.

While he was pleased with Katie and my response last night he did say that if her blood oxygen level were to drop down to the 80’s again that we would need to call for an ambulance immediately and have her rushed to the ER at Children’s.

Once she dips down to that level the amount of time to get her clear of any permanent damage is greatly reduced.

We also discussed our next steps for Sadbh.

Option 1 would be to hold off on surgery for another trial period to see how she does with this current bug and anything else that comes her way.

Option 2 would to have a trach put back in.

Option 3 would be to have another laser cordotomy to open up her airway further. Then wait for a period of time to see how she does and then decide on surgery to close up her stoma. This will certainly damage her voice further and since her voice is already very soft and low it might result in a complete loss of voice.

As one could imagine, today was a complete roller coaster for us all and we have yet to see what tonight has in store for us.

I suppose the silver lining in all this is that it happened before surgery and now we understand that it was not the right time for Sadbh to have her stoma closed up. 

New photos.

Sadbh photos from March 7 2012.

Sadbh photos from March 7 2013.

Sadbh photos from March 7 2014.

Sadbh photos from March 7 2015.

Cillian photos from March 7 2016.

Cillian photos from March 7 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 6 2016 – Photos

New photos.

Sadbh photos from March 6 2012.

Sadbh photos from March 6 2013.

Sadbh photos from March 6 2014.

Sadbh photos from March 6 2015.

Cillian photos from March 6 2016.

Cillian photos from March 6 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 5 2016 – Photos

New photos.

Sadbh photos from March 5 2012.

Sadbh photos from March 5 2013.

Sadbh photos from March 5 2014.

Sadbh photos from March 5 2015.

Cillian photos from March 5 2016.

Cillian photos from March 5 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 4 2016 – Photos

New photos.

Sadbh photos from March 4 2012.

Sadbh photos from March 4 2013.

Sadbh photos from March 4 2014.

Sadbh photos from March 4 2015.

Cillian photos from March 4 2016.

Cillian photos from March 4 2015.

All the best,

Wayne, Katie, Sadbh and Cillian

Sadbh’s update – March 3 2016

Sadbh’s surgery to close up her stoma in her neck is scheduled for next Monday and since Dr. Inglis gave us the green light last week we have been talking with Sadbh to keep her spirits up and to reassure her that there is nothing to worry about and that this surgery is a big step in the right direction.

On our way home this evening Sadbh was looking quite sad so I asked her if everything was all right. She responded with “I’m worried about surgery”. I asked what would she be worried about and she explained, “what if I cannot breathe after they close my stoma, just like when I was a baby”.

It was heart breaking to hear her say this and I wanted to stop the car to give her a comforting hug but unfortunately I was on the freeway and stopping was not an option.

For the rest of the journey home we talked about her fear and I comforted her by explaining that she had nothing to worry about.

Obviously, so many things can happen during surgery but Dr. Inglis is fantastic and we know he will take great care of Sadbh next Monday.

New photos.

Sadbh photos from March 32012.

Sadbh photos from March 3 2013.

Sadbh photos from March 3 2014.

Sadbh photos from March 3 2015.

Cillian photos from March 3 2016.

Cillian photos from March 32015.

All the best,

Wayne, Katie, Sadbh and Cillian