Nearly One Year Post-Transplant

I have been finding it very difficult to get to updating the blog. 

Here is a quick review of what we have been up to. 

Daphne enjoying her favourite breakfast, Nutella and toast.

Daphne and Rowan enjoying our last fall visit to Fort Edmonton.

Early October Daphne had to be hospitalized for the flu.  She recovered quickly from this illness. 

Rowan was a super hero for Halloween.

Rowan started Taekwondo lessons.

The most difficult thing we have been through lately is Daphne’s current hospitalization.  Halloween evening Daphne was doing just fine playing at her cousin’s house.  I did not take her out trick-or-treating.  She didn’t want to bundle up and it was brutally cold in Edmonton that night.  When we got home she went to bed easily but during the night I noticed she was very warm.  I took her temperature and she was 39.9⁰C.  I called the paediatrician on call at our paediatrician’s clinic.  I also called the paediatric GI doctor on call and Brad took her to the emergency room. 

In the emergency room, when she continued to get worst she was moved to the PICU.  In the PICU she needed blood pressure medication, oxygen, and even some asthma medication before they got her fever under control. 

Unlike other times she has been sick, this time it took her a long time to get back to her normal self.  She was lethargic for quite a few days.  Bloodwork showed that she had an infection in the blood, streptococcus pneumoniae.  The bug was so aggressive with her because she is immune-suppressed, she has had lots of steroids in the past making her not able to produce them as well on her own and also because she has had her spleen removed.  Most children are vaccinated for this one as well, but she was unable to get the vaccine within the first year of transplant.  She will be allowed this vaccine again soon.  I am so glad this isn’t one of the live-vaccines she is not allowed to have. 

Recovery has also seemed slow because balancing her electrolytes can be tricky.  Currently she is still an inpatient, requiring twice daily IV antibiotics.  She has been allowed to come home on pass in between doses.  Right now she is napping in her own bed at home.  Coming home on pass during a hospitalization really means a lot to all of us.  It helps us recharge, relax and feel normal again.

Some gifts from CFR cowboys in Edmonton this weekend. 

We really couldn’t have gotten through this week without the help of so many people.  Brad’s mom, his aunties and his sister have been babysitting and giving us food.  Brad’s dad has driven us around on a particularly rough day.  Neighbors have helped clear our driveway after a very heavy snowstorm.  A parking office employee gave me a free month pass after I had lost the one I just bought!  My work has also been flexible when I needed to leave early.  We could not do this alone.  Thank you so much everyone!