Saturday, 28 April 2012

10th Anniversary

This has been another great week.  We have been very busy doing regular family things.  Daphne did give us a very difficult weekend; she decided to practice her crawling in the middle of the night!  For hours!  Monday night her sleeping habits become more tolerable.  She can crawl backwards a bit, not forwards yet, but she is very eager to get there.  Other than, like I said, we have been busy with regular stuff!  Brad is painting Daphne’s room.  I will post pictures once he is all done.  I have suddenly gotten into sewing.  Daphne now has a cute dress and matching bonnet.  I will post pictures once I finish a matching diaper cover.  I also indulged in a long, leisurely pedicure at a salon this week.  Friday Brad and I celebrated our 10th wedding anniversary!  It’s hard to believe it has been a decade already.  Looking forward to many more decades!

Here are some pictures from this week. 
Friday Daphne did not want to sleep on her own, so instead she snoozed on my lap while Brad and I stayed up to watch a movie. 

Rowan enjoying some ice cream at the Earth Day festival at Fort Edmonton Park. 

Smiley angel!

Friday, 20 April 2012

Back to Normal

Daphne was discharged from the hospital on Sunday.  It has been great to be home again.  Her liver numbers aren’t perfect, but they are improving.  She seems to need a lot of tacrolimus.  Daphne is now at 6 mg twice a day.  This week we skipped transplant clinic again, since Daphne had been in the hospital until Sunday anyway.  I am very happy to say I have little to report this week medically for Daphne.  She has kept me super busy with her active, happy self. 

Rowan has been bouncing constantly this week!

Rowan and Daphne playing at the train table.

Daphne is not crawling yet, but she can scoot around a bit and is reaching for things more and more.  I think she is really close to crawling. 

Friday, 13 April 2012

Mild Rejection

This week was supposed to be an easier week.  Daphne had a week off from transplant clinic.  Unfortunately, Monday started with her broviac not working.  The homecare nurses couldn’t get blood out of it.  So we were sent to the hospital on Monday.  First Daphne got a chest x-ray.  That showed that the broviac was still in place.  That meant there must have been a blood clot in it and so the broviac was treated with something to break down the clot.  That worked great. 

We were hoping that our broviac problems would be the only thing we would have to deal with that week.  Unfortunately, Tuesday we got a call that her liver enzymes were too high.  Daphne was to be admitted to hospital that day.  We were told she was probably dealing with infection or rejection.  They did start her on IV antibiotics immediately just in case it was infection.  We were sure glad her broviac was still working. 

The next day Daphne got a liver biopsy to see what was going on.  After how much we have been through with Daphne we were not that stressed about the actual procedure.  But it is still hard to hand Daphne over for any procedure.  The nurse assisting with the biopsy was so sweet to me though.  I really appreciated it.  And the anaesthetist was also so kind and sweet to Daphne.  I am constantly amazed at just how many good people there are at the Stollery. 

Not many people look this cute in a hospital gown! 
 The biopsy showed mild rejection.  Usually this is treated with high doses of steroids, but Daphne’s EBV count has been too high for that to be safe.  So instead they will be dealing with the rejection by increasing her dose of tacrolimus (her anti-rejection drug).  We are still waiting for more biopsy results to come back.  A test that they are still doing is one to see if the EBV virus has attacked her liver.  The Infectious disease doctor said that this was very unlikely though. 

This is a picture of Daphne with one of the transplant surgeons.  Dr. Bigam performed both of Daphne's transplant surgeries.  We will alway be incredibly grateful to him.  During her second transplant her heart stopped beating and Dr. Bigam did chest compressions to keep her alive with the help of Dr. Tang.  You would think she would be a little happier to see him though!  To be fair Daphne had just had her biopsy in this picture and hadn't eaten in 14 hours. 

On the plus side, her liver numbers have quickly improved since being admitted.  Perhaps there was a bit of an infection as well and the antibiotics have helped.  She will be on antibiotics until Sunday night.  Her tacrolimus dose is quite high at this point too.  She gets 5 mg twice a day.  Another plus is that we do get to go home on pass a bit every day since the biopsy.  She gets her IV antibiotics at noon, 8pm and 4am.   So we do spend the night, wait around until she has had her noon infusion and then go home until about 7:30pm.  It is nice to be home, even if it is just for a little bit.  I never miss a chance to leave on pass.  I feel a bit like a teenager trying to get out of class early when I ask the doctors to go home on pass. 

Rowan loves climbing in Daphne's hospital bed to play with Daphne. 

Saturday, 7 April 2012

Settling Down

We have had a much slower week with Daphne’s medical care. Monday she had her appointment with the transplant team.  That went well.  She is gaining lots of weight and actually needs her formula watered down a bit.  She has really started to enjoy eating solids, that probably has something to do with her weight gain.  She has been causing trouble by pulling out her NG tube a couple of times this week and pulling off her broviac dressing once this week. 

In this picture you can see the broviac line in her chest.  We use this to get her twice weekly bloodwork without poking her.  This week it hasn't been working quite so well.  I hope it doesn't have to be removed so soon.  You can also see how nicely her scar is healing. 

Daphne's first playground visit post-transplant. 

Just accessorizing before breakfast. 

She loves to feed herself.  Here she is eating wild rice. 

Of course we dyed some Easter eggs this week. 

Daphne standing at the train table.  She loves taking apart all the track.