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. 

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. 

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.

Daphne Turns One!

Monday Daphne turned one!  We had a very quiet birthday at home.  Here is her first birthday interview. 

We have still been very busy trying to settle her potassium issues though.  Tacrolimus, her anti-rejection drug, has this side-effect with her.  Unfortunately we can’t decrease her tacrolimus yet or her liver numbers immediately respond to that.  So instead she gets more meds to deal with the potassium.  She gets sodium bicarbonate (AKA baking soda) and kayexalate.  Initially we were giving the kayexalate to her directly down her NG tube.  But after a call from Dr. Yap of high potassium on Thursday morning’s bloodwork we are now adding the kayexalate to her formula, waiting for at least half an hour for a brown precipitate to form at the bottom (thereby removing the potassium from the formula) and giving her the formula off the top.  It makes me feel like I’m in chem lab again. 

Although her bloodwork numbers have not been perfect, Daphne has been a very happy baby lately.  We have been incredible busy getting bloodwork done for her.  Since Thursday there have only been two days that she has not gotten blood taken!  We are very glad she has a broviac; she rarely needs to get poked now.  It can be easy to get discouraged with all these appointments but we do remember how far she has come and feel very blessed.  I also think of other families who live far away from Edmonton and again I feel very fortunate.  We can easily go to the Stollery for lab work, clinic visits and even admissions if we have to without completely upsetting our lives.  Plus, because we live in Edmonton, we have so much help.  We are so thankful for all the help.  Brad’s mom and aunties are constantly helping us out watching Rowan, helping around the house and bringing us food.  I don’t know what we would do without them.  We have also received meals and even flowers from our church family these past two weeks which has been so thoughtful. 

Rowan enjoying a ride in our new minivan. 

Anyway, more about the birthday girl…she has had an incredible first year, filled with lots of very tough moments, but also filled with lots of love.  And although all we are still busy trying to resolve a lot of her medical issues, I feel very confidant that she will get there. 

Potassium issues

This week has been a rough week.  First, I got really sick.  I needed Brad to come home early from work to take Daphne to her Monday transplant clinic appointment.  The next day I was feeling a little better, but I had lost my voice.  Unfortunately, we received a call that Daphne’s blood work from the previous day was not looking good.  Her sodium was too low and her potassium was too high.  I took Daphne to the Stollery lab to get the bloodwork done again from a poke in the arm instead of her broviac, the results are more accurate.  We waited around to hear the results.  Unfortunately the results were not good.  Daphne was admitted again on Tuesday.  She received some IV fluids to increase her sodium and kayexalate to bring the potassium down.  The next day she was discharged. 

Daphne and Rowan snoozing in our bed. 

 At home she has been very good.  No sign at all that there is something wrong.  However, Friday evening, we got a call that her potassium was too high again.  Right now Brad is bringing her into the Stollery to get more blood work and to see what we need to do.  High potassium is bad for the heart, so we need to stay on top of this. 

We have finally found a food Daphne loves.  Noodles!

Stomach Flu

I was hoping this blog would become very uneventful.  Monday I took Daphne to her weekly transplant clinic appointment and everything was looking very good.  Unfortunately, Monday night Daphne started throwing up.  She threw up quite a bit that night.  Tuesday we took Daphne to her pediatrician who immediately had her admitted to the hospital for dehydration.  It was nice being able to skip the emergency room.  It was a big disappointment to have to go back so soon. 

Daphne did learn how to drink pedialite out of a bottle during this hospitalization. 

She was given IV fluids to help re-hydrate her.  When we got to the hospital she started to get diarrhea as well.  During our first night there she also spiked a fever of 39.2⁰C.  The fever quickly went down, but it took quite a few days for Daphne to tolerate her feeds again and to get her electrolytes back where they should be.   The day before the stomach flu Daphne weighed 8.17 kg.  The next day she weighed 7.62 kg and after a week of diarrhea she got as low as 6.92 kg.  After that low weight they started replacing her fluids much more aggressively.  The next day she popped back up to 8.09 kg. 

All of this also happened the day after Brad went back to work.  Everyone was so helpful though.  Brad’s mom helped with Rowan everyday.  Brad’s sister looked after Rowan too and organized meals to be delivered to us.  Brad’s aunties also visited the hospital lots so I could take naps, which I really needed.  Daphne has started to prefer sleeping with mommy.  That meant we shared the tiny hospital parent cot most nights.  In the past I have insisted they give Daphne a full size bed for nights like that.  But now I do prefer the crib for safety.  I want to be able to leave her in a safe place if I leave the room to shower or make a cup of tea. 

Rowan is really having fun dressing herself these days!

Daphne was discharged Thursday after 9 days of hospitalization for stomach flu.  I was told that there were a number of transplant kids back in the hospital for stomach flu.  Edmonton is crawling with it.  Strange that no one in the family has been sick with it though.  Daphne will just be picking things up so much more easily than us.  Any advice on ways to boost immunity would be very much appreciated.   I felt pretty guilty that I let her get sick so soon after her initial discharge.  We are doing a major toy clean at the house to get rid of any lingering germs.  I have also started to pray much more specifically for Daphne’s protection against illness. 

Using a wrap instead of a stroller is a much better way to go for walks with an IV pole. 

New Feeding Pump

We have had a pretty quiet week at home.  Daphne had her first post-transplant appointment with the transplant team on Monday.   She will be having those weekly for a while.  Tuesday she saw her paediatrician.  Another appointment we will keep on a weekly basis for a while.  Today was busier though.  Daphne saw an occupational therapist for a swallowing assessment.  Then we were given a new pump to use with feeding Daphne.  I am very happy with this new pump.  It doesn’t require gravity at all, the pump and bag all stay in a little back pack and it has excellent battery life.  Now we aren’t stuck moving a pole around the house or tethered to an outlet all day.  I love it.  A minor setback today was getting a call that Daphne’s potassium was high again.  A high result could be coming from pulling the blood from her broviac, so we were told to go to a lab and get a peripheral blood draw instead.  It took two pokes, but we got the blood fairly quickly. 

I thought I would add some pictures from this week. 

Rowan enjoying the snow we've had!



Warming up inside with Welsh Cakes and Hot Apple Cider. 



Daphne's usual happy self!

Brad helping Daphne do some of her exercises. 

Tummy time.

Rowan and Daphne playing drums.