Home Again

Some pictures of Daphne’s time in the ICU. 

It was very difficult to see Daphne on a ventilator again, but fortunately she wasn’t on it for long this time. 

Soon she was her regular happy self. 

She was showing off all her new moves to the ICU staff in no time. 

Last picture in the ICU before being sent up to the ward!

Wearing the dress I made for her.

During her time on the ward Daphne did great.  The endoscopy did not show where the bleeding came from.  We were told the scope is unable to go all the way through the small intestine.  A way to see the small intestine would be to have Daphne swallow a capsule with a tiny camera in it.  Immediately I wanted to do whatever we could to find out what happened.  However we were told with all of Daphne’s surgeries there was a risk that the capsule could get stuck.  If this were to happen, for her, getting it out would require quite a major surgery.  Instead, we should first try a dissolvable capsule to see if she could pass it.  However, that could not guarantee that the second real capsule wouldn’t get stuck.  Also, she would have to be put under each time to get the endoscope to place the capsules inside of her.  On top of that, many of the things that could have caused the bleeding would not be seen if she wasn’t actively bleeding which she wasn’t anyway.  With all these negatives we decided not to put Daphne through extra procedures from which there seemed little to gain. 

Rowan playing foosball on one of her hospital visits. 

The sisters love each other so much!

Daphne was observed for a few more days and then she was discharged on Wednesday.  Since she has been home she has been very happy.  She is now a crawling baby!  She also loves to practice her standing. 

Rowan enjoying one of her favorite toys from McDonalds.  This thing is so annoying it should come with a warning label for parents.  On the bright side, when the battery finally died she didn't get upset. 

Daphne also loves to eat now.  I have been so used to having an NG tube fed baby that sometimes when she got cranky I would really be confused as to what was wrong with her.  After trying to get her to nap, to play, a clean diaper I would finally realize she might be hungry!  I’d place her in the high chair and she would just eat and eat happily.  She really loves cinnamon buns!

As for Rowan, she has actually been a bit sick lately.  Last Thursday her glands in her neck were swollen.  This Wednesday she had been throwing up a bit.  Yesterday she had a fever and was throwing up again.  The weird thing is that in between those events she seems to recover almost completely.  She has seen a paediatrician twice about this.  Today was another great day for her, she was full of energy and happy all day, although she did go to bed earlier than normal. 

This was Friday afternoon when Rowan wasn't feeling too good.  She really wanted to sleep in the patch of sunlight on the hardwood floor.  So I brought her a pillow and a blanket.  She slept there for 2 hours!  Then I carried her up to our bed. 

Intestinal Bleeding

Monday Daphne was discharged from the hospital.  The plan was to go to 5F3 every evening just before 8pm to get bloodwork done and to give her IV prednisone.  5F3 is the Stollery ambulatory clinic.  Prednisone is a steroid used to treat rejection.  

Tuesday went great.  Daphne was happy to be home and in the evening I took her to 5F3 for her prednisone.  We were back home in no time.  

Wednesday started great.  Daphne even crawled forward for the first time and she ate more dinner than Rowan!  That evening we decided to go to 5F3 as a family.  Walking down the halls of the hospital Daphne was giggling at her silly sister's antics.  Once we got to 5F3 Daphne threw up a tiny bit in her stroller.  That was strange because she hadn't done that in a while.  I picked her up and held her in my lap for the bloodwork and as the nurse started getting ready to draw it I felt Daphne wet her diaper.  Even my pants felt wet but I just thought it was a regular accident.  Then we immediately noticed that Daphne had gone completely pale.  Her lips were white!  Dr. Chatur (one of Daphne's pediatricians) happened to be there and she immediately went to the computer to check Daphne's latest hemoglobin.  As she walked out of the room I checked Daphne's diaper and saw that it was full of blood.  The nurse immediately called Dr. Chatur back into the room.  We put Daphne in a bed and Dr. Chatur got to work.  It is such a miracle both that we were at the hospital and that Dr. Chatur happened to be there.  

Brad had left the room with Rowan so she wouldn't be too scared.  Dr. Chatur called a code blue on Daphne even though she hadn't stopped breathing, she just knew that 5F3 isn't equipped for those kind of emergencies.  Very soon I was surrounded by a bunch of familiar faces.  The transport team nurses and doctors from the PICU were there and also some nurses from 4D.  I don't really remember what all they were doing there, but they were very busy.  Soon we were back in the PICU.  Daphne's hemoglobin was in the 40s so she was given some blood.  Daphne started to improve quickly.  She was even smiling and laughing soon.  They did give her more blood later on and also some platelets.  

Dr. Yap soon showed up and they did an endoscopy to see where the bleeding was coming from.  Unfortunately they couldn't find anything looking from either way.  Also, now she was intubated again. It was definitely hard to see her on the ventilator again and a bit heart breaking to be back in the PICU.  It still felt so familiar, like we hadn't been away that long.  

Thursday they continued to monitor her hemoglobin to see if she was still bleeding.  She had some dark brown poops indicating old blood but no more bright red ones.  She was kept on the ventilator for a while not because they were worried about her ability to breathe, but because they might do an angiogram which would require her to be intubated.  Since she was not actively bleeding the angiogram wouldn't see anything so it was canceled and Daphne was soon taken off of the ventilator.  

Daphne spent another night in the PICU and by the next morning she didn't look like a PICU patient anymore.  She was smiling and laughing, standing in her crib hanging on to the rails.  We were soon moved to 4D and her feeds have been restarted.   

Unfortunately I can't post the pictures from my camera on this post since I am using my blackberry tablet to write this.  This picture was taken with the tablet.  I will update next week when we know more about how long we will be here.  We are so thankful that this happened while we were here and that Daphne was so very well taken care of. 

Moderate Rejection

Monday started with Daphne’s regularly scheduled homecare bloodwork.  Tuesday we got a phonecall that her liver numbers were climbing.  We went to 5F3 on Wednesday morning to get more bloodwork just to be sure. 

Thursday is Daphne’s other scheduled homecare bloodwork, so we got more bloodwork done that day.  However, we also got a phone call that day that Daphne’s liver numbers were continuing to climb.  They scheduled a liver biopsy for Friday to find out why.  The other bad news was that now her PTT was also too high. 

PTT has to do with blood clotting.  This wasn’t too big of a concern immediately because the doctors assumed the sample had been contaminated, which is very common.  The sample was taken from her broviac line which is treated with heparin to keep it from clotting.  If the heparin wasn’t completely flushed from the line it could cause a high PTT.  The simple way to correct for that was to take her to get more bloodwork through an actual poke, which we did later in the morning (11am).  Unfortunately now the PTT was even higher than before!  But what is even stranger, was that the 8am bloodwork from homecare (through the broviac line) was much lower, almost normal!  It was all very confusing. 

The PTT being high was troubling and would be monitored, but it was also very inconvenient.  Transplant really wanted Daphne to get a biopsy quickly, but were worried the radiologist wouldn’t do it with such a high PTT (too much risk of bleeding.)  So we were sent back to 5F3 for some more complicated bloodwork Thursday evening, another poke to get an uncontaminated sample. 

They did go ahead with the biopsy on Friday on the condition that Daphne receive FFP (fresh frozen plasma) before, during and after the procedure.  The biopsy went fine.  The sight oozed a little bit so a pressure dressing was applied, but other than that it all seemed fine. 

Late Friday evening, the first bit of results came back from the biopsy.  Turns out Daphne has rejection again, this time the rejection is moderate.  Last time it was only mild.  This time its being treated with high doses of prednisone.  The great news is that after only one dose Daphne’s liver numbers showed immediate improvement! 

As for all the blood clotting numbers.  I have no idea what any of that means.  Even the thrombosis doctor said it is very strange.  He said that Daphne’s other blood clotting numbers showed no problems and that if there was a problem the other numbers should indicate that before the PTT is elevated.  But they will continue to monitor Daphne.  I am hoping it’s just nothing.  Right now I am more concerned with her liver numbers and happy that they are improving. 

Right now we are home on pass, but will have to return before 10pm for more IV meds.  Then we will stay overnight for early morning bloodwork.  The plan is for Daphne to be discharged by Monday. 

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 10^th 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!

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.