Rowan Turns Four and Broviac Removal

The first major event this last little while was that our sweet, amazing first born turned four!  I am constantly falling in love with this sweet, crazy girl again and again!  I can’t believe how fast she is growing up.  Whenever I pick her up from places like playschool or Sunday school, it takes me a while to locate her.  I realize I keep scanning the room for my little toddler Rowan, after a few seconds I remember to scan the room for my little girl Rowan (usually the tallest kid in the room!) 

Purple birthday pancakes!

Not too please with her blue birthday pancakes.

We had a wonderful Rainbow birthday party for Rowan on Saturday.  Lots of people were able to make it!  There were 10 kids and 5 babies and they all seemed to have a great time.  Luckily the weather cooperated!  We had lots of room in the yard for all the kids to play.   And a big thankyou to Rick for taking all the pictures that day!

Bouncy house fun!

Slip and slide!

Twister!

The kiddie pool was a big hit too.

Auntie Gladys was Daphne's buddy while mom and dad were busy hosting the party. 

She loves her bear "Peachy."  A gift from the ward when she finally left the PICU. 

Cake time!

You can't have a rainbow party without a rainbow cake!  Hope you are not afraid of consuming lots food colouring!

Dessert number two.  Rainbow Jello!  Thanks Cathryn for spending the day setting 6 different jello layers!

The next week we had nothing planned.  Unfortunately Daphne’s broviac broke again on Monday.  This time we choose to have it removed not repaired.  This took quite a bit of waiting around.  We couldn’t get OR time until Thursday.  This was a bit annoying, but on the other hand it feels so much better to not be an emergency case.  Once we were in the procedure went quickly.  We left the hospital at 1pm. 

This will mean Daphne will have to get peripheral pokes for her weekly bloodwork.  Friday’s bloodwork went really well though.  Instead of going to a local lab we will be driving to the Stollery where the lab technicians have more training and experience with little ones. 

Rowan tagged along for Daphne's bloodwork.  She was such a good sport.  Daphne cried and fought a bit when it came time for the poke, but the lab techs found the vein fast and in no time she was back to her usual happy self. 

Removing the broviac feels like a real step forward.  We are really encouraged by how well she is doing.  Now if only she could get more interested in her sippy cup she could lose that NG tube as well.

Broken Arm, National Blood Donor Week, Broken Broviac

The last two weeks have been a blur of activity.  Last week’s major event was Daphne falling out of her bed.  It happened Wednesday evening.  She didn’t seem that upset, but she wouldn’t crawl.  The next day she got an x-ray which showed a greenstick fracture in her right wrist.  Her doctor did not think the fracture was bad enough to require a cast or splint.  She has recovered quickly from it already.  The first two days she refused to crawl, but other than that she didn’t seem bothered.  She held toys with that hand and even used it to pull herself up to standing.  By the third day she started to crawl a bit with it, although when she got tired she started to crawl with her right elbow instead.  Now she seems back to her normal self.  She is crawling all over the place and walking around furniture.  One of her favourite activities is to empty her dresser of clothes.

Our other activities last week was participating in Canadian Blood Donor Week.  On Tuesday Daphne, Rowan and I spent some time at the blood donor clinic here in Edmonton and did some interviews with local news channels.  I was very surprised by just how many we saw.  We were interviewed by Shaw, Global, CTV, City TV, and CBC.  A picture of Daphne and I also made it into the Edmonton Journal. 

Here is a link to the longest interview aired.

http://www.youtube.com/watch?v=UlY2xfBxOso&feature=youtu.be

The need for blood is always there.  Daphne is alive today because of many people.  Amazing doctors and nurses and medical staff played a huge role in this, but they still couldn’t do their job without the donations from regular people.  It’s a simple way for the rest of us to help out. 

Another major event this week happened Thursday.  It was Rowan’s last day of playschool and I had NO appointments scheduled.  I was looking forward to getting tons of stuff done while Rowan was at playschool.  However, in the morning while the homecare nurses were trying to flush her broviac line, the line cracked.  We clamped the line, cleaned it and covered it up with tegaderm.  In my broviac education we were told to go to the emergency room if the line is damaged in anyway.  I did get Rowan ready for playschool first and then Daphne and I left for the hospital.  The transplant coordinator got us into 5F3 (so glad we could by-pass the emergency room!)  There some nurse educators were able to repair the line.  The process for repairing the line seemed pretty straight forward.  The nurses knew exactly what they were doing.  Daphne hardly noticed them working on it, she was too mesmerized by Toopy and Binoo on Treehouse.  We did have to return four hours later, after the glue had set to see if the line was working and it was.  It will be nice that her weekly bloodwork can still be taken without poking her for it. 

Another thing that happened this past week was letting our monthly parking pass expire.  This might sound like a mundane occurrence to include in this blog, but to me it feels monumental!  We have been renewing our monthly parking pass since October.  During her PICU time we kept two parking passes.  Since her transplant discharge every time the pass was about to expire it seemed like something would bring Daphne back in.  With daily parking costing $15 dollars renewing the pass just made more sense.  However, this time when the pass was about to expire, there was no need to renew it!  Daphne is down to monthly visits with the transplant team.  Monday was the first time I had to pay for parking as I left the parkade.  I’m sure the parking attendant had never seen someone so happy to pay $7 for parking for two hours.  It’s just such a concrete reminder to me of how far Daphne has come!

Summer Happenings

It finally feels like summer is really here.  We have been busy out and about it seems.  We love visiting “The Horsie Park” also known as Fort Edmonton. 

We have also been to the zoo.

We have also been spending time in the backyard.

Today we did the Stroll for Liver at Emily Murphy Park.  We had a great turn out.  A big thank you to all those who supported “Team Daphne!”  We raised over $3000 and had a great morning outside today. 

As for Daphne she has been doing great recently.  She is an absolute delight!  It seems since she has become such a good crawler she is so much more content.  This week she has also gone from continuous feeds to bolus feeds.  That means instead of having her formula pumped into her all day, its now done in 4 meals during the day and 5 hours at night.  Its so  much nicer letting her crawl around without being connected to a pump all the time. 

Some very important changes were made in her meds this week as well.  It turns out one of her meds was given to her in liquid form which means it had sorbitol in it.  Turns out sorbitol is a laxative and should never be given to babies.  I am so glad they discovered this mistake and corrected it.  The med has been changed to the powdered form.  I am hoping her electrolyte issues resolve now.  Changing a few less diapers a day will also be a bonus!

2012 Stroll for Liver - "Team Daphne!"

 

Come and join us for our annual Stroll for Liver/LIVERight Challenge on Saturday June 2nd at Emily Murphy Park.

Whether you want to walk, run, or bike its all about having fun and raising awareness and support for Liver Health.

Registration - 9:00am
... Run/Walk - 10:00am - 12:00pm

Stay tuned for more information!
Let’s make the 2012 Stroll for Liver bigger and better by bringing new ‘Strollers’, get 5 new people to fundraise for the Canadian Liver Foundation and win a prize, ask us how!

There will be prizes for the top fundraisers and everyone that raises more than $125 will receive a CLF dry fit t-shirt!

For those who register, please join us on "Team Daphne!"

For those who are unable to join us but would like to support liver research go to the following website

http://my.e2rm.com/teamPage.aspx?teamID=283694&langPref=en-CA&Referrer=http%3A%2F%2Fwww.liver.ca%2Fclf-chapters%2Flocations%2Falberta%2Fedmonton-and-northern-alberta%2Fspecial-events.aspx

or go to

http://www.liver.ca/


Please support "Team Daphne!"

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.