Status 2

This has been a long and very stressful week.  Monday started out fine with our regular blood work and appointment with the transplant team.  Later on I started to get worried because Daphne took a nap at 4pm that went until 8pm and then needed to go to bed at 8:30 already. 

The next day we were out and about lots.  Daphne wasn’t quite her regular happy self; she just seemed to want to nap all day.  In the evening I was definitely worried because she again napped at 4pm and then when she stirred at 7pm she was not happy that I got her up to feed and change her.  She would have preferred to go immediately back to sleep.  When I put her back to bed she was very relieved and fell asleep immediately.  

Wednesday I called the transplant coordinator and she said I needed to bring her into emergency.  At emergency she received albumin and lasix again to help her ascites and she was admitted into hospital. 

It looks like we will have to wait for a transplant with Daphne as an inpatient.  Daphne’s liver has just deteriorated so much she will probably need albumin and IV lasix every other day.  The sleepiness is also because of toxins accumulating in her bloodstream.  A healthy liver should be removing toxins from the body but hers isn’t. 

This afternoon we were let home on pass.  We plan to drop by the hospital tomorrow again but don’t plan on staying again until Monday morning.  It is difficult to wrap my head around what life will be like living in the hospital while we wait.  I had fully anticipated a long stay after transplant but was hoping to be at home until then.  Being admitted to hospital changes Daphne from being status 1 to being status 2.  Her doctor said she is currently the sickest status 2 patient.  This should help Daphne’s chances of getting a liver. 

Just a few pictures of our hospital stay so far. 

  

Rowan visiting Daphne in the emergency room. 

This is my mom.  She took some time off of work to come help us out.

They were having a Halloween party this morning so Brad brought Rowan in her lion costume.  She had a great time at the party. 

And here is our precious angel happy and awake at the Halloween party too (for a little while – she slept through most of it though.)

She sure gets a lot of compliments on her long eyelashes!

A week without the broviac

This week has been a little busy, but not stressful.  It is a relief not to have that leaky broviac anymore.  The site has been healing wonderfully.  Its not even covered with anything at this point.  That also means she could bathe this week!  She hadn't been able to have anything but bed baths with the broviac.  Here are some pictures of her enjoying her bath time.  Rowan was helping out too.

The drawback of not having the broviac was giving Daphne all the pokes.  She had three pokes this week.  Monday was her weekly blood work.  Daphne's electrolytes were a little off, so she got blood work on Thursday again to check on them.  Friday she had another albumin infusion.  She didn't like the pokes of course, but they did work relatively well.  Before the broviac blood work was a nightmare.  The lab techs were always having trouble finding veins and would often need more than one poke for one set of labs.  Nurses would also have lots of trouble finding veins for IVs, but not this week fortunately.  Here is a picture of Daphne getting her albumin infusion.

Daphne has been a very happy, content baby this week.  We have had a really good week.  Here are some more pictures from this week.  Rowan and Daphne wearing their matching monster pajamas.

Rowan decorating her chocolate house for Halloween. 

Rowan getting ready for her dress-up party at dance class.

Although we had a good week with Daphne we are still eagerly awaiting that special call from the hospital.  Her doctor is too.  Daphne's albumin levels were actually in an acceptable range, but he wanted to top her up to prepare her for transplant.  Even when I would bathe Daphne, I couldn't help but be very careful and thorough, thinking every bath could be her last one before transplant. 

Broviac removal

This last week has been a busy one.  The dressing on Daphne’s broviac needed to be changed daily, and would still need to be patched up in between with extra gauze when it would leak through. 

Wednesday we ended up taking Daphne to emergency because the broviac site started to bleed quite a bit.  Up until then it was always leaking clear/yellowish fluid.  The dressing was changed and we were sent home. 

Thursday was our clinic appointment with the transplant team.  We went to get blood work done first, but the broviac wouldn’t draw any blood.  It has two lumens on it and one wouldn’t even flush.  We went to our appointment anyway and were then sent to get a chest x-ray and then to get blood at the outpatient lab.  They did a very good job at the lab and only needed to poke Daphne once.  We went back to the clinic again and then we were told they would be admitting Daphne to remove her broviac.  With how much it was leaking infection was a risk, and now with it not working there was no reason to keep it. 

We kept Daphne NPO all day.  That means she was not allowed to eat or drink anything.  Hospital parents know very well the nightmare that is NPO.  Daphne actually handled it pretty well.  At around 4pm they told us just to feed her because it looked like they couldn’t fit her in.  She hadn’t eaten since 8am.  It was very disappointing that we had to starve her all day for nothing.  I have been very pleased with how well Daphne has been treated by everyone in the medical community except for the NPO situations.  It is often not planned well. 

The next day she was put on NPO again and she was able to go into surgery at 11:30am.  Right after surgery she of course was very hungry.  After I fed her she was happy and playful.  After that she did nap a lot.  The last two days were pretty exhausting for her.  While she was admitted she also got some albumin to treat her ascites. 

Today she had her dressing changed again and the site was leaking a lot less.  That was such a relief.  I am glad that the broviac site will have a chance to heal now.  The drawback is that weekly blood work will be much more stressful than it was before. 

The following are some pictures from this week.  Rowan and Daphne getting their faces painted just for fun, Daphne hanging out in the hospital and the last one is the birthday present Rowan had made for me while I was in the hospital with Daphne!

Some milestones

This week was another good week overall.  Her Monday appointment with the transplant team went very well.  Daphne is just under the 50^th percentile for height and weight (after subtracting 0.7 kg for fluid in her tummy.)  The dietician was very encouraged by this.  She said that with most babies with biliary atresia that is not the case at this point. 

Some thing we have been struggling with this week is Daphne’s broviac.  It is leaking quite a bit of fluid.  Daphne just isn’t clotting as she should.  We have been getting the dressing changed often.  We also had some trouble with her ng tube.  Her formula was just too thick for the tiny tube.  This was solved easily with a larger gage tube.  Putting in Daphne’s ng tube sure does cause me a lot of stress.  She has pulled it out a number of times and each time I reinsert it seems more stressful than the last.  Daphne just fights it more and more each time. 

On a happier note, we had two milestones this week.  Daphne got her first tooth.  She has her top, right canine.  I’m hoping she gets the top left canine next, for symmetry and for the Halloween costume possibilities!   Even more exciting news is that on Thursday she scooted on her bum for almost a metre!  Now we are going to need to get serious about baby proofing the house.  Not exactly an easy task with a three year old who loves to collect tiny things such as marbles, pebbles and silly bandz (elastic bands.) 

Here are some pictures of Daphne’s dresser and a quilt given to Daphne from our church with a very special Bible verse on it.  I’ve also included some pictures of us this Thanksgiving long weekend. 

Some clotting problems.

Daphne’s broviac site has still been leaking quite a bit and so we went to the hospital yesterday to see Dr. Yap and have the dressing changed.  Dr. Yap ordered a plasma infusion to help with her clotting and for her to get a pressure dressing on the site.  She also got some lasix to help with her ascites.  She napped through half of her infusion (so did I actually!)  For the rest of her infusion we played mostly.  Daphne has been a really good happy baby this week.