Getting ready for Christmas

Daphne’s broviac surgery last Saturday went well.  Her broviac has two ports in it which is very helpful.  Right now her broviac is her only line.  It is great to see her with less lines.  At one point I think she had six lines for IV access.  Her broviac surgery was done by Dr. Dicken, who has shown amazing care and attention to Daphne.  This was her third time in the OR with him and we were able to send her along with full confidence that she was being well taken care of.  We later found out that Julie, a good friend of ours from church, was one of the nurses in the OR too.  Another great comfort to us. 

Sunday we did get some bad news.  Daphne has a JP drain in her abdomen for any fluid that might accumulate in there.  The fluid draining out of her had been tested and it tested very high for lipase.  Lipase is from the pancreas.  This means that her pancreas may have been nicked during one of the surgeries.  Her lipase levels in her blood are still good which means her pancreas is still functioning well, just that lipase is leaking out into her abdomen.    The transplant surgeon didn’t seem worried; he said the JP drain will have to stay for atleast a month to six weeks to make sure the lipase doesn’t stay in.  The lipase is an enzyme for digesting food so it isn’t good to have in the abdomen.  I sure hope this issue resolves quickly, not cause I am impatient (this process has taught me to wait) but because I worry about the damage a digestive enzyme can do in her abdomen. 

Sunday wasn’t all bad though.  We got to hold Daphne!  It usually takes 4 people to get her from the bed into our arms safely since she is on the ventilator and the lines to her IV pole aren’t very long, but it is worth it.  She was also very smiley and playful on many occasions this week.

Monday Daphne had a metabolic cart study.  It is a study to see how many calories Daphne needs.  Up till now her calorie needs were very low, but on Monday they were much higher.  This is a wonderful thing!  Her body is gearing up basically, although I’m sure a dietician could explain it much better than I can. 

During the beginning of the week there were some bumps.  She had fevers at times, some of her liver numbers were up, her WBC went up again, she tested positive for EBV virus, she did not respond well to weaning off her morphine and sedation well one day, she also did not respond well to continual weaning from the ventilator, but somehow none of those things seemed that bad and the week has still ended well.  Some of her antibiotics were changed and now her temperature seems to be under control and her WBC has gone down.  As for EBV she is being treated for it.  The EBV was not that surprising since we already knew both of her donors had tested positive for it, which means at some point her donors had gotten “Mono”.  As for the morphine and sedation, they had been weaning her off of them for a bit and at one point she just seemed to need a break.  It was kept steady for a few days and now they have started to wean her off them slowly once more.  The same goes for the ventilator.  Today she was ready to start weaning off of it again but more slowly this time. 

Because some of her liver numbers were up she did get a biopsy this week.  It does not show signs of rejection or any signs of infection so far.  Since then her liver numbers have started to go down again.  She has also been tolerating her feeds really well.  I have run out of expressed breastmilk so now she is on Pregestimil.  Also her TPN is off.  TPN is total parenteral nutrition, which means nutrition through an IV.  I recently learned that TPN is hard on the liver, so maybe this explains some of what has been going on.  Daphne also had another CT scan this week to check for collections of fluid.  The images did not show any collections. 

As for today (Friday) she looks so beautiful.  She amazes us everyday.  The only thing today is that there was some bilirubin in her JP drain. 

Also I just had to include some pictures of Rowan at her Sunday School Christmas Concert.  I have to confess, she did not attend regularly leading up to it and I didn’t even know which songs they were doing, so she was very ill-prepared to say the least, but she was adorable in her leopard print dress and bright pink puma high tops she calls her “pumped up kicks.”  She also did not like staying put with the other kids and obviously has not had lessons on sitting like a lady when wearing a dress in front of everyone at church. 

Oh well, she wasn't the only one not singing, but she had a blast catching up with her cousin Carys afterwards.

She does miss her sister though.  Before bed she talks about her the most.  Tonight she was sobbing about it.  Brad and I take turns during the day being with Daphne and with Rowan and a Grandma or Aunt takes over for the evening so we can both put Rowan to bed.  The other day Brad told her that they (him and Rowan) were going to pick me up earlier from the hospital so we could have dinner together and then drive down candy cane lane.  She did not like this idea because then Daphne would be all alone.  It was so sweet that she thought of her.  Once we explained that Grandma would be at the hospital with Daphne she was ok with it.