A Great Week

Daphne has made a lot of progress this week.  We are super proud of her.  I’m looking back on my journal from this week and noticed that she started the week off with only taking in 4 mL/hour of food.  Now she has worked her way up almost to the goal of 40 mL/hour.  What is really great about that is her chylothorax seems to be getting better even with increasing her feeds! 

Early on this week her chest x-rays, although not terrible, weren’t improving.  Her chest tube was draining very little and needed TPA three days in a row to drain at all.  Thursday morning Daphne finally had a very good chest x-ray!  She didn’t need TPA in her chest tube that morning.  Today she had another good chest x-ray.  Her time off of C-PAP has been increasing too.  She used to seem really tired by the time she was due to go back on C-PAP.  Now she has been tolerating it very well. 

This week speech pathologists have also started to get very involved in Daphne’s care.  Kids with long hospitalizations can start to get oral aversions so we are working on that.  I am not too worried about that (I am still so happy about the fact that she survived her two transplants!)  She does take her soother, put toys and fingers in her mouth so those are good signs.  We are working on getting her to taste rice cereal.  Not enough to actually feed her, just to get her used to the taste.  I can’t say she likes the cereal, but she doesn’t gag or cry, although she does purse her lips a lot. 

Another big event this week was taking Daphne for a walk around the hospital!  So far the only times she has left the PICU was to go to the OR or to get a CT.  This time she went to the Healing Gardens instead!  It did take two nurses and a respiratory therapist to accompany us, but it was still nice.  Daphne really seemed to take in all the new sites. 

Another step this week was that we have started to dress her again!  She was getting quite well known for being the baby wearing leg warmers all the time.  Now I have started to put shirts on her as well.  Button up shirts work the best to accommodate her C-PAP and her broviac.  She is still wearing her baby legs though, it is her signature look! 

Here are some more pictures from this week.  First, Rowan at dance class…

Rowan and Daphne playing with a balloon…

Daphne enjoying a bed bath… I really should have gotten video of this one.

2 Months Post-Transplant

I can’t believe it has only been one week since my last post.  It seems like so much has happened since.  Last week we were so hopeful that Daphne’s chylothorax was ending, but now its back.  So many of her chest x-rays looked good at the beginning of the week.  Wednesday, however, she had another bad x-ray.  Today it was even worst so Daphne had to have another chest tube put in.  This was a larger surgically placed chest tube.  She didn’t have to go to the OR to get the chest tube; Dr. Dicken did the procedure right in the PICU today.  The doctors are hoping that the chest tube will allow the fluid to drain and the lungs to inflate more.  Daphne has been doing well though, and although her chylothorax is not gone, her chest isn’t extremely wet.  We are still praying that it can go away on its own soon. 

Other events of this week include Daphne getting her JP drain removed.  This was the drain in her abdomen.  She also got her incision sutures removed.  This was not a pleasant experience for Daphne since it had been over 5 weeks since her last surgery and her skin had healed quite a bit, but they were all removed and her incision is healing very nicely.  Another issue has been her EBV count.  It is high again and they are monitoring it closely. 

I would have never expected Daphne to be in the PICU 2 months post-transplant.  It is definitely discouraging when things don’t go as well as we hope for.  But everyone at the PICU has been so good to us it really helps.  The nurses and doctors have been so amazing and caring toward Daphne. 

I’ll end with a video of Rowan making Daphne laugh. 

Chest tube out

Daphne started this week much the same.  Although instead of being exclusively on C-PAP she goes on trials on high-flow (these are the little prongs in her nose.)  Although one night she did struggle a lot even on C-PAP so she was put on Bi-PAP for a little while.  They did a chest x-ray and her chest was extremely wet.  Since her chest tube hadn’t been draining, this meant that her chest tube was plugged so they put TPA (a clot buster) in the line.  They have had to do this quite a bit as her chest tube is very small.  After the TPA took effect the chest tube started draining and the Bi-PAP was no longer necessary. 

Monday they decided to put in a new chest tube because the previous one was plugged again and her chest x-ray was not good.  They did put the same size tube in.  Here are some pictures from that day.  They show how much Rowan loves visiting her sister and it’s hard to tell from the pictures, but Daphne also loves the visits from her goofy sister.

Wednesday the site around the chest tube started leaking.  A chest x-ray showed that the tube had almost come out.  We weren’t allowed to hold her now or put her on high-flow.  The next day the chest tube wasn’t draining any fluid at all and the site was still leaking so they decided to take out the chest tube.  After that we were allowed to hold her again and she was allowed to go on high-flow trials again.  In this picture she is happily kicking her feet in the air. 

Friday we had some great news.  The site where Daphne’s chest tube was in barely leaked any fluid and her chest x-ray looked very good!  This means the chylothorax might be gone!  We can’t say it’s gone for sure just yet.  She will still need daily chest x-rays to watch for fluid accumulation.  We pray this is the end of chylothorax. 

Yesterday Daphne had another long visit with her sister that they both loved.

C-PAP

We have been dealing with the same things this week.  Daphne has a good day, then she doesn’t.  One day she has a good chest x-ray and then the next its not. 

Early this week I noticed that Daphne got a new tooth!  That was very exciting to see.  It’s a front bottom tooth. 

Unfortunately, after so many pretty good days, Wednesday we had a bit of a set back.  Daphne was working so hard to breathe that they had to put her on something called C-PAP.  That stands for continuous positive airway pressure.  It is actually the same thing people use for sleep apnea.  It helps inflate her lungs. 

It also didn’t seem like the chylothorax was going away quickly enough.  It is what is causing her chest to be so wet.  So instead of being on her special formula with medium chain triglycerides, she is NPO (no food).  In addition to this she was also given another medication to help dry up her chest, octreatide.  This new med is not compatible with much so she was taken off her morphine infusion!  She is still on morphine, just an oral dose.  She has handled the switch very well.  And although she is on a mask now, she doesn’t seem to mind.  We are hoping the CPAP will give her lungs a bit of a break and a chance to get stronger and that her chylothorax will go away soon which will also make it easier to breathe.